summary,pid,coverage,@schema,revisions,documentation,id,identifier,accessibility,provenance,issued,observations,version,enrichmentAndLinkage,modified,structuralMetadata
"{'title': 'KPIC', 'abstract': '9000 people aged >40 characterised with knee pain, other sites of pain, depression and anxiety, quality of life and medications etc.', 'contactPoint': 'mszwz@exmail.nottingham.ac.uk', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'UNIVERSITY OF NOTTINGHAM', 'identifier': '607db9c6e1f9d3704d570d93'}, 'keywords': ['Pain Hub', 'Alleviate', 'Pain']}",11dee486-22d2-4cf4-a955-512249e61645,{'spatial': ['https://www.geonames.org/6269131/england.html']},"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '6ad3077e-87dd-429e-9934-ed9fe92c2bbc', '2.0.0': '0056a5c8-4f98-4e9e-b74a-bd498be71c0d', 'latest': '0056a5c8-4f98-4e9e-b74a-bd498be71c0d'}","{'description': '9000 people aged >40 characterised with knee pain, other sites of pain, depression and anxiety, quality of life and medications etc. A subset of 400 have clinical examinations with x-rays, ultrasounds, quantitative sensory testing (QST), DNA and other biomarkers. Followed up at baseline, year 1, 3 and 6.  The 6-year follow-up is ongoing with COVID-19 infection and lockdown measures. \n\nBaseline data can be used to examine risk factors for early onset KP and to identify KP phenotypes. Subsequent prospective data, at least to Year 3, will allow examination of the natural history of KP and risk factors for incidence and progression.', 'associatedMedia': ['https://pubmed.ncbi.nlm.nih.gov/28934932/']}",0056a5c8-4f98-4e9e-b74a-bd498be71c0d,https://web.www.healthdatagateway.org/dataset/0056a5c8-4f98-4e9e-b74a-bd498be71c0d,"{'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'format': ['csv'], 'vocabularyEncodingScheme': ['LOCAL']}, 'access': {'accessRights': ['https://localhost'], 'dataController': 'University of Nottingham', 'jurisdiction': ['GB-ENG']}}","{'temporal': {'timeLag': 'NOT APPLICABLE', 'accrualPeriodicity': 'STATIC', 'startDate': '2018-09-01'}}",2021-09-27T15:10:28Z,"[{'observedNode': 'PERSONS', 'measuredValue': '9000', 'observationDate': '27/09/2021', 'measuredProperty': 'Count'}]",2.0.0,,2021-10-05T16:25:43Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'SARS-CoV-2 viral sequencing data (COG-UK data) - Lineage/Variant Data - Wales', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'abstract': 'The dataset provides information about SARS-CoV-2 variants of concern and\nvariants under investigation in Wales. This includes phylogenetic and mutational information about samples.', 'keywords': ['COVID-19', 'SARS-CoV-2', 'SAIL', 'core-res', 'CVSD', 'National Core Study', 'NCS'], 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '5f3f98068af2ef61552e1d75', 'name': 'SAIL'}}",602cbc9b-0113-4712-8c4a-0efe8d86b77c,"{'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'https://www.geonames.org/2634895/', 'followup': '0 - 6 MONTHS', 'pathway': 'COVID-19'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'4.0.0': '8670f9ea-d01f-4f41-9b01-be96f015b4db', '5.0.0': '00a784aa-ea3a-4a57-9612-81b0745e0763', 'latest': '00a784aa-ea3a-4a57-9612-81b0745e0763'}","{'description': 'The dataset provides information about SARS-CoV-2 variants of concern and\nvariants under investigation in Wales. This includes phylogenetic and mutational information about samples.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://saildatabank.com/about-us/overview/']}",00a784aa-ea3a-4a57-9612-81b0745e0763,https://web.www.healthdatagateway.org/dataset/00a784aa-ea3a-4a57-9612-81b0745e0763,"{'usage': {'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'USER SPECIFIC RESTRICTION'], 'isReferencedBy': ['n/a'], 'resourceCreator': ['Public Health Wales'], 'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['NHS WALES NATIONAL CODES'], 'language': ['en'], 'format': ['SQL Database Table'], 'conformsTo': ['LOCAL']}, 'access': {'dataProcessor': 'SAIL Databank', 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'deliveryLeadTime': '2-6 MONTHS', 'jurisdiction': ['GB-GB'], 'accessRights': ['https://saildatabank.com/application-process/'], 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'dataController': 'SAIL Databank'}}","{'temporal': {'timeLag': '1-2 MONTHS', 'startDate': '2021-05-07', 'accrualPeriodicity': 'MONTHLY', 'distributionReleaseDate': '2021-06-15', 'endDate': '2021-06-15'}, 'origin': {'collectionSituation': ['OTHER'], 'purpose': ['STUDY', 'CARE'], 'source': ['EPR']}}",2021-11-01T11:40:25Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '27500', 'observationDate': '02/07/2021', 'disambiguatingDescription': 'The population type is SARS-CoV-2 variants of concern and\nvariants under investigation in Wales. This includes phylogenetic and mutational information about samples.', 'measuredProperty': 'SARS-CoV-2 VOC VUI '}]",5.0.0,"{'tools': ['https://conceptlibrary.saildatabank.com/'], 'qualifiedRelation': ['ALL'], 'derivation': ['Not Available']}",2022-01-19T15:14:05Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 4, 'structuralMetadata.tableName': 4, 'structuralMetadata.tableDescription': 4, 'structuralMetadata.dataElementsCount': 34, 'structuralMetadata.columnName': 34, 'structuralMetadata.columnDescription': 34, 'structuralMetadata.dataType': 34, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '0983ac30-580d-45cc-812c-13c2dba5e192', 'description': 'Genomic variant of concern calls table', 'name': 'GENOMIC_VOC_CALLS', 'dataElementsCount': 10, 'dataElements': '76b3501c-f490-4697-b973-3cec99c4f39c, 6e7d0525-ef67-4046-8d21-737b326c0d1e, d1737b21-0f65-43d6-a9c2-febc1265f4e9, 4b899a96-d132-4c3a-a32c-09d881d9905f, 1e25a46a-f54b-4555-b012-3c43caaac6cc, 1c923f02-cc9b-4306-a4ad-c26e8a49b400, cdc8623d-e743-406f-83eb-de15d4fd97b5, 7d733f83-25ad-4681-954b-a73fd56f7a79, a9fa7752-6384-4b6a-9de8-a459c71c68be, e2b1aff9-e630-4532-b4c0-1b566d49cd0a'}, {'id': 'b811050c-e71e-4f60-90a8-93dc6251b9f5', 'description': 'Genomic summary table', 'name': 'GENOMIC_SUMMARY', 'dataElementsCount': 5, 'dataElements': '0893b020-8f33-4bd8-b26f-d19008f8bd60, 2c04b5b5-2c9a-4700-9d1b-3e99325c2b58, c9bfe32a-ac08-40db-9eae-1433dca88638, 5b144f98-d876-4e28-8381-5de3c7b6b73d, cb1abecb-9d3f-4722-bcf6-516132d5ef5a'}, {'id': 'd96ed8a1-826d-4791-8fba-8301c981e03c', 'description': 'Genomic ALF table', 'name': 'GENOMIC_ALF', 'dataElementsCount': 14, 'dataElements': 'c8a8be9c-d769-4d56-8d2a-9354e7775871, ce84efc4-b4c4-480e-91b9-d7106c68316f, f50139e7-004b-48a4-b628-ba6e315d8ad5, 1930becd-9db0-4842-b672-08764bb3b976, 658f99cd-59a8-479b-b2d8-28c1e7e28092, 368d2889-8c43-4355-9cb4-a44bba6ccdf7, 429d6e38-3a82-436e-aec6-4ea1918f34d3, b2e5034a-52a2-4065-83e9-29e3a91369d8, ee2eb299-0cf5-4419-8f7b-3c491e55b5c8, 13eecb57-c023-43c7-8d53-14079a1db889, 9234b39b-be45-44e7-898f-a0f691cac1f7, a2e5f493-bb0d-4e2e-b1b5-4af39665b5a2, d9ccd11a-6c6e-43ff-8359-9a7b8b990037, 5aadc5cc-9d02-4f47-b7c7-8a6ae0e4aae4'}, {'id': 'c6899c35-e26b-4deb-b941-b6b329d6f2d5', 'description': 'Genomic mutations table', 'name': 'GENOMIC_MUTATIONS', 'dataElementsCount': 5, 'dataElements': 'cb175a08-f789-49e0-8d5f-85fe90df70da, 15a97525-f38b-4408-b4f6-c7a9a5f36f8a, 60584116-d3a4-447c-91eb-d4752be86045, 487be747-8d81-44ee-83f1-e97a6c4890d9, db2c1792-3a55-4726-ac0e-d1e4028b44cd'}]}"
"{'title': 'Mental Health Inpatient and Day Case - Scottish Morbidity Record (SMR04)', 'contactPoint': 'phs.edris@phs.scot', 'publisher': {'name': 'PUBLIC HEALTH SCOTLAND', 'memberOf': 'ALLIANCE', 'identifier': '5f8992a97150a1b050be0712'}, 'keywords': ['NHS Scotland', 'Daycases', 'Psychiatric Inpatients', 'Mental Health', 'NCS', 'CO-CONNECT', 'National Core Study', 'COVID-19'], 'abstract': 'The Mental Health Inpatient and Day Case dataset (SMR04) collects episode level data on patients who are receiving care at psychiatric hospitals at the point of both admission and discharge.'}",24de9d1a-1f48-4c10-b8fc-a3bd7449e191,"{'followup': 'OTHER', 'typicalAgeRange': '0-150', 'spatial': 'https://www.geonames.org/2638360/scotland.html', 'pathway': 'Secondary care data only', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '624d19b7-cb26-4a4f-b0d0-59fe8a5687d0', '6.0.0': '00e1b694-3072-4d25-ab2d-a1de59629ae3', '1.0.0': '212f2b33-5188-419c-86a7-2c8241fe1aaa', '2.0.0': '28376eb7-654f-4076-81c6-743d89d4e712', '3.0.0': 'bfc6e7c5-a81b-4fe2-95b5-d108a48d7d67', '5.0.0': 'b9f460e1-cee9-4f52-b464-26b421886939', '4.0.0': 'd0137466-d07e-4bfd-817b-198086b9fa13', 'latest': '00e1b694-3072-4d25-ab2d-a1de59629ae3'}","{'description': 'The dataset contains a wide variety of information such as patient characteristics, mental health diagnosis, length of stay, destination on discharge, whether they are admitted under Mental Health Legislation and any previous psychiatric care. Patient identifiers such as name, date of birth, Community Health Index number, NHS number, and postcode are included together with a wide variety of geographical measures. This includes the Scottish Index of Multiple Deprivation and Carstairs measures, census output area, NHS Board, Electoral Ward and Parliamentary constituency.', 'associatedMedia': ['https://www.ndc.scot.nhs.uk/Data-Dictionary/SMR-Datasets/SMR04-Mental-Health-Inpatient-and-Day-Case/'], 'isPartOf': 'Scottish Morbidity Record (SMR)'}",00e1b694-3072-4d25-ab2d-a1de59629ae3,https://web.www.healthdatagateway.org/dataset/00e1b694-3072-4d25-ab2d-a1de59629ae3,"{'access': {'deliveryLeadTime': 'VARIABLE', 'dataProcessor': 'National Services Scotland', 'accessRequestCost': ['Research Projects - https://www.isdscotland.org/Products-and-Services/eDRIS/', 'Bespoke data analysis requests - https://publichealthscotland.scot/contact-us/bespoke-data-analysis-requests/'], 'jurisdiction': ['GB'], 'accessService': 'Scottish National Data Safe Haven - https://www.isdscotland.org/Products-and-Services/eDRIS/', 'accessRights': ['https://www.informationgovernance.scot.nhs.uk/pbpphsc/', 'https://www.isdscotland.org/Products-and-Services/eDRIS/', 'https://publichealthscotland.scot/contact-us/bespoke-data-analysis-requests/'], 'dataController': 'Public Health Scotland'}, 'formatAndStandards': {'vocabularyEncodingScheme': ['NHS SCOTLAND NATIONAL CODES'], 'language': ['en'], 'conformsTo': ['NHS SCOTLAND DATA DICTIONARY'], 'format': ['text/csv']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['National Services Scotland', 'Public Health Scotland'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'NOT FOR PROFIT USE']}}","{'temporal': {'accrualPeriodicity': 'MONTHLY', 'timeLag': '1-2 MONTHS', 'startDate': '1981-01-01'}, 'origin': {'purpose': ['CARE'], 'source': ['EPR'], 'collectionSituation': ['IN-PATIENTS']}}",2020-01-10T22:06:52Z,"[{'observedNode': 'EVENTS', 'measuredValue': '629541', 'disambiguatingDescription': 'Episodes', 'observationDate': '17/01/2021', 'measuredProperty': 'count'}]",6.0.0,"{'qualifiedRelation': ['UK Biobank', 'Scottish Longitudinal Study']}",2021-10-28T14:40:48Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 5, 'structuralMetadata.tableName': 5, 'structuralMetadata.tableDescription': 5, 'structuralMetadata.dataElementsCount': 82, 'structuralMetadata.columnName': 82, 'structuralMetadata.columnDescription': 82, 'structuralMetadata.dataType': 82, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '64f02959-926b-4952-b6b8-c0ce9c2238ad', 'description': 'Diagnostic Section', 'name': 'General Clinical Information', 'dataElementsCount': 18, 'dataElements': 'd467ed99-5b60-48ef-b2ef-789b5ef3e44e, 64959a36-de4a-48d6-8c0b-f57fbcce3a3d, 1141d71c-7524-4eef-97c8-ebcd7d9f7be5, 78327c9e-cdf7-4e96-b22f-ab053ddd857c, 7272e319-d35d-450f-88b8-c20d96e13d3c, 6cf1c38a-1986-4565-966d-f7a89f188863, 9f9b7400-23c9-4079-99e8-69397273c64e, e1f612e4-b6a6-47ae-a5cc-0b4427c2efd9, b472959b-4fe6-4ca7-bcb7-2a6280e986cc, 81640c02-5504-4f44-a27c-ff6360e6a666, c5d88b61-e183-4de5-8f79-91cd20f43657, 1ccf2931-737f-4ade-a32e-2d217f5c1aba, de90497d-f20a-4c78-b5ca-1a6fcfc09d42, 47070807-2c9b-4295-a164-5b72f0b4a4a5, eb19a41c-d570-48d7-88e4-3e6ea8dba618, 6f0b645a-8001-4d44-9e0b-9596122505cf, fe6f829e-212b-4279-8489-ff44d8683005, f7977840-b3c7-480a-8ca5-6059b776af13'}, {'id': 'f91d613e-0bfd-4c71-909a-03e7550edd5a', 'description': 'Episode Management Data', 'name': 'Episode Management Data', 'dataElementsCount': 23, 'dataElements': '78288207-bd63-4928-8ecb-f6198f48ed35, f493ad2a-bb27-475c-81b9-6cc5657a3eea, 55aaf0c8-fb85-4e4c-85c1-e8cacaf20410, 89a9c381-e694-4c5a-9ce3-ca6f95102a5a, 02eb98c5-2e22-4dd7-a19a-b0c3bf72fe8f, 6f812377-b866-4bcd-af51-8815002fdbd4, 04e067c4-df5c-4870-a61e-cf681fa29b34, 34e17355-649b-4c7e-95bf-f58c61b0d5f5, 780cac28-c1c1-453a-bde2-f93958ad53f4, 7988cdf9-cd70-4402-afc4-8b4724e27a76, ff56330e-94ac-4925-b60c-6e1530e0c747, 824a69ce-97ca-457d-82eb-064679953a18, 07784dc5-a83d-42fe-9aa3-f0c66ae5407a, a620ed7d-208f-4025-a9fa-e755410a2fd8, 8f085fb6-3947-488c-bea8-aabc1199d93a, 77e73a44-55a3-4daa-85d9-21fc2d6e4328, c9a2bd61-0fd4-46f8-abb0-53b0aa258378, 3070f4d9-43be-4fce-b76e-fdbc51b80bcd, d8f30d1f-1657-48b5-b70b-f2a5b0b28e4c, 5b8e8a72-e675-45af-aa37-e808ec8bb390, 4b090014-d01d-4f55-b684-c65f5b4da632, 4881b819-690f-46fd-a2e3-a3af487c1279, 45f68968-29f0-4d7c-b9ab-a2fdbd32e0ef'}, {'id': '9d76e87f-f7f8-4cb2-9ff6-db054bbc7b5a', 'description': 'An SMR04 is generated for patients receiving care in Mental Health Specialties when the following events occur. 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"{'title': 'National Paediatric Diabetes Audit - Parent and Patient Recorded Experience measures', 'keywords': ['Diabetes', 'Paediatric', 'NPDA', 'Experience', 'PREM', 'Audit'], 'abstract': 'Patient and parent captured experience data on paediatric diabetes unit activity captured February to July 2019.', 'publisher': {'contactPoint': 'DataSharing@hqip.org.uk', 'name': 'HQIP', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'DataSharing@hqip.org.uk'}",b0979e07-3331-408f-853b-5eeba80ce8f9,"{'typicalAgeRange': '4-19', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'England and Wales'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'b14d6ab0-8efa-4969-9928-ad6f0fab8263', '3.0.0': '00ffee70-43d6-4a81-8568-32b0b6d9e39c', '1.0.0': '70a32bc3-2b5f-487d-820f-4539a2e3a177', '2.0.0': 'fe872375-2401-4de1-9650-d4139cf5793a', 'latest': '00ffee70-43d6-4a81-8568-32b0b6d9e39c'}","{'description': 'Patient and parent captured experience data on paediatric diabetes unit activity captured February to July 2019 throughout England and Wales. The dataset includes questions about both the health checks received and diabetes outcomes achieved. No personal identifiable information is collected, but the identity of the unit where the patient was treated is included in the dataset.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",00ffee70-43d6-4a81-8568-32b0b6d9e39c,https://web.www.healthdatagateway.org/dataset/00ffee70-43d6-4a81-8568-32b0b6d9e39c,"{'access': {'accessRequestCost': 'An indicative cost will be provided to applicants upon application. Charges will be basedon workload associated with the application and will be charged following sharing of the data. They will include a standard £350 + VAT admin fee to cover consultation andprocessing of the application, plus a £350 + VAT per day of analyst time– chargeable inhalf day increments. These costs are limited to RCPCH activitiy in the administation and preparation of requested data. HQIP will also charge according to their costing model.', 'accessRights': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-datahttps://www.rcpch.ac.uk/sites/default/files/2018-05/npda_data_access_may2018v2_0.pdf', ''], 'jurisdiction': 'GB-GBN', 'deliveryLeadTime': '2-6 MONTHS'}, 'usage': {'dataUseLimitation': 'NO RESTRICTION', 'dataUseRequirements': 'PROJECT SPECIFIC RESTRICTIONS'}, 'formatAndStandards': {'format': ['CCSV', 'XLXS', 'STATA', 'SPSS'], 'language': 'en'}}","{'origin': {'purpose': 'CARE', 'source': 'OTHER', 'collectionSituation': 'OTHER'}, 'temporal': {'distributionReleaseDate': '2020-11-12', 'accrualPeriodicity': 'BIENNIAL', 'endDate': '2018-08-01', 'timeLag': '6 MONTHS PLUS', 'startDate': '2018-02-01'}}",2020-01-13T14:29:29Z,,3.0.0,,2021-04-14T08:10:56Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'PTCL Biobank', 'keywords': ['PTCL', 'Hematologic neoplasm (disorder)', 'UKCRC Tissue Directory', 'Biobank'], 'publisher': {'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE', 'contactPoint': 'sw227@leicester.ac.uk'}, 'abstract': 'Collection of samples and data across the following diseases: Hematologic neoplasm (disorder).', 'doiName': 'Not Available', 'contactPoint': 'sw227@leicester.ac.uk'}",19fa25a7-c15d-441c-b635-ad49043e7a96,"{'physicalSampleAvailability': ['SALIVA', 'TISSUE', 'WHOLE BLOOD'], 'spatial': 'England', 'typicalAgeRange': 'Not Known'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '292812aa-8254-4afa-9242-858e73a548cd', '3.0.0': '0121c132-5be6-414e-853b-885ff301854f', '1.0.0': 'dde07739-b848-4a6f-8d5e-69a120331b8a', '2.0.0': '7c1fa7b2-2b76-4952-884e-8ef6f845c488', 'latest': '0121c132-5be6-414e-853b-885ff301854f'}","{'description': 'An Observational Study of Peripheral T cell Lymphoma: Establishment of a Biobank and Database.\nThe outcome of this study will be a biobank of PTCL cases with linked clinical data and serum, saliva and plasma samples to enable assessments of treatment response and prediction of relapse.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",0121c132-5be6-414e-853b-885ff301854f,https://web.www.healthdatagateway.org/dataset/0121c132-5be6-414e-853b-885ff301854f,"{'access': {'jurisdiction': 'GB-ENG', 'dataController': 'University of Leicester', 'accessRequestCost': 'Not specified', 'dataProcessor': 'Not Applicable', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED.', 'accessRights': 'Please contact the publisher using Contact Point details provided.'}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}, 'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}}","{'temporal': {'startDate': '2017-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:16:37Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T16:11:12Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Human Developmental Biology Resource (HDBR)', 'doiName': 'Not Available', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY', 'contactPoint': 'hdbr@ncl.ac.uk'}, 'contactPoint': 'hdbr@ncl.ac.uk', 'abstract': 'Collection of samples and data across the following diseases: Entire embryo (body structure)', 'keywords': ['HDBR', 'UKCRC Tissue Directory', 'Biology', 'Developmental', 'Human', 'Entire embryo (body structure)']}",399a6d67-7577-4476-a3b6-4bbceb5a8ff7,"{'typicalAgeRange': '0-4', 'physicalSampleAvailability': ['CDNA/MRNA', 'TISSUE'], 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '8c07035d-b072-48a5-921f-6fb14096703b', '3.0.0': '01470238-7a17-47a5-a131-17178ba26a0a', '2.0.0': '355de4ca-1ce9-4ba4-8e07-2d51bb82bfbf', '1.0.0': '275d26b4-c0bd-47dc-b4fc-19440b94ea9c', 'latest': '01470238-7a17-47a5-a131-17178ba26a0a'}","{'description': ""The Human Developmental Biology Resource (HDBR) is an ongoing collection of human embryonic and fatal material ranging from 3 to 20 weeks of development. Material is available to researchers internationally following registration with the tissue bank.  Jointly funded by the MRC and Wellcome Trust, the biobank has been operating since 1999 and is based at two centres: Institute of Genetic Medicine '“ Newcastle University and the Institute of Child Health '“ University College London.\nTissues can be dissected to meet specific research needs and samples supplied fixed or frozen for histology or nucleic acid extraction, or the tissue can be collected into culture media to be used to establish cell lines. Material pre-sectioned to microscope slides is available for immunohistochemistry (IHC) or tissue in situ hybridisation studies (TISH) and stage, tissue specific RNA/DNA/cDNA can be requested.\nOur In House Gene Expression Service will perform IHC or TISH experiments on behalf of registered users and provide them with high quality annotated images of results ready for publication."", 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",01470238-7a17-47a5-a131-17178ba26a0a,https://web.www.healthdatagateway.org/dataset/01470238-7a17-47a5-a131-17178ba26a0a,"{'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}, 'access': {'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'dataProcessor': 'Not Applicable', 'jurisdiction': 'GB-ENG', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'dataController': 'Newcastle University', 'accessRequestCost': 'Not specified'}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}}","{'temporal': {'startDate': '1999-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:05:21Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T15:59:46Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'BathTAP Switching Cohort 2', 'publisher': {'memberOf': 'HUBS', 'identifier': '613b2174b8b58d157f531e7a', 'name': 'ALLEVIATE'}, 'keywords': ['Alleviate', 'Pain Hub', 'Pain'], 'contactPoint': 'hssce@bath.ac.uk', 'abstract': 'The BathTAP Switching study explores the effect of pain status on task performance on three versions of a computerised switching task in a sample drawn from the general population.'}",ea1aca1f-6ddb-44a0-b530-0645a26b2bee,"{'typicalAgeRange': '18-75', 'spatial': ['https://www.geonames.org/6252001/united-states.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '01a5c44c-c2fd-4c1e-856e-9875ee1beafa'},"{'description': 'Cross-sectional study of people recruited online from the general population. Participants reported their pain status (no pain, current, recurrent pain) and completed three different versions of a remotely delivered computerized version of the switching task (random, cued, uncued). Outcomes were speed of response and/or accuracy scores on these tasks. Study 2.'}",01a5c44c-c2fd-4c1e-856e-9875ee1beafa,https://web.www.healthdatagateway.org/dataset/01a5c44c-c2fd-4c1e-856e-9875ee1beafa,"{'formatAndStandards': {'format': ['Database'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en']}, 'usage': {'isReferencedBy': ['Attridge, N., Keogh, E., & Eccleston, C. (2016). The effect of pain on task switching: pain reduces accuracy and increases reaction times across multiple switching paradigms. Pain, 157(10), 2179–2193. https://doi.org/10.1097/j.pain.0000000000000627']}, 'access': {'jurisdiction': ['GB-ENG'], 'dataController': 'University of Bath', 'accessRights': ['https://www.bath.ac.uk/research-centres/centre-for-pain-research-cpr/']}}","{'origin': {'source': ['OTHER'], 'purpose': ['STUDY'], 'collectionSituation': ['OTHER']}, 'temporal': {'accrualPeriodicity': 'STATIC', 'startDate': '2016-10-01', 'distributionReleaseDate': '2016-10-01', 'timeLag': 'NOT APPLICABLE', 'endDate': '2016-10-01'}}",2021-11-01T11:03:47Z,"[{'observedNode': 'PERSONS', 'measuredValue': '1078', 'disambiguatingDescription': 'Computer task performance', 'observationDate': '01/10/2016', 'measuredProperty': 'Count'}]",1.0.0,,2021-11-01T11:03:47Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 17, 'structuralMetadata.columnName': 17, 'structuralMetadata.columnDescription': 17, 'structuralMetadata.dataType': 17, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'd95d1c91-83e7-4623-87ba-cc5571b996c2', 'name': 'BathTAP Switching 2', 'dataElementsCount': 17, 'dataElements': 'd3e3398c-ba47-40ec-9d71-cfc24c8e9734, e47aaa1d-7f12-4d47-b764-a6ea8503f3b9, 6c29e6d3-6092-4f72-a500-8d254b56bdaa, c59f6c47-2eb8-4a3c-b94b-dc03497e8569, 7517d730-34c2-49c8-887c-ff40c0c0c5c9, af7dd189-44ed-4ca3-abaf-01c9c659f4d6, c2b7ca70-b47b-48fc-973c-c6632214939b, 13c3497a-d56c-4988-a709-50a6b431362b, 1d3fe091-5940-4657-91e7-4036ab4c8b33, beedb7a9-b654-4f8d-bfe1-226699059f7d, 05a64d73-b1ef-423c-99ad-919d00dc9c56, 0eb74f58-3547-4c6f-b5c3-bbe79b972d4f, f1db6e9e-7402-4331-a7ae-8cdea197d967, 67835b9c-6247-455b-9413-15e44fbd60dd, 10c2b2a1-9f5e-407e-9767-cff616402f20, 61174f41-08ef-4da0-a61f-2ab2a7f3109e, 1503bf69-d616-4c49-a26b-342a46388df1'}]}"
"{'title': 'UK Biobank', 'publisher': {'name': 'UK Biobank', 'identifier': '607db9c6e1f9d3704d570d7f', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'access@ukbiobank.ac.uk', 'abstract': 'UK Biobank is a large-scale biomedical database and research resource that provides researchers access to detailed longitudinal phenotype, medical and genetic data from 500,000 volunteer participants.', 'keywords': ['UK BIOBANK', 'Genomics', 'Exome sequencing', 'WGS', 'Omics', 'Pain', 'Research', 'Cognitive Measures', 'Physical Measures', 'Magnetic resonance imaging', 'DXA', 'ECG', 'Accelerometer', 'Mental Health', 'Environment', 'Primary Care', 'COVID-19', 'Hospital episode statistics', 'Cancer Registry', 'Deaths', 'Sociodemographics', 'Digestive Health', 'Occupational Health', 'Biomarkers', 'Lifestyle', 'Health Data', 'Cardiac MRI', 'Brain MRI', 'Abdominal MRI', 'Carotid Ultrasound', 'Diet', 'Pain Hub']}",,"{'pathway': 'UK Biobank is a volunteer based cohort. As such, there is a healthy volunteer effect that results in participants tending to be of higher socioeconomic status, remaining in education longer, slimmer, less smokers (although those that smoke tend to be heavier smokers) and lower consumers of alcohol than the general population. A comparison between UK Biobank participants and the general UK population has been published (https://doi.org/10.1093/aje/kwx246).\n\nWhilst selection biases are seen in UK Biobank, there is still substantial heterogeneity within the cohort. Whilst incidence and prevalence calculations are not generalisable to the UK population, exposure-outcome comparisons should be due to the heterogeneity in the cohort. However, it is important that researchers consider the potential biases of a data set that might limit generalisability of their results (as is the case for all observational data).', 'followup': 'CONTINUOUS', 'typicalAgeRange': '40-69', 'physicalSampleAvailability': ['SERUM', 'PLASMA', 'WHOLE BLOOD', 'SALIVA', 'URINE'], 'spatial': ['United Kingdom']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'10.0.0': '3c7a10d8-1140-434d-9844-0fcfcab3a0c9', '11.0.0': '01eb52c3-3f21-4e31-8b27-5e70327543b2', '9.0.0': '457b94a0-e550-406b-8fa1-fa0602686099', '8.0.0': 'de5c5e75-5304-4041-8b5b-1ea359b4cedc', '7.0.0': '021a88f7-5a3e-4333-909f-e7b2fc0485c8', '6.0.0': 'b9c1b698-f860-408e-a059-703df631e2de', '5.0.0': '5e2cb0e7-8651-448a-91c4-41a0897b73ad', '4.0.0': '953bb5a6-1c5f-42e8-bb0b-91c84ecf9d5d', '3.0.0': '482727e1-b880-46de-b7e0-c54fae415712', '2.0.0': '30f14c5c-6eb0-4b58-ae3f-6d3390322579', '1.0.0': 'fc739581-af49-45db-afc6-1777d017ecc2', 'latest': '01eb52c3-3f21-4e31-8b27-5e70327543b2'}","{'description': 'UK Biobank is a large-scale biomedical database and research resource, containing in-depth genetic and health information from half a million UK participants. The database, which is regularly augmented with additional data, is globally accessible to approved researchers and scientists undertaking vital research into the most common and life-threatening diseases. UK Biobank’s research resource is a major contributor to the advancement of modern medicine and treatment and has enabled several scientific discoveries that improve human health.\n\nSince 2006, UK Biobank has collected an unprecedented amount of biological and medical data on half a million people, aged between 40 and 69 years old and living in the UK, as part of a large-scale prospective study. With their consent they regularly provide blood, urine and saliva samples, as well as detailed information about their lifestyle which is then linked to their health-related records to provide a deeper understanding of how individuals experience diseases. Genotyping, whole exome sequencing and whole genome sequencing is available for the whole cohort. Blood and urine biomarkers, telomere data, metabolomic and proteomic data and infectious disease markers have been assayed from the samples provided.\n\nSince 2014 we have been undertaking the largest imaging study to date. We aim to undertake brain, cardiac and neck to knee MRI, whole body DXA and carotid ultrasound of 100,000 participants. We additionally have retinal images for 100,000 participants from baseline assessment, and accelerometer data for 100,000 participants collected 2013-2014.\n\nQuestionnaires that aim to capture data that is not readily captured by health data linkages are regularly sent to our participants.\n\nThe data – the largest and richest dataset of its kind – is de-identified and made widely accessible by UK Biobank to registered researchers around the world who use it to make new scientific discoveries about common and life-threatening diseases – such as cancer, heart disease and stroke – in order to improve public health.', 'associatedMedia': ['https://biobank.ndph.ox.ac.uk/showcase/index.cgi', 'https://www.ukbiobank.ac.uk/'], 'isPartOf': 'NOT APPLICABLE'}",01eb52c3-3f21-4e31-8b27-5e70327543b2,https://web.www.healthdatagateway.org/dataset/01eb52c3-3f21-4e31-8b27-5e70327543b2,"{'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'isReferencedBy': ['Sudlow C, Gallacher J, Allen N, Beral V, Burton P, Danesh J, et al. (2015) UK Biobank: An Open Access Resource for Identifying the Causes of a Wide Range of Complex Diseases of Middle and Old Age. PLoS Med 12(3): e1001779. https://doi.org/10.1371/journal.pmed.1001779', 'Bycroft, C., Freeman, C., Petkova, D. et al. The UK Biobank resource with deep phenotyping and genomic data. Nature 562, 203–209 (2018). https://doi.org/10.1038/s41586-018-0579-z', 'Conroy M, Sellors J, Effingham M, et al. The advantages of UK Biobank’s open-access strategy for health research. J Intern Med. 2019;286(4):389-397. doi:10.1111/joim.12955', 'Littlejohns TJ, Holliday J, Gibson LM, et al. The UK Biobank imaging enhancement of 100,000 participants: rationale, data collection, management and future directions. Nat Commun. 2020;11(1):2624. doi:10.1038/s41467-020-15948-9', 'Fry A, Littlejohns TJ, Sudlow C, et al. Comparison of Sociodemographic and Health-Related Characteristics of UK Biobank Participants With Those of the General Population. Am J Epidemiol. 2017:1-9. doi:10.1093/aje/kwx246'], 'resourceCreator': ['UK Biobank'], 'investigations': ['https://www.ukbiobank.ac.uk/enable-your-research/approved-research'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'PUBLICATION REQUIRED', 'RETURN TO DATABASE OR RESOURCE', 'USER SPECIFIC RESTRICTION', 'TIME LIMIT ON USE']}, 'access': {'accessService': 'Applications to access data are made through our bespoke access management system (https://bbams.ndph.ox.ac.uk/ams/). \n\nData access is either via data download (phenotype and genotype data) or via our Research Analysis Platform (phenotype, imaging, genotype, WES, WGS, omics). Our RAP is enabled by DNANexus and hosted by Amazon Web Services (https://www.ukbiobank.ac.uk/enable-your-research/research-analysis-platform). \n\nAccess costs depend on what data access is required.', 'dataProcessor': 'UK Biobank', 'accessRequestCost': ['https://www.ukbiobank.ac.uk/enable-your-research/costs'], 'jurisdiction': ['GB-ENG'], 'dataController': 'UK Biobank', 'accessRights': ['https://www.ukbiobank.ac.uk/enable-your-research/apply-for-access'], 'deliveryLeadTime': '1-2 MONTHS'}, 'formatAndStandards': {'conformsTo': ['DICOM', 'LOCAL', 'NHS DATA DICTIONARY'], 'language': ['en'], 'format': ['Text/csv, dta, SAS, R', 'Image/ DICOM, NIFTI, PNG', 'Other/ VCF, CRAM, PLINK, BGEN, BED, CWA'], 'vocabularyEncodingScheme': ['LOCAL', 'OPCS4', 'READ', 'SNOMED CT', 'DM+D', 'ICD10', 'ICD9']}}","{'origin': {'collectionSituation': ['PRIMARY CARE', 'ACCIDENT AND EMERGENCY', 'IN-PATIENTS', 'COMMUNITY', 'CLINIC', 'PHARMACY'], 'purpose': ['STUDY'], 'source': ['EPR', 'ELECTRONIC SURVEY', 'MACHINE GENERATED']}, 'temporal': {'startDate': '2006-03-13', 'accrualPeriodicity': 'CONTINUOUS', 'timeLag': 'VARIABLE'}}",2022-03-23T15:39:37Z,"[{'observedNode': 'PERSONS', 'measuredValue': '500000', 'disambiguatingDescription': 'Each participant has a large number (<5000) of data points associated with them. Recruitment started in 2006, but data collection is ongoing, and health data predates recruitment date. Summary statistics of all data can be found on our data showcase.', 'observationDate': '13/03/2006', 'measuredProperty': 'Count'}]",11.0.0,,2022-04-19T16:45:40Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 8104, 'structuralMetadata.columnName': 8104, 'structuralMetadata.columnDescription': 8104, 'structuralMetadata.dataType': 8104, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'f4b09c27-989b-4bac-9f57-754397976dc9', 'name': 'UK Biobank Data Dictionary', 'dataElementsCount': 8104, 'dataElements': '5e9f8084-2e7c-48bb-9816-f2c13274f150, 654765fb-8c7e-44aa-b0a3-e553a478b9be, 5f1689ff-0697-4004-bab5-6d7186430ff1, f4f8738a-f4dd-41b4-9ed0-9f1d2422d077, 20b5a29b-a4d5-41b0-8bc0-671b850efae9, 8f6c4cdb-8c92-4d99-a07c-030ba4c3a531, 84545948-3a61-4f9d-b4ac-915dad2024a8, 82195cd9-f956-459b-a110-f32c86e25147, 48738d39-bf3b-462c-9fa3-7a0855b8178e, 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"{'title': 'Cam-UroOnc Biorepository', 'publisher': {'contactPoint': 'anne.george@addenbrookes.nhs.uk', 'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY'}, 'doiName': 'Not Available', 'keywords': ['UKCRC Tissue Directory', 'BioBank', 'Cam-UroOnc Biorepository', 'Carcinoma in situ of prostate'], 'abstract': 'Collection of samples and data across the following diseases: Carcinoma in situ of prostate', 'contactPoint': 'anne.george@addenbrookes.nhs.uk'}",21044030-1cd5-46b1-b072-c9959fd330b4,"{'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM', 'TISSUE'], 'typicalAgeRange': '40-150', 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '6b8f7aee-8a94-498f-889f-407c922fa91a', '3.0.0': '0315886c-f34a-4f1d-8f76-2dfa80a6e949', '1.0.0': 'b9c2aa7d-3e15-40aa-83a1-f2226bc6c311', '2.0.0': 'a1f9315e-8561-4e7b-b1a7-1276bdeca14d', 'latest': '0315886c-f34a-4f1d-8f76-2dfa80a6e949'}","{'description': 'The primary role of the CamUro-Onc is to consent, collect, log and store frozen tumour/normal tissues, blood and urine for use in approved research projects. The bank has been in operation since 2003 and now has an extensive collection of biosamples from urological diseases.\nType of samples collected;\n-\tFresh frozen and paraffin wax embedded tumour/normal tissue (where possible) from kidney, bladder and prostate.\n-\tMatching blood and urine samples.\n-\tBlood and urine samples collected as part of several research projects.\nThese samples have been collected as part of various ethically approved research studies.\nThe CamUro-Oncology Biobank is part of the Cambridge site of the ProMPT NCRI Prostate Cancer Collaborative. ProMPT provides infrastructure to take forward translational research in prostate cancer including the establishment of biorepositories and tissue collections together with epidemiological and clinical information. \nDIAMOND Study-(Discovery and Analysis of novel biomarkers in Urological diseases)- Collection of initial and sequential samples from subjects with benign and cancerous urological diseases.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",0315886c-f34a-4f1d-8f76-2dfa80a6e949,https://web.www.healthdatagateway.org/dataset/0315886c-f34a-4f1d-8f76-2dfa80a6e949,"{'access': {'dataProcessor': 'Not Applicable', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'dataController': 'University of Cambridge', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'jurisdiction': 'GB-ENG', 'accessRequestCost': 'Not specified'}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}}","{'temporal': {'startDate': '2003-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:04:32Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T15:55:54Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'The Leicester City and County Chronic Kidney Disease Cohort', 'publisher': {'name': 'UNIVERSITY HOSPITALS OF LEICESTER', 'memberOf': 'ALLIANCE', 'contactPoint': 'rwlm2@le.ac.uk'}, 'contactPoint': 'rwlm2@le.ac.uk', 'abstract': 'LCC is a primary care observational cohort of chronic kidney disease. GP practices are based in Leicestershire based clinical commissioning groups. Data is linked to local secondary care outcomes for cardiovascular, endstage renal disease and mortality.', 'keywords': ['LCC', 'Renal', 'GP', 'Primary', 'Mortality', 'Kidney', 'Outcomes', 'Cardiovascular', 'Chronic']}",4dfec37d-dd24-465f-85ea-30209aff3a26,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'a0d48d4f-fd8d-4567-9761-bf7590f6f81e', '4.0.0': '039c0b29-63f6-4ce9-8d89-87012a52e44f', '2.0.0': 'b119f548-4059-4f7b-9897-4a9b397f23b9', '1.0.0': '0c2c9d11-4a84-4510-9512-ebff4cd5c5a2', '3.0.0': 'f3ade619-292e-4631-916a-9cd9d7938e48', 'latest': '039c0b29-63f6-4ce9-8d89-87012a52e44f'}","{'description': 'LCC is a primary care observational cohort of chronic kidney disease. GP practices are based in the 3 Leicestershire based clinical commissioning groups. Data is linked to local secondary care outcomes for cardiovascular, endstage renal disease (dialysis or kidney transplantation) and mortality. Number of GP practices = 38, Number of anonymised patient records approximately 17,000.', 'isPartOf': 'Renal'}",039c0b29-63f6-4ce9-8d89-87012a52e44f,https://web.www.healthdatagateway.org/dataset/039c0b29-63f6-4ce9-8d89-87012a52e44f,"{'access': {'jurisdiction': 'GB-ENG', 'deliveryLeadTime': 'OTHER', 'accessRights': 'In Progress'}, 'formatAndStandards': {'language': ['en']}}",,2020-01-13T14:58:45Z,,4.0.0,,2021-02-21T16:21:11Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': '4 Country ChrOnic: estimating respiratory disease burden in adults, South India', 'abstract': 'We will undertake a pilot survey to explore feasibility of using screening process in four countries (Bangladesh, India, Malaysia, and Pakistan).', 'publisher': {'contactPoint': 'RESPIRE@ed.ac.uk', 'memberOf': 'HUB', 'name': 'BREATHE'}, 'contactPoint': 'RESPIRE@ed.ac.uk', 'keywords': ['middle-income', 'Asia', 'India', 'COPD', 'asthma', 'RESPIRE', 'BREATHE', 'low-income']}",2f1244b8-7cbf-4fa3-8534-433efd769d48,"{'typicalAgeRange': '>18', 'spatial': 'India', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '2dc79612-0e0d-4336-aaa1-6abd90d28589', '1.0.0': '03abf37c-41b2-4ff3-9c09-2cfea438526a', 'latest': '03abf37c-41b2-4ff3-9c09-2cfea438526a'}","{'description': 'Informed by a scoping review of existing questionnaires and protocols used in Low- and Middle-Income Countries (LMICs) to identify Chronic Respiratory Diseases, we will undertake a pilot survey to explore feasibility of using screening process in four countries (Bangladesh, India, Malaysia, and Pakistan). Our pilot findings will inform a future fully powered survey to determine the prevalence of asthma, COPD and other CRD in the community, using robust random sampling strategies, and quality assured spirometry undertaken by field workers.\n\nFor further details, see: https://www.ed.ac.uk/usher/respire/chronic-respiratory-disorders/estimating-chronic-respiratory-disease-burden', 'isPartOf': 'BREATHE'}",03abf37c-41b2-4ff3-9c09-2cfea438526a,https://web.www.healthdatagateway.org/dataset/03abf37c-41b2-4ff3-9c09-2cfea438526a,"{'access': {'dataController': 'RESPIRE', 'deliveryLeadTime': 'OTHER', 'jurisdiction': 'IN', 'dataProcessor': 'RESPIRE', 'accessRights': 'Access is managed on a project-by-project basis. Contact the RESPIRE team: https://www.ed.ac.uk/usher/respire/about/projects'}, 'formatAndStandards': {'language': ['en'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL']}, 'usage': {'resourceCreator': 'RESPIRE Collaboration'}}","{'temporal': {'startDate': '2018-09-01', 'endDate': '2020-05-31'}}",2020-09-01T10:03:56Z,,1.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-04-14T08:28:27Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Asthma and COPD Audit (NACAP): Adult Asthma secondary care clinical', 'publisher': {'name': 'HQIP', 'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d23'}, 'abstract': 'This audit aims to collect information on all people 16 years+  admitted to hospital adult services with asthma attacks. Admission data, obtained from patient case notes, is\xa0collected\xa0and entered into a secure and bespoke audit web tool.', 'contactPoint': 'DataSharing@hqip.org.uk', 'keywords': ['Audit', 'NACAP', 'Asthma', 'COPD', 'Adult Asthma', 'Secondary Care', 'Clinical Dataset']}",becd2624-9a01-4f01-bcf8-56e94545a49a,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': '0 - 6 MONTHS', 'pathway': 'All people 16 years of age and above who have been admitted to hospital (adult ward) with a primary diagnosis of an asthma attack and coded with the following ICD-10 codes in the primary position of the first episode of care:\n\n• J45.0 - Predominantly allergic asthma\n• J45.9 - Asthma, unspecified\n• J46.X - Status asthmaticus (Includes: Acute severe asthma)', 'spatial': ['https://www.geonames.org/2634895/wales.html', 'https://www.geonames.org/6269131/england.html'], 'typicalAgeRange': '16-100'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'5.0.0': 'e5ad8cc0-906e-4ecf-ada9-832e803e83ec', '6.0.0': '03b7acd5-ecfe-4cd6-a6dc-bf9e3f98c772', 'latest': '03b7acd5-ecfe-4cd6-a6dc-bf9e3f98c772'}","{'description': 'This audit aims to collect information on all people admitted to hospital adult services with asthma attacks. Admission data, obtained from patient case notes, is collected and entered into a secure and bespoke audit web tool.', 'associatedMedia': ['https://www.hqip.org.uk/a-z-of-nca/national-asthma-and-copd-audit-programme-nacap/'], 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",03b7acd5-ecfe-4cd6-a6dc-bf9e3f98c772,https://web.www.healthdatagateway.org/dataset/03b7acd5-ecfe-4cd6-a6dc-bf9e3f98c772,"{'access': {'jurisdiction': ['GB-EAW'], 'accessRequestCost': ['https://www.rcplondon.ac.uk/projects/outputs/national-asthma-and-copd-audit-programme-nacap-resources', 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'dataProcessor': 'Crown Informatics Limited (patient identifiable information)\nRoyal College of Physicians (RCP), NACAP team (service level aggregated data only)\nImperial College London (service level aggregated dat only)', 'accessRights': ['https://www.rcplondon.ac.uk/projects/outputs/national-asthma-and-copd-audit-programme-nacap-resources', 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England', 'deliveryLeadTime': 'VARIABLE'}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['ICD10', 'OTHER'], 'language': ['en'], 'format': ['Excel', 'CSV']}, 'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['NO RESTRICTION'], 'resourceCreator': ['Data has been provided by the Healthcare Quality Improvement Partnership from the National Asthma and COPD Audit Programme']}}","{'temporal': {'accrualPeriodicity': 'CONTINUOUS', 'startDate': '2018-11-01', 'timeLag': 'VARIABLE'}, 'origin': {'source': ['ELECTRONIC SURVEY'], 'collectionSituation': ['IN-PATIENTS', 'ACCIDENT AND EMERGENCY'], 'purpose': ['AUDIT']}}",2021-11-29T21:29:29Z,"[{'observedNode': 'PERSONS', 'measuredValue': 19360, 'disambiguatingDescription': 'number of patients in the dataset', 'observationDate': '24/06/2021', 'measuredProperty': 'count'}]",6.0.0,"{'qualifiedRelation': ['Data linked with that from other custodians may be available, but the release of linked data will be subject to separate permission of all relevant data controllers'], 'derivation': ['Not Available']}",2022-01-31T09:20:37Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 42, 'structuralMetadata.columnName': 42, 'structuralMetadata.columnDescription': 42, 'structuralMetadata.dataType': 42, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '20918cd0-c597-4e48-850e-0281dc7f3aff', 'description': 'Data fields for the Secondary care: Adult asthma Clinical audit dataset 2020', 'name': 'Secondary care: Adult asthma Clinical audit dataset 2020', 'dataElementsCount': 42, 'dataElements': '53b1e9c4-9def-4b5f-a9ad-156d7b2bda8f, 3e67cbd1-39ea-44fc-87de-60cc501ad97a, 5e84b508-b69e-445f-9a33-4fc4c303adc8, b2f94969-57c1-43bf-8814-330e99a3eace, 78ef1cf9-a252-4604-b131-805df9c32b93, 11352c3a-b5c6-40df-a2ee-f93060e02db0, 685754bf-dfba-4e27-b84c-e78521ff7657, 91553afa-baab-4717-a5cc-838c3e989394, b7bb05f1-8034-4d7e-a2a0-403b1e0c7420, d584f495-2eed-4538-9933-3ece9ff38e02, 5bf2ac9c-2a22-40cd-9036-3f12e0074077, 139af5b8-333c-4c2e-8de1-742df0556e6b, 50ea221f-f60f-48ee-b7b4-2c886116e7bd, 2176ef6e-2c6f-40e0-89df-643ee0292c52, 9d1d33a7-b19d-446c-8ece-cf3b2c31d395, 4dbad0ee-81bb-47fe-afa8-170b285e6689, b016b72b-65f2-41c5-a9c0-30cdc8f53727, ae4399fe-602a-4ba8-8744-47ec66f69654, 0860711e-f1de-49e4-a365-e64169359e98, d955aca4-a3e5-4743-85cb-8c96135b0ec6, c3792491-167a-4866-9351-0987cdbd5a94, b5c5b098-a096-436c-ae05-50ac7127b867, bf6a7f99-d168-4da7-91c1-4626d03dc0c2, f5677645-d02f-4b1d-bf07-ffb4af701940, afa43201-b8c9-4ece-850d-8e3431a88e7c, dc7726cb-6cb2-4268-a333-21fade0243b0, 3de76050-9ff7-4089-a127-54acd1932811, 0cff13f8-288f-4ce5-a21f-cac3b8023831, 3ef24819-158e-42f1-958a-ad42dc3acda4, fbad01bb-a307-495a-be2d-2ab839707f56, 3d7c9fdf-03cf-41da-a94b-a4a96104d287, be8e9c6e-05cd-4c41-bbcc-6caad7e8cbe1, c6671970-a6bf-46bb-b4d8-8a7c72bc550f, c53bd4b8-e463-48fd-903a-f1ad461f7f01, 9ec5b594-6449-42b0-b805-2f5b0ee4f502, bc63f5e7-b306-4e93-9756-d45194edcc5c, add7e2fc-69a8-4d64-b27f-6f9ab9fcc29b, 7fa6eea1-b299-48c1-aac5-b42e2b807cf1, 3b213e2f-48cf-4d10-b570-77c6ca079a26, f24baac1-a165-4c6d-bcb8-f3250b786087, cb5664be-8677-48f6-9ab5-1b6c36b8feae, 8e8ff01e-b60c-4929-8475-bb9d46054f6d'}]}"
"{'title': 'NIHR BioResource: Consent records', 'keywords': ['recall', 'consent'], 'abstract': ""The NIHR BioResource records consent dates and versions for each and every participant consent event.  We also record use of opt-ins and opt-outs including pre-GDPR. This permits us to manage data releases in line with participants' expectations."", 'contactPoint': 'nbr@bioresource.nihr.ac.uk', 'publisher': {'name': 'NIHR BIORESOURCE', 'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d3f'}}",1fb479b1-98d4-4d7b-91a2-8368ce3dc77c,"{'spatial': ['United Kingdom (https://www.geonames.org/2635167/united-kingdom.html)'], 'followup': '1 - 10 YEARS', 'typicalAgeRange': '18-85', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'e2f18151-1bce-4a54-ab32-af6296abdfda', '1.0.0': '03cdf92e-b6ea-4e1d-a861-e9da4372ed36', 'latest': '03cdf92e-b6ea-4e1d-a861-e9da4372ed36'}","{'description': 'The NIHR Bioresource consists of several groups of participants: ~70k from the general population and blood donors (COMPARE, INTERVAL and STRIDES studies); ~19k with one of ~50 rare diseases (RD) including a ~5k pilot for GEL; ~30k with Inflammatory Bowel Disease (IBD) which include the members of Gut Reaction, the Health Data Research Hub for IBD; and ~20k with Anxiety or depression (GLAD study). It intends to extend recruitment in all areas, and to other rare and common disease groups, with a target of ~300k by 2022. The NIHR BioResource records consent details – form, version and date - from participants at many points of recontact.  In addition, participants are empowered to contact the study direct to express their preferences. The primary use of consent records is as an exclusion when participants are invited to take part in experimental medicine studies.  However consent is also factored in to the release of samples and data for sample-only and data-only studies.  One implication, is that data releases have freezes that capture a snapshot of the current consent statuses.  How the withdrawal process is managed, and implications for whether data can be removed rapidly from already published datasets is described in our Participant Privacy Notice, online at https://bioresource.nihr.ac.uk/privacy/', 'isPartOf': 'Not Applicable'}",03cdf92e-b6ea-4e1d-a861-e9da4372ed36,https://web.www.healthdatagateway.org/dataset/03cdf92e-b6ea-4e1d-a861-e9da4372ed36,"{'access': {'jurisdiction': ['GB-GBN'], 'deliveryLeadTime': 'NOT APPLICABLE', 'accessRequestCost': ['Not Applicable'], 'accessService': 'Not Applicable', 'accessRights': ['https://bioresource.nihr.ac.uk/using-our-bioresource'], 'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)', 'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)'}, 'usage': {'isReferencedBy': ['Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/'], 'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'resourceCreator': ['NIHR BioResource. Acknowledgement text: ""We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.""']}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'format': ['text/csv'], 'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en']}}","{'origin': {'source': ['ELECTRONIC SURVEY', 'PAPER BASED'], 'purpose': ['ADMINISTRATIVE'], 'collectionSituation': ['CLINIC', 'COMMUNITY', 'HOME']}, 'temporal': {'timeLag': 'NOT APPLICABLE', 'startDate': '2002-05-20', 'accrualPeriodicity': 'CONTINUOUS'}}",2021-02-21T18:17:53Z,"[{'observedNode': 'PERSONS', 'measuredValue': '144517', 'disambiguatingDescription': 'Participants who have consent information', 'observationDate': '26/11/2020', 'measuredProperty': 'COUNT'}]",1.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['ALL', 'COVID-19 SARI-Watch (formerly CHESS)', 'Civil Registration - Deaths', 'Covid-19 Second Generation Surveillance System', 'Emergency Care Data Set (ECDS)', 'Hospital Episode Statistics Accident and Emergency', 'Hospital Episode Statistics Admitted Patient Care', 'Hospital Episode Statistics Critical Care', 'Hospital Episode Statistics Outpatients', 'Intensive Care National Audit & Research Centre (ICNARC) Case Mix Programme (https://www.icnarc.org/Our-Audit/Audits/Cmp/About)']}",2021-11-25T11:59:35Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 5, 'structuralMetadata.columnName': 5, 'structuralMetadata.columnDescription': 5, 'structuralMetadata.dataType': 5, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '22b45686-c32c-4d0c-945a-605c5c095dcd', 'description': 'Consent events', 'name': 'Consent', 'dataElementsCount': 5, 'dataElements': '2857329d-8110-437a-9de4-44a41491b933, 53521c2f-7377-47fa-936f-000ee67402de, 6e8a7ab9-75be-4d79-bb7a-28a671f23f15, 817d703c-4388-4653-8149-ff62e93b6fe6, 0149a61a-560c-4075-88e8-6d2f7e8581df'}]}"
"{'title': 'COVIDsortium', 'publisher': {'contactPoint': 'bartshealth.covid-hcw@nhs.net', 'name': 'UNIVERSITY COLLEGE LONDON', 'memberOf': 'OTHER'}, 'keywords': ['COVID', 'COVID-19', 'Coronavirus', 'Serology', 'CO-CONNECT', 'COVIDsortium', 'SARS-CoV-2', 'HCW', 'Health Care Workers', 'Healthcare Workers', 'antibody', 'antibodies'], 'contactPoint': 'bartshealth.covid-hcw@nhs.net', 'abstract': 'The COVIDsortium study aims to identify host and pathogen correlates of protection and pathogenesis in SARS-CoV-2 infection. The prospective observational cohort study (n=1000) healthcare workers (HCWs) with serial data/sample collection pre & post COVID.'}",529f126b-660c-4c31-aeb2-765dac1d9df0,"{'typicalAgeRange': '18-65', 'physicalSampleAvailability': ['SERUM'], 'followup': 'OTHER', 'spatial': 'London'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '01e41d12-b3dc-4ffc-b30d-4c6dacdb9577', '1.0.0': '03fb3b18-4419-44f7-a035-9ddfecfcadfc', 'latest': '03fb3b18-4419-44f7-a035-9ddfecfcadfc'}","{'description': 'COVID-19 has caused the greatest pandemic in living memory. Alongside providing excellent clinical care in the most challenging of environments, there is also a critical need for clinical research to better understand this disease. This will equip us to better deal with the current pandemic as well future ones.\n\nWe need to establish why some people develop severe disease and others never get ill despite infection. We need to know whether there are targets for drug development to treat the disease or to give people who are exposed. We will look at genetic influences and immunology (including prior protective viral exposure), seek neutralising antibodies, understand the cellular responses and assess ethnic and sociological factors – all by collecting a biorepository of over 200,000 samples taken from our own healthcare staff weekly over the next 4 months. These samples will then be divided up and sent to the UKs best academic and pharmaceutical research institutions for collaborative, swift science maximising the yield of the consortium to answer the questions in such urgent need of answers.\n\nDr Charlotte Manisty, Professor James Moon and their team embarked on a pioneering project with Barts NHS Health Trust, in collaboration with University College London (UCL) and Queen Mary’s University London (QMLU). Their research focused on gathering blood samples and health data from frontline healthcare workers, rather than patients admitted to hospital with COVID-19. This was because healthcare workers have high exposure rates to the disease – it also allows researchers to compare samples from each person before, during and after their exposure to COVID-19, and to investigate the disease in people who develop only mild symptoms or are asymptomatic.', 'associatedMedia': ['https://covid-consortium.com/'], 'isPartOf': 'NOT APPLICABLE'}",03fb3b18-4419-44f7-a035-9ddfecfcadfc,https://web.www.healthdatagateway.org/dataset/03fb3b18-4419-44f7-a035-9ddfecfcadfc,"{'access': {'dataController': 'bartshealth.covid-hcw@nhs.net', 'jurisdiction': 'GB-ENG', 'accessService': 'The transfer of samples and/or data will be subject to material and data transfer agreements between the recipient and each of the institutions participating in COVID-19 HCW Bioresource. Data sharing will be linked by COVID-19 HCW Bioresource unique identification number only and restricted to specific data fields required to undertake each approved pre-specified analysis. Data will be transferred by the provider to the recipient in an encrypted electronic format. The recipient will be mandated to have undertaken up to date information governance training and to use the data in accordance with GDPR principles. The recipient will ensure that the data are stored in a password protected encrypted format; are protected by up to date anti-virus and anti-malware software; are used solely to undertake the pre-specified analysis and will not be forwarded to a third party.\n\nThe use of all samples and data will be limited to the approved application for access and stipulated in the material and data transfer agreements between participating sites and investigators requesting access. Return of residual samples will be a condition of the material transfer agreements. 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The researchers will get access to the datasets that is present in the hub's catalogue and would be able to carry out their research within the safe haven. There are restrictions applied which prevents the researchers from taking data out of the safe haven, once the research/analysis is completed the admin team will need to be contacted for taking the analysis off the safe haven"", 'accessRequestCost': 'In Progress', 'deliveryLeadTime': '1-2 MONTHS'}, 'formatAndStandards': {'conformsTo': 'LOCAL', 'language': 'en', 'format': ['Excel', 'SQL', 'Tableau', 'R'], 'vocabularyEncodingScheme': ['LOCAL', 'NHS NATIONAL CODES', 'ODS']}}","{'temporal': {'distributionReleaseDate': '2020-05-06', 'startDate': '2020-04-06', 'timeLag': '1-2 MONTHS', 'accrualPeriodicity': 'MONTHLY'}, 'origin': {'purpose': ['CARE', 'ADMINISTRATIVE'], 'collectionSituation': 'IN-PATIENTS', 'source': 'EPR'}}",2020-06-12T14:10:33Z,"[{'observedNode': 'Persons', 'measuredValue': ' 9,476 ', 'disambiguatingDescription': '', 'observationDate': '2020-12-08', 'measuredProperty': 'Count'}]",3.0.0,"{'qualifiedRelation': ['Patients in this dataset will be identified by an unique patient key, this can be used to link to other datasets that we have as part of our catalogue as all our datasets has consistent patent keys for patients'], 'derivation': ['Long Term Conditions Electronic Frailty Index Q-Admissions Patient Segments Risk Segments']}",2021-03-01T10:37:40Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 30, 'structuralMetadata.columnName': 30, 'structuralMetadata.columnDescription': 30, 'structuralMetadata.dataType': 30, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'd48f1766-2b52-4c85-87dd-7d87b9c4135a', 'description': ""The Daily Situation Report' collects data on:\nthe number of urgent operations cancelled, including those cancelled for the 2nd time or more, throughout the month\ncritical care capacity, including adult, pediatric and neonatal available and occupied critical care beds"", 'name': 'PLD SitRep', 'dataElementsCount': 30, 'dataElements': '5974a525-5152-4f80-8fd4-7e2ff8c0d8d3, e1d7d6d5-cea4-445a-9534-283b8082f631, 60a2673c-10af-46e0-bfa0-12885bf2dfd1, b5541a3a-69ad-47cf-9015-465d17f316f1, 3ac0e9df-7978-4b3d-b5a5-d3f8a05231a5, 9ef0a92d-1262-4782-acae-7603556f0c8a, 8004a253-69f8-4470-911e-c2aa9ea67a80, ddfa9487-5670-4edf-b800-5c13bbc4f15d, 02812c8e-4715-4e5c-b60d-ee8eaa142001, 1c4052e8-01d5-4d9a-9e42-2bb55964d8a0, 9a2f9d44-2810-4127-8fda-d0705ec2cf52, 412d9667-73d1-4b67-91af-f11b75c8e295, 5c02c143-233d-4ca7-9c45-7102d9dad06a, 9d743ba3-aa5a-43f3-ae34-9cab291d434d, fa930951-b380-4f14-aef9-f63b401263c8, 000f512e-7a7b-4b9a-9771-f5b7d5442a7c, 8f451917-b12f-4904-bacc-df8394194049, 3c047164-eb29-4bda-980f-08ef88b20418, 83c90032-75e6-4e25-94f5-ced2c1824e98, 600cb3e3-368d-4315-9c3b-cb6409785195, 0385a3d1-90b9-4984-bb69-5440bc750cb0, 31df975f-cc38-48fb-8e91-b48a9bfe86bf, 1a21b313-2f58-45e0-bd51-c6fabff15a85, 5776d196-ef10-4513-9a4c-c218d511db60, cb213b67-43f2-48bc-a953-b3e842520c2b, a92aa2df-0beb-4697-90bf-a6f2b318942c, 71bfa95f-22a9-4890-b950-9796b934ce3e, 8551a188-f918-43f8-9eb5-4b68e5269c13, e2b493f2-d258-4317-93db-ffec8b7795d3, d47a088e-8390-4742-8d7c-8f42becb5e03'}]}"
"{'title': 'NIHR IBD BioResource: Sample holding', 'publisher': {'memberOf': 'HUB', 'name': 'GUT REACTION', 'identifier': '607db9c3e1f9d3704d570d0a'}, 'contactPoint': 'nbr@bioresource.nihr.ac.uk', 'keywords': [""Crohn's"", 'DNA', 'IBD', 'colitis', 'plasma', 'recall', 'samples', 'sera'], 'abstract': 'NIHR IBD BioResource samples are held at the NIHR National Biosample Centre in Milton Keynes. Metadata on what is available should become available through the UK CRC Tissue Directory, as mandated by Research Tissue Bank status.'}",f2af20f9-af84-40ce-8a07-7d095948653e,"{'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM'], 'spatial': ['https://www.geonames.org/2635167/united-kingdom.html'], 'followup': '1 - 10 YEARS', 'typicalAgeRange': '18-85'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'4.0.0': 'b070f920-ce0d-415c-a2b5-de446a285d5d', '5.0.0': '04f28919-aa6c-4beb-b186-0ad0043c1c6c', 'latest': '04f28919-aa6c-4beb-b186-0ad0043c1c6c'}","{'description': 'The NIHR IBD BioResource comprises ~34k participants with Inflammatory Bowel Disease (IBD). The NIHR IBD BioResource acquires samples at recruitment for each participant recruited. The preferred sample collection is 3 blood tubes – see https://bioresource.nihr.ac.uk/recruiters/sample-collection-recruiters/ – from which DNA can be extracted, and plasma and sera stored. In many clinics, the NIHR BioResource blood draw follows immediately the blood collection for routine healthcare purposes. In the case of children, less blood will be taken, down to 1ml. The Technical Metadata describes the standard used by RD-Connect, the EU-wide Rare Disease biobank consortium - https://samples.rd-connect.eu/menu/main/home. During 2021, this will be replaced by an API from the UK CRC Tissue Directory, as using this discovery tool is a condition of running a Research Tissue Bank in the UK.', 'associatedMedia': ['https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction-data-sources', 'https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction/', 'https://bioresource.nihr.ac.uk/recruiters/sample-collection-recruiters/'], 'isPartOf': 'Not Applicable'}",04f28919-aa6c-4beb-b186-0ad0043c1c6c,https://web.www.healthdatagateway.org/dataset/04f28919-aa6c-4beb-b186-0ad0043c1c6c,"{'usage': {'dataUseLimitation': ['RESEARCH USE ONLY'], 'isReferencedBy': ['Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/'], 'resourceCreator': ['NIHR BioResource. Acknowledgement text: ""We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.""'], 'investigations': ['https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction/', 'https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction-data-sources'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION']}, 'access': {'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)', 'accessRequestCost': ['https://bioresource.nihr.ac.uk/using-our-bioresource/industry-researchers/industry-bioresource-usage-costs/'], 'jurisdiction': ['GB-GB'], 'deliveryLeadTime': '2-6 MONTHS', 'accessRights': ['https://bioresource.nihr.ac.uk/using-our-bioresource'], 'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)', 'accessService': 'Some de-identified data may be released to researchers in a platform-independent filetype (e.g. CSV). However, access to any data acquired via NHS Digital is subject to strict restrictions governing where data may be accessed and from which locale - access in a Trustworthy Research Environment (TRE) at AIMES secure data centre (https://aimes.uk/).'}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL'], 'format': ['text', ' csv'], 'language': ['en']}}","{'temporal': {'distributionReleaseDate': '2021-03-31', 'startDate': '2016-01-13', 'accrualPeriodicity': 'QUARTERLY', 'timeLag': '1-2 MONTHS'}, 'origin': {'purpose': ['STUDY'], 'collectionSituation': ['OTHER'], 'source': ['LIMS']}}",2021-09-15T16:24:43Z,"[{'observedNode': 'PERSONS', 'measuredProperty': 'COUNT', 'measuredValue': '20405', 'observationDate': '12/09/2021', 'disambiguatingDescription': 'Number of participants with blood samples'}, {'observedNode': 'PERSONS', 'measuredValue': '2217', 'observationDate': '12/09/2021', 'measuredProperty': 'COUNT', 'disambiguatingDescription': 'Participants with Plasma depleted blood samples'}, {'observedNode': 'PERSONS', 'measuredValue': '26084', 'observationDate': '12/09/2021', 'measuredProperty': 'COUNT', 'disambiguatingDescription': 'Number of participants with Plasma isolated'}, {'observedNode': 'PERSONS', 'measuredValue': '29431', 'observationDate': '12/09/2021', 'measuredProperty': 'COUNT', 'disambiguatingDescription': 'Number of participants with Serum isolated'}, {'observedNode': 'PERSONS', 'measuredValue': '25940', 'observationDate': '12/09/2021', 'measuredProperty': 'COUNT', 'disambiguatingDescription': 'Number of participants with DNA isolated'}]",5.0.0,"{'qualifiedRelation': ['ALL', 'COVID-19 SARI-Watch (formerly CHESS)', 'Civil Registration - Deaths', 'Covid-19 Second Generation Surveillance System', 'Emergency Care Data Set (ECDS)', 'Hospital Episode Statistics Accident and Emergency', 'Hospital Episode Statistics Admitted Patient Care', 'Hospital Episode Statistics Critical Care', 'Hospital Episode Statistics Outpatients', 'Intensive Care National Audit & Research Centre (ICNARC) Case Mix Programme (https://www.icnarc.org/Our-Audit/Audits/Cmp/About)'], 'derivation': ['Not Available']}",2021-09-23T16:29:56Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 18, 'structuralMetadata.columnName': 18, 'structuralMetadata.columnDescription': 18, 'structuralMetadata.dataType': 18, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '29a7a5cf-b011-451c-9041-dedf358f43d3', 'description': 'Sample Manifest', 'name': 'Sample', 'dataElementsCount': 18, 'dataElements': 'c1699d75-d8fe-4618-baa0-c87bea745bc7, b2f15bed-cf11-46f4-a1e0-f49ef1294564, a280edaa-da9a-444f-9fda-d2447881b122, 77cc1423-4f89-4533-bd4f-373f170d80a4, 2976e712-4ddd-4823-9913-79f2064a4f83, 378033d8-d609-47ac-a804-8eeb78c3a6cb, 9e049c80-80f3-45dd-8625-514fe4034322, 8d5d9950-dd01-411f-8a71-13938d60699d, 42f3e6c7-c7c7-4ea6-a5c3-c8995d491d16, be8c6259-7b40-4dba-ae34-d4904907ceed, 70753120-18a1-434d-b33d-2a8535305adb, e404f882-7f2d-452e-beed-23fef1bb01f6, 7dba6e39-37aa-443c-902f-c04739480c3e, 71654788-7761-4431-aad7-5adbe1577abd, 9a168897-c0d6-404b-8dd0-88c4134adc4e, 8557a699-8468-434d-919b-237a67dd0dbe, 0e0a2698-5dd7-40fd-b3fd-466b92335bc3, bd8d23ba-139c-402c-8646-acda614e9134'}]}"
"{'title': 'National Asthma and COPD Audit Programme (NACAP):COPD and adult asthma secondary care organisational dataset', 'publisher': {'name': 'HQIP', 'contactPoint': 'DataSharing@hqip.org.uk', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'DataSharing@hqip.org.uk', 'keywords': ['Asthma', 'COPD', 'Secondary Care Organisational Dataset', 'Adult Asthma', 'NACAP', 'Audit'], 'abstract': 'Organisational survey data collected on admissions numbers and beds, staffing levels, access to specialist staff/services, 7-day working, management and integration of care, patient and carer engagement, transitional care, cost reimbursement.'}",1982d9ef-890a-41ff-a86a-de61d65aaa09,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'a43bd444-e151-4579-8c43-b1526c4e6b66', '3.0.0': '04fb4aac-415b-4493-986b-65bbef5214d3', '1.0.0': '6aa1acdc-c4b9-4ac4-89e6-e26ac6a067ea', '2.0.0': '9beca627-12cd-4231-8638-93cf0bdfa413', 'latest': '04fb4aac-415b-4493-986b-65bbef5214d3'}","{'description': 'Contains organisational survey data collected from hospitals in England, Wales and Scotland between 1 April 2019 and 1 July 2019. Includes data on admissions numbers and beds, staffing levels, access to specialist staff/services, 7-day working, management and integration of care, patient and carer engagement, transitional care, cost reimbursement.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",04fb4aac-415b-4493-986b-65bbef5214d3,https://web.www.healthdatagateway.org/dataset/04fb4aac-415b-4493-986b-65bbef5214d3,"{'access': {'jurisdiction': 'GB-GBN', 'deliveryLeadTime': 'OTHER', 'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data\nhttps://www.rcplondon.ac.uk/projects/outputs/national-asthma-and-copd-audit-programme-nacap-resources'}}",,2020-01-13T14:55:16Z,,3.0.0,,2021-04-14T08:13:19Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Bowel Screening Wales', 'abstract': 'NHS Screening Services - Bowel Screening Data. The aim of the bowel screening programme is to identify cancer early when treatment is more likely to be successful and also remove precancerous growths.', 'keywords': ['Bowel', 'Screening', 'SAIL'], 'publisher': {'contactPoint': 'SAILDatabank@swansea.ac.uk', 'name': 'SAIL', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'doiName': 'In Progress'}",9f29d47e-4e9a-41b8-b7bc-5ef3570294ef,"{'spatial': 'Wales', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'OTHER', 'typicalAgeRange': '60-74', 'pathway': 'Secondary care'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'cc53fbb7-89ee-46af-9398-e26121c3f97a', '4.0.0': '05716e41-9842-4c07-8ddd-af9f9231e056', '0.0.1': '2f466a0a-349e-48e7-94ab-4eb528ff6a32', '3.0.0': '2c764139-22a3-4db9-89ee-583fdb9d9396', '2.0.0': 'a450ebf7-7779-48a8-8d08-892a7a650399', 'latest': '05716e41-9842-4c07-8ddd-af9f9231e056'}","{'description': 'Administrative and clinical information for bowel screening; currently offered to men and women who are resident in Wales aged between 60 and 74 years old.', 'isPartOf': 'No Group', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/', 'https://www.youtube.com/watch?v=ZK9-Jw3uVkw']}",05716e41-9842-4c07-8ddd-af9f9231e056,https://web.www.healthdatagateway.org/dataset/05716e41-9842-4c07-8ddd-af9f9231e056,"{'access': {'dataProcessor': 'SAIL Databank', 'dataController': 'Public Health Wales NHS Trust', 'accessRequestCost': 'Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). 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Results can be: inadequate; negative; borderline changes; mild/moderate/severe dyskaryosis; glandular neoplasia; or evidence no referral smear.', 'name': 'REF_SMEAR_RESULT', 'dataElementsCount': 7, 'dataElements': 'c8219412-90c0-4ba6-b5da-8d7a97d9a6f8, d4bcdb15-adb6-411f-a410-e23e44815f57, babf78b9-7815-4480-be1b-78885ae99f17, a0e61834-2889-4c88-9272-99d26498665e, 8d6cdd50-eb08-4ad7-af20-e2fb2f3e3723, 4e668f92-2561-4f7e-81db-213fb64d6220, 3ae017e4-c3a8-4cd0-9b49-b99358423b26'}, {'id': '5e7f5e1d-957b-44cd-8681-6f4b247610ef', 'description': 'Contains details of what action [if any] or referral is recommended or performed based upon current bowel screening test result. This can range from scheduling further routine tests/smears, no action, or referral to a gynaecologist or other relevant specialist. Data available from the end of October 2008 onwards.', 'name': 'ACTION', 'dataElementsCount': 6, 'dataElements': '284b8d02-7f72-4c72-9955-b5e0d71517cc, e81222a3-f40d-4078-a869-18e572d5ad2b, 32238582-ddc1-42af-ac17-dcf0b4402e78, 82082af3-faef-471b-9215-e6316f587265, 42a52b86-da5e-444e-bdd6-13cea842b277, 93242346-8788-4ab5-a1e0-4e2a3de7e19c'}, {'id': 'cf203949-5ca4-44eb-ab10-7a03700b2925', 'description': 'Actions taken following the result of bowel screening test.', 'name': 'SCRN_ACT', 'dataElementsCount': 6, 'dataElements': '4491d8df-4fbe-4b5f-b6af-309e154dff35, e4d0da5b-af44-46f7-85ca-737e2378e7d0, 4e6033e5-b405-4cda-ad7a-19a30f5a9195, 119847ce-c6e8-40ab-b261-7155973fa18d, 240fa254-e8da-47c3-a6a9-35a2853ae2d9, 83072a16-6a3a-4741-b431-770a9e827966'}, {'id': 'a3ea16d8-24f0-46a8-b1df-92a7ea5378ed', 'description': 'This is a reference table combining all other tables.', 'name': 'SCRS_REF', 'dataElementsCount': 8, 'dataElements': '7c124d7e-0454-44d0-8268-6e783b8cd86f, d2a259c8-acc2-4f77-93d4-c538dbeafe28, ec8ce459-bcbd-4078-8d8e-aceacb2f5c0a, fccac52e-46b3-4089-8242-caf985579264, b33ef21a-b4fb-42fa-808e-9008427abad8, 490dd027-b56b-44e5-8c3b-6654eae59830, fea2d9c9-913c-43ea-b8cc-eac4e521c104, 7b55b4b8-77e4-4f23-9a1f-fb7fc4611649'}, {'id': 'fd005098-b447-4615-9ef7-478298ae42df', 'description': 'This identifies the origin of referral/treatment, e.g. the kind of facility - NHS, clinic, or otherwise.', 'name': 'SOURCE', 'dataElementsCount': 6, 'dataElements': '9e342b94-05c9-4b41-89cb-793021916471, d6ab55d2-2791-4d6a-a346-dcdf4aee208f, ecc8bc66-ddf0-4a39-aac6-71bd3d7ff9a6, 44d8352c-5530-4fd2-83fe-cafe4201544b, 04616d1b-1ddd-40a4-93e3-2f38da094ccb, f7abb442-4b1a-4f88-b6db-1a7488373d67'}, {'id': '8d84f545-2733-4f0c-9ee8-4b45daff6d01', 'description': 'Denotes any recommendations, additional tests preformed, or recommended future actions for bowel cancer treatment.', 'name': 'FUTURE_MGMT', 'dataElementsCount': 6, 'dataElements': '83fff4cf-e396-4058-a613-9c8c267b773f, b527dbca-ef68-4d6a-a0f8-236cbe3e8e10, 74d54ceb-d525-4ebb-b9d9-4fa10be6e9c3, 65931bee-ee39-4124-891f-87272ccd5d3f, 3c01bacc-8c6f-45df-956f-5ac3be1b0325, 4844e24e-2004-44a3-bb6e-55a6715bfb9a'}, {'id': '4029b826-c5aa-4ab8-901d-7aa175b7fe93', 'description': 'Type of appointment scheduled, usually following a positive bowel screening test. Data available from the end of October 2008 onwards.', 'name': 'APPT_TYPE', 'dataElementsCount': 6, 'dataElements': '4336f7a1-3643-4e42-a8d7-2b9e9a379975, 30b3d586-4096-4d59-a3ce-44c3646862f5, b94d2dd2-3a39-4fde-afb9-74722e3d558d, c49d65e5-0bbf-4c81-a990-8502e8dcf55e, 2915a900-577c-4fa4-ad1e-6fb95fd9299b, e7a7bbae-6803-4aa0-9e19-6e7236fd6440'}, {'id': 'c92f203e-7988-4611-8461-f7ea5dcc8c49', 'description': 'The method of surgery performed [if any].', 'name': 'SURG', 'dataElementsCount': 6, 'dataElements': 'fb4fece9-4575-4be5-9e19-f569ec6be412, e41b51ef-88ec-4181-9864-4b8524d0be25, d5c455b1-9148-416d-ad11-c88e8ba86415, 6ea5d929-30c0-4906-830d-174ff9332676, fb1b9e9c-bc92-43a9-81fb-cd6c3c06777a, faec6028-0b72-4738-a77d-91f6e444c4ac'}, {'id': '430eb158-16d4-4e4d-8eda-cd9aafcf86d8', 'description': 'Attendance details for all appointments scheduled for/by patients. Data available from the end of October 2008 onwards. IMPORTANT - these bowel screening Wales appointment codes DO NOT follow standard NHS National Codes for attendance [as per source documentation link].', 'name': 'APPT_ATT', 'dataElementsCount': 6, 'dataElements': 'c8f90a71-0f83-409e-b14c-c16c77b98c41, 2f5f1dd1-b739-4984-8a76-82862fefc6fa, e3a44ea4-8f7f-4d27-b405-9e176670d4ee, 6348a6cb-4a57-40f9-ba41-783b0aba8ba1, 5af8c383-8872-4e7a-a02f-4bf852225a65, 7c28d5e4-73d5-4416-a259-d19bd2da5456'}, {'id': 'b2a46bb9-946f-4e69-8791-3d190fcb50b0', 'description': 'Encrypted Unique Bowel Screening Wales ID reference number, joined with Encrypted Anonymised Linking Field (ALF), to give demographic information for Bowel Screening individuals and tests/results by anonymised individual, as well as geographic data down to the LSOA level.', 'name': 'BSW_ALF', 'dataElementsCount': 8, 'dataElements': '2d53ccd5-6a67-4393-ab4a-955ea0ccb179, 75c13af4-bbfc-4b53-a4c8-2c0d80fed9f4, 173ab29a-caae-4de6-81aa-3d341d3e406a, 7a5c95ba-5a05-4115-bba4-2a77e362b50e, f21929d8-676d-45ae-8f7d-f7de97a8ee8b, 302f48eb-9e2e-4a83-95b3-290a2a6d0fc8, 7037c530-e636-40c5-8607-8c7e1ef3c9ee, efdd4c0b-ab92-453d-95bb-21eb2333522c'}, {'id': 'ca80894e-d8d1-4964-8fe2-4304f5a361ee', 'description': 'Contails details of all bowel screening tests received back from participants. Tests are performed using either FOB kit or FIT kit. Data available from the end of October 2008 onwards. NOTE - response rate by region/LSOA varies, despite all men and women aged 60 to 74 who are registered with a GP in England and Wales are automatically sent a bowel cancer screening kit every 2 years.', 'name': 'BSW_TESTS', 'dataElementsCount': 8, 'dataElements': '8971a0ce-290b-4b4f-bb36-f4dd1b5daf08, 146dd03e-c0ee-4940-a136-4423bf5911c9, 8a1ab422-b716-4b37-b88f-42c957d5b698, 918e709b-23a3-4d9a-8aa7-986236c1be0d, 8b1c30b4-2958-4ee8-bbc3-8626a02dd4a5, 9bca3dd7-334d-46ec-87b5-00d25d6939b7, 7434ad76-7cf7-4aed-9ed3-7e379f1f05bd, e7bab235-07e3-4b31-b85e-1816c34ebfe8'}, {'id': '494279dc-4351-474f-bad5-3332827faae5', 'description': 'The type of invitation sent by Bowel Screening Wales to an individual. This can range from self-referrals, initial invites [age-dependant], or other routine/ongoing invites. Eligible participants are identified from the Welsh Demographic System [WDS] - typically registered with a GP - and invited for screening, with men and women aged 60 to 74 years being sent a bowel cancer screening kit every two years. Evidence does not support population screening for those aged over 74, however future opt-ins may be allowed. Invitation data available from the end of October 2008 onwards. NOTE - In Wales, there is an improvement plan to offer screening to those aged 50- 59 by April 2023 and NHS have developed a plan to achieve this in stages.', 'name': 'INVITE_TYPE', 'dataElementsCount': 6, 'dataElements': 'b46631d7-e582-4b30-b6a1-514e0f9fb562, 415049be-d61e-4911-9d7d-882c1b604df2, f05101e5-740d-49e9-9c67-ba7ac142c8b5, a85b9a0a-62bf-422e-ab69-fc1b349003d7, 64fc308b-970d-4b88-bd3c-96ad7abb01c9, aa4c9d88-258c-4fc7-916b-db1aac628b4d'}, {'id': '6b83fed6-dd46-40b8-969d-a1792dea78b0', 'description': 'The type of recall invitation sent by Bowel Screening Wales to an individual. Recall invitations can range from suspended, cancelled, continued routine, repeat advised, and etc.', 'name': 'RECALL', 'dataElementsCount': 6, 'dataElements': 'bec7b5d1-7f1e-4db6-87b4-f6b11bfb23e6, 15167ae9-ad0a-446a-b70d-96410f8b7a30, 618daffc-6757-46bb-b97c-f6d2847529b5, 56fad3ac-0c61-4222-8894-ccb9584da0ef, 9c566b69-b768-4057-b09e-2afb8612703b, a83edcf5-73ef-4fec-9096-03a69e032ff2'}, {'id': '4e3a082b-4dc9-463b-9344-985380190638', 'description': 'Results of bowel cancer test or full screening colonoscopy.', 'name': 'RESULT', 'dataElementsCount': 7, 'dataElements': '6309f0b2-e040-49ed-a6df-99312fb5b780, 448bf26a-4c4c-4484-ada6-439065e935a2, 3cbdd1d9-5153-4b46-b722-ea33897f076c, 4dd068c9-d54f-48b2-bbc3-9e5c69e03841, 8683d6e3-a420-46bb-86c6-a7a5915b2b80, 7714a72f-b693-4b5d-b8a9-9c929cb2c02b, b933c430-e3ed-482c-bbe3-1c9a2086b122'}, {'id': 'be043ae7-e710-4950-ad10-b34096213c7d', 'description': 'Explains the type of treatment used to treat bowel cancer, e.g. laser ablation, knife cone, cryotherapy, and etc.', 'name': 'TREAT', 'dataElementsCount': 6, 'dataElements': '5ddbeee2-9da1-483a-9989-575bd60dad42, ae69f40e-3128-4311-8091-b528328a1f6a, 39cd4974-2b4a-4e75-b162-2db07c8e7bb7, 9338c554-fc23-497e-8965-c52788fc091b, ba6b0932-011d-44c8-b360-88788cb30371, b2c0d1a7-d163-4e80-bfdf-2bf73a121c79'}]}"
"{'title': 'COVID-19 Shielded People list', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'publisher': {'contactPoint': 'SAILDatabank@swansea.ac.uk', 'name': 'SAIL', 'memberOf': 'ALLIANCE'}, 'doiName': 'In Progress', 'keywords': ['coronavirus', 'shielded', 'covid', 'SAIL', 'NCS', 'National Core Study', 'COVID-19'], 'abstract': 'List of high-risk people advised to self-isolate during Covid pandemic.'}",dc22db56-8791-4e96-9ce6-6b6a58b1241f,"{'pathway': 'Covid-19 specific', 'followup': 'OTHER', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150', 'spatial': 'Wales'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'8.0.0': '0ecd2b01-88bd-41a2-82fd-8bb7544caecd', '10.0.0': '05a0baf4-72ea-4e02-b4fb-64c37bb1eb0e', '7.0.0': 'c84321f3-caf3-4b40-a41a-5ccebe5bb1aa', '6.0.0': 'a0882580-5021-4b87-8297-c5990bbe062b', '5.0.0': '8d89da6f-e0c7-436e-bf56-697137221b5f', '3.0.0': '5f5a1adb-8b4e-4489-a68f-5e8a9d9eb80c', '4.0.0': 'e7d0131d-9022-473d-a9a3-f8a22d76c55b', '9.0.0': '67ef8ade-51e6-4737-acee-be871751a698', '2.0.0': '978b24ad-81a1-4046-b74f-d4e4abc4af5b', '1.0.0': '61fb7abd-b0d9-4887-b474-57b1f1d0130a', '0.0.1': 'ff1632f6-16da-4196-8ce4-ef65d9f92e29', 'latest': '05a0baf4-72ea-4e02-b4fb-64c37bb1eb0e'}","{'description': 'The Chief Medical Officer (CMO) for England, working with the CMOs of the devolved nations and other senior clinicians, commissioned NHS Digital to produce a list of people at “high risk” of complications from COVID-19, who should be shielded for at least 12 weeks. The CMO for Wales commissioned a collaboration of national bodies in Wales (NWIS, DU, NWSSP, PHW) to identify “high risk” people for the Welsh population, based largely on the NHS Digital methodology. This list is referred to as the Shielded Patient List (SPL). \n\nThe “high risk” list was defined as a subset of a wider group of people who may be “at risk”. Specific advice applies to these groups, currently this advice is:\n • “At Risk” – large group normally at risk from the flu - should practice strict social distancing \n• “At high risk” – a smaller sub-group (circa 70k), defined by CMO – should practice complete social “shielding” NHS Digital have described the methodology that has been used to identify patients who meet the high risk criteria due to their inclusion in one or more of the disease groups. \n\nAs there are differences in some of the systems used across the devolved nations, nuanced differences in application and interpretation of CMO guidance, this document describes the Welsh methodology.\n\nhttps://nwis.nhs.wales/coronavirus/coronavirus-content/coronavirus-documents/covid-19-high-risk-shielded-patient-list-identification-methodology/', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://www.youtube.com/watch?v=ZK9-Jw3uVkw']}",05a0baf4-72ea-4e02-b4fb-64c37bb1eb0e,https://web.www.healthdatagateway.org/dataset/05a0baf4-72ea-4e02-b4fb-64c37bb1eb0e,"{'usage': {'resourceCreator': 'NWIS', 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'USER SPECIFIC RESTRICTION'], 'isReferencedBy': ['Not Available'], 'dataUseLimitation': 'RESEARCH SPECIFIC RESTRICTIONS', 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/']}, 'access': {'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'dataProcessor': 'SAIL Databank', 'deliveryLeadTime': '2-6 MONTHS', 'accessRights': ['https://saildatabank.com/application-process/'], 'jurisdiction': 'GB-WLS', 'accessRequestCost': 'Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.', 'dataController': 'SAIL Databank'}, 'formatAndStandards': {'language': 'en', 'conformsTo': 'LOCAL', 'format': ['SQL database table'], 'vocabularyEncodingScheme': 'LOCAL'}}","{'origin': {'purpose': ['DISEASE REGISTRY', 'ADMINISTRATIVE'], 'source': 'EPR', 'collectionSituation': 'OTHER'}, 'temporal': {'accrualPeriodicity': 'STATIC', 'endDate': '2020-05-12', 'timeLag': 'NOT APPLICABLE', 'distributionReleaseDate': '2020-05-12', 'startDate': '2020-05-12'}}",2020-06-01T14:57:30Z,,10.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Yes. To any SAIL dataset & reference data.', 'ALL'], 'tools': ['https://conceptlibrary.saildatabank.com/']}",2021-04-09T18:33:43Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 10, 'structuralMetadata.columnName': 10, 'structuralMetadata.columnDescription': 10, 'structuralMetadata.dataType': 10, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'd916daad-38d7-4caa-9ed1-4a1c9bc0df2e', 'description': 'Information about shielded patients', 'name': 'DF_SHIELDED_PATIENTS', 'dataElementsCount': 10, 'dataElements': 'a537b3c9-c7e4-4512-ac5f-7eaf2dd3ebf2, 86e08f55-a026-46a2-9289-7267be6f288f, e28d1382-1e4f-4e9a-a74e-c9672570a3f5, 73a859b2-423d-4663-a506-4064f0cf21ab, cdd5a7d3-c680-4e40-90d4-b21d2d10514f, 6751812d-0a9c-4260-9f7a-b457d596b3bd, d0c13640-d12f-47e9-a334-cf55bca4ff3d, c4d22467-b3fa-4563-8fbc-53e97122ff98, 5af87b5f-ff59-46dd-a4a7-293b030f199c, d6d34480-2b0e-4e28-b23f-ea32d447a0f1'}]}"
"{'title': 'INCA Trial', 'publisher': {'contactPoint': 'ctc.inca@ucl.ac.uk', 'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE'}, 'doiName': 'Not Available', 'keywords': ['Trial', 'UKCRC Tissue Directory', 'INCA', 'IO-R-CVP', 'Gem-R-CVP', 'Malignant lymphoma (disorder)'], 'abstract': 'Collection of samples and data across the following diseases: Malignant lymphoma (disorder)', 'contactPoint': 'ctc.inca@ucl.ac.uk'}",edd55990-a616-4a9c-a4a2-38af136a349b,"{'physicalSampleAvailability': ['IN PROGRESS'], 'spatial': 'England', 'typicalAgeRange': '15-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'df977bea-3cf8-4d4b-bce9-1f44c956ef15', '3.0.0': '0664f988-276e-4268-af43-1986a3101f38', '1.0.0': '73ef38e5-287b-43c9-9cbf-62187bf4c2c2', '2.0.0': '16341d43-0e79-4afa-a84f-67db018e449f', 'latest': '0664f988-276e-4268-af43-1986a3101f38'}","{'description': 'INCA is a multicentre, randomised, phase II trial comparing IO-R-CVP with Gem-R-CVP in the first line treatment of patients with DLBCL who are not fit for anthracycline-containing chemotherapy. \n132 patients will be randomised to receive either IO-R-CVP or Gem-R-CVP.\nSamples collected for trial: 7ml EDTA blood sample taken at baseline; Formalin fixed paraffin embedded tumour block - both sent to HMDS, Leeds.  Blood serum sample (4.9ml)  taken at Baseline (between day -14 pre registration and day 1 pre-treatment), Cycle 1 day 3 (+/- 1 day), Cycle 1 day 8 (+/-1 day) and Cycle 2 day 1 (-1 day) to be sent to Cancer Research UK Manchester Institute, Macclesfield.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",0664f988-276e-4268-af43-1986a3101f38,https://web.www.healthdatagateway.org/dataset/0664f988-276e-4268-af43-1986a3101f38,"{'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}, 'access': {'accessRequestCost': 'Not specified', 'dataProcessor': 'Not Applicable', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'jurisdiction': 'GB-ENG', 'dataController': 'University College London', 'accessRights': 'Please contact the publisher using Contact Point details provided'}}","{'temporal': {'startDate': '2014-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:05:22Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:03:16Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'HCV Research UK', 'abstract': 'Collection of samples and data across the following diseases: Viral hepatitis type C', 'keywords': ['Research', 'UKCRC Tissue Directory', 'HCV', 'UK', 'Viral hepatitis type C'], 'publisher': {'name': 'TISSUE DIRECTORY', 'contactPoint': 'sarah.mcdonald@glasgow.ac.uk', 'memberOf': 'ALLIANCE'}, 'doiName': 'Not Available', 'contactPoint': 'sarah.mcdonald@glasgow.ac.uk'}",01492322-9b33-41cc-9f51-484024e45878,"{'typicalAgeRange': '0-150', 'spatial': 'Scotland', 'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM', 'WHOLE BLOOD']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '709f605f-219f-48b0-a53b-3b8c51083334', '3.0.0': '069c213c-eb04-463e-a300-7614c03cf623', '2.0.0': 'b3a10154-a409-491a-92fb-e7fac47ccd91', '0.0.1': 'a7b874d2-5214-4eb4-85d2-49a5071f6dbc', 'latest': '069c213c-eb04-463e-a300-7614c03cf623'}","{'description': ""HCV Research UK is a UK-wide consortium established in 2011 to underpin research into hepatitis C (HCV).  This was achieved by establishing a biorepository and clinical research database. The biorepository is housed in the MRC-University of Glasgow Centre for Virus Research, directed by Dr John McLauchlan and managed by Dr Sarah McDonald. Samples have been obtained from around 10,000 patients.\nAccess to samples and data is governed by a Tissue and Data Access Committee (TDAC). These are reviewed for ethical and scientific merit by TDAC and a decision reached. \nSerum and plasma are obtained from all patients in the cohort. Buffy coats are also collected, and DNA can be extracted when required. Additionally, peripheral blood mononuclear cells (PBMCs) and PAX gene tubes are held for smaller cohorts of patients. The extensive clinical data collected complements the biorepository and allows selection of samples from patients with characteristics of interest.\nSub-cohorts:\n-\tSerial samples from patients who were treated as part of the NHS England Early Access Program.\n-\tYearly samples from cirrhotic patients (beginning 2015)\n-\tSpontaneous resolvers\n-\tSmall paediatric cohort\nClinical Data\n-\tBasic demographics including place of birth and ethnicity\n-\tHistory of HCV infection including exposure to risk factors and dates\n-\tDate of diagnosis, date of first attendance at clinic\n-\tCo-morbidities and co-medications at time of enrolment\n-\tLiver disease status and how diagnosed\n-\tTreatment status at enrolment; \n-\tSocial history including alcohol, cigarettes, cannabis; BMI\n-\tHCV RNA status, viral load and genotype/subtype\n-\tHistorical data from the patients' notes regarding previous treatment episodes (dates, regimen, viral loads, outcome) and liver biopsies\n-\tLaboratory data including imaging and fibroscan;\n-\tNew treatment episodes and changes in liver disease status are recorded over time, as are any newly developed co-morbidities.\nAll data generated by researchers who access our biorepository must be returned into the database. Over time this will include host genetics, full length viral sequences, immunophenotyping and biomarker studies."", 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",069c213c-eb04-463e-a300-7614c03cf623,https://web.www.healthdatagateway.org/dataset/069c213c-eb04-463e-a300-7614c03cf623,"{'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}, 'access': {'jurisdiction': 'GB-SCT', 'dataProcessor': 'Not Applicable', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'dataController': 'University of Glasgow', 'accessRequestCost': 'Not specified', 'accessRights': 'Please contact the publisher using Contact Point details provided'}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}}","{'temporal': {'startDate': '2012-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:05:20Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T15:59:42Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'OMOP dataset: Hospital COVID patients: severity, acuity, therapies, outcomes', 'publisher': {'memberOf': 'HUB', 'contactPoint': 'PIONEER@UHB.NHS.UK', 'name': 'PIONEER'}, 'doiName': 'https://web.www.healthdatagateway.org/dataset/0eb789bb-0047-46ac-83ff-631f31e98da0', 'contactPoint': 'PIONEER@UHB.NHS.UK', 'abstract': 'Hospital COVID patients 6.01.2020-20.08.2020). Granular severity, ethnicity, co-morbidity.  Serial acuity, physiology, blood biomarkers, treatments, ITU, outcome. Deeply phenotyped, longitudinal.', 'keywords': ['COVID', 'Covid-19', 'Acuity score', 'Coronavirus', 'NEWS2', 'SEWS', 'AVPU', 'age', 'sex', 'ethnicity ', 'physiology', 'vital signs', 'biomarkers', 'd-dimer', 'troponin', 'CRP', 'sepsis', 'symptoms', 'outcomes', 'intensive care', 'ventilated', 'do not resuscitate orders', 'secondary care records', 'high flow nasal oxygen', 'treatments', 'antibiotics', 'secondary infections', 'outcomes', 'discharge', 'death', 'length of stay', 'multimorbidity']}",0eb789bb-0047-46ac-83ff-631f31e98da0,"{'typicalAgeRange': '0-100', 'followup': 'OTHER', 'pathway': 'Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.  A matched non-COVID control population can be generated upon request.', 'spatial': 'West Midlands Region, UK', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '1507fc77-2694-4345-9b70-2fe3c4d9bdb2', '2.0.0': '06dee089-8c10-4a8b-aa94-7cb699dc3c80', '0.0.5': 'bf607b38-bedf-4bda-a3ce-e6b1bb68d1df', 'latest': '06dee089-8c10-4a8b-aa94-7cb699dc3c80'}","{'description': 'OMOP dataset: Hospital COVID patients: severity, acuity, therapies, outcomes\nDataset number 2.0\n\nCoronavirus disease 2019 (COVID-19) was identified in January 2020.  Currently, there have been more than 6 million cases & more than 1.5 million deaths worldwide.  Some individuals experience severe manifestations of infection, including viral pneumonia, adult respiratory distress syndrome (ARDS) & death.  There is a pressing need for tools to stratify patients, to identify those at greatest risk.  Acuity scores are composite scores which help identify patients who are more unwell to support & prioritise clinical care. There are no validated acuity scores for COVID-19 & it is unclear whether standard tools are accurate enough to provide this support. This secondary care COVID OMOP dataset contains granular demographic, morbidity, serial acuity and outcome data to inform risk prediction tools in COVID-19.\n\nPIONEER geography\nThe West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix. There is a higher than average percentage of minority ethnic groups. WM has a large number of elderly residents but is the youngest population in the UK.  Each day >100,000 people are treated in hospital, see their GP or are cared for by the NHS. The West Midlands was one of the hardest hit regions for COVID admissions in both wave 1 & 2.\n\nEHR. University Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & 100 ITU beds. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.  UHB has cared for >5000 COVID admissions to date.  This is a subset of data in OMOP format.\n\nScope: All COVID swab confirmed hospitalised patients to UHB from January – August 2020.  The dataset includes highly granular patient demographics & co-morbidities taken from ICD-10 & SNOMED-CT codes.  Serial, structured data pertaining to care process (timings, staff grades, specialty review, wards), presenting complaint, acuity, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations), all blood results, microbiology, all prescribed & administered treatments (fluids, antibiotics, inotropes, vasopressors, organ support), all outcomes.  \n\nAvailable supplementary data:\nHealth data preceding & following admission event. Matched “non-COVID” controls; ambulance, 111, 999 data, synthetic data. Further OMOP data available as an additional service.\n\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://www.pioneerdatahub.co.uk/wp-content/uploads/Covid-Acuity-OMOP-Infographic.pdf']}",06dee089-8c10-4a8b-aa94-7cb699dc3c80,https://web.www.healthdatagateway.org/dataset/06dee089-8c10-4a8b-aa94-7cb699dc3c80,"{'access': {'jurisdiction': 'GB', 'deliveryLeadTime': '1-2 MONTHS', 'accessRequestCost': 'www.pioneerdatahub.co.uk/data/data-services-costs/', 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'dataProcessor': 'NOT APPLICABLE', 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'dataController': 'University Hospitals Birmingham NHS Foundation Trust'}, 'formatAndStandards': {'vocabularyEncodingScheme': ['SNOMED CT', 'DM+D', 'LOINC', 'ICD10'], 'conformsTo': 'OMOP', 'format': ['SQL'], 'language': 'en'}, 'usage': {'resourceCreator': 'This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)', 'dataUseLimitation': 'GENERAL RESEARCH USE', 'dataUseRequirements': 'PROJECT SPECIFIC RESTRICTIONS'}}","{'temporal': {'accrualPeriodicity': 'STATIC', 'timeLag': 'LESS 1 WEEK', 'startDate': '2020-01-01', 'endDate': '2020-06-30', 'distributionReleaseDate': '2020-08-20'}, 'origin': {'collectionSituation': ['ACCIDENT AND EMERGENCY', 'IN-PATIENTS'], 'source': 'EPR', 'purpose': 'CARE'}}",2020-12-09T16:52:02Z,"[{'observedNode': 'Events', 'measuredValue': '43357 inpatients and A&E patients, including day cases.', 'disambiguatingDescription': 'NOT APPLICABLE', 'observationDate': '2020-06-30', 'measuredProperty': 'COUNT'}]",2.0.0,"{'qualifiedRelation': ['None'], 'tools': ['', ''], 'derivation': ['None']}",2021-02-25T15:21:12Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 8, 'structuralMetadata.tableName': 8, 'structuralMetadata.tableDescription': 8, 'structuralMetadata.dataElementsCount': 49, 'structuralMetadata.columnName': 49, 'structuralMetadata.columnDescription': 49, 'structuralMetadata.dataType': 49, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'aa2692a5-20ae-49f9-91de-712663bc4368', 'description': ""meta-attributes of various records in other tables, such as 'estimated' qualifiers on certain measurements"", 'name': 'fact_relationship', 'dataElementsCount': 5, 'dataElements': 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"{'title': 'Prospective Observation of Fibrosis in the Lung Clinical Endpoints', 'publisher': {'memberOf': 'HUB', 'name': 'BREATHE', 'contactPoint': 'breathe.saildatabank@swansea.ac.uk'}, 'contactPoint': 'breathe.saildatabank@swansea.ac.uk', 'abstract': 'The PROFILE study is a longitudinal observational study of patients with Idiopathic Pulmonary Fibrosis and Nonspecific Interstitial Pneumonitis. Patients were recruited to the study within 6 months of diagnosis and followed up for three years.', 'doiName': 'In Progress', 'keywords': ['Clinical', 'Lung', 'Idiopathic Pulmonary Fibrosis', 'Observation', 'BREATHE']}",bb8de9d2-cc38-4c40-b104-ffd167f64f76,"{'followup': '1 - 10 YEARS', 'spatial': 'England', 'typicalAgeRange': '30-89'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '08cb3023-e689-4056-8280-c154181b5789', '4.0.0': '0715a950-3999-46d8-a646-6496866638a1', '1.0.0': '11682655-1985-42e1-8b4a-a4f7dbd359c3', '3.0.0': '50feb9f3-3be8-4690-913b-bd462d27d3db', '2.0.0': '790b4ea5-3da0-4f14-a93b-63b25e2bd488', 'latest': '0715a950-3999-46d8-a646-6496866638a1'}","{'description': 'https://clinicaltrials.gov/ct2/show/NCT01134822\n\nThe PROFILE study is a longitudinal observational study of patients with Idiopathic Pulmonary Fibrosis and Non Specific Interstitial Pneumonitis. Patients were recruited to the study within 6 months of diagnosis and followed up for three years with physiological, biological, genetic and quality of life assessments assessments at various intervals over these three years. The aim of this study was to understand the natural history of fibrotic lung disease and identify factors that would be able to predict the heterogenous disease course amongst these patients.', 'isPartOf': 'NOT APPLICABLE'}",0715a950-3999-46d8-a646-6496866638a1,https://web.www.healthdatagateway.org/dataset/0715a950-3999-46d8-a646-6496866638a1,"{'formatAndStandards': {'language': 'en', 'conformsTo': 'LOCAL', 'vocabularyEncodingScheme': ['LOCAL', 'READ', 'NHS NATIONAL CODES'], 'format': ['CSV']}, 'usage': {'isReferencedBy': ['Jenkins et al. 2015. Longitudinal change in collagen degradation biomarkers in idiopathic pulmonary fibrosis: an analysis from the prospective, multicentre PROFILE study. https://doi.org/10.1016/S2213-2600(15)00048-X'], 'dataUseRequirements': 'PROJECT SPECIFIC RESTRICTIONS', 'resourceCreator': 'The PROFILE (Central England) cohort was generated at The Nottingham University NIHR respiratory Biomedical Research Unit with funding from a Medical Research Council (MRC MICA award G0901226).', 'dataUseLimitation': 'GENERAL RESEARCH USE'}, 'access': {'dataProcessor': 'BREATHE', 'accessRights': ['https://saildatabank.com/application-process/'], 'accessRequestCost': 'Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements', 'jurisdiction': 'GB', 'dataController': 'BREATHE'}}","{'temporal': {'accrualPeriodicity': 'STATIC', 'distributionReleaseDate': '2017-10-05', 'startDate': '2010-07-26', 'endDate': '2017-10-05', 'timeLag': 'NOT APPLICABLE'}, 'origin': {'source': ['EPR', 'ELECTRONIC SURVEY'], 'collectionSituation': ['CLINIC', 'PRIMARY CARE'], 'purpose': ['STUDY', 'DISEASE REGISTRY']}}",2020-01-13T15:48:21Z,,4.0.0,"{'qualifiedRelation': ['At the moment there are no other linked datasets but there is the possibility to link to other datasets via NHS Digital etc.'], 'derivation': ['Not Available']}",2021-03-01T18:18:43Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'COVID-19 Sequence Data', 'publisher': {'name': 'SAIL', 'memberOf': 'ALLIANCE', 'identifier': '5f3f98068af2ef61552e1d75'}, 'keywords': ['COVID-19', 'SARS-CoV-2', 'SAIL'], 'abstract': 'The dataset provides information about SARS-CoV-2 variants of concern and\nvariants under investigation in Wales. This includes phylogenetic and mutational information about samples.', 'contactPoint': 'SAILDatabank@swansea.ac.uk'}",602cbc9b-0113-4712-8c4a-0efe8d86b77c,"{'followup': '0 - 6 MONTHS', 'typicalAgeRange': '0-150', 'pathway': 'COVID-19', 'spatial': 'https://www.geonames.org/2634895/', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '077a21b9-5c5a-4c68-a9f0-b4fa3384aead'},"{'description': 'The dataset provides information about SARS-CoV-2 variants of concern and\nvariants under investigation in Wales. 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"{'title': 'The impact of COVID on hospitalised patients with COPD; a dataset in OMOP', 'publisher': {'contactPoint': 'Pioneer@UHB.NHS.UK', 'name': 'PIONEER', 'memberOf': 'HUB'}, 'abstract': 'Hospital patients admitted during the COVID pandemic with a focus on COPD. Granular condition,  multi-morbidity. Serial physiology, blood biomarkers, treatments, interventions, ITU spells, outcome, pre/post admission healthcare use. Deeply phenotyped.', 'doiName': 'https://web.www.healthdatagateway.org/dataset/323dc330-aad9-472a-b579-ab66f5f75906', 'keywords': ['COPD', 'chronic bronchitis', 'emphysema', 'nhs', 'acute', 'exacerbation', 'COVID', 'pneumonia', 'pneumonitis', 'NEWS2', 'deterioration', 'alert ', 'SEWS', 'nebuliser', 'prednisolone', 'steroids', 'corticosteroids', 'oxygen', 'non-invasive ventilation', 'patient', 'acute hospitals', 'inpatient', 'ethnicity', 'multi-morbidity ', 'blood ', 'biomarkers', 'physiology', 'demographics', 'treatments', 'therapies', 'interventions', 'outcomes', 'death', 'longitudinal', 'vital signs'], 'contactPoint': 'Pioneer@UHB.NHS.UK'}",323dc330-aad9-472a-b579-ab66f5f75906,"{'followup': '0 - 6 MONTHS', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'West Midlands', 'pathway': 'Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data. Data includes those with and without COPD admitted during the first wave of the COVID pandemic.', 'typicalAgeRange': '18-108'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '9e965a9f-4213-43f3-9033-c7df1610ceb5', '1.0.0': '07e3ac82-a38d-45f3-9933-07439f6a761d', 'latest': '07e3ac82-a38d-45f3-9933-07439f6a761d'}","{'description': 'Background.\nChronic obstructive pulmonary disease (COPD) is a debilitating lung condition characterised by progressive lung function limitation.   COPD is an umbrella term and encompasses a spectrum of pathophysiologies including chronic bronchitis, small airways disease and emphysema.  COPD caused an estimated 3 million deaths worldwide in 2016, and is estimated to be the third leading cause of death worldwide.  The British Lung Foundation (BLF) estimates that the disease costs the NHS around £1.9 billion per year. COPD is therefore a significant public health challenge.  This dataset explores the impact of hospitalisation in patients with COPD during the COVID pandemic.\n\nPIONEER geography\nThe West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix. There is a higher than average percentage of minority ethnic groups. WM has a large number of elderly residents but is the youngest population in the UK.  There are particularly high rates of physical inactivity, obesity, smoking & diabetes.  The West Midlands has a high prevalence of COPD, reflecting the high rates of smoking and industrial exposure. Each day >100,000 people are treated in hospital, see their GP or are cared for by the NHS.\n\nEHR. University Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & 100 ITU beds. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”. \n\nScope: All hospitalised patients admitted to UHB during the COVID-19 pandemic first wave, curated to focus on COPD.  Longitudinal & individually linked, so that the preceding & subsequent health journey can be mapped & healthcare utilisation prior to & after admission understood.  The dataset includes ICD-10 & SNOMED-CT codes pertaining to COPD and COPD exacerbations, as well as all co-morbid conditions.  Serial, structured data pertaining to process of care (timings, staff grades, specialty review, wards), presenting complaint, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations), all blood results, microbiology, all prescribed & administered treatments (fluids, nebulisers, antibiotics, inotropes, vasopressors, organ support), all outcomes.  Linked images available (radiographs, CT).\n\nAvailable supplementary data:\nMore extensive data including wave 2 patients in non-OMOP form. Ambulance, 111, 999 data, synthetic data.\n\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://www.pioneerdatahub.co.uk/wp-content/uploads/COPD-OMOP-infographic-V2-page-001-1216x1536.jpg']}",07e3ac82-a38d-45f3-9933-07439f6a761d,https://web.www.healthdatagateway.org/dataset/07e3ac82-a38d-45f3-9933-07439f6a761d,"{'access': {'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'jurisdiction': 'GB', 'accessService': 'Trusted Research Environment on Microsoft Azure cloud server (UK South).  Creating the environment will be subject to a charge following approval of data request. The PIONEER team will work with you to ensure the relevant compute power and tooling is available to support your analytical needs.', 'accessRequestCost': 'https://www.pioneerdatahub.co.uk/data/data-services-costs/', 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'deliveryLeadTime': '1-2 MONTHS', 'dataProcessor': 'Not Applicable'}, 'usage': {'resourceCreator': 'This publication  uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)', 'dataUseRequirements': 'COLLABORATION REQUIRED', 'dataUseLimitation': 'RESEARCH USE ONLY', 'investigations': ['https://www.decovid.org/']}, 'formatAndStandards': {'language': 'en', 'conformsTo': 'OMOP', 'vocabularyEncodingScheme': ['SNOMED CT', 'ICD10'], 'format': ['SQL']}}","{'origin': {'purpose': 'OTHER', 'collectionSituation': ['OUTPATIENTS', 'IN-PATIENTS', 'COMMUNITY'], 'source': 'EPR'}, 'temporal': {'endDate': '2020-09-09', 'startDate': 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"{'title': 'Careers Wales dataset', 'abstract': 'Careers Wales dataset. Represents interactions and services provided by Careers Wales to clients throughout Wales over the period 01/04/2012 to 31/03/2020.', 'keywords': ['SAIL', 'CARW', 'Careers Wales'], 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'publisher': {'contactPoint': 'SAILDatabank@swansea.ac.uk', 'memberOf': 'ALLIANCE', 'name': 'SAIL'}, 'doiName': 'In Progress'}",e4004e0e-6adb-4b11-82c2-af0caf61d751,"{'typicalAgeRange': '16-150', 'pathway': 'Not Applicable. Careers dataset.', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'OTHER', 'spatial': 'Wales'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '007e20d2-f883-47c2-abdc-481b574382b2', '1.0.0': '08846261-45f0-4bcf-9801-fe785dcef1c9', 'latest': '08846261-45f0-4bcf-9801-fe785dcef1c9'}","{'description': 'Careers Wales dataset.\n\nThe data supplied to SAIL represents interactions and services provided by Careers Wales to clients throughout Wales over the period 01/04/2012 to 31/03/2020. At the start of this period, the Careers Wales had just been formed from six regional Careers companies, and their CRM system was initially populated with imports from the preceding companies’ systems. Between 2012 and the present Careers Wales has worked to rationalise the varied approaches to recording, enhance the quality and suitability of the data they gather, and to simplify the data entry requirements for their staff as far as possible. Therefore users of the data will very likely notice changes over time in the nature of the data.\n\nCareers Wales stores information on all its interactions, services provided, etc. as entities called histories. Within their CRM, different on-screen fields can be enabled or disabled for different history types – therefore a history representing a Group Session would contain information on the duration of the session, the topic and the venue; whereas a history for a Traineeship Referral Form completion would not display any of these fields.\n\nAll the numerically coded columns in Careers Wales’ supplied data can be decoded via the accompanying lookup file - HISTORIES_LOOKUP_1545_20200821.CSV.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/']}",08846261-45f0-4bcf-9801-fe785dcef1c9,https://web.www.healthdatagateway.org/dataset/08846261-45f0-4bcf-9801-fe785dcef1c9,"{'formatAndStandards': {'format': ['SQL database table'], 'language': 'en', 'conformsTo': 'LOCAL', 'vocabularyEncodingScheme': 'LOCAL'}, 'usage': {'dataUseLimitation': 'GENERAL RESEARCH USE', 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'resourceCreator': ['Careers Wales']}, 'access': {'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'deliveryLeadTime': '2-6 MONTHS', 'accessRights': ['https://saildatabank.com/application-process/'], 'accessRequestCost': 'Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.', 'jurisdiction': 'GB-WLS', 'dataController': 'SAIL Databank', 'dataProcessor': 'SAIL Databank'}}","{'temporal': {'distributionReleaseDate': '2020-08-21', 'accrualPeriodicity': 'STATIC', 'timeLag': '6 MONTHS PLUS', 'endDate': '2020-03-31', 'startDate': '2012-04-01'}, 'origin': {'collectionSituation': 'OTHER', 'source': 'OTHER', 'purpose': 'ADMINISTRATIVE'}}",2020-10-14T09:30:27Z,,1.0.0,"{'tools': ['https://conceptlibrary.saildatabank.com/'], 'derivation': ['Not Available'], 'qualifiedRelation': ['Linkable at the person level to any dataset with SAIL anonymised linkage field']}",2020-12-07T17:56:44Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 3, 'structuralMetadata.tableName': 3, 'structuralMetadata.tableDescription': 3, 'structuralMetadata.dataElementsCount': 46, 'structuralMetadata.columnName': 46, 'structuralMetadata.columnDescription': 46, 'structuralMetadata.dataType': 46, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'c6fc9b52-7d70-4e20-bb6c-81c3d690732d', 'description': 'Careers Wales Histories/ Activity table.\n\nCareers Wales stores information on all its interactions, services provided, etc. as entities called histories. Within their CRM, different on-screen fields can be enabled or disabled for different history types – therefore a history representing a Group Session would contain information on the duration of the session, the topic and the venue; whereas a history for a Traineeship Referral Form completion would not display any of these fields.', 'name': 'HISTORIES_DATA_20200821', 'dataElementsCount': 26, 'dataElements': '8bade78f-35e4-49a9-b973-3819c10d9aa0, d8f442ee-853b-4b2e-8fd1-ac6f25afa744, d4e68d92-3fcc-4217-ae1d-8dfaaf6c3056, 6104cf0e-4997-46d9-84b2-0f4eabb263b3, 7ffb9009-c9e6-418d-90d3-e12a66483c6d, d35833d6-cbe6-466d-9a10-14b63040a074, c33e1429-a250-4864-a713-dfa0460a3f6a, 11270e87-f663-4e00-b1e5-bfb34f62339b, d06a75cf-684b-487b-9c7b-1354e4a66df1, 3525a6fc-9522-4605-83c4-734f2ea93a81, 4f20b5fc-1919-4a27-a1b4-38db6835c5ea, 28c320d6-428e-4c62-af1f-7a34bcfc567e, 356d1647-19c6-4713-a678-3df6529d4231, 30a3925a-1565-40c9-bebf-02ae50bb9116, 409e7f72-b24c-4a40-a40b-2bb04a259ae5, fd9a17fc-eeef-4953-ad89-bbd61b1b0177, b5035cbe-3833-46fc-83d5-4832a20dd660, 6380c46b-1e6d-47a1-8108-ebd6d8923775, 39609b75-136a-44ff-a5f4-4e136f5231fa, af1c1aed-2e7c-45c6-84b5-7feff81752ee, 043cdf07-c619-47cb-9ce7-ebf78a34515b, b6a9f424-f2bd-4346-ba26-7e4778b9e7dc, 45e3581c-eb80-41eb-91c9-ed578c745de6, 36142f98-2e7e-488a-93ab-1cff678af800, 6bb25c32-5540-40ef-95ff-c6355b681eb1, ff0b4a7d-df6e-4156-88cf-fac0e63b8e80'}, {'id': 'ab86ff32-f9ba-4706-9500-53e2125442bc', 'description': 'Careers Wales Alf table.', 'name': 'CW_ALF_20200902', 'dataElementsCount': 14, 'dataElements': '5f2829aa-af3a-47e2-9dda-03f1a614dffa, 0d12f66d-a326-47f3-a90d-7d2f222102d2, a74aabbe-ae15-49f3-b0a2-f85e4ff0ed60, e7ddc6ae-cd49-4b80-a47c-067a0355152c, cea7bfa9-c488-4da3-9097-b37829078acd, ad57f98c-da88-4702-9280-c6cbd032d106, c3df3331-d8fc-49dd-8a2a-f9d0143b2203, 2108578c-6f28-4ea4-87db-98999df0464a, be3863d8-f5c9-4a0d-a208-1d927cb8e7fd, fa83ee1f-2606-423d-a4f7-f292ee6c9be8, 8b32a2b1-5fff-4070-8722-cdf0713a8d54, 9a98d63b-52ad-4d87-921a-b22211a0e247, 1992ec00-4ffe-4840-b23a-383ed6cf94a3, ed2005ad-5619-41f6-a401-ea3b1f340483'}, {'id': '0051be14-9322-468c-aa0c-0ee46a41f3d8', 'description': 'Careers Wales Career Check table.', 'name': 'CAREER_CHECK_DATA_20200821', 'dataElementsCount': 6, 'dataElements': 'a3960751-86f1-4ecd-a51e-3c54fd67cab9, 8429f01c-a386-4da5-b76d-5df4291df114, 65d39079-b5c1-407f-bd40-a55c6bc1aa78, 26d1a80b-3f69-4257-9191-6f69748fd9dd, f25110ec-57c3-45b8-8ced-cbbba74a40bb, a417175d-0e9c-4fd3-bbb7-b625e5d790fc'}]}"
"{'title': 'Klang Asthma Cohort', 'abstract': 'We aim to assess the feasibility of delivering a supported self-management incorporating an adapted pictorial asthma action plan for adult patients with asthma in a public primary care clinic in the Klang District, Selangor State, Malaysia.', 'contactPoint': 'RESPIRE@ed.ac.uk', 'publisher': {'name': 'BREATHE', 'identifier': '607db9c2e1f9d3704d570ce6', 'memberOf': 'HUB'}, 'keywords': ['RESPIRE', 'BREATHE', 'Malaysia', 'patients', 'practice', 'asthma', 'Klang', 'heal', 'pictorial asthma action plan', 'asthma control', 'feasibility study']}",a2eddb27-c8bd-42ae-94f8-2a3026220da3,"{'spatial': ['https://www.geonames.org/1733045/malaysia.html'], 'physicalSampleAvailability': ['Not Available'], 'typicalAgeRange': '18-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'df63e893-f688-4bb4-956c-cc4354bb4001', '1.0.0': '089a0dd5-b2bd-4152-8033-d53552fe2c80', 'latest': '089a0dd5-b2bd-4152-8033-d53552fe2c80'}","{'description': 'We aim to assess the feasibility of delivering a supported self-management incorporating an adapted pictorial asthma action plan for adult patients with asthma in clinical practice in a public primary care clinic in the Klang District, Selangor State, Malaysia. Dataset contains follow-up responses at one-, three- and six-months post intervention. \n\nSupported self-management has been shown to reduce asthma-related morbidity and mortality in high-income countries, but poor health literacy (especially in low- and middle-income countries) is a potential barrier to its effectiveness. This study aims to assess the feasibility of delivering supported self-management incorporating an adapted pictorial asthma action plan for adult patients with asthma attending a public primary care clinic in Malaysia. This study will proceed in two phases: 1) adaptation of the pictorial asthma action plan (AAP); and 2) a feasibility study including  feasibility of assessing costs. Following the adaptation of the AAP, we assess the feasibility of using the AAP to support self-management in adults with asthma. In a pre-post study, 70 patients aged 18 years and above with physician-diagnosed asthma and currently prescribed inhaled corticosteroids will be recruited. Our proposed primary outcome is asthma control (Global Initiative for Asthma symptom control). A pre-piloted questionnaire will be used to collect baseline data on socio-demography, healthcare utilisation and expenditure, health literacy, clinical parameters (body mass index; peak expiratory flow rate).  Follow-up will be at 1, 3, and 6 months. \n\nThe protocol was approved by the Medical Research Ethics Committee, Ministry of Health Malaysia and registered with National Medical Research Registry (NMRR-18-2683-43494). The study trial registration number is ISRCTN87128530 (Pre-results).', 'associatedMedia': ['https://www.ed.ac.uk/usher/respire/chronic-respiratory-disorders/asthma-care']}",089a0dd5-b2bd-4152-8033-d53552fe2c80,https://web.www.healthdatagateway.org/dataset/089a0dd5-b2bd-4152-8033-d53552fe2c80,"{'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'format': ['Text']}, 'access': {'jurisdiction': ['MY'], 'accessService': 'Access is managed on a project-by-project basis. Contact the RESPIRE team:', 'accessRights': ['https://www.ed.ac.uk/usher/respire/about/projects'], 'dataController': 'Respire', 'dataProcessor': 'Respire'}}","{'temporal': {'endDate': '2021-03-31', 'timeLag': 'NOT APPLICABLE', 'accrualPeriodicity': 'STATIC', 'startDate': '2018-08-01'}}",2020-08-11T16:11:21Z,[{}],1.0.0,,2021-11-19T16:28:40Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Joint Registry - Primary Shoulder Replacement dataset', 'publisher': {'name': 'HQIP', 'identifier': '607db9c4e1f9d3704d570d23', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'research@njr.org.uk', 'keywords': ['Replacement', 'Shoulder', 'NJR', 'Joint', 'Registry', 'Primary'], 'abstract': 'The NJR datasets contain data on patients undergoing primary and revision total joint replacement.  Includes demography, surgical and anaesthetic technique, surgical prostheses used, revision surgery, mortality and PROMS (shoulder surgery). UK and beyond'}",0e903b9e-a329-478a-937c-480eecee4996,"{'typicalAgeRange': '0-150', 'spatial': ['https://www.geonames.org/3042225/isle-of-man.html', 'https://www.geonames.org/3042363/guernsey.html', 'https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html', 'https://www.geonames.org/2641364/northern-ireland.html'], 'followup': 'UNKNOWN', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Data is representative of the patient pathway. Readmissions for reasons other than revision surgery are not collected.'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'e5552f28-5c35-46e7-bf1e-cccf1d901192', '4.0.0': '08bffe91-46aa-4718-ab3a-9e9b60353ea2', '1.0.0': '676b4eaf-8667-4f83-b73c-308fb047d5cb', '2.0.0': 'fe4662ad-9080-4bd8-8de4-51195d275d5b', '3.0.0': 'eb50327d-03d1-4672-94b1-67116d95b2d0', 'latest': '08bffe91-46aa-4718-ab3a-9e9b60353ea2'}","{'description': ""The National Joint Registry for England, Wales, Northern Ireland and the Isle of Man is a database containing details of all primary and revision total hip, knee, shoulder, elbow and ankle replacement procedures carried out in NHS and independent sector hospitals in England, Wales, Northern Ireland and the Isle of Man.  Primary hip replacement has its own specific dataset for procedures.\nInitially this data is collected during a patient's time at hospital as part of bespoke data collection to support the NJR . This is submitted to NEC Software Solutions (contracted to the NJR) for processing and is used to monitor the quality and safety of patient care and outcomes. \nThis same data can also be processed and used for non-clinical purposes, such as research and planning health services. Because these uses are not to do with direct patient care, they are called 'secondary uses'. This is the NJR research ready data set.\nNJR data covers all procedures carried out in NHS and independent sector hospitals  in England, Wales (from 2003), Northern Ireland )from 2013), the Isle of Man (from 2015) and the States of Guernsey (from 2019).\nEach NJR record contains a wide range of information about an individual patient treated at an NHS or independent sector hospital, including:\n• clinical information about surgical indications and operations\n• patient information, such as age group and gender\n• component information, such as the brand and size of prosthesis used\n• outcomes, such as whether a revision procedure has been undertaken\nNJR apply a strict statistical disclosure control in accordance with the NHS Digital protocol, to all published NJR data. This suppresses small numbers to stop people identifying themselves and others, to ensure that patient confidentiality is maintained.\nWho NJR data is for\nNJR can provide data for the purpose of healthcare analysis to the NHS, government and others including:\n• national bodies and regulators, such as the Department of Health, NHS England, Public Health England, NHS Improvement and the CQC\n• local Clinical Commissioning Groups (CCGs)\n• provider organisations\n• government departments\n• researchers and commercial healthcare bodies\n• National Institute for Clinical Excellence (NICE)\n• patients, service users and carers\n• the media\nUses of the statistics\nThe statistics are known to be used for:\n• national policy making\n• benchmarking performance against other hospital providers or CCGs  \n• academic research\n• analysing service usage and planning change\n• providing advice to ministers and answering a wide range of parliamentary questions\n• national and local press articles\n• international comparison\nMore information can be found at http://www.njrcentre.org.uk/njrcentre/"", 'isPartOf': 'NJR', 'associatedMedia': ['https://www.njrcentre.org.uk/njrcentre/Research/Research-requests']}",08bffe91-46aa-4718-ab3a-9e9b60353ea2,https://web.www.healthdatagateway.org/dataset/08bffe91-46aa-4718-ab3a-9e9b60353ea2,"{'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL'], 'format': ['Tab delimited file made available via NJR Data Access Portal'], 'conformsTo': ['LOCAL']}, 'access': {'dataProcessor': 'NEC Software Solutions', 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England', 'accessRights': ['http://www.njrcentre.org.uk/njrcentre/Research/Research-requests', 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'accessRequestCost': ['http://www.njrcentre.org.uk/njrcentre/Portals/0/NJR%20cost%20recovery%20policy%20April%202019%20v1.0.pdf?ver=2019-04-04-105011-240'], 'jurisdiction': ['GB-EAW'], 'deliveryLeadTime': 'VARIABLE'}, 'usage': {'dataUseLimitation': ['NO RESTRICTION'], 'resourceCreator': [""the study title should be followed by the suffix: ‘An analysis from the National Joint Registry'. ""], 'investigations': ['https://www.njrcentre.org.uk/njrcentre/Research/Research-Portfolio'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS']}}","{'origin': {'purpose': ['AUDIT', 'DISEASE REGISTRY', 'OTHER'], 'collectionSituation': ['IN-PATIENTS', 'PRIVATE'], 'source': ['EPR', 'ELECTRONIC SURVEY', 'PAPER BASED']}, 'temporal': {'timeLag': 'VARIABLE', 'accrualPeriodicity': 'CONTINUOUS', 'startDate': '2012-04-01'}}",2020-01-13T14:55:21Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '45784', 'disambiguatingDescription': 'number of primary shoulder  replacements during 2019 in the dataset', 'observationDate': '01/09/2020', 'measuredProperty': 'Count'}]",4.0.0,"{'qualifiedRelation': [' HES - available subject to additional permissions', 'National PROMS - available subject to additional permissions', 'Civil Registration Data - available subject to additional permissions'], 'derivation': ['Not available']}",2022-01-05T14:45:34Z,"{'structuralMetadataCount': 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"{'title': 'Tayside Pathology', 'keywords': ['Pathology', 'Tayside', 'NHS', 'HIC', 'Scotland'], 'abstract': 'Tayside Pathology containing details from pathological samples and biopsy including diagnosis codes. This data originates from Ninewells Pathmanager.', 'publisher': {'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE', 'identifier': '607db9c4e1f9d3704d570d1f', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'hicsupport@dundee.ac.uk'}",419e5a82-2d82-48a7-a8f3-a83e64a54e92,"{'followup': 'UNKNOWN', 'spatial': ['https://www.geonames.org/2636157/tayside-region.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'ba971a73-9813-4aa9-a413-5f103ec1b6ca', '5.0.0': '08d1a4f5-92b0-4142-a38d-8bac734086e8', '1.0.0': '014bc853-1b27-4d97-9e5e-97fe28b84769', '2.0.0': '9ce35921-a1de-444b-a822-c0f6a8003797', '3.0.0': '5f6d2dd1-21e8-4d83-92cf-018f2ce3a622', '4.0.0': 'ccd9bea4-55d4-4666-90d9-bf407a24009b', 'latest': '08d1a4f5-92b0-4142-a38d-8bac734086e8'}","{'description': 'Tayside Pathology containing details from pathological samples and biopsy including diagnosis codes. This data originates from Ninewells Pathmanager.', 'isPartOf': 'University of Dundee Health Informatics Centre'}",08d1a4f5-92b0-4142-a38d-8bac734086e8,https://web.www.healthdatagateway.org/dataset/08d1a4f5-92b0-4142-a38d-8bac734086e8,"{'access': {'jurisdiction': ['GB-SCT'], 'dataController': 'NHS Tayside', 'accessService': 'HIC has implemented a remote-access Trusted Research Environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details are available via the following link:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/', 'deliveryLeadTime': '2-4 WEEKS', 'accessRights': ['https://www.dundee.ac.uk/hic/governanceapprovalsupport/'], 'accessRequestCost': ['Quotation available on request'], 'dataProcessor': 'University of Dundee, Health Informatics Centre'}, 'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL'], 'format': ['CSV', 'Database'], 'conformsTo': ['LOCAL']}, 'usage': {'resourceCreator': ['NHS Tayside'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['DISCLOSURE CONTROL']}}","{'temporal': {'startDate': '1992-01-02', 'distributionReleaseDate': '2021-09-03', 'accrualPeriodicity': 'IRREGULAR', 'timeLag': 'NOT APPLICABLE'}, 'origin': {'collectionSituation': ['SERVICES'], 'purpose': ['CARE'], 'source': ['LIMS']}}",2020-06-03T12:56:59Z,"[{'observedNode': 'PERSONS', 'measuredValue': '330000', 'disambiguatingDescription': '330,000 patients present in dataset', 'observationDate': '03/09/2021', 'measuredProperty': 'COUNT'}, {'observedNode': 'EVENTS', 'measuredValue': '846000', 'disambiguatingDescription': '846,000 records in dataset', 'observationDate': '11/11/2021', 'measuredProperty': 'Count'}]",5.0.0,,2021-11-19T15:59:10Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 11, 'structuralMetadata.columnName': 11, 'structuralMetadata.columnDescription': 11, 'structuralMetadata.dataType': 11, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '05ae476f-b5e6-4f3e-a291-4b2b4273928d', 'description': 'Pathology Data from Ninewells Pathmanager.  Data covers legacy 1992 until present.    Routine updates data received qtrly. However, these are 12months behind real-time. The delay is because further tests and analysis can be requested on a sample, these are generally made withn 12mths of the original sample date. The 12mnths delay reduces the risk that a sample is used in a project, that is subsequently changed/updated.', 'name': 'Pathology (Tayside)', 'dataElementsCount': 11, 'dataElements': '9fee23d2-5912-4415-8d1f-0c8c894e4036, 54878737-39a8-402d-91c5-d903e42aed8c, 655688c7-65e4-4e3c-9d80-33c386735f5e, 954e5031-3ee9-4bf4-94a0-9ee71a137177, df85b574-882c-40ad-b166-013db35c3977, f7a30429-0aca-41f9-89e6-42f4214e1483, 66275606-0d0a-4fd2-a9b6-3fdb32317cc9, 9c982fee-30cc-401a-971d-f4060c2b9d2c, ad01361a-dd1a-4bd7-9cc7-fb892d8d865a, 39219913-eb79-4c66-b64b-11f417ca4e4d, 2b73a269-e7da-4b4e-a586-f7f2577cb53b'}]}"
"{'title': 'NHS Tayside and Fife Accident & Emergency Dataset (ISD/National)', 'abstract': 'Accident and Emergency Statistics. There are two types: episode and aggregate level data. 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The A&E datamart was established in June 2007 to monitor the compliance of each NHS Board against the 4 hour wait standard. In July 2010 the A&E data mart was extended further to collect items such as diagnosis, several injury fields and an alcohol involved flag, which will be used to identify whether the patient’s alcohol consumption was a factor in the attendance. The collection of the new fields has been driven by a variety of SG policy decisions and interest from a number of organisations. Although there is now the facility to submit these additional fields, they are still under development and ISD are working with the NHS Boards to support data collection and quality. There are two types of data submitted to the A&E datamart: episode and aggregate level data. All hospitals with Emergency Departments submit episode level data containing a detailed record for each patient attendance. Some smaller sites with minor injury units or community hospitals only submit aggregate files containing monthly summary attendance and compliance figures only. This is because they do not have the information systems and support to enable collection of detailed patient based information. Sites that submit episode level data account for around 94% of all attendances at A&E.', 'isPartOf': 'University of Dundee Health Informatics Centre'}",0910383a-44d6-4652-98da-550df7204416,https://web.www.healthdatagateway.org/dataset/0910383a-44d6-4652-98da-550df7204416,"{'access': {'accessService': 'HIC has implemented a remote-access ""Safe Haven"" environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details are available via the following link:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/', 'dataController': 'University of Dundee', 'jurisdiction': ['GB-SCT'], 'deliveryLeadTime': 'OTHER', 'accessRights': ['https://www.dundee.ac.uk/hic/governanceapprovalsupport/']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'language': ['en'], 'format': ['Database']}, 'usage': {'dataUseRequirements': ['DISCLOSURE CONTROL'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}}","{'temporal': {'accrualPeriodicity': 'CONTINUOUS', 'startDate': '2007-06-01', 'timeLag': '2-6 MONTHS', 'distributionReleaseDate': '2021-09-24'}, 'origin': {'source': ['ELECTRONIC SURVEY'], 'purpose': ['CARE'], 'collectionSituation': ['PRIMARY CARE']}}",2020-04-27T09:37:14Z,"[{'observedNode': 'PERSONS', 'measuredValue': '2747000', 'disambiguatingDescription': '2747000 records in the dataset', 'observationDate': '24/09/2021', 'measuredProperty': 'COUNT'}]",3.0.0,,2021-09-27T14:33:34Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 77, 'structuralMetadata.columnName': 77, 'structuralMetadata.columnDescription': 77, 'structuralMetadata.dataType': 77, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'b9517449-d273-46d5-817c-755b81f583ea', 'description': 'Accident and Emergency Statistics. 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Some smaller sites with minor injury units or community hospitals only submit aggregate files containing monthly summary attendance and compliance figures only. This is because they do not have the information systems and support to enable collection of detailed patient based information. 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"{'title': 'The acute presentation of pregnant women to non-maternity Emergency departments', 'publisher': {'name': 'PIONEER', 'contactPoint': 'PIONEER@UHB.NHS.UK', 'memberOf': 'HUB'}, 'contactPoint': 'PIONEER@UHB.NHS.UK', 'keywords': ['Pregnancy', 'Maternity', 'Childbirth', ""Women's health"", 'obstetrics', 'Gynaecology', 'gestation', 'foetus', 'post-partum', 'miscarriage', 'bleeding', 'thrombus', 'pulmonary embolus', 'abdominal pain', 'nausea', 'hyperemesis gravidarum', 'chest pain', 'breathlessness', 'asthma', 'gestation', 'foetus', 'ethnicity', 'multi-morbidity', 'age', 'social deprivation', 'observations', 'heart rate', 'respiratory rate', 'blood pressure'], 'abstract': 'Patients admitted with a pregnancy related event.  Granular care pathways.  Multi-morbidity, investigations, interventions and treatments. Serial physiology, blood biomarkers, physiotherapy, outcome. Deeply phenotyped.'}",86632207-1e57-4272-b178-ea069a13cae1,"{'followup': 'OTHER', 'pathway': 'The West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic, socio-economic mix. There is a higher than average percentage of minority ethnic groups with Birmingham having a population which is >40% non-white. Birmingham is one of the youngest cities in Europe and has a birth rate that is higher than average (The General Fertility Rate was 69.7 births per thousand population and the Total Fertility Rate was 2.04 children per woman in 2016, both higher than the average for the UK).  Unfortunately Birmingham also has a higher than average infant mortality rate and a higher than average incidence of maternal complications.  There is social deprivation and Birmingham’s population suffers with particularly high rates of physical inactivity, obesity, smoking & diabetes.  There are also high levels of rare diseases, especially immunometabolic conditions.   The patients included in this dataset are representative of this diverse population and also include a wide age-range.    University Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & 100 ITU beds. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.   This dataset includes the patient journey from admission to hospital to outcome for pregnant and post-partum patients admitted to a general hospital. The data includes granular demography and co-morbidity, presenting symptoms and diagnoses, serial physiology and blood biomarkers, all investigations, all prescribed and administered treatments and outcomes.   It can be supplemented with preceding and following health care contacts, to understand the risk for the acute admission during pregnancy and the subsequent impact on health after discharge. Although primarily secondary care, this dataset can be supplemented with ambulance and primary care data on request.  PIONEER can also offer synthetic data, images and access to a secure Trusted Research Environment for analytics and AI.   PIONEER can assist with analytics, model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '10-55', 'spatial': 'West Midlands Region, UK'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '0942304f-8b91-4258-af9c-3a1801c7e79f'},"{'description': 'Each year, there are audits to assess maternal & foetal outcomes across the UK. In 2016-18, 217 women died during or up to six weeks after pregnancy, from causes associated with their pregnancy, among 2,235,159 women giving birth in the UK. 9.7 women per 100k died during pregnancy or up to six weeks after childbirth or the end of pregnancy. There was an increase in the overall maternal death rate in the UK between 2013-15 & 2016-18. Assessors judged that 29% of women who died had good care. However, improvements in care which may have made a difference to the outcome were identified for 51% of women who died. Birmingham has a higher than average maternal & foetal death rate. This dataset includes detailed information about the reasons pregnant women seek acute care, & their care pathways & outcomes.\nPIONEER geography: The West Midlands (WM) has a population of 5.9m & includes a diverse ethnic, socio-economic mix. There is a higher than average % of minority ethnic groups. WM has the youngest population in the UK with a higher than average birth rate. There are particularly high rates of physical inactivity, obesity, smoking & diabetes. 51.2% of babies born in Birmingham have at least one parent born outside of the UK, this compares with 34.7% for England. Each day >100k people are treated in hospital, see their GP or are cared for by the NHS.\nEHR: University Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & 100 ITU beds. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.\nScope: Pregnant or post-partum women from 2015 onwards who attended A&E in Queen Elizabeth hospital. Longitudinal & individually linked, so that the preceding & subsequent health journey can be mapped & healthcare utilisation prior to & after admission understood. The dataset includes highly granular patient demographics (including gestation & postpartum period), co-morbidities taken from ICD-10 & SNOMED-CT codes. Serial, structured data pertaining to process of care (admissions, wards, practitioner changes & discharge outcomes), presenting complaints, physiology readings (temperature, blood pressure, NEWS2, SEWS, AVPU), referrals, all prescribed & administered treatments & all outcomes.\nAvailable supplementary data: More extensive data including granular serial physiology, bloods, conditions, interventions, treatments. Ambulance, 111, 999 data, synthetic data.\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.', 'isPartOf': 'NOT APPLICABLE'}",0942304f-8b91-4258-af9c-3a1801c7e79f,https://web.www.healthdatagateway.org/dataset/0942304f-8b91-4258-af9c-3a1801c7e79f,"{'access': {'deliveryLeadTime': '1-2 MONTHS', 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'dataProcessor': 'NOT APPLICABLE', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'accessRequestCost': 'www.pioneerdatahub.co.uk/data/data-services-costs/', 'jurisdiction': 'GB-GBN', 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['OPCS4', 'SNOMED CT', 'ICD10'], 'language': 'en', 'format': ['SQL'], 'conformsTo': 'LOCAL'}, 'usage': {'resourceCreator': 'This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)', 'dataUseRequirements': 'PROJECT SPECIFIC RESTRICTIONS', 'dataUseLimitation': 'GENERAL RESEARCH USE'}}","{'temporal': {'accrualPeriodicity': 'QUARTERLY', 'distributionReleaseDate': '2020-02-17', 'timeLag': 'LESS 1 WEEK', 'endDate': '2020-12-31', 'startDate': 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"{'title': 'National Cardiac Audit Programme - National Heart Failure Audit', 'abstract': 'Continuous record-level data on unscheduled admissions in England & Wales with heart failure the primary factor at death or discharge. Aged 18 years or over. Includes the assessment, diagnosis, treatments, mortality, and follow up.', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d23', 'name': 'HQIP'}, 'contactPoint': 'DataSharing@hqip.org.uk', 'keywords': ['Cardiac', 'Hospital', 'National', 'Heart', 'NCAP', 'Failure', 'Audit']}",834618f3-0c6d-4ed2-abae-39208c6b3080,"{'followup': 'UNKNOWN', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html'], 'typicalAgeRange': '18-150', 'pathway': 'The NICOR datasets focus primarily on secondary care and therefore do not cover the whole patient pathway. The audit data may be linked with other primary cars datasets e.g., General Practice Extraction Services (GPES) to give a better understanding of care pathways and how disease and treatments are managed over time.'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '14f10505-ff29-403d-a132-8234ffe88b1c', '4.0.0': '0969dc51-1ab9-469a-8b35-3ec63f30fa89', '2.0.0': 'efbb3bf4-834b-417e-b002-03fc41715e58', '3.0.0': 'fd7030c8-d5a6-4935-a7fa-dd6037dc29cd', '1.0.0': 'fb0d2918-27a0-4dfa-b2c9-d0421e405538', 'latest': '0969dc51-1ab9-469a-8b35-3ec63f30fa89'}","{'description': 'The dataset contains continuously ascertained record-level information on patients with an unscheduled admission to hospital in England and Wales where heart failure is the primary factor in the record of their death or discharge. all Cases are aged 18 years or over and elective admissions are excluded. The dataset includes the assessment, diagnosis and treatments received, mortality, discharge and follow up.', 'associatedMedia': ['https://www.hqip.org.uk/a-z-of-nca/national-cardiac-audit-programme-ncap/#.YKPMaqhKiUk'], 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",0969dc51-1ab9-469a-8b35-3ec63f30fa89,https://web.www.healthdatagateway.org/dataset/0969dc51-1ab9-469a-8b35-3ec63f30fa89,"{'access': {'accessRequestCost': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data\nhttps://www.nicor.org.uk/for-researchers/data-sharing-application-process/'], 'deliveryLeadTime': 'VARIABLE', 'accessRights': ['https://www.nicor.org.uk/for-researchers/', 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England', 'dataProcessor': 'Barts Health NHS Trust, host of the National Institute for Cardiovascular Outcomes Research (NICOR)', 'jurisdiction': ['GB-EAW']}, 'usage': {'dataUseLimitation': ['NO RESTRICTION'], 'resourceCreator': ['Data has been provided by the Healthcare Quality Improvement Partnership from the National Cardiac Audit Programme'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE']}, 'formatAndStandards': {'language': ['en'], 'format': ['Excel'], 'vocabularyEncodingScheme': ['OTHER'], 'conformsTo': ['OTHER']}}","{'temporal': {'timeLag': 'VARIABLE', 'startDate': '2013-01-01', 'accrualPeriodicity': 'DAILY'}, 'origin': {'collectionSituation': ['IN-PATIENTS'], 'source': ['ELECTRONIC SURVEY', 'OTHER'], 'purpose': ['AUDIT']}}",2020-01-13T14:54:28Z,"[{'observedNode': 'PERSONS', 'measuredValue': 74696, 'disambiguatingDescription': 'number of patient admissions in the audit dataset submitted in 2018/19', 'observationDate': '01/01/2020', 'measuredProperty': 'Count'}]",4.0.0,"{'derivation': ['Not available'], 'qualifiedRelation': ['Data Linked with that from other custodians may be available, but the release of linked data will be subject to the separate permission of all relevant data controllers.']}",2021-11-29T21:30:12Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'ICON9 Trial', 'publisher': {'name': 'TISSUE DIRECTORY', 'contactPoint': 'ctc.icon9@ucl.ac.uk', 'memberOf': 'ALLIANCE'}, 'keywords': ['ICON9', 'Olaparib', 'UKCRC Tissue Directory', 'Cediranib', 'Malignant tumour of ovary', 'Cancer', 'Ovarian'], 'abstract': 'Collection of samples and data across the following diseases: Malignant tumour of ovary', 'contactPoint': 'ctc.icon9@ucl.ac.uk', 'doiName': 'Not Available'}",1fdf266c-d5d8-418d-a423-81265da540a2,"{'spatial': 'England', 'typicalAgeRange': '40-150', 'physicalSampleAvailability': ['SERUM', 'TISSUE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '64d14302-b77b-4239-a8de-714fc495bf09', '3.0.0': '097cc6bd-ce98-47ec-a73d-5d2c250f2697', '1.0.0': '55f128bf-3168-4797-a469-6226107098d0', '2.0.0': 'a2d94442-91c1-4626-b28f-700eb436a4c1', 'latest': '097cc6bd-ce98-47ec-a73d-5d2c250f2697'}","{'description': 'An international phase III randomised study to evaluate the efficacy of maintenance cediranib and olaparib combination therapy or olaparib alone in patients with relapsed platinum-sensitive ovarian cancer following a response to platinum-based chemotherapy', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",097cc6bd-ce98-47ec-a73d-5d2c250f2697,https://web.www.healthdatagateway.org/dataset/097cc6bd-ce98-47ec-a73d-5d2c250f2697,"{'access': {'dataController': 'University College London', 'dataProcessor': 'Not Applicable', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'jurisdiction': 'GB-ENG', 'accessRequestCost': 'Not specified', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED'}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}, 'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2018-01-01'}}",2020-01-13T17:05:21Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T15:59:48Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Joint Registry - Revision Hip Replacement dataset', 'abstract': 'The NJR datasets collect continuous, prospective data on patients undergoing primary and revision total joint replacement (hip, knee, shoulder, elbow and ankle). The dataset covers the period 2003 to present and covers the UK and beyond', 'contactPoint': 'research@njr.org.uk', 'publisher': {'name': 'HQIP', 'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d23'}, 'keywords': ['Joint', 'Revised', 'Replacement', 'NJR', 'Hip', 'Registry']}",4b8286e2-c4e4-4db4-8fd9-5f1c8b4e56de,"{'pathway': 'Data is representative of the patient pathway. Readmissions for reasons other than revision surgery are not collected.', 'followup': 'UNKNOWN', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/3042225/isle-of-man.html', 'https://www.geonames.org/3042363/guernsey.html', 'https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html', 'https://www.geonames.org/2641364/northern-ireland.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '6d63f065-8d94-46a1-b909-f466c1a3855f', '4.0.0': '09d1cc0f-4b4d-4525-853a-012ece4a1ab2', '1.0.0': '50f8ffd4-205d-4067-a0f3-7f9d31c92d4f', '2.0.0': '12c5b83c-6e4a-442e-b6c2-2f6b7165fe6b', '3.0.0': '21d2acc3-f943-4469-98a4-1d9a5045bed6', 'latest': '09d1cc0f-4b4d-4525-853a-012ece4a1ab2'}","{'description': ""The National Joint Registry for England, Wales, Northern Ireland and the Isle of Man is a database containing details of all primary and revision total hip, knee, shoulder, elbow and ankle replacement procedures carried out in NHS and independent sector hospitals in England, Wales, Northern Ireland and the Isle of Man.  Primary hip replacement has its own specific dataset for procedures.\nInitially this data is collected during a patient's time at hospital as part of bespoke data collection to support the NJR . This is submitted to NEC Software Solutions (contracted to the NJR) for processing and is used to monitor the quality and safety of patient care and outcomes. \nThis same data can also be processed and used for non-clinical purposes, such as research and planning health services. Because these uses are not to do with direct patient care, they are called 'secondary uses'. This is the NJR research ready data set.\nNJR data covers all procedures carried out in NHS and independent sector hospitals  in England, Wales (from 2003), Northern Ireland )from 2013), the Isle of Man (from 2015) and the States of Guernsey (from 2019).\nEach NJR record contains a wide range of information about an individual patient treated at an NHS or independent sector hospital, including:\n• clinical information about surgical indications and operations\n• patient information, such as age group and gender\n• component information, such as the brand and size of prosthesis used\n• outcomes, such as whether a revision procedure has been undertaken\nNJR apply a strict statistical disclosure control in accordance with the NHS Digital protocol, to all published NJR data. This suppresses small numbers to stop people identifying themselves and others, to ensure that patient confidentiality is maintained.\nWho NJR data is for\nNJR can provide data for the purpose of healthcare analysis to the NHS, government and others including:\n• national bodies and regulators, such as the Department of Health, NHS England, Public Health England, NHS Improvement and the CQC\n• local Clinical Commissioning Groups (CCGs)\n• provider organisations\n• government departments\n• researchers and commercial healthcare bodies\n• National Institute for Clinical Excellence (NICE)\n• patients, service users and carers\n• the media\nUses of the statistics\nThe statistics are known to be used for:\n• national policy making\n• benchmarking performance against other hospital providers or CCGs  \n• academic research\n• analysing service usage and planning change\n• providing advice to ministers and answering a wide range of parliamentary questions\n• national and local press articles\n• international comparison\nMore information can be found at http://www.njrcentre.org.uk/njrcentre/"", 'associatedMedia': ['https://www.njrcentre.org.uk/njrcentre/Research/Research-requests'], 'isPartOf': 'NJR'}",09d1cc0f-4b4d-4525-853a-012ece4a1ab2,https://web.www.healthdatagateway.org/dataset/09d1cc0f-4b4d-4525-853a-012ece4a1ab2,"{'usage': {'dataUseLimitation': ['NO RESTRICTION'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'resourceCreator': [""the study title should be followed by the suffix: ‘An analysis from the National Joint Registry'. 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available subject to additional permissions', 'National PROMS - available subject to additional permissions', 'Civil Registration Data - available subject to additional permissions']}",2022-01-07T11:20:09Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 81, 'structuralMetadata.columnName': 81, 'structuralMetadata.columnDescription': 81, 'structuralMetadata.dataType': 81, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '821fde71-be25-402a-b431-58da76c2cbea', 'description': 'Data fields for NJR revision hip replacement dataset', 'name': 'National Joint Registry Revision Hip Replacement Dataset', 'dataElementsCount': 81, 'dataElements': 'bb0e1e3f-78af-4fbd-82b1-895fb0cb868b, 20074af6-3e43-4e2c-a02a-4c43940104f4, 2f21b7ae-05a6-4e63-a39c-3ccdfafafa07, fec0ad02-4390-4f53-aab6-da50678bbc7c, 4b931f19-391e-4e6d-a5e3-500fd31d0164, c034f9c1-b861-44c7-923f-3667d08b3803, 0532bd38-627e-419d-a493-b19897a8a943, d5230960-5ade-4f2e-9856-a6bed5a819a4, 2f2982bb-5cc9-4acb-9c30-4a2c9df7d830, 17e9a61e-107c-486b-b432-2ce5e95289b3, 155fc348-c76d-4c74-a4be-e97ab62e6d2f, b09ef543-9f11-49cb-8073-861ad655c385, d0c5bc49-d402-41fe-a5e3-b0f0558f9ceb, 3a3d1fd0-2dcc-4b46-8a35-aef636c1dfed, a43edc54-66dc-4487-a90c-f472bad3ec92, 0ef0c541-33e4-44f0-a035-7ccba3a4c8a3, 0903d477-0b2b-4453-81c3-2e184d051e2a, 21d62e1f-ba35-4afa-9ac2-a10a5673e48a, 5f646f35-0bb6-40ef-be67-ee80f7de3388, da3a0fd7-33c4-4eef-8433-2269eea17045, 2cfe399d-29ed-494f-9b77-774f24af0357, 82ab9dca-fa29-47a0-801d-eea37c306eaa, 62e8cb04-b392-4f31-9d4b-94dd8fae69ed, 4e7baaea-6bf3-4bde-b9e2-823221f9663a, d8b8b304-0120-4293-80a9-e2e0c5cc6b55, f70a76ea-1cd1-4160-b0ae-c09f5c1d0e9b, 47108619-5ce3-4993-aa41-3894ab12916b, 89f4745f-3945-48bc-94de-94d033ac1ea7, eeaed275-5b20-4f86-a8c9-eb94a36267b9, 2f8e04e2-60cb-4bde-8898-b746efc127f4, 717b7009-c739-48cb-a2bc-abfae48c37ae, 3d915440-5233-4422-a1ec-ccd49798cead, aa802bb5-88e6-4d26-bd79-3e2a66100276, eabd3415-4536-40fd-b87a-89afb65e6db1, 2f6699a2-7704-4366-ae37-bb97ea8cf048, ce137f8f-e99c-4b94-b108-08d588e8cc82, 8e49537f-baee-4ad0-8319-729a1fff4c37, fcb59c37-c863-456e-853a-a52ada4735ac, 1cf89c04-5214-452c-8056-483be7850eac, c8a83f8f-b4c6-4bff-b4da-02ad91220f9c, 55275fc0-6705-4848-a027-61a89b2ae511, 129f533e-cba0-4b97-bdd0-d4acc89685fa, f0bb3fb4-b888-4dee-9004-29e68dd4102b, 5c2f4c49-c5af-4632-965d-39dcf3602766, 0e3af8b3-df73-4ec3-9a48-92926841142b, a614c2f2-1b27-4778-9e00-24fa65f16b38, 30aa9aff-157f-416b-bc30-abd351b59441, 844fd8a8-796b-4924-91a8-d4a00cf063cb, 506b1b90-2254-4886-bb04-4e24bf77efc7, f4d88c03-d638-4d07-938e-4dea909f3680, a46aecb6-3e69-4ddc-8426-57723c97baa0, bee33117-3375-4eba-8f60-ac54cf87fd59, e0b4c6a1-13c0-4d1a-bbea-1d7c3feb7a54, e8193d9a-440f-4709-b065-9b2912ac00a5, 9ac674f7-cdf1-4ebc-b45d-1ca28e54c5f9, 20e7f956-1055-4fa8-b340-049db8aaea12, 82979353-d51d-40fe-8989-c21e0689273c, ce55122a-a0f0-4e7a-9851-dafe6806bd55, 3ff522d3-c62c-4521-872b-04442f0fb7e9, ce604f83-be20-47c3-9a37-713bab759641, f3ffe2f3-4953-48cf-aec2-8f6cca240db4, 199b88dc-ab91-41ae-89ed-33bd92df1422, a30c40fa-e4c2-4355-be49-cd777c4278c2, b481d129-109f-48e3-8c80-c2d0cb319b65, e749a831-b7e6-40aa-9b81-3ccd5c711d98, 6402bd81-cd8c-40ae-9880-6d77ec49defb, 50830d18-94b0-47c4-87a3-e9a1b65eeb34, 7af9237c-5bb5-499c-b301-c415df06bc9a, a2baabd8-0718-4554-ac2a-3d127c5909f7, 1551d639-0c92-44bb-ab54-dd015fdde588, 766a25de-ad9f-4cda-838a-56ed12b24b6a, 7f80d349-1c8d-4741-9dac-73c9ea98ba62, 8b1cda91-5ece-4934-b26b-39ff059180cd, fdcc3374-a08e-4e1a-8223-cf5e2a126ac4, 2560ef42-5677-49e5-aa83-0698d6cd8bc1, d5dfc723-fdc4-476c-a22f-7be275ac1133, ac26c6df-17ad-44a2-b126-acf4d8e1faa3, 4b3b8e8d-37da-400d-96ee-57234065279f, ca1704ff-6033-444d-b7a0-174a6fcacb09, 6f80190d-8698-433a-aebd-ab8b5a9d4e14, 3ea90ed6-0be0-4542-8c57-067cda0871e6'}]}"
"{'title': 'Development of ELISA and Rapid Testing Kits for COVID-19', 'publisher': {'name': 'BREATHE', 'identifier': '607db9c2e1f9d3704d570ce6', 'memberOf': 'HUB'}, 'abstract': 'This project aims to develop ELISA based detection kits for the detection of viral antigen of COVID-19, and separately to detect the immune response to COVID-19 infection. To be marketed in Pakistan.', 'keywords': ['ELISA', 'COVID-19', 'Cost Effective', 'Diagnostics', 'Rapid Testing', 'SARS-CoV2'], 'contactPoint': 'RESPIRE@ed.ac.uk'}",6b2aca2c-b03a-44ba-80a1-883b744421b6,"{'spatial': ['https://www.geonames.org/1168579/islamic-republic-of-pakistan.html'], 'typicalAgeRange': '0-150', 'pathway': 'Human tissue samples collected from patients who attend routine diagnostic procedures at commercial laboratories and hospitals, especially for COVID related tests'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '09f04291-670d-4db0-a3e4-7e0d84555231'},"{'description': 'The electronic data will consist of documenting the different diagnostic reagents imported, with their technical details, specifications and expiry dates. A record will be kept of the use of these reagents, and their performance characteristics in the research laboratory. The second main data set will involve the development of the diagnostic kits, and documentation of all physical, chemical and immunological parameters around each diagnostic procedure, and the outcomes, and whether success or failure. The third set of data will be generated when the developed diagnostic kits are tested against the known samples received from the commercial (Metropole) laboratories and the results compared.', 'isPartOf': 'BREATHE'}",09f04291-670d-4db0-a3e4-7e0d84555231,https://web.www.healthdatagateway.org/dataset/09f04291-670d-4db0-a3e4-7e0d84555231,"{'access': {'jurisdiction': ['PK'], 'dataProcessor': 'RESPIRE', 'accessRights': ['https://www.ed.ac.uk/usher/respire/about/projects'], 'dataController': 'RESPIRE', 'accessService': 'Access is managed on a project-by-project basis. Contact the RESPIRE Collaboration.'}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'conformsTo': ['LOCAL'], 'format': ['CSV']}, 'usage': {'dataUseLimitation': ['NO RESTRICTION'], 'resourceCreator': ['RESPIRE Collaboration']}}","{'origin': {'source': ['OTHER'], 'collectionSituation': ['OTHER']}, 'temporal': {'startDate': '2021-08-15', 'endDate': '2021-11-30', 'accrualPeriodicity': 'STATIC', 'timeLag': 'NOT APPLICABLE'}}",2021-10-15T13:04:50Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '1', 'disambiguatingDescription': 'Observations Not Applicable at this time (Oct 2021) and default values used where fields are mandatory', 'observationDate': '30/11/2021', 'measuredProperty': 'Count'}]",1.0.0,,2021-10-15T13:04:50Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Lothian Birth Cohort 1921 (LBC1921)', 'abstract': 'The Lothian Birth Cohort 1921 (LBC1921) study is a longitudinal study of cognitive, brain and general ageing. It aims to understand how our brain and thinking skills change throughout life, and why some brains age better than others.', 'publisher': {'identifier': '61800787f4dde0c2a01e1ea2', 'memberOf': 'HUBS', 'name': 'DATAMIND'}, 'keywords': ['LBC1921', 'Mental Health', 'Physical Measures', 'Cognitive', 'Ageing', 'Longitudinal', 'Cohort', 'COVID-19', 'DATAMIND']}",df288318-6663-417d-9870-666e75920bed,"{'followup': '> 10 YEARS', 'spatial': ['http://www.geonames.org/2638360/scotland.html'], 'typicalAgeRange': '79-92'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '0a137eec-4288-400b-8c47-0275319c9f09'},"{'description': 'The original Lothian Birth Cohorts of 1921 (LBC1921) and 1936 (LBC1936) were designed as follow-up studies to the Scottish Mental Surveys of 1932 (SMS1932) and 1947 (SMS1947), respectively. The SMS1932 took place simultaneously across schools in Scotland on the 1st of June, 1932, and used the Moray House Test (No. 12; MHT) of general intelligence. Almost every child attending school and born in 1921 (N = 87,498) was tested. The same MHT was administered to almost every child born in 1936 and attending school on the 4th of June, 1947 for the SMS1947 (N = 70,805). Decades later, participants of both Surveys, mostly living in Edinburgh and the surrounding area (the Lothians) in older age, were invited to participate in the Lothian Birth Cohort (LBC) studies. Between 1999 and 2001, 550 of the SMS1932 were recruited to Wave 1 of the LBC1921 study, at a mean age of 79 years. Between 2004 and 2007, 1,091 members of SMS1947 were recruited to Wave 1 of the LBC1936 study, at a mean age of 70 years. Both cohorts re-sat the MHT at initial follow-up. In addition, a large amount of other cognitive, psychosocial, lifestyle, medical, biomarker, genetic, brain imaging and other data were collected. \n\nThe LBC studies set out principally to examine the nature and determinants of non-pathological cognitive ageing from childhood to older age, and within in older age. However, in recent years the scope of the studies has extended to identifying more risk and protective factors that have the potential to be interventions to reduce the risk of cognitive loss in later life. At each visit, participants submit a wide range of data, leading to a database of thousands of data points for every single participant, including cognitive, lifestyle, social and psychological, genetic and epigenetic, health and physical fitness, biological, and brain and vascular imaging data.'}",0a137eec-4288-400b-8c47-0275319c9f09,https://web.www.healthdatagateway.org/dataset/0a137eec-4288-400b-8c47-0275319c9f09,"{'access': {'jurisdiction': ['GB-SCT'], 'dataProcessor': 'University of Edinburgh', 'dataController': 'University of Edinburgh', 'accessRights': ['https://www.ed.ac.uk/lothian-birth-cohorts/data-access-collaboration']}}","{'temporal': {'startDate': '1932-01-01', 'accrualPeriodicity': 'OTHER', 'timeLag': 'VARIABLE'}, 'origin': {'purpose': ['STUDY']}}",2021-12-02T09:48:10Z,"[{'observedNode': 'PERSONS', 'measuredValue': 550, 'disambiguatingDescription': 'Number of participants at recruitment (LBC1921 Wave 1)', 'observationDate': '01/01/1999', 'measuredProperty': 'Count'}]",1.0.0,,2021-12-02T09:48:10Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Pathology Data from WRRS', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'publisher': {'name': 'SAIL', 'memberOf': 'ALLIANCE', 'contactPoint': 'SAILDatabank@swansea.ac.uk'}, 'keywords': ['Pathology', 'SAIL', 'NCS', 'National Core Study', 'COVID-19'], 'doiName': 'In Progress', 'abstract': 'Pathology Test Results and all Radiology reports for Wales. Data coverage differs by geography:\n2012 for Swansea (ABMU)\n\n2017 for Newport (AB)\n\n2012 for North Wales (BC)\n\n2007 for Cwm Taf\n\n2015/16 for Cardiff (CV)\n\n2014 for West Wales (HD)'}",48ef8f54-9606-4e6f-9256-3cc07ffd10b8,"{'pathway': 'All pathways at primary and secondary tiers of care', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'OTHER', 'spatial': 'Wales'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '2e34afbe-1e22-40bb-b236-c8696d370787', '5.0.0': '0abfceb7-5a56-4559-b0d4-88326e0331a3', '1.0.0': '088ef436-21a0-4993-be0d-72cfd5a88901', '4.0.0': '26da4493-a78b-4090-ba18-e6c600d2c375', '3.0.0': '78fee45f-9f03-46b1-be8e-650c54e2c3fa', '2.0.0': '16dfba9a-04b9-4b3e-9c86-73d6bf2db4c3', 'latest': '0abfceb7-5a56-4559-b0d4-88326e0331a3'}","{'description': 'Pathology Test Results and all Radiology reports for Wales. Data coverage differs by geography:\n2012 for Swansea (ABMU)\n\n2017 for Newport (AB)\n\n2012 for North Wales (BC)\n\n2007 for Cwm Taf\n\n2015/16 for Cardiff (CV)\n\n2014 for West Wales (HD)', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/']}",0abfceb7-5a56-4559-b0d4-88326e0331a3,https://web.www.healthdatagateway.org/dataset/0abfceb7-5a56-4559-b0d4-88326e0331a3,"{'usage': {'isReferencedBy': ['Al Sallakh, (2018); Creating and utilising the Wales Asthma Observatory to support health policy, health service planning and clinical research. Doctoral thesis, Swansea University. http://cronfa.swan.ac.uk/Record/cronfa48569'], 'resourceCreator': 'Welsh Results Reports Service (WRRS)', 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'dataUseLimitation': 'GENERAL RESEARCH USE', 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION']}, 'access': {'jurisdiction': 'GB-WLS', 'accessRequestCost': 'Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.', 'deliveryLeadTime': '2-6 MONTHS', 'accessRights': ['https://saildatabank.com/application-process/'], 'dataProcessor': 'SAIL Databank', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'dataController': 'NHS Wales’ Informatics Service (NWIS)'}, 'formatAndStandards': {'conformsTo': 'LOCAL', 'format': ['SQL database table'], 'language': 'en', 'vocabularyEncodingScheme': 'ICD10'}}","{'temporal': {'distributionReleaseDate': '2019-03-11', 'endDate': '2018-11-30', 'startDate': '2012-04-01', 'accrualPeriodicity': 'QUARTERLY', 'timeLag': '2-6 MONTHS'}, 'origin': {'purpose': 'CARE', 'collectionSituation': 'OTHER', 'source': 'EPR'}}",2020-01-13T14:47:31Z,,5.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Yes. To any SAIL dataset & reference data.'], 'tools': ['https://conceptlibrary.saildatabank.com/']}",2021-04-09T18:29:18Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 29, 'structuralMetadata.columnName': 29, 'structuralMetadata.columnDescription': 29, 'structuralMetadata.dataType': 29, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'a68973b2-a896-4196-8af7-9ee4c0f284de', 'description': 'The WRRS (Welsh Results Reports Service) contains   pathology results. Radiology and diagnostic tests can also be  contained in this dataset.', 'name': 'WRRS_PATH', 'dataElementsCount': 29, 'dataElements': '2fff855f-366b-482f-8ab2-15f0fdbb1112, 93545209-28d4-4c21-a93a-bbd1d1e13f3b, eadd0261-4edf-43e2-8b56-2ac8ab535f6b, 03f1b058-8a69-4981-a7e2-d0f73d08e998, 4fd37f13-e0d2-4152-882a-dd520719855c, 39e54cce-edc0-4eae-bcc0-c41d8cb916b8, 065b03f7-f615-41be-a313-0c622f7c56d5, 01b8cb82-ce65-4ef6-9984-19984462297b, 2af6c849-9b85-4fd7-9f2a-7442865bfb50, 22ef0902-f8ef-4d3e-95a2-a747ea9de046, 96e83049-3604-4d7f-b37a-18cca02ed516, 014dc557-2c56-4f56-a1f7-176bfda1b5f5, 1b075128-e471-4513-9c09-719cac0d8042, ab296976-894a-4260-94b6-1ecca9cfc208, a39a3db4-7b25-46ff-abaa-8c083dcf7322, 33f5240d-c81e-4aa7-b247-6db047b7fcb7, e07d0f64-8458-4e4c-91b7-ca7a3c70fe75, e4a8cc47-7c51-4715-a3d5-23767261b626, dab9d8cb-3c2e-440f-9fb5-9903ea8a6e6c, 7d9ee8dd-229b-43a3-a772-a094835a51c6, c50ca99e-b6e5-4eec-b52f-4e50c4033c06, 806782aa-6f72-49ff-99b0-13fee2f61bbc, 649ca3da-3c0c-48ee-a485-9d6a4b1a2095, f9383cb8-22bd-4b1f-9612-6ffff172dc70, 6390df42-3dcc-4d21-b3bb-87c2cf65eba4, 3814d550-2490-44df-9b85-ed033af4c692, 9e9ffc38-2ec6-4e63-8438-3bfbe5772a0a, cd90cb04-ef6a-4b8a-bc91-c27e4d7d232a, 9ef73582-fc21-499b-af1c-48cf64e24b8a'}]}"
"{'title': 'Pathology Data from WRRS (PATH) - Legacy', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '5f3f98068af2ef61552e1d75', 'name': 'SAIL'}, 'abstract': 'Legacy\n\nPathology Test Results and all Radiology reports for Wales. Data coverage differs by geography:\n\n2012 for Swansea (ABMU)\n\n2017 for Newport (AB)\n\n2012 for North Wales (BC)\n\n2007 for Cwm Taf\n\n2015/16 for Cardiff (CV)\n\n2014 for West Wales (HD)', 'keywords': ['Pathology', 'SAIL', 'NCS', 'National Core Study', 'COVID-19', 'PATH']}",48ef8f54-9606-4e6f-9256-3cc07ffd10b8,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'https://www.geonames.org/2634895/wales.html', 'typicalAgeRange': '0-150', 'pathway': 'All pathways at primary and secondary tiers of care.', 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'7.0.0': '730c4e2b-7412-40db-b4c6-84dcd4e8a1d9', '8.0.0': '0ac16d3d-5ca8-4e25-ad46-ce8e03a04e17', 'latest': '0ac16d3d-5ca8-4e25-ad46-ce8e03a04e17'}","{'description': 'Please note this is a legacy dataset where the latest available data was updated in 2018. It is advised you refer to the live dataset WRRS (Welsh Results Reports Service) for post-2018 coverage.\n\nPathology Test Results and all Radiology reports for Wales. Data coverage differs by geography:\n\n2012 for Swansea (ABMU)\n\n2017 for Newport (AB)\n\n2012 for North Wales (BC)\n\n2007 for Cwm Taf\n\n2015/16 for Cardiff (CV)\n\n2014 for West Wales (HD)', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/']}",0ac16d3d-5ca8-4e25-ad46-ce8e03a04e17,https://web.www.healthdatagateway.org/dataset/0ac16d3d-5ca8-4e25-ad46-ce8e03a04e17,"{'usage': {'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['Welsh Results Reports Service (WRRS)'], 'isReferencedBy': ['Al Sallakh, (2018); Creating and utilising the Wales Asthma Observatory to support health policy, health service planning and clinical research. Doctoral thesis, Swansea University. http://cronfa.swan.ac.uk/Record/cronfa48569']}, 'formatAndStandards': {'format': ['SQL database table'], 'vocabularyEncodingScheme': ['ICD10'], 'conformsTo': ['LOCAL'], 'language': ['en']}, 'access': {'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'dataController': 'NHS Wales’ Informatics Service (NWIS)', 'deliveryLeadTime': '2-6 MONTHS', 'jurisdiction': ['GB-WLS'], 'accessRights': ['https://saildatabank.com/application-process/'], 'dataProcessor': 'SAIL Databank', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). 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"{'title': 'Mental Health Dataset (MHDS) for CPRD GOLD', 'publisher': {'name': 'CPRD', 'memberOf': 'ALLIANCE', 'identifier': '607db9c2e1f9d3704d570cee'}, 'doiName': 'https://doi.org/10.48329/156v-3t60', 'contactPoint': 'enquiries@cprd.com', 'abstract': 'CPRD GOLD linked Mental Health Dataset (MHDS) data contain the type and location of care received, episodes of care, diagnoses and questionnaire scores for individuals who accessed secondary care adult mental health services in England.', 'keywords': ['Mental health']}",d5c0cc93-3347-46f0-b8dd-f44e82718e38,"{'spatial': ['https://www.geonames.org/6269131/england.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Secondary care', 'typicalAgeRange': '0-115', 'followup': '1 - 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'3.0.0': '95475a1f-1623-4bfa-9821-1159d4dbcc8e', '5.0.0': '0af73a56-5683-4072-99c0-01c84355d0d0', '2.0.0': '1293cf78-08e4-419e-bcb8-ad2cb8d66a6d', '4.0.0': '2d25b733-d95a-485b-9499-907a48b51919', '1.0.0': 'dab087f7-de38-47ca-be8e-1aca6ec0ddf7', '0.0.1': '29868002-c52d-49cb-807c-6ce2cf4963ea', 'latest': '0af73a56-5683-4072-99c0-01c84355d0d0'}","{'description': 'CPRD GOLD linked Mental Health Dataset (MHDS) is a collection of patient records of individuals who accessed secondary care adult mental health services and who are thought to be suffering from a mental illness. 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"{'title': 'Determinants of Adolescent Social Wellbeing & Health (DASH)', 'abstract': 'DASH is a multi-ethnic adolescent cohort study which investigates how social, environmental and biological factors affect the health and well-being of young people from different social and ethnic backgrounds in London.', 'publisher': {'memberOf': 'HUBS', 'name': 'DATAMIND', 'identifier': '61800787f4dde0c2a01e1ea2'}, 'keywords': ['DASH', 'Mental Health', 'Adolescence', 'Physical Measures', 'Longitudinal', 'DATAMIND']}",9d242d12-2d2e-4941-93e4-9ec40d239dd1,"{'spatial': ['https://www.geonames.org/2643743/london.html'], 'typicalAgeRange': '11-13', 'followup': '> 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '0b06a5c0-f015-4ce6-bf53-cab304334ae0'},"{'description': 'The DASH study was designed to systematically examine the influence of social conditions (particularly aspects of family life, school life and neighbourhoods) on the health and well-being of ethnic minority young people. A key aim of the DASH study is to investigate why some ethnic groups experience higher rates of certain diseases than other ethnic groups in adulthood.\n\nThe cohort contains over 6,500 pupils recruited from 51 schools across 10 inner-London boroughs. Pupils were aged 11-13 years old at the start of the study in 2003, and were followed up at 2005/06, 2010-13 and 2012/13. DASH was designed to have a sizeable number of respondents from the major ethnic minority groups and  has had high response rates in conventionally thought ‘hard to reach’ populations. Cultural differences within South Asian groups are well known but very little is known about these issues among those of African origin. In DASH, Black Caribbeans, Nigerians, Ghanaians and other Africans can be identified separately so that differences in health and well-being can be explored. The cohort is now in their early 20s and around 81% of the baseline sample has been traced via postal, electronic and web-based strategies. \n\nSocio-demographic, area, family life, social support, health (illness and health behaviour) and psychosocial data were collected from children at baseline and follow-up via self-complete questionnaires. Physical measurements included anthropometry, blood pressure, pubertal stage, lung function and salivary cotinine.  \n\nThe DASH study provides unique opportunities to better understand the complex interplay of social, biological, and environmental factors for individuals from ethnic minority groups.'}",0b06a5c0-f015-4ce6-bf53-cab304334ae0,https://web.www.healthdatagateway.org/dataset/0b06a5c0-f015-4ce6-bf53-cab304334ae0,"{'access': {'accessRights': ['http://dash.sphsu.mrc.ac.uk/Data-sharing.html'], 'dataProcessor': ""King's College London"", 'dataController': ""King's College London"", 'jurisdiction': ['GB-ENG']}}","{'temporal': {'timeLag': 'VARIABLE', 'accrualPeriodicity': 'OTHER', 'startDate': '2001-03-20'}, 'origin': {'purpose': ['STUDY']}}",2021-12-02T09:43:45Z,"[{'observedNode': 'PERSONS', 'measuredValue': 6643, 'observationDate': '2003-01-01 00:00:00', 'measuredProperty': 'Count'}]",1.0.0,,2021-12-02T09:43:45Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'HPB Biobank', 'publisher': {'contactPoint': 'b.davidson@ucl.ac.uk', 'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE'}, 'abstract': 'Collection of samples and data across the following diseases: Malignant neoplasm of liver, Malignant tumour of colon, Malignant tumour of pancreas', 'contactPoint': 'b.davidson@ucl.ac.uk', 'doiName': 'Not Available', 'keywords': ['Malignant tumour of pancreas', 'UKCRC Tissue Directory', 'Malignant neoplasm of liver', 'HPB', 'Biobank', 'Malignant tumour of colon']}",ebe6c9dd-fb95-4301-a929-c21b8077753a,"{'typicalAgeRange': '40-150', 'spatial': 'England', 'physicalSampleAvailability': ['TISSUE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'c201a7e8-506c-440c-8915-59b5de5fcde3', '3.0.0': '0b7ea326-fc05-4aca-a962-3f93128b91d1', '1.0.0': '9109e7cd-b360-49c8-ab89-b6f0119baedb', '2.0.0': '1cb31e11-505b-4ff6-ae20-5c468c9ad296', 'latest': '0b7ea326-fc05-4aca-a962-3f93128b91d1'}","{'description': 'Prospectively collected fresh tissues from surgery. All patients fully consented. Snap frozen paired cancers and normal tissues. Stored in liquid nitrogen. 1010 samples currently in bank.\n-\tHCC\n-\tCholangiocarcinoma\n-\tLiver meets\n-\tBenign tumours\n-\tGallbladder cancer\n-\tPancreas and ampullary cancers', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",0b7ea326-fc05-4aca-a962-3f93128b91d1,https://web.www.healthdatagateway.org/dataset/0b7ea326-fc05-4aca-a962-3f93128b91d1,"{'access': {'accessRights': 'Please contact the publisher using Contact Point details provided', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'dataController': 'UCL', 'dataProcessor': 'Not Applicable', 'accessRequestCost': 'Not specified', 'jurisdiction': 'GB-ENG'}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}}","{'temporal': {'startDate': '1998-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:05:20Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T15:59:43Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Welsh Demographic Service Dataset (WDSD)', 'publisher': {'name': 'SAIL', 'memberOf': 'ALLIANCE', 'identifier': '5f3f98068af2ef61552e1d75'}, 'keywords': ['Welsh', 'SAIL', 'NCS', 'National Core Study', 'COVID-19', 'core', 'WDSD'], 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'abstract': 'Register of all individuals registered with a Welsh GP, includes individuals anonymised address and practice history.'}",8a8a5e90-b0c6-4839-bcd2-c69e6e8dca6d,"{'spatial': ['https://www.geonames.org/2634895/wales.html'], 'pathway': 'All pathways about patients living in Wales', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '0b835c3e-9968-4f12-8aad-c4f10a7d460f'},"{'description': 'Administrative information about individuals in Wales that use NHS services; such as address and practice registration history. It replaced the NHS Wales Administrative Register (NHSAR) in 2009.\n\nData drawn from GP practices via Exeter System.\n\nThis dataset provides linkage from anonymous individual to anonymous residences, thus enable to group households of individuals.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/'], 'isPartOf': 'NOT APPLICABLE'}",0b835c3e-9968-4f12-8aad-c4f10a7d460f,https://web.www.healthdatagateway.org/dataset/0b835c3e-9968-4f12-8aad-c4f10a7d460f,"{'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'format': ['SQL database table'], 'language': ['en']}, 'access': {'deliveryLeadTime': '2-6 MONTHS', 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'dataController': 'SAIL Databank', 'dataProcessor': 'SAIL Databank', 'jurisdiction': ['GB'], 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'accessRights': ['https://saildatabank.com/application-process/']}, 'usage': {'isReferencedBy': ['Song et al., (2018); Assessing lifestyle risk factors and inequalities in health outcomes in most deprived communities in Wales. https://doi.org/10.23889/ijpds.v3i4.789'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'RESEARCH SPECIFIC RESTRICTIONS'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'resourceCreator': ['Digital Health and Care Wales (DHCW)']}}","{'origin': {'collectionSituation': ['PRIMARY CARE', 'OTHER'], 'source': ['EPR'], 'purpose': ['STUDY', 'ADMINISTRATIVE']}, 'temporal': {'startDate': '1990-01-01', 'endDate': '2021-07-26', 'timeLag': '1-2 WEEKS', 'distributionReleaseDate': '2019-09-26', 'accrualPeriodicity': 'WEEKLY'}}",2021-12-21T14:19:54Z,"[{'measuredValue': '3000000', 'observationDate': '01/09/2021', 'measuredProperty': 'Count', 'observedNode': 'EVENTS'}]",8.0.0,"{'tools': ['https://conceptlibrary.saildatabank.com/'], 'qualifiedRelation': ['Yes. 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Covers all Practices (not just SAIL) and this is flagged.', 'name': 'AR_PERS_GP', 'dataElementsCount': 6, 'dataElements': '223e7d2a-5bc1-4b85-8c57-e3023579cee7, 112b11ae-cfdd-4dd8-9b35-8376a48d054c, b9f41671-6eca-40cb-a307-3d1da124154a, f39529d2-cb7b-4d24-b27c-8a80e10b478d, 41ad51b6-7c0c-4e27-873d-a0a6686dcdc1, 08db1a0a-e6da-417e-986a-805a1b2351e3'}, {'id': '555fba11-762a-4302-89c0-6dcc2ebfa7e2', 'description': 'Records of people [living or deceased] who have both lived in Wales, and have ever registered with a GP practice in Wales. Provides demographic details e.g. date of birth/death, gender, etc.', 'name': 'AR_PERS', 'dataElementsCount': 6, 'dataElements': 'a876b7b2-479f-4b39-a6cb-3d63601583ac, 15fd0fdc-8715-44de-bd0b-d60195b77c78, dcb8e55d-2f66-4391-84ff-90e96046331d, 3aa89b24-7c6c-4439-a316-a3f4e5bbfa04, 97e0774c-05c8-4bc2-a8b9-d9a85ad62519, 09bd202d-bcf7-448a-9ded-03e2092243a3'}]}"
"{'title': 'Patient Episode Dataset for Wales (PEDW)', 'keywords': ['PEDW', 'SAIL', 'NCS', 'National Core Study', 'COVID-19', 'core', 'PEDW'], 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'publisher': {'identifier': '5f3f98068af2ef61552e1d75', 'name': 'SAIL', 'memberOf': 'ALLIANCE'}, 'abstract': 'The database contains all inpatient and day case activity undertaken in NHS Wales plus data on Welsh residents treated in English Trusts.'}",4c33a5d2-164c-41d7-9797-dc2b008cc852,"{'followup': 'OTHER', 'spatial': ['https://www.geonames.org/2634895/wales.html'], 'typicalAgeRange': '0-150', 'pathway': 'All pathways at this point of care', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'10.0.0': '2214c141-9610-4689-90d1-71b6d4889745', '13.0.0': '0bffc029-b739-4974-8855-8912a152834a', '11.0.0': '8c8ecd81-083c-4e1a-84e7-f6abfaed9a9c', '12.0.0': '196dc924-9289-4f31-900d-d9310dc34361', 'latest': '0bffc029-b739-4974-8855-8912a152834a'}","{'description': 'NHS Wales hospital admissions (Inpatients and daycases) dataset comprising of attendance and clinical information for all hospital admissions: includes diagnoses and operations performed. Includes spell and episode level data.\n\nThe data are collected and coded at each hospital. Administrative information is collected from the central PAS (Patient Administrative System), such as specialty of care, admission and discharge dates. After the patient is discharged the handwritten patient notes are transcribed by clinical coder into medical coding terminology (ICD10 and OPCS).\n\nThe data held in PEDW is of interest to public health services since it can provide information regarding both health service utilisation and also the incidence and prevalence of disease. However, since PEDW was created to track hospital activity from the point of view of payments for services, rather than epidemiological analysis, the use of PEDW for public health work is not straightforward. For example:\n\nCounts will vary depending on the number of diagnosis fields used e.g. primary only, all fields;\nThere are a number of different things that can be counted in PEDW e.g. individual episodes of care, admissions, discharges, periods of continuous care (group of episodes), patients or procedures.\nWhen looking at diagnosis or procedures the number will vary depending on whether you look at only in the primary diagnosis / procedure field or if the secondary fields are also included.\nCoding practices vary. In particular, coding practices for recording secondary diagnoses is likely to vary for different hospitals. This makes regional variations more difficult to interpret. The validation process led by the Corporate Health Improvement Programme and implemented by Digital Health and Care Wales (DHCW) is aiming to address some of these inconsistencies.\n\nDue to the complexity and pitfalls of PEDW it is recommended that any PEDW requests for public health purposes are discussed with a member of the SAIL team. In turn the SAIL will seek advice from DHCW if required.', 'isPartOf': 'No Group', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://www.youtube.com/watch?v=ZK9-Jw3uVkw', 'https://saildatabank.com/']}",0bffc029-b739-4974-8855-8912a152834a,https://web.www.healthdatagateway.org/dataset/0bffc029-b739-4974-8855-8912a152834a,"{'access': {'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'dataController': 'SAIL Databank', 'jurisdiction': ['GB-WLS'], 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'dataProcessor': 'SAIL Databank', 'accessRights': ['https://saildatabank.com/application-process/'], 'deliveryLeadTime': '2-6 MONTHS'}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL', 'OPCS4', 'NHS NATIONAL CODES', 'NHS WALES NATIONAL CODES', 'ICD10'], 'format': ['SQL database table'], 'language': ['en'], 'conformsTo': ['LOCAL']}, 'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS'], 'resourceCreator': ['Digital Health and Care Wales (DHCW)'], 'isReferencedBy': ['Hunt, L.P. et al. (2013)90-day mortality after 409?096 total hip replacements for osteoarthritis, from the National Joint Registry for England and Wales: a retrospective analysis, The Lancet, 382:9898, 1097-1104, https://doi.org/10.1016/S0140-6736(13)61749-3'], 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/']}}","{'temporal': {'endDate': '2022-04-01', 'distributionReleaseDate': '2019-07-15', 'startDate': '1995-04-01', 'accrualPeriodicity': 'WEEKLY', 'timeLag': '2-4 WEEKS'}, 'origin': {'purpose': ['CARE', 'AUDIT', 'ADMINISTRATIVE', 'FINANCIAL', 'OTHER'], 'collectionSituation': ['IN-PATIENTS'], 'source': ['EPR']}}",2021-09-13T15:20:50Z,"[{'measuredValue': '3000000', 'observedNode': 'EVENTS', 'observationDate': '01/09/2021', 'measuredProperty': 'Count'}]",13.0.0,"{'tools': ['https://conceptlibrary.saildatabank.com/'], 'qualifiedRelation': ['Yes. 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The reason for generating these cleaned views is that, in some common cases, they will be easier to work with and will perform better on the database than the other PEDW views, due to having to perform less joins.  One row per operation where the operations is linked to its alf and episode, spell and person spell identifiers.\n\nThe PEDW_ADMISSION_TABLE and the PEDW_SINGLE_OPER_TABLE are generated by the cleaning routine. The reason for generating these cleaned views is that, in some common cases, they will be easier to work with and will perform better on the database than the other PEDW views, due to having to perform less joins.', 'name': 'PEDW_ADMISSION_TABLE', 'dataElementsCount': 17, 'dataElements': '2dadaebd-954f-4b88-b411-efe6efc53dd0, 171d1707-0f0f-40c8-91ec-06f1fdb9354f, f66516d2-9780-4bf7-90bc-8e5620798284, 75541c38-8abc-4e93-9518-1242eff818bf, 686968e4-8924-46ae-b269-00d8430c2076, e1695422-a581-480f-a0a9-4ce8af84fb7d, 7057c66f-0ea1-4870-80af-2d52a6133aee, ae9e6258-96b6-4407-bb04-0a9e6eee75b2, 8530ccd6-cb14-4ad6-b605-581d3c37fbf4, e613b24f-01da-4bf1-8506-107510d5040d, 318cd81e-6573-4299-856c-039407157273, adc222c8-cf55-4b34-9079-148a11d071f8, 9cd38f1e-8c20-446f-8ca2-d280d6298447, 8229d6d5-270c-4db1-b3d2-20d3bb74aeb7, 0448c6ed-69c3-4ff0-9e04-69ae390d6679, d6be6391-1e97-487e-a5ef-67e5db426f3f, 6eebbecd-650c-4632-b035-71a595c3e78a'}, {'id': 'e2a32ec5-1b2c-4569-990b-bbb098e69db3', 'description': 'One row per diagnosis where the diagnosis is linked to its alf and episode, spell and person spell identifiers.\n\nThe PEDW_SINGLE_DIAG_TABLE and the PEDW_SINGLE_OPER_TABLE are generated by the cleaning routine. The reason for generating these cleaned views is that, in some common cases, they will be easier to work with and will perform better on the database than the other PEDW views, due to having to perform less joins.', 'name': 'PEDW_SINGLE_DIAG_TABLE', 'dataElementsCount': 10, 'dataElements': '80c7205f-64a6-43c3-aaf7-b47c1ec0c156, 6e7acdfd-223f-42fe-a61c-8d4df958b804, 4b0343b6-713a-4cf9-8301-5275961ce881, ae83b93c-00fb-4bc1-af3f-76997601165e, 1d267a1a-3384-4477-8dc8-7bf10be3cf42, eb29f9ea-895a-48ef-9dc4-7a29daa2a9e9, c11a3f7c-5621-4bb4-8f90-e1e5c963fd57, d7d1ca81-b8ce-4798-a529-6a8f65635eda, 3b8c3a1e-14b0-4fef-a4a7-a4ed954416c3, 4c78d3a0-092d-4e07-80ba-441e8cfaefa5'}, {'id': 'a258ff4e-339a-436c-9c54-bf4c2f76cfc1', 'description': 'One row per operation where the operations is linked to its alf and episode, spell and person spell identifiers.\n\nThe PEDW_SINGLE_DIAG_TABLE and the PEDW_SINGLE_OPER_TABLE are generated by the cleaning routine. The reason for generating these cleaned views is that, in some common cases, they will be easier to work with and will perform better on the database than the other PEDW views, due to having to perform less joins.', 'name': 'PEDW_SINGLE_OPER_TABLE', 'dataElementsCount': 11, 'dataElements': '5d1c346c-f601-4002-a1eb-0847ca199596, e150f66e-2044-4958-92f4-a06b10fa72a2, 44683d03-c507-4335-8784-f45842cdea02, d70ab93b-c701-4a31-a995-5e3357aa902c, 204398c7-04c6-42ba-b78e-68dad50092b4, 7e987d3f-b6a9-4bae-907c-08d267d46373, 810acb25-e989-45d6-a61e-ad4893d06dab, 93f1a7d8-707a-4bd4-b5b7-318130c739d7, bda8efeb-39cc-476a-827b-8b4692a06f38, 4cfc6f05-560b-4bee-99eb-4d69c8ab8bb2, d5e84d63-e22b-48bd-b246-46343700a602'}, {'id': 'af33c172-b1f6-47d0-b780-fe124d9f78f6', 'description': 'Diagnosis information (1 row = 1 diagnosis) Note, PEDW tables are unique at combination of prov_unit_cd, spell_num_e, epi_num, and diag_num where available.', 'name': 'diag', 'dataElementsCount': 10, 'dataElements': 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dfd8b0fc-1c80-4478-86e3-630fbe661372'}, {'id': '46ca0d98-ea55-4856-be13-7a1aaf18cae6', 'description': 'Attendance information at spell level (1 row = 1 spell) Note, PEDW tables are unique at combination of prov_unit_cd, spell_num_e, epi_num, and diag_num where available.', 'name': 'spell', 'dataElementsCount': 47, 'dataElements': 'b96a127d-755b-4c6a-9bb6-fa2a31e2c6dd, 8b2a1aea-1b19-48a7-92b6-6012607885d9, 80f5077a-a451-400a-8d54-5a3d718a0584, 0eead177-dec1-4ae4-9cc6-95fac440807f, 753c6383-0b49-4981-87b6-b8c7a1648234, ea0dad33-0ccd-4b88-a8ff-7dad19ac0dd7, 4cd70687-97ad-42e3-afd8-ca9198fabb66, 2add7440-d38d-4d84-bc19-98abd64a42a9, 17efbaa4-ec5b-41ce-bf39-f86915528227, 75fb7751-e6c6-4a64-bc36-bb7d35817ea7, e2d4fc3c-38df-4af9-b8f4-10997c806884, d650b9c3-f508-4832-911c-9662ec87cd06, 63dd6848-ed20-4e95-adbb-d26a7b6c2768, 5721c9b7-7801-4849-8ced-a20b30f09915, ada2796b-ca7e-4dd2-a42e-529af2ffa5fd, bee22d03-104f-4826-a4ef-04a5025dc1e8, 1eb9ca7b-e202-4fac-b759-6612b6dc5fd1, 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dda88487-230a-4b13-8059-92f11ac6c163, 251a213f-3a09-452b-8390-feedd073b5bd, 38030992-ad71-4ed0-a977-b34c83421384, 8516dccd-18b5-48a0-b0df-464740f1d118'}, {'id': '7143e2df-f54c-469a-9c69-4082292c97a4', 'description': 'Attendance information at superspell level (1 row = 1 superspell) Note, PEDW tables are unique at combination of prov_unit_cd, spell_num_e, epi_num, and diag_num where available.', 'name': 'superspell', 'dataElementsCount': 6, 'dataElements': '89cf4be4-8c35-4db6-9060-2fb4c38306b1, b44d5342-cd27-4d79-9e22-785de2d5fbba, a67fa513-1cc5-4b2d-b5ae-b65f0578f664, 21428dd9-ebaa-4034-8049-1bdbde46e242, cebb4739-0c4f-4fe0-833c-7ec57976fccb, fa411102-0a2b-42fe-87b9-7dceaedb774b'}, {'id': '49c94672-374a-42df-bfc2-fcfb71be22c8', 'description': 'Clinical Procedure information (1 row = 1 operation) Note, PEDW tables are unique at combination of prov_unit_cd, spell_num_e, epi_num, and diag_num where available.', 'name': 'oper', 'dataElementsCount': 11, 'dataElements': '194bebf2-f502-4e4a-83c5-d9c9e8791666, 1107c0fa-9398-454b-9aa7-21d1705c08ee, 1f5d599f-1ed6-4cf9-a093-f6c8984b1dc5, 15f64107-2cc9-4109-abd3-2273f8e3a486, 4d7b7bfe-b554-405a-80ee-ae28ee0e14f8, d2e2b3a3-2114-4294-9c27-c62cc126cf3a, b8df48fa-0641-4e23-aead-82bc4be572ad, 71bff545-3a1f-48e2-af8e-565a88607247, 3058f4df-267e-4963-8df0-3294016347f2, a3d64889-53fa-4926-a3a7-b05c3eb947fd, 90d4ac3a-3ad9-4727-8fa5-c99330965104'}]}"
"{'title': 'Teleconsultation in remote rural India: management of COPD and Asthma', 'publisher': {'contactPoint': 'RESPIRE@ed.ac.uk', 'name': 'BREATHE', 'memberOf': 'HUB'}, 'abstract': 'The qualitative dataset contains the transcripts of interviews with opinion leaders and clinicians to understand their perceptions on use of teleconsultations for diagnosis and management of chronic respiratory diseases.', 'contactPoint': 'RESPIRE@ed.ac.uk', 'keywords': ['resource constrained', 'remote', 'teleconsultation', 'micro-health-centre', 'COPD', 'asthma', 'RESPIRE', 'rural', 'BREATHE']}",de496590-26b3-4e74-bc5e-1ff5c83f5b43,"{'spatial': 'India', 'typicalAgeRange': '>18', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'ffc34689-1a81-4f56-9c3f-e62b76d8445b', '1.0.0': '0c219a61-a1d6-4c5b-bec2-3537454e4137', 'latest': '0c219a61-a1d6-4c5b-bec2-3537454e4137'}","{'description': 'Remote rural places have always experienced inequity in access to health care facilities and services. Even where places are equipped with facilities, the availability of trained health care providers is a challenge.\n\nRecent advances in technology have enabled clinicians to deploy telemedicine in remote locations. Telehealthcare provides a holistic approach to health and wellbeing by improving access. However, multiple barriers still exist to implement telehealthcare and to scale-up the available technology.\n\nUse of telehealthcare for the management of Chronic Respiratory Disorders (CRDs) in India is not yet proven, hence a feasibility study will help to explore barriers and facilitators to the successful implementation of teleconsultation. This could be done by documenting views, opinions and experiences of opinion leaders and by understanding the perception of the stakeholders, including providers and patients, towards doctor-to-doctor teleconsultation.\n\nThis study will generate evidence for creating a policy on ‘Management of overall chronic diseases at remote rural area in India using teleconsultation’.\n\nFor further information, see: https://www.ed.ac.uk/usher/respire/phd-studentships/rutuja-patil', 'isPartOf': 'BREATHE'}",0c219a61-a1d6-4c5b-bec2-3537454e4137,https://web.www.healthdatagateway.org/dataset/0c219a61-a1d6-4c5b-bec2-3537454e4137,"{'access': {'deliveryLeadTime': 'OTHER', 'dataController': 'RESPIRE', 'accessRights': 'Access is managed on a project-by-project basis. Contact the RESPIRE team: https://www.ed.ac.uk/usher/respire/about/projects', 'dataProcessor': 'RESPIRE', 'jurisdiction': 'IN'}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'format': ['Microsoft Word Documents'], 'vocabularyEncodingScheme': ['LOCAL']}, 'usage': {'resourceCreator': 'RESPIRE Collaboration'}}","{'temporal': {'endDate': '2021-03-31', 'startDate': '2018-01-04'}}",2020-08-25T18:05:00Z,,1.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-04-14T08:27:32Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Tissue Access for Patient Benefit (TAPb)', 'doiName': 'Not Available', 'keywords': ['TAPb', 'Tissue Access for Patient Benefit', 'UKCRC Tissue Directory'], 'publisher': {'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE', 'contactPoint': 'a.gander@ucl.ac.uk'}, 'abstract': 'Collection of samples and data across the following diseases: Fit and well, Primary biliary cirrhosis (disorder)', 'contactPoint': 'a.gander@ucl.ac.uk'}",35985f8e-f01a-41cc-a9e2-30299d3d6eed,"{'typicalAgeRange': '15-150', 'spatial': 'England', 'physicalSampleAvailability': ['PLASMA', 'SERUM', 'TISSUE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'e9634df2-99f2-464f-bb12-4111eca19e33', '3.0.0': '0c50801d-1079-4879-b608-5e8f112b313f', '0.0.1': '214936ef-c29f-41ff-abf6-309c123f144c', '2.0.0': '9cb10184-7459-4ca5-ac30-d2364e70821d', 'latest': '0c50801d-1079-4879-b608-5e8f112b313f'}","{'description': 'We aim to facilitate the pathway for access, storage, use and transfer of human organs, cells and tissue between clinical centres within UCL Partners, academic groups in UCL, other universities, hospitals, medical researcher and biotechnology companies, to enhance the ability for researchers to access the materials they need. Alongside this, researcher will be able to exchange information and access guides on regulatory, ethics and practical issues concerning access, transfer and use of this type of material. These guides will be video and documents format, based on talks at organised events given by experts in the relevant fields.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",0c50801d-1079-4879-b608-5e8f112b313f,https://web.www.healthdatagateway.org/dataset/0c50801d-1079-4879-b608-5e8f112b313f,"{'access': {'dataController': 'UCL', 'jurisdiction': 'GB-ENG', 'dataProcessor': 'Not Applicable', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'accessRequestCost': 'Not specified', 'accessRights': 'Please contact the publisher using Contact Point details provided'}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}}","{'temporal': {'startDate': '2014-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:14:15Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T16:14:55Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Early Pandemic Evaluation and Enhanced Surveillance of COVID-19 (EAVE II)', 'doiName': '10.1136/bmjopen-2020-039097', 'publisher': {'memberOf': 'HUB', 'name': 'BREATHE', 'contactPoint': 'breathe.saildatabank@swansea.ac.uk'}, 'abstract': 'Population-level surveillance and rapid assessment of the effectiveness of therapeutic or preventive interventions are required to ensure that interventions are targeted to those at highest risk of serious illness or death from COVID-19.', 'contactPoint': 'breathe.saildatabank@swansea.ac.uk', 'keywords': ['COVID-19', 'BREATHE', 'CO-CONNECT']}",25bc9862-5b6c-4dda-80b2-46642d9e518a,"{'typicalAgeRange': '0-150', 'spatial': 'Scotland', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '191c1e3f-4eff-41b9-bff1-c6510f7c6c3d', '1.0.0': '0c78d1cf-4ba6-44f4-adcf-16c15142d8fb', 'latest': '0c78d1cf-4ba6-44f4-adcf-16c15142d8fb'}","{'description': 'Introduction: Following the emergence of the novel severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) in December 2019 and the ensuing COVID-19 pandemic, population-level surveillance and rapid assessment of the effectiveness of existing or new therapeutic or preventive interventions are required to ensure that interventions are targeted to those at highest risk of serious illness or death from COVID-19. We aim to repurpose and expand an existing pandemic reporting platform to determine the attack rate of SARS-CoV-2, the uptake and effectiveness of any new pandemic vaccine (once available) and any protective effect conferred by existing or new antimicrobial drugs and other therapies.\n\nMethods and analysis: A prospective observational cohort will be used to monitor daily/weekly the progress of the COVID-19 epidemic and to evaluate the effectiveness of therapeutic interventions in approximately 5.4?million individuals registered in general practices across Scotland. A national linked dataset of patient-level primary care data, out-of-hours, hospitalisation, mortality and laboratory data will be assembled. The primary outcomes will measure association between: (A) laboratory confirmed SARS-CoV-2 infection, morbidity and mortality, and demographic, socioeconomic and clinical population characteristics; and (B) healthcare burden of COVID-19 and demographic, socioeconomic and clinical population characteristics. The secondary outcomes will estimate: (A) the uptake (for vaccines only); (B) effectiveness; and (C) safety of new or existing therapies, vaccines and antimicrobials against SARS-CoV-2 infection. The association between population characteristics and primary outcomes will be assessed via multivariate logistic regression models. The effectiveness of therapies, vaccines and antimicrobials will be assessed from time-dependent Cox models or Poisson regression models. Self-controlled study designs will be explored to estimate the risk of therapeutic and prophylactic-related adverse events.\n\nhttps://bmjopen.bmj.com/content/10/6/e039097', 'isPartOf': 'BREATHE'}",0c78d1cf-4ba6-44f4-adcf-16c15142d8fb,https://web.www.healthdatagateway.org/dataset/0c78d1cf-4ba6-44f4-adcf-16c15142d8fb,"{'access': {'accessRights': 'https://saildatabank.com/application-process/', 'dataController': 'EAVEII team', 'jurisdiction': 'GB-GBN', 'deliveryLeadTime': '1-2 MONTHS', 'dataProcessor': 'EAVEII team'}, 'formatAndStandards': {'vocabularyEncodingScheme': ['READ', 'ICD10'], 'format': ['Excel Files', 'R Files'], 'language': ['en'], 'conformsTo': ['LOCAL']}, 'usage': {'resourceCreator': 'Public Health Scotland', 'isReferencedBy': ['https://bmjopen.bmj.com/content/10/6/e039097']}}",{'temporal': {'accrualPeriodicity': 'MONTHLY'}},2020-09-09T11:22:50Z,,1.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['GP data', 'Electronic Communication of Surveillance in Scotland (ECOSS)', 'Scottish Morbidity Record (SMR) including SMR00 and SMR01', 'Prescribing Information System (PIS)', 'GP Out-of-hours', 'NHS 24', 'COVID-19 Community Hubs and Assessment Centres', 'Scottish Hospital Electronic Prescribing and Medicines Administration (HEPMA) system', 'Scottish Ambulance Service (SAS)', 'Scottish Intensive Care Society Audit Group (SICSAG)', 'COVID19 Clinical Information Network / International Severe Acute Respiratory and emerging Inflection Consortium (CO-CIN/ISARIC)', 'Rapid Preliminary Inpatient Data (RAPID)', 'National Records of Scotland (NRS) deaths', 'Serology data', 'Genome sequencing data', 'Pregnancy and birth data', 'Census 2011 data', 'Child Health Systems Programme - School (CHSP-S)']}",2021-04-14T08:28:31Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Substance Misuse Dataset (SMDS)', 'publisher': {'name': 'SAIL', 'identifier': '5f3f98068af2ef61552e1d75', 'memberOf': 'ALLIANCE'}, 'keywords': ['Misuse', 'Substance', 'SAIL', 'core-res', 'SMDS'], 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'abstract': 'The Substance Misuse Data Set captures data relating to all individuals (clients), both young persons and adults, presenting for substance misuse treatment in Wales.'}",291c0dd4-0988-42d2-8e0b-878a892add57,"{'spatial': ['https://www.geonames.org/2634895/wales.html'], 'pathway': 'Secondary care', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150', 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'7.0.0': '454a6092-760d-40a3-be22-5c704a324368', '9.0.0': '0c8fcf41-177b-4ca8-a01f-d86ca8bd5a03', '8.0.0': '019aaff2-4b37-474e-b7c1-4223b224b788', 'latest': '0c8fcf41-177b-4ca8-a01f-d86ca8bd5a03'}","{'description': 'The Substance Misuse Data Set captures data relating to all individuals (clients), both young persons and adults, presenting for substance misuse treatment in Wales.\n\nWelsh providers delivering substance misuse treatment and who are in receipt of Welsh Government substance misuse revenue funding are required to submit the Data Set.\n\nTreatment Outcomes Profiles are only required to be completed for Adults (age 16 and over) in receipt of structured treatments.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://www.youtube.com/watch?v=ZK9-Jw3uVkw', 'https://saildatabank.com/'], 'isPartOf': 'NOT APPLICABLE'}",0c8fcf41-177b-4ca8-a01f-d86ca8bd5a03,https://web.www.healthdatagateway.org/dataset/0c8fcf41-177b-4ca8-a01f-d86ca8bd5a03,"{'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'format': ['SQL database table'], 'conformsTo': ['LOCAL']}, 'access': {'accessRights': ['https://saildatabank.com/application-process/'], 'dataProcessor': 'SAIL Databank', 'deliveryLeadTime': '2-6 MONTHS', 'dataController': 'Welsh Cancer Intelligence & Surveillance Unit (WCISU)', 'accessRequestCost': ['Data provision is free from SAIL. 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"{'title': 'Problem, Diagnosis and Procedures', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'BARTS HEALTH', 'identifier': '607db9c2e1f9d3704d570cde'}, 'keywords': ['BartsHealth'], 'contactPoint': 'BartsHealth.ResearchDataRequest@nhs.net', 'abstract': 'Locally defined dataset which contains SNOMED recorded terms for patient Problems, Diagnosis and Procedures'}",51b41359-1558-48df-9950-88f75ca6ac4c,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '0cd32bab-357b-4ea2-bba0-eca90b7b36e9'},"{'description': 'Locally defined dataset which contains SNOMED recorded terms for patient Problems, Diagnosis and Procedures', 'isPartOf': 'N/A'}",0cd32bab-357b-4ea2-bba0-eca90b7b36e9,https://web.www.healthdatagateway.org/dataset/0cd32bab-357b-4ea2-bba0-eca90b7b36e9,"{'access': {'accessRights': ['Available locally within Trust corporate Data Warehouse System and authorised access by Trust 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"{'title': 'NIHR IBD BioResource: NHS Trust data', 'abstract': '10 NHS Trusts have been asked to provide detailed data on participants in their Trust. Categories of data requested include: test results; prescribing; imaging; digital pathology; data from disease-specific databases and registries; discharge summaries.', 'publisher': {'identifier': '607db9c3e1f9d3704d570d0a', 'name': 'GUT REACTION', 'memberOf': 'HUB'}, 'contactPoint': 'nbr@bioresource.nihr.ac.uk', 'keywords': ['IBD', ""Crohn's"", 'colitis', 'recall', 'NHS', 'Trusts']}",ae1898da-7fe5-4fe0-b10d-9f06cdec1735,"{'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM'], 'typicalAgeRange': '18-85', 'spatial': ['https://www.geonames.org/6269131/england.html'], 'followup': '1 - 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '0d65fabc-6cb0-4a77-a01d-cb341b0b053c'},"{'description': 'The NIHR IBD BioResource comprises ~34k participants with Inflammatory Bowel Disease (IBD). For the Gut Reaction programme, 10 NHS Trusts have been asked to provide detailed data on the participants in their Trust.  Categories of data requested include: test results; prescribing; imaging; digital pathology; data from disease-specific databases and registries; and discharge summaries. While the formats and contents will vary, the hope is that this will be a much richer source of data than nationally collated datasets, like NHS Digital.', 'isPartOf': 'Not Applicable', 'associatedMedia': ['https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction-data-sources', 'https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction/']}",0d65fabc-6cb0-4a77-a01d-cb341b0b053c,https://web.www.healthdatagateway.org/dataset/0d65fabc-6cb0-4a77-a01d-cb341b0b053c,"{'access': {'accessService': 'Data may only be accessed in an approved Trustworthy Research Environment (TRE).', 'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)', 'jurisdiction': ['GB-GB'], 'accessRights': ['https://bioresource.nihr.ac.uk/using-our-bioresource'], 'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)', 'accessRequestCost': ['https://bioresource.nihr.ac.uk/using-our-bioresource/industry-researchers/industry-bioresource-usage-costs/'], 'deliveryLeadTime': '2-6 MONTHS'}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['NHS NATIONAL CODES'], 'format': ['text', 'csv'], 'language': ['en']}, 'usage': {'resourceCreator': ['NIHR BioResource. Acknowledgement text: ""We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.""'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': ['RESEARCH USE ONLY'], 'isReferencedBy': ['Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/']}}","{'origin': {'collectionSituation': ['ACCIDENT AND EMERGENCY', 'OUTPATIENTS', 'IN-PATIENTS'], 'source': ['EPR'], 'purpose': ['STUDY']}, 'temporal': {'startDate': '2021-10-01', 'timeLag': '2-6 MONTHS', 'accrualPeriodicity': 'IRREGULAR'}}",2021-09-09T17:34:55Z,"[{'observedNode': 'PERSONS', 'measuredValue': '6269', 'measuredProperty': 'COUNT', 'observationDate': '02/07/2021', 'disambiguatingDescription': 'Participants from NHS Trusts that have provided additional EHR data as part of Gut Reaction.'}]",1.0.0,{'derivation': ['Not Available']},2021-09-09T17:34:55Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'The Cleft Collective', 'contactPoint': 'cleft-collective@bristol.ac.uk', 'publisher': {'memberOf': 'ALLIANCE', 'contactPoint': 'cleft-collective@bristol.ac.uk', 'name': 'TISSUE DIRECTORY'}, 'doiName': 'Not Available', 'abstract': 'Collection of samples and data across the following diseases: Orofacial cleft (disorder)', 'keywords': ['Orofacial cleft (disorder)', 'UKCRC Tissue Directory', 'The Cleft Collective']}",12288034-00a4-47a8-a779-1cf7a55270e4,"{'spatial': 'England', 'physicalSampleAvailability': ['IN PROGRESS'], 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '3983f3ec-ce63-4142-b73e-93130654710b', '3.0.0': '0d6ab9af-c43b-490d-b39c-2d72de46a661', '0.0.1': '1fefb0f0-3c60-49f3-b6e3-96b05f161108', '1.0.0': '0a3f9e0d-4208-4f06-a34b-686e7924cba7', 'latest': '0d6ab9af-c43b-490d-b39c-2d72de46a661'}","{'description': ""The Cleft Collective is a longitudinal cohort study looking to investigate the biological and environmental causes of cleft and the best treatments of cleft on those affected and their families.  The study comprises two separate cohorts, a Birth Cohort and a 5-year-old Cohort.  The birth cohort is further split into two sub-groups, postnatal and antenatal, allocation to these groups is determined by the time of recruitment.  Recruitment to the two cohorts is currently ongoing across the UK.  A large amount of phenotypic and environmental exposure data is being collected via questionnaires and record linkage. A data dictionary, available on the study website, contains details of all the available data.  \nAs a minimum, biological mother and affected child are recruited to the study.  Where possible, biological father or mother's partner is also recruited.  In addition, the study aims to recruit unaffected and affected siblings for a small proportion of the cohort.  \nBiological samples are collected from all participants.  Parents and siblings of both cohorts and affected children of the 5-year-old cohort provide saliva samples.  Residual tissue and blood samples are collected from affected children recruited to the birth cohort.  In addition, cord blood samples are collected from families recruited to the antenatal strand."", 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",0d6ab9af-c43b-490d-b39c-2d72de46a661,https://web.www.healthdatagateway.org/dataset/0d6ab9af-c43b-490d-b39c-2d72de46a661,"{'access': {'dataController': 'The University of Bristol', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'accessRequestCost': 'Not specified', 'dataProcessor': 'Not Applicable', 'jurisdiction': 'GB-ENG', 'accessRights': 'Please contact the publisher using Contact Point details provided'}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}}","{'temporal': {'distributionReleaseDate': '2019-08-08', 'startDate': '2013-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:14:14Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:14:52Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'MRC Brain Banks Network', 'publisher': {'memberOf': 'ALLIANCE', 'contactPoint': 'richard.cain@bristol.ac.uk', 'name': 'TISSUE DIRECTORY'}, 'abstract': ""Collection of samples and data across the following diseases: Alzheimer's disease (disorder), Asthma (disorder), Atrial fibrillation and flutter (disorder), Cerebrovascular disease (disorder)\nSee full list in description."", 'doiName': 'Not Available', 'contactPoint': 'richard.cain@bristol.ac.uk', 'keywords': ['Complete trisomy 21 syndrome (disorder)', 'Congenital anomaly of brain (disorder)', 'Diabetes mellitus type 2', ""Huntington's chorea (disorder)"", 'Vascular dementia (disorder)', 'Malignant tumour of prostate (disorder)', 'Atrial fibrillation and flutter (disorder)', 'Malignant tumour of oesophagus', ""Parkinson's disease (disorder)"", 'Dementia (disorder)', 'Diabetes mellitus type 1', 'Depressive disorder (disorder)', 'Motor neuron disease (disorder)', 'Spinal muscular atrophy (disorder)', 'Cerebrovascular disease (disorder)', 'Epilepsy (disorder)', 'Jakob-Creutzfeldt disease (disorder)', 'Malignant neoplasm of brain', 'Psychotic disorder (disorder)', 'Malignant tumour of lung', 'Ischemic heart disease (disorder)', 'Malignant tumour of breast', 'Multiple sclerosis (disorder)', 'Progressive supranuclear ophthalmoplegia (disorder)', ""Alzheimer's disease (disorder)"", 'Fit and well', 'Malignant tumour of colon', 'Malignant tumour of urinary bladder (disorder)', 'Brain', 'Asthma (disorder)', 'Degenerative brain disorder (disorder)', 'UKCRC Tissue Directory', 'Multiple system atrophy (disorder)', 'Malignant tumour of ovary', 'MRC']}",6f1b9a4e-2367-47f1-a985-3ed9bf3a7211,"{'spatial': 'England', 'physicalSampleAvailability': ['TISSUE'], 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'cbf3d216-0ab1-4595-bd16-98d58eb76938', '3.0.0': '0d70b5c8-da5d-49c5-8ff5-0bdc7b5f6306', '2.0.0': 'b717d41e-9202-40ed-be1a-882ec0c47761', '1.0.0': 'b5dea544-6c65-4d35-9ef2-b1bdc3fd4702', 'latest': '0d70b5c8-da5d-49c5-8ff5-0bdc7b5f6306'}","{'description': ""The UK Brain Bank Network is an initiative, led by the MRC, to establish a coordinated national network of UK brain tissue resources (banks) for researchers to use.\n\nThe banks store post-mortem brain and central nervous system (CNS) tissue donated by the public for diagnosis and research into disorders.  Advances in understanding genetics and many of the molecules that define brain function mean that more and more research questions can be answered from human brain tissue.\n\nCollection of samples and data across the following diseases: Alzheimer's disease (disorder), Asthma (disorder), Atrial fibrillation and flutter (disorder), Cerebrovascular disease (disorder),Complete trisomy 21 syndrome (disorder), Congenital anomaly of brain (disorder), Degenerative brain disorder (disorder), Dementia (disorder), Depressive disorder (disorder), Diabetes mellitus type 1, Diabetes mellitus type 2, Epilepsy (disorder), Fit and well, Huntington's chorea (disorder), Ischemic heart disease (disorder), Jakob-Creutzfeldt disease (disorder), Malignant neoplasm of brain, Malignant tumour of prostate (disorder), Malignant tumour of urinary bladder (disorder), Malignant tumour of breast, Malignant tumour of colon, Malignant tumour of lung, Malignant tumour of oesophagus, Malignant tumour of ovary, Motor neuron disease (disorder), Multiple sclerosis (disorder), Multiple system atrophy (disorder), Parkinson's disease (disorder), Progressive supranuclear ophthalmoplegia (disorder), Psychotic disorder (disorder), Spinal muscular atrophy (disorder), Vascular dementia (disorder)."", 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",0d70b5c8-da5d-49c5-8ff5-0bdc7b5f6306,https://web.www.healthdatagateway.org/dataset/0d70b5c8-da5d-49c5-8ff5-0bdc7b5f6306,"{'access': {'accessRights': 'Please contact the publisher using Contact Point details provided.', 'accessRequestCost': 'Not specified', 'jurisdiction': 'GB-ENG', 'dataProcessor': 'Not Applicable', 'dataController': 'University of Bristol', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED.'}, 'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}}","{'temporal': {'startDate': '2013-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:16:31Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:06:50Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Leeds NIHR Biomarker Research Tissue Bank', 'publisher': {'name': 'TISSUE DIRECTORY', 'contactPoint': 'rtb@leeds.ac.uk', 'memberOf': 'ALLIANCE'}, 'abstract': 'Collection of samples and data across the following diseases: Cirrhosis of liver (disorder), Fit and well, Malignant tumour of kidney (disorder), Recipient of transplantation (finding).', 'contactPoint': 'rtb@leeds.ac.uk', 'doiName': 'Not Available', 'keywords': ['Malignant tumour of kidney (disorder)', 'Cirrhosis of liver (disorder)', 'Tissue Bank', 'UKCRC Tissue Directory', 'NIHR', 'Biomarker Research', 'Leeds', 'Recipient of transplantation (finding)', 'Fit and well', 'RTB']}",8648d251-6186-4383-82fc-c036a87c3842,"{'physicalSampleAvailability': ['PLASMA', 'SERUM', 'TISSUE', 'URINE'], 'typicalAgeRange': '40-150', 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '3c739f5a-9b25-44a4-80f1-b57e84e132b1', '3.0.0': '0d79e0d8-9b3d-4450-9c34-0539673dc9a5', '2.0.0': 'f5b57b56-a4ed-46d4-825f-d181e8db809d', '0.0.1': 'f3762b64-2880-4deb-bf88-9a9fc64ea9e2', 'latest': '0d79e0d8-9b3d-4450-9c34-0539673dc9a5'}","{'description': 'Background:\nThe Leeds NIHR Biomarker Research Tissue Bank (RTB) is part of a National Institute for Health Research (NIHR) Programme Grants for Applied Research award, focused on biomarker evaluation in selected disease areas.  The RTB was established for the multicentre collection and storage of samples from patients with liver diseases recruited within a randomised controlled trial (ELUCIDATE) of a biomarker panel, renal cancer patients and patients undergoing kidney transplant.\nThe Leeds NIHR Biomarker RTB is jointly managed along with the Multidisciplinary RTB by the Joint RTB Management Committee. The Leeds NIHR Research Tissue Bank (RTB) was given favourable ethical opinion by the Leeds (East) Research Ethics Committee on 15th June 2010 (Current REC ref: 15/YH/0099).  \n\nSample collections:\nOver the duration of the programme, 2,116 participants were recruited in total with 5,976 samples. Sample collection has taken place in multiple centres in the UK. These comprise:\n-\t847 patients with liver disease each with a single serum samples \n-\t514 patients on the kidney transplant waiting list including 312 subsequently transplanted, with 3,806 samples, each sample including multiple aliquots of serum, plasma and urine\n-\t706 patients with suspected renal cancer (200 longitudinal and 506 cross-sectional)  with 1,132 samples, including multiple aliquots of serum, plasma, buffy coat and urine and an FFPE tissue block (frozen available in Leeds patients only)\n-\t149 healthy volunteers with 191 samples, each sample including multiple aliquots of serum, plasma and urine.\nAll samples were collected according to SOPs and have been shipped from the participating sites and stored centrally in Leeds Biobanking and Sample Processing Facility.  Associated clinical data has been collected using standard study-specific case report forms (CRFs), including long-term follow-up in many cases. \nInitially access to samples is prioritised for the needs of the Programme and investigators involved but additional collaborative access will then be possible. To find out further information please e-mail our Research Tissue Bank and Sample Processing Facility Manager, Pirkko-Liisa Muhonen at rtb@leeds.ac.uk.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",0d79e0d8-9b3d-4450-9c34-0539673dc9a5,https://web.www.healthdatagateway.org/dataset/0d79e0d8-9b3d-4450-9c34-0539673dc9a5,"{'access': {'dataController': 'University of Leeds', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED.', 'accessRequestCost': 'Not specified', 'accessRights': 'Please contact the publisher using Contact Point details provided.', 'jurisdiction': 'GB-ENG', 'dataProcessor': 'Not Applicable'}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2011-01-01'}}",2020-01-13T17:16:29Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:06:40Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Renal Register – PHS National Dataset', 'keywords': ['Scotland', 'Renal', 'HIC', 'PHS', 'Tayside', 'Fife'], 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d1f', 'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE'}, 'contactPoint': 'hicsupport@dundee.ac.uk', 'abstract': 'Extract from Public Health Scotland Renal register for Tayside and Fife.'}",32edd77d-533c-423f-b045-937507f8505d,"{'spatial': ['https://www.geonames.org/2636157/tayside-region.html', 'http://www.geonames.org/2649469/fife.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'UNKNOWN', 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '0ddb1d67-e0b9-4b08-898c-9957a09d7e69'},"{'description': 'Extract from PHS Renal register for Tayside and Fife. Patients included are High Dependency, Peritoneal Dependent and transplant. Patients excluded would be any others. Eg Low Clearance, Renal Referrals - basically any patients who are not actually dialysing or transplanted.', 'isPartOf': 'University of Dundee Health Informatics Centre'}",0ddb1d67-e0b9-4b08-898c-9957a09d7e69,https://web.www.healthdatagateway.org/dataset/0ddb1d67-e0b9-4b08-898c-9957a09d7e69,"{'access': {'accessRights': ['https://www.dundee.ac.uk/hic/governanceapprovalsupport/'], 'accessService': 'HIC has implemented a remote-access Trusted Research Environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details are available via the following link:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/', 'deliveryLeadTime': '2-4 WEEKS', 'dataProcessor': 'University of Dundee, Health Informatics Centre', 'accessRequestCost': ['Quotation available on request'], 'dataController': 'Local NHS boards', 'jurisdiction': ['GB-SCT']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['PHS/ NHS Tayside & Fife'], 'dataUseRequirements': ['DISCLOSURE CONTROL']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'language': ['en'], 'format': ['CSV', 'Database']}}","{'origin': {'purpose': ['DISEASE REGISTRY'], 'source': ['EPR'], 'collectionSituation': ['CLINIC']}, 'temporal': {'distributionReleaseDate': '2021-09-09', 'timeLag': 'NOT APPLICABLE', 'accrualPeriodicity': 'STATIC', 'endDate': '2019-09-04', 'startDate': '2002-01-01'}}",2021-11-19T15:55:36Z,"[{'observedNode': 'PERSONS', 'measuredValue': '2800', 'disambiguatingDescription': '2800 patients in the dataset', 'observationDate': '09/09/2021', 'measuredProperty': 'COUNT'}, {'observedNode': 'EVENTS', 'measuredValue': '2800', 'disambiguatingDescription': '2800 records in the dataset', 'observationDate': '11/11/2021', 'measuredProperty': 'Count'}]",4.0.0,,2021-11-19T15:55:36Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 19, 'structuralMetadata.columnName': 19, 'structuralMetadata.columnDescription': 19, 'structuralMetadata.dataType': 19, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '992f6555-a94b-4f7e-abd0-a6608bdbbf9e', 'description': ""Extract from ISD's Renal register for Tayside and Fife.  Patients included are High Dependancy, Peritonatal Dependant and transplant.   Patients excluded would be any others Eg Low Clearance, Renal Referrals - basically any patients who aren't actually dialysing or transplanted."", 'name': 'Renal Register - ISD', 'dataElementsCount': 19, 'dataElements': 'c0b22328-5d94-4898-8106-98f9991f40b6, c4160124-94f5-4179-a6a7-63f804b74304, f26b59fb-3eb7-4fe7-a816-c2eacd65e2e6, fa4a1853-1266-453b-b09c-00a41b31d721, 35fe0e04-bb8a-4cf2-9505-87eb7ed6fb2e, 3622bfe2-79da-4b18-b059-e0c2c7274cb2, 3aeb1b27-5a90-4a62-8f48-cf4d2a14a787, 6647457d-16e5-45d8-a717-44bed637a512, b58b8903-06e1-420a-9963-379c276bfcbc, cc29ff8f-8d91-464d-b017-347f60a0a8bf, 11969708-5884-4138-a33d-2a4f24b2c587, 43a22a73-b542-4acb-98a2-2c617ae05ae6, ac978442-0cd9-436b-8e17-8e5780faf1e8, 409d15d7-438b-4330-b9fb-2d0a040e4125, 7924f047-910b-4717-9568-0b4aa51b5ed8, 0ea44666-7854-48dc-bdc6-609aade6f29b, 100b0d8f-a4b1-45a2-9f5e-55e09eee2b8b, c5a0998a-26cc-4635-9f5f-799f7fe0980a, e2734419-35e7-4552-9833-d48346ab6372'}]}"
"{'title': 'Real Time Data Network (RTDN)', 'publisher': {'memberOf': 'HUB', 'name': 'DATA-CAN', 'contactPoint': 'datacan@uclpartners.com'}, 'contactPoint': 'datacan@uclpartners.com', 'keywords': ['cancer', 'COVID-19', 'coronavirus'], 'abstract': 'Near-real time aggregated cancer activity data from 8 major sites across the UK, for the purpose of testing the effect of the COVID-19 pandemic on cancer diagnostic and cancer treatment pathways.'}",616c4488-65a5-4608-a187-0c6bc78b359a,"{'followup': '6 - 12 MONTHS', 'typicalAgeRange': '0-150', 'pathway': 'Secondary care (plans to include primary and community care)', 'spatial': 'https://www.geonames.org/2635167/united-kingdom-of-great-britain-and-northern-ireland.html', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '960c4d6c-11dc-42c0-ab30-82606fd2974e', '1.0.0': '0ddcb454-2372-4180-9ba0-a7e1896d4fe2', 'latest': '0ddcb454-2372-4180-9ba0-a7e1896d4fe2'}","{'description': 'This data set has been designed to support the aim to improve NHS cancer patient outcomes by sharing real-time data about UK cancer services during the COVID-19 pandemic and afterwards.  This will be achieved by creating a network of UK-wide hospitals large and representative enough to allow national and local data analysis, enabling insights that are not possible from current national datasets.  All hospitals share an agreed minimum dataset at minimum quality on a weekly basis (Level 1) with the option to share deeper datasets if that fits their digital maturity, patient choice, information governance and organisational priorities (Level 2 and 3).  All data will be kept and shared under appropriate and agreed information governance and legal contracts, and via Trusted Research Environment(s).', 'associatedMedia': ['https://www.data-can.org.uk/'], 'isPartOf': 'NOT APPLICABLE'}",0ddcb454-2372-4180-9ba0-a7e1896d4fe2,https://web.www.healthdatagateway.org/dataset/0ddcb454-2372-4180-9ba0-a7e1896d4fe2,"{'formatAndStandards': {'format': ['text/csv', 'text/xml', 'application/vnd.ms-excel'], 'conformsTo': ['HL7 FHIR', 'NHS DATA DICTIONARY'], 'vocabularyEncodingScheme': ['OPCS4', 'SNOMED CT', 'NHS NATIONAL CODES', 'NHS SCOTLAND NATIONAL CODES', 'NHS WALES NATIONAL CODES', 'ICD10'], 'language': 'en'}, 'access': {'deliveryLeadTime': '1-2 MONTHS', 'accessRequestCost': 'Data access for NHS management and members of the network is free. DATA- CAN will deliver and share basic analyses and dashboards. Additional costs of further analysis and research will need external funding', 'jurisdiction': ['GB-ENG', 'GB-EAW', 'GB-NIR', 'GB-SCT', 'GB-WLS', 'GB-GBN'], 'dataProcessor': 'DATA-CAN', 'dataController': 'UCL Partners', 'accessRights': ['https://www.hdruk.ac.uk/access-to-health-data/', 'https://www.healthdatagateway.org/pages/latest-news#2648'], 'accessService': 'The Yorkshire and Humber Care Record (YHCR) solution – The Data Ark (Which fulfils the requirements of a Trusted Research Environment) has been developed by the YH health and social care partners with the intention of creating a joint\nelectronic Population Health Management (PHM) Solution. \n DATA-CAN has a collaboration arrangement with the YHCR to use this technology for RTDN.'}, 'usage': {'dataUseLimitation': 'GENERAL RESEARCH USE', 'dataUseRequirements': ['ETHICS APPROVAL REQUIRED', 'GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'USER SPECIFIC RESTRICTION'], 'resourceCreator': 'DATA-CAN', 'investigations': ['https://web.www.healthdatagateway.org/project/20344116608460584'], 'isReferencedBy': ['https://web.www.healthdatagateway.org/paper/6989907985837609', 'https://web.www.healthdatagateway.org/paper/603057306410067', 'https://web.www.healthdatagateway.org/paper/7154794549799597']}}","{'temporal': {'timeLag': 'LESS 1 WEEK', 'accrualPeriodicity': 'CONTINUOUS', 'startDate': '2020-06-01'}, 'origin': {'source': ['EPR', 'ELECTRONIC SURVEY', 'OTHER'], 'purpose': ['STUDY', 'AUDIT', 'ADMINISTRATIVE'], 'collectionSituation': ['PRIMARY CARE', 'OUTPATIENTS', 'IN-PATIENTS', 'COMMUNITY', 'HOME']}}",2021-01-04T17:29:56Z,"[{'observedNode': 'Persons', 'measuredValue': '10,000', 'disambiguatingDescription': 'People with a diagnosis of cancer, and people with presentation of symptoms relating to cancer (chief complaint in SNOMED CT)', 'observationDate': '2021-01-04', 'measuredProperty': 'count'}]",1.0.0,{'derivation': ['A mapping to HL7 FHIR resources is planned']},2021-02-17T17:06:43Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 46, 'structuralMetadata.columnName': 46, 'structuralMetadata.columnDescription': 46, 'structuralMetadata.dataType': 46, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'a3447294-fb47-48a6-ba6d-222502c0c14c', 'description': 'Real Time Data Network', 'name': 'RTDN', 'dataElementsCount': 46, 'dataElements': '8fe9d8cb-d25a-4cff-9db1-e834e47887fe, 7ba9eedd-229f-41ad-af67-6516e11524f0, b424db60-1d9c-4e42-bfff-b3bc92f6eb24, 72360026-f5ba-4700-99ef-d496a642f8de, 2544a80d-f0b3-477f-8712-8a615af55d3e, 7e4ecf1c-2dfd-4127-9769-ec4c95a981d0, df64a1bf-3a11-40bb-963e-3926a2066358, 2d00c44c-bbb0-42ea-84d2-6ebfacdff650, acb6a75b-5dfd-45d1-a922-439c0ff04219, 38c98653-37de-4fb4-b608-8d93a62b86af, bc6b390c-3fae-4702-a8d8-abf16ae70a2b, 7ac6f520-e7f8-4408-8c3a-626ca4ecc54d, 45ab71f2-30de-4059-a652-932517216126, 4f6f60c0-a9e2-4fa4-b5c9-60e444056633, bcbf8069-6d19-4419-a92a-85e48fed4f86, b1595082-cf77-41e7-abfa-17b6f1bfae15, 2d1d6e79-3db7-4a7e-b55d-4dd40695ed69, da4c9021-f4c1-4139-b6b0-4340c42163ef, ac644ebc-c3cb-4c70-9fe0-2342e6ee583d, ba52406a-6afe-4667-9b11-3a1d336903d3, a466d384-7a00-4fe3-b602-eaec0e2187f1, 71cd42a0-cbae-4032-ae8e-c6c72cc51136, aa193a7a-cc32-46c4-b6b5-b7f09668f99f, 7394cea5-0032-44d9-ad4c-59659e70035c, 944d785c-f3bc-4884-af0e-f82054d918fe, 0c26fe48-bb9f-4e8a-9a32-d390701d547e, 3d60df13-2d1d-4718-acf4-f92dd470d787, 80e434e8-b467-40a5-94fc-59675bf4ecad, 1fa59525-6e53-4bac-bca6-50ec2f7ba2d0, 17989daa-0e36-4ac6-a217-aa35e0d50176, 656427bd-542b-433a-8011-bf629385dc63, b0831f81-6011-47dc-9cf0-de7386d0e552, dc663eb7-9a47-43d9-9f46-0bcba99cd1f6, 701da139-8b17-45b7-a8f2-93cf6b5101e4, 8cf4617b-14e8-42db-85fe-9deff5c10d5b, 02194907-4ce5-465b-b4ec-35627936b848, f64e517f-f20e-4e2f-aefa-7c3088805b87, 3e288f4f-c355-4a54-be46-1169c47c6baf, 217e9b16-535a-4035-b506-ff7a2460f3bf, 2b5a4d6f-6e93-4579-9b3b-6d76bc00a465, 74be2a7c-d28c-4334-b6d1-9918d9e1ec76, 29c276f9-8180-43a4-b490-c2caf045e7d7, 40e4a3eb-12e1-4576-a91e-4f5134b2c8f8, d4d1513e-5efb-4948-92e7-21756c6fb937, e77148d7-d6fc-42f5-a22c-9ecd2ad15b05, 87d110a6-4320-44bc-a748-97dccb328d56'}]}"
"{'title': 'Cancer Registration Data', 'abstract': 'PHE supply cancer registration data to NHS Digital. For linkage with other NHS Digital data to provide notifications on cancer status, be available to support research studies and to identify potential research participants for clinical trials.', 'contactPoint': 'enquiries@nhsdigital.nhs.uk', 'publisher': {'name': 'NHS DIGITAL', 'contactPoint': 'enquiries@nhsdigital.nhs.uk', 'memberOf': 'ALLIANCE'}, 'keywords': ['Cancer Type', 'Cancer Behaviour', 'Cancer Anniversary', 'Cancer Site', 'Cancer Registration']}",2ed7bbbc-80db-46c2-a45b-632dda40794b,"{'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'OTHER', 'pathway': 'Cancer', 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '8bfbda65-a4bb-4683-ac43-05a2c134b30c', '3.0.0': '0e07413c-892c-4f06-bd22-2a917eb5c905', '1.0.0': 'bc30732b-32cb-4f66-8794-e6e6691c79e7', '0.0.1': '2a689ef7-95a6-49fb-b57e-cac9f924bc85', 'latest': '0e07413c-892c-4f06-bd22-2a917eb5c905'}","{'description': ""The National Cancer Registration and Analysis Service (NCRAS) at Public Health England supplies cancer registration data to NHS Digital. This data is available to be linked to other data held by NHS Digital in order to provide notifications on an individual's cancer status, be available to support research studies and to identify potential research participants for clinical trials.\n\nNCRAS is the population-based cancer registry for England. It collects, quality assures and analyses data on all people living in England who are diagnosed with malignant and pre-malignant neoplasms, with national coverage since 1971.\n\nThe Cancer Registration dataset comprises England data to the present day, and Welsh data up to April 2017.\n\nTimescales for dissemination of agreed data can be found under 'Our Service Levels' at the following link: https://digital.nhs.uk/services/data-access-request-service-dars/data-access-request-service-dars-process [Standard response]"", 'associatedMedia': ['https://www.cancerdata.nhs.uk', 'https://www.cancerresearchuk.org'], 'isPartOf': 'NOT APPLICABLE'}",0e07413c-892c-4f06-bd22-2a917eb5c905,https://web.www.healthdatagateway.org/dataset/0e07413c-892c-4f06-bd22-2a917eb5c905,"{'usage': {'resourceCreator': 'NHS Digital', 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE'], 'investigations': ['https://digital.nhs.uk/services/data-access-request-service-dars/register-of-approved-data-releases']}, 'access': {'dataController': 'NHS DIGITAL', 'deliveryLeadTime': 'OTHER', 'accessRights': ['https://digital.nhs.uk/services/data-access-request-service-dars'], 'accessRequestCost': 'https://digital.nhs.uk/services/data-access-request-service-dars/data-access-request-service-dars-charges', 'accessService': 'Once your DARS application has been approved, data will be made available by secure file transfer.\n\nhttps://digital.nhs.uk/services/transfer-data-securely', 'jurisdiction': 'GB-ENG'}, 'formatAndStandards': {'vocabularyEncodingScheme': ['ODS', 'ICD10', 'ICD9'], 'language': 'en', 'format': ['txt', 'csv'], 'conformsTo': 'LOCAL'}}","{'origin': {'source': 'OTHER', 'purpose': ['DISEASE REGISTRY', 'ADMINISTRATIVE', 'OTHER'], 'collectionSituation': ['CLINIC', 'PRIMARY CARE', 'IN-PATIENTS', 'COMMUNITY', 'PRIVATE', 'OTHER']}, 'temporal': {'startDate': '1971-01-01', 'accrualPeriodicity': 'CONTINUOUS', 'timeLag': '2-6 MONTHS'}}",2020-10-13T10:10:19Z,,3.0.0,"{'derivation': ['Data will be minimised as appropriate relative to the data access application'], 'qualifiedRelation': ['https://digital.nhs.uk/services/data-access-request-service-dars/register-of-approved-data-releases']}",2021-02-26T17:54:05Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 21, 'structuralMetadata.columnName': 21, 'structuralMetadata.columnDescription': 21, 'structuralMetadata.dataType': 21, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '0bbe7097-1f0b-4b99-8885-d8cf8a6f6665', 'description': 'Cancer Registrations', 'name': 'Cancer Registrations', 'dataElementsCount': 21, 'dataElements': '4408ecae-f2b3-4c16-90d5-e672ab4258b8, 6c7b8719-0b50-4a4c-9cda-226aa6e56231, ee3e3604-6ef1-4e7c-a79b-657f2aec9b34, 2e630e11-b122-4861-8530-b148ec9391c1, 826a8dba-d6a9-4a0f-89ee-044ad48a6c37, e38738ce-3b68-43ee-99c0-155926702cd1, a3cde658-1850-4068-9655-0c97c587b610, 7f806202-8bf1-4d64-af17-ee2181f5153e, 71a0d00b-15c6-4f5d-96ec-8b91207c9f64, b2de83f7-be40-4a59-9823-af0e87e352b7, b19642e4-7ace-46ec-9f93-d9d49a6333fe, 32a2dc7d-6e97-4096-8b91-8595631217ab, 47f942d9-4ed9-4ef0-b8ab-b34ab8a5ea77, f3b871a7-cb6d-409b-81e0-5f5b946c76d7, dc721f21-8130-4232-8ad5-d3606741b4c4, a9129192-9ef3-4790-8f7a-45fdd3c05e50, 39bd653a-e6a0-4110-858a-108e1edb9caf, cba858d1-6598-4936-9f59-fff92eca51b3, 47d8a4e2-d520-4828-bd54-24af53451581, a8568764-bff6-459a-9e20-3b42337caf2f, 7b99ba67-e7d0-418c-9b38-b8ca3b047885'}]}"
"{'title': 'Cancer and cerebrovascular events: frequency, cancer types and outcomes', 'publisher': {'memberOf': 'HUB', 'identifier': '607db9c5e1f9d3704d570d5f', 'name': 'PIONEER'}, 'contactPoint': 'PIONEER@UHB.NHS.UK', 'abstract': 'Cancer diagnoses before and after hospitalised cerebrovascular events.  A dataset of more than 16,000 stroke patients including granular ethnicity, multi-morbidity, serial physiology, blood biomarkers, intervention and outcome data.', 'keywords': ['Cerebrovascular event', 'ischaemic', 'Haemorrhage', 'atrial fibrillation', 'small vessel disease', 'computated tomography scan', 'Stroke', 'malignancy', 'Cancer', 'solid organ', 'haematological cancer', 'Retrospective case control study', 'incidence', ' clinical outcome', 'cardioembolic', 'Prescriptions', 'antiplatelet', 'anticoagulation', 'alteplase', 'physiology', 'acuity', 'Interventions', 'hospital length of stay', 'stroke unit', 'cancer-related stroke', 'Clinical Frailty Scale', 'Longitudinal']}",ae3fd121-141d-466b-b002-06c3959116d0,"{'spatial': ['https://www.geonames.org/2634343/west-midlands.html'], 'followup': '1 - 10 YEARS', 'typicalAgeRange': '18-110', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Data is representative of the multi-ethnicity population within the West Midlands (42% non white). Data includes all patients admitted during this timeframe, with National data Opt Outs applied, and therefore is representative of admissions to secondary care. Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '0e9e034a-913a-4764-8615-961c3647b268'},"{'description': 'Common causes of cerebrovascular events include arrhythmias such as atrial fibrillation,  damage to the small vessels of the brain termed ‘small vessel disease’, large vessel disease and haemorrhage. \n\nAnecdotally, clinicians have described an increased prevalence of newly diagnosed cancers in people presenting with cerebrovascular disease. However, there is limited information on how common cancer is associated with stroke, what types of cancers are most commonly diagnosed, and how this effects prognosis both in relation to the stroke and the cancer.  \n\nFurthermore, it is unclear how people with cancer-related strokes should be treated; including if standard treatments are still beneficial or whether a more tailored approach is required.  \n\nThis is a highly granular dataset of >16,000 patients with a confirmed cerebrovascular event including hospital presentation, serial physiology, every treatment prescribed and administered, and outcomes for the subsequent 12 months. It differentiates patients into those with a known or newly diagnosed malignancy and those without, and cancer types can be linked to pathology staining information, if needed.    \n\nPIONEER geography: The West Midlands (WM) has a population of 5.9 million and includes a diverse ethnic and socio-economic mix.  \n\nUHB is one of the largest NHS Trusts in England, providing direct acute services and specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary and secondary care record (Your Care Connected) and a patient portal “My Health”. \n\nScope: Investigating the relationship between cancer and stroke and whether a cancer related stroke is associated with a worse clinical outcome compared with patients with non-cancer related stroke. Longitudinal and individually linked, so that the preceding and subsequent health journey can be mapped and healthcare utilisation prior to and after admission understood. The dataset includes highly granular patient demographics, co-morbidities taken from ICD-10 and SNOMED-CT codes. Serial, structured data pertaining to process of care (timings and admissions), presenting complaint, procedures, physiology readings (blood pressure, respiratory rate, heart rate, oxygen saturations, swallow screening), Lab analysis results (blood sodium level, estimated Glomerular filtration rate (GFR), urea, albumin, cholesterol, full blood counts and others), drug administered and all outcomes.\n\nAvailable supplementary data: Matched controls; ambulance, OMOP data, synthetic data.\n\nAvailable supplementary support: Analytics, Model build, validation and refinement; A.I.; Data partner support for ETL (extract, transform and load) process, Clinical expertise, Patient and end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.', 'isPartOf': 'NOT APPLICABLE'}",0e9e034a-913a-4764-8615-961c3647b268,https://web.www.healthdatagateway.org/dataset/0e9e034a-913a-4764-8615-961c3647b268,"{'access': {'deliveryLeadTime': '1-2 MONTHS', 'jurisdiction': ['GB-ENG'], 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'dataProcessor': 'NOT APPLICABLE', 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/']}, 'formatAndStandards': {'format': ['SQL'], 'language': ['en'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['SNOMED CT', 'OPCS4', 'ICD10']}, 'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)']}}","{'temporal': {'timeLag': 'OTHER', 'endDate': '2021-07-31', 'accrualPeriodicity': 'QUARTERLY', 'distributionReleaseDate': '2021-12-20', 'startDate': '2004-10-29'}, 'origin': {'collectionSituation': ['ACCIDENT AND EMERGENCY', 'IN-PATIENTS', 'OUTPATIENTS'], 'purpose': ['CARE'], 'source': ['EPR']}}",2022-02-02T12:48:47Z,"[{'measuredProperty': 'Count', 'observedNode': 'EVENTS', 'measuredValue': '15908', 'disambiguatingDescription': '15,908 cancer related stroke admissions between 29/10/2004 and 31/07/2021', 'observationDate': '20/12/2021'}]",1.0.0,{'derivation': ['Not Available']},2022-02-02T12:48:47Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 8, 'structuralMetadata.tableName': 8, 'structuralMetadata.tableDescription': 8, 'structuralMetadata.dataElementsCount': 262, 'structuralMetadata.columnName': 262, 'structuralMetadata.columnDescription': 262, 'structuralMetadata.dataType': 262, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'b66d2b82-6b6b-4954-9603-ec2d0627b316', 'description': 'Diagnosis detail for each spell', 'name': 'PDR43Diagnosis', 'dataElementsCount': 10, 'dataElements': '9a17443d-450d-4600-809d-095c5943b861, 17b080ce-3bff-4851-b0db-55aae7e64938, e0c2da0b-0c01-4f63-9d1b-5a747c4634ee, 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"{'title': 'National Cardiac Audit Programme -  Congenital Heart Disease Audit (NCHDA)', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'HQIP', 'identifier': '607db9c4e1f9d3704d570d23'}, 'contactPoint': 'DataSharing@hqip.org.uk', 'abstract': 'Continuous record-level data from all centres for paediatric & congenital cardiac surgery /interventional procedures/electrophysiology in the UK and Republic of Ireland. Includes mortality, post-precedural complications, & antenatal diagnostic screening.', 'keywords': ['Cardiac', 'Paediatric', 'Congenital', 'Heart', 'Disease', 'NCAP', 'Audit']}",2b640175-725a-465f-9aec-6794e6d27791,"{'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'The NICOR datasets focus primarily on secondary care and therfore do not cover the whole patient pathway. The audit data may be linked with other primary cars datasets e.g, General Practice Extraction Services (GPES) to give a better undestanding of care pathways and how disease and treatments are manged over time.', 'followup': 'UNKNOWN', 'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '0f1a2789-e8b3-4e36-9622-65d76cebff26'},"{'description': 'The National Congenital Heart Disease Audit (NCHDA) dataset includes continuously ascertained record-level data from all centres undertaking paediatric and congenital cardiac surgery and interventional procedures, including electrophysiology, in the United Kingdom and Republic of Ireland (RoI). The dataset includes activity and outcomes including mortality and post-procedural complications, as well as information relating to antenatal diagnostic screening.', 'associatedMedia': ['https://www.hqip.org.uk/a-z-of-nca/national-cardiac-audit-programme-ncap/#.YKPMaqhKiUk'], 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",0f1a2789-e8b3-4e36-9622-65d76cebff26,https://web.www.healthdatagateway.org/dataset/0f1a2789-e8b3-4e36-9622-65d76cebff26,"{'access': {'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England', 'accessRights': ['https://www.nicor.org.uk/for-researchers/data-sharing-application-process/', 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'jurisdiction': ['GB-EAW'], 'dataProcessor': 'Barts Health NHS Trust, host of the National Institute for Cardiovascular Outcomes Research (NICOR)', 'deliveryLeadTime': 'VARIABLE', 'accessRequestCost': ['https://www.nicor.org.uk/for-researchers/data-sharing-application-process/', 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['OTHER'], 'conformsTo': ['OTHER'], 'language': ['en'], 'format': ['Excel']}, 'usage': {'dataUseLimitation': ['NO RESTRICTION'], 'resourceCreator': ['Data has been provided by the Healthcare Quality Improvement Partnership from the National Cardiac Audit Programme'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE']}}","{'temporal': {'timeLag': 'VARIABLE', 'accrualPeriodicity': 'DAILY', 'startDate': '2013-01-01'}, 'origin': {'source': ['ELECTRONIC SURVEY', 'OTHER'], 'purpose': ['AUDIT'], 'collectionSituation': ['IN-PATIENTS']}}",2021-11-29T21:30:43Z,"[{'observedNode': 'EVENTS', 'measuredValue': 12064, 'disambiguatingDescription': 'Number of procedures reported in the dataset in 2018/19', 'observationDate': '01/01/2020', 'measuredProperty': 'Count'}]",4.0.0,"{'derivation': ['Not available'], 'qualifiedRelation': ['Data Linked with that from other custodians may be available, but the release of linked data will be subject to the separate permission of all relevant data controllers.']}",2021-11-29T21:30:43Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'UKALL14 Trial', 'contactPoint': 'ctc.ukall14@ucl.ac.uk', 'abstract': 'Collection of samples and data across the following diseases: Leukaemia, disease', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY', 'contactPoint': 'ctc.ukall14@ucl.ac.uk'}, 'keywords': ['Trial', 'UKALL14', 'UKCRC Tissue Directory', 'Leukaemia', 'disease'], 'doiName': 'Not Available'}",b5533cb5-0c59-495b-9b11-3c401daeb958,"{'typicalAgeRange': '15-150', 'spatial': 'England', 'physicalSampleAvailability': ['PLASMA']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'f6ee4fd6-a0a8-407e-a530-04dbbaa432ad', '3.0.0': '0faa4c3e-edf5-4ae8-9b26-c59c98e26b57', '1.0.0': 'bd76fe11-1235-48f2-b5ce-3f9ba3ec0f4d', '2.0.0': '843062c0-fca0-464f-aa9c-0d4908f40513', 'latest': '0faa4c3e-edf5-4ae8-9b26-c59c98e26b57'}","{'description': 'A randomized trial for adults with newly diagnosed acute lymphoblastic leukaemia.\nMultisite, randomised controlled trial, recruiting 811 patients over 7.5 years.\nSamples will be collected throughout the trial and sent to the central lab (Adult ALL MRD Lab @ UCL CI) as follows; \n- bone marrow samples taken at diagnosis, at recover post phase 1 and phase 2, post transplant (for those patients who proceed with a non-myeloablative transplant) and at relapse.\n- peripheral blood sample taken during phase 1 on days 4 & 18 (in patients 40 and under) and on D18 & 32 in patients 41 or over), and during intensification. \nAdditionally for those patients who proceed for a non-myeloablative transplant peripheral blood will be sent to the local chimerism labs and a copy of the report will be sent to UCL CTC.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",0faa4c3e-edf5-4ae8-9b26-c59c98e26b57,https://web.www.healthdatagateway.org/dataset/0faa4c3e-edf5-4ae8-9b26-c59c98e26b57,"{'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}, 'access': {'dataProcessor': 'Not Applicable', 'dataController': 'University Colleage London', 'accessRequestCost': 'Not specified', 'jurisdiction': 'GB-ENG', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED'}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2011-01-01'}}",2020-01-13T17:14:19Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:16:30Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
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Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.']}, 'formatAndStandards': {'language': ['en'], 'format': ['SQL database table'], 'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL']}}","{'origin': {'source': ['EPR', 'OTHER'], 'purpose': ['DISEASE REGISTRY', 'CARE', 'AUDIT'], 'collectionSituation': ['OTHER']}, 'temporal': {'endDate': '2021-08-02', 'startDate': '2021-06-01', 'accrualPeriodicity': 'DAILY', 'timeLag': '2-6 MONTHS'}}",2021-09-13T14:25:35Z,"[{'observedNode': 'EVENTS', 'measuredValue': '3000000', 'observationDate': '01/09/2021', 'measuredProperty': 'Count', 'disambiguatingDescription': 'Approx 70-80% coverage of Welsh population through GP registrations.'}]",5.0.0,"{'qualifiedRelation': ['Yes. 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"{'title': 'Antimicrobial prescribing surveillance data during the COVID-19 pandemic', 'keywords': ['SARS-CoV-2', 'Antibiotic stewardship', 'antibiotic prescribing', 'COVID-19', 'Bacterial Infection', 'Pneumonia', 'Antimicrobial stewardship', 'comorbidity', 'decovid', 'Emergency admissions', 'bacteraemia', 'antibiotic therapy'], 'publisher': {'memberOf': 'HUB', 'identifier': '607db9c5e1f9d3704d570d5f', 'name': 'PIONEER'}, 'abstract': 'Deeply phenotyped population-level surveillance of therapeutic or preventative antimicrobial interventions of hospitalised COVID-19 patients; including comorbidity data; physiology, blood biomarkers, and outcomes. Longitudinal and individually linked.', 'contactPoint': 'PIONEER@UHB.NHS.UK'}",a95beeb8-9316-442c-8699-22fc4b2170e5,"{'pathway': 'Data is representative of the multi-ethnicity population within the West Midlands (42% non white). Data includes all patients admitted during this timeframe, with National data Opt Outs applied, and therefore is representative of admissions to secondary care. Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.', 'followup': 'OTHER', 'typicalAgeRange': '15-110', 'spatial': ['United Kingdom,England,West Midlands'], 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'ea5022f9-38f0-4c17-8577-b086ed5c4d8b', '2.0.0': '10bd5205-5d7d-4d77-baef-4a6237ce7c75', 'latest': '10bd5205-5d7d-4d77-baef-4a6237ce7c75'}","{'description': 'The use of antimicrobial drugs is linked to antimicrobial resistance which can lead to infections that are harder to treat and may be associated with worse outcomes for the patient.  \n\nThe use of antibiotics changed in hospital during the different waves of the COVID-19 pandemic, as data was used to assess if antibiotic therapy was associated with better health outcomes for patients with confirmed COVID-19. Looking at changes in health outcomes linked to antibiotic therapy across the whole hospital instead of only patients with COVID-19 over time will help understand if changes to antibiotic use during the pandemic may have had an impact on the risk of antibiotic resistance. \n\nPIONEER geography The West Midlands (WM) has a population of 5.9 million and includes a diverse ethnic and socio-economic mix.  \n\nEHR: UHB is one of the largest NHS Trusts in England, providing direct acute services and specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds and an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary and secondary care record (Your Care Connected) and a patient portal “My Health”. \n\nScope:  Longitudinal and individually linked, so that the preceding and subsequent health journey can be mapped and healthcare utilisation prior to and after admission understood. The dataset includes highly granular patient demographics, co-morbidities taken from ICD-10 and SNOMED-CT codes. Serial, structured data pertaining to process of care (timings, wards and admissions), surgery procedures, microbiology reports, COVID results, prescriptions, drug administered and all outcomes. \n\nAvailable supplementary data: Matched controls; ambulance, OMOP data, synthetic data. \n\nAvailable supplementary support: Analytics, Model build, validation and refinement; A.I.; Data partner support for ETL (extract, transform and load) process, Clinical expertise, Patient and end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.'}",10bd5205-5d7d-4d77-baef-4a6237ce7c75,https://web.www.healthdatagateway.org/dataset/10bd5205-5d7d-4d77-baef-4a6237ce7c75,"{'formatAndStandards': {'vocabularyEncodingScheme': ['ICD10', 'OPCS4', 'LOCAL', 'NHS NATIONAL CODES'], 'format': ['SQL'], 'conformsTo': ['LOCAL'], 'language': ['en']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS']}, 'access': {'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/'], 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'deliveryLeadTime': '1-2 MONTHS', 'dataProcessor': 'NOT APPLICABLE', 'jurisdiction': ['GB-ENG']}}","{'origin': {'purpose': ['CARE'], 'collectionSituation': ['ACCIDENT AND EMERGENCY', 'IN-PATIENTS'], 'source': ['EPR']}, 'temporal': {'distributionReleaseDate': '2022-01-20', 'startDate': '2008-12-01', 'accrualPeriodicity': 'QUARTERLY', 'endDate': '2021-07-03', 'timeLag': 'OTHER'}}",2022-03-15T13:14:51Z,"[{'measuredProperty': 'Count', 'observedNode': 'EVENTS', 'measuredValue': '1602184', 'disambiguatingDescription': '1,602,184 spells between 01.12.2008 and 03.07.2021', 'observationDate': '20/01/2022'}]",2.0.0,{'derivation': ['Not Available']},2022-05-24T15:47:56Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 11, 'structuralMetadata.tableName': 11, 'structuralMetadata.tableDescription': 11, 'structuralMetadata.dataElementsCount': 258, 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"{'title': 'Bangladesh Asthma Hajj Study', 'contactPoint': 'RESPIRE@ed.ac.uk', 'abstract': 'The project will collect and record routine anonymized data from central hajj office of Ministry of Religious Affairs and Bangladesh Hajj Management Portal. Data variables include gender and age of Hajj pilgrims, completed pre-Hajj medical check-ups.', 'publisher': {'memberOf': 'HUB', 'identifier': '607db9c2e1f9d3704d570ce6', 'name': 'BREATHE'}, 'keywords': ['RESPIRE', 'Bangladesh', 'ASTHMA', 'Pilgrims', 'HAJJ']}",27e1ffc7-5804-40e2-83e2-93f570906127,{'typicalAgeRange': '18-150'},"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'c90c4912-b9db-40a6-a744-12d741097b4d', '2.0.0': '112db000-f69f-47a4-8dd7-db7b6d839e68', 'latest': '112db000-f69f-47a4-8dd7-db7b6d839e68'}","{'description': 'This study will identify the gaps in the existing pre-Hajj medical check-up services to address the risk of asthma among Hajj pilgrims, will explore perceptions of medical staff and Hajj service managers, who are involved in pre-Hajj medical check-ups and management, about the risk posed by asthma to the health of Hajj pilgrims, and the potential acceptability of an intervention to guide recommended care (including self-management) and identify the opportunities and barriers in integrating that intervention within the existing pre-Hajj medical check-up system.\n\nFor more information please see: https://www.ed.ac.uk/usher/respire/chronic-respiratory-disorders/the-bangladesh-asthma-hajj-study', 'isPartOf': 'BREATHE'}",112db000-f69f-47a4-8dd7-db7b6d839e68,https://web.www.healthdatagateway.org/dataset/112db000-f69f-47a4-8dd7-db7b6d839e68,"{'usage': {'isReferencedBy': ['NOT APPLICABLE'], 'dataUseRequirements': ['COLLABORATION REQUIRED', 'ETHICS APPROVAL REQUIRED', 'PUBLICATION REQUIRED', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'investigations': [''], 'dataUseLimitation': ['RESEARCH USE ONLY'], 'resourceCreator': ['RESPIRE Collaboration']}, 'formatAndStandards': {'language': ['en'], 'format': ['text'], 'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL']}, 'access': {'jurisdiction': ['BD'], 'dataController': 'RESPIRE', 'accessRights': ['https://www.ed.ac.uk/usher/respire/contact-us']}}","{'temporal': {'startDate': '2020-10-01', 'endDate': '2021-06-30', 'timeLag': 'NOT APPLICABLE', 'accrualPeriodicity': 'STATIC'}, 'origin': {'purpose': ['STUDY'], 'collectionSituation': ['COMMUNITY'], 'source': ['ELECTRONIC SURVEY']}}",2021-08-09T12:36:05Z,"[{'observedNode': 'PERSONS', 'measuredValue': '1', 'observationDate': '30/06/2021', 'measuredProperty': 'Count'}]",2.0.0,,2021-10-19T15:39:09Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'UK SARS-CoV-2 viral sequencing data (COG-UK) - Lineage/Variant Data - NI', 'publisher': {'identifier': '5f89662f7150a1b050be0710', 'name': 'HEALTH AND SOCIAL CARE NORTHERN IRELAND', 'memberOf': 'ALLIANCE'}, 'keywords': ['spike', 'pangolin', 'lineage', 'NCS', 'National Core Study'], 'abstract': 'Summary of SARS-CoV-2 lineages and mutations', 'contactPoint': 'hbs@hscni.net'}",3d2d9c5e-6111-4583-a6db-07affd628f1e,"{'followup': 'OTHER', 'pathway': 'Relates to virus sequencing for COVID-19 only', 'spatial': 'https://www.geonames.org/2641364/northern-ireland.html', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '3f3a43c8-41e1-4649-8864-869eb1dfaf81', '2.0.0': '115109e7-9a35-420f-831e-0707bc96375c', 'latest': '115109e7-9a35-420f-831e-0707bc96375c'}","{'description': 'File contains basic public metadata, including sequence_name, location, date, pangolin lineage assignment, version and associated scores, scorpio VOC/VUI constellation call and associated scores, key spike protein mutations calls, and a list of all nucleotide mutations found.', 'isPartOf': 'COG UK TRE'}",115109e7-9a35-420f-831e-0707bc96375c,https://web.www.healthdatagateway.org/dataset/115109e7-9a35-420f-831e-0707bc96375c,"{'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'vocabularyEncodingScheme': ['NHS NATIONAL CODES'], 'format': ['csv']}, 'usage': {'resourceCreator': ['ACKNOWLEDGEMENT  The authors would like to acknowledge the help provided by the staff of the Honest Broker Service (HBS) within the Business Services Organisation Northern Ireland (BSO). The HBS is funded by the BSO and the Department of Health (DoH). The authors alone are responsible for the interpretation of the data and any views or opinions presented are solely those of the author and do not necessarily represent those of the BSO.'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['RESEARCH USE ONLY']}, 'access': {'dataController': 'Public Health Agency (PHA) NI', 'dataProcessor': 'HSC Honest Broker Service', 'deliveryLeadTime': '1-2 MONTHS', 'accessRights': ['http://www.hscbusiness.hscni.net/services/2454.htm'], 'accessService': 'Remote access can now be granted via an HSCNI tenancy of the UK Secure e-Research Platform (UK SeRP), the HBS still offer the physical safe setting in Belfast for local research.', 'accessRequestCost': ['http://www.hscbusiness.hscni.net/pdf/Researcher%20Pack.zip'], 'jurisdiction': ['GB-NIR']}}","{'temporal': {'timeLag': '1-2 WEEKS', 'endDate': '2021-08-09', 'accrualPeriodicity': 'OTHER', 'startDate': '2020-03-10'}, 'origin': {'purpose': ['STUDY'], 'collectionSituation': ['OTHER'], 'source': ['LIMS']}}",2021-08-25T11:03:03Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '20026', 'observationDate': '17/08/2021', 'measuredProperty': 'Count', 'disambiguatingDescription': 'Number of results in the most recent database of sequencing results'}]",2.0.0,,2021-09-24T10:16:31Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 7, 'structuralMetadata.columnName': 7, 'structuralMetadata.columnDescription': 7, 'structuralMetadata.dataType': 7, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '4d56313d-eaf3-45f4-81fa-35618dd1af97', 'description': 'Sample identifiers', 'name': 'COG-UK (NI)', 'dataElementsCount': 7, 'dataElements': '2205b6f1-43ca-42dc-8a74-e9856414fdd2, 97e1575d-713f-4e4f-bceb-e42c2d370c04, 537ff721-671c-4801-afaf-e49898d1ee74, 1c45a20f-5ea2-4f81-9736-4c1d5ba33d9b, e9867eb3-b096-4275-be8c-b462d8c28be2, cc020290-8e21-4e60-a554-d65bb89829a5, d2d6ac21-4193-4bdd-9b30-dc44d3dc308b'}]}"
"{'title': 'National Maternity and Perinatal Audit Organisational Survey 2019', 'publisher': {'memberOf': 'ALLIANCE', 'contactPoint': 'DataSharing@hqip.org.uk', 'name': 'HQIP'}, 'contactPoint': 'DataSharing@hqip.org.uk', 'keywords': ['Hospital', 'Maternity', 'Perinatal', 'Organisational', 'Survey', 'NMPA', 'Audit'], 'abstract': 'The NMPA organisational survey provides an overview of care provision by NHS maternity services in all settings across England, Scotland and Wales as a snapshot of care in January 2019.'}",01ad25ed-8cde-43d7-bc77-d8cc3d165df4,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'deef3dd8-e8a3-4946-b850-d14fa1aa173e', '3.0.0': '1199f5b5-99f0-4aae-9769-ab754f05dcdb', '1.0.0': '9b00be9f-809a-41ff-a768-5371b0afbc38', '2.0.0': '600be397-211b-4f65-9f82-e85f4393fb8a', 'latest': '1199f5b5-99f0-4aae-9769-ab754f05dcdb'}","{'description': 'The National Maternity and Perinatal Audit (NMPA) organisational survey provides an overview of care provision by NHS maternity services in all settings across England, Scotland and Wales as a snapshot of care in January 2019, and reflect the changes which are being implemented as a result of the maternity and neonatal services reviews and other initiatives.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",1199f5b5-99f0-4aae-9769-ab754f05dcdb,https://web.www.healthdatagateway.org/dataset/1199f5b5-99f0-4aae-9769-ab754f05dcdb,"{'access': {'jurisdiction': 'GB-GBN', 'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data', 'deliveryLeadTime': 'OTHER'}, 'formatAndStandards': {'language': ['en']}}",,2020-01-13T14:09:44Z,,3.0.0,,2021-04-14T08:10:52Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': ""2019 UK Parkinson's Audit - Occupational therapy"", 'contactPoint': 'audit@parkinsons.org.uk', 'publisher': {'identifier': '60a630c77dd392a16e228a92', 'name': 'PARKINSONS UK', 'memberOf': 'ALLIANCE'}, 'abstract': ""The dataset contains data provided by occupational therapy services on the configuration of their service (service audit) and the care provided to individual patients in connection with their Parkinson's (patient audit)."", 'keywords': ['occupational therapist', 'rehabilitation', 'reablement']}",9890eee9-44d4-49f7-8674-16c05a5f82e0,"{'followup': '6 - 12 MONTHS', 'spatial': ['https://www.geonames.org/countries/GB/united-kingdom.html'], 'typicalAgeRange': '31-99', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Single specialty - occupational therapy services in secondary care and community services'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '125202ff-1d00-4f8e-96e1-1d5a310ab326'},"{'description': ""The UK Parkinson’s Audit assesses care provided to people with Parkinson's by a range of clinical specialties against evidence-based guidelines.\n\nThe occupational therapy audit includes services providing care to people specifically in connection with their Parkinson’s. Services submit data on their model of service delivery and the assessments which are routinely carried out (service audit) and data on the care provided over the last 12 months to at least ten of their consecutive patients seen during the five-month data collection period (patient audit). No patient identifiers are collected. \n\nThe audit is open to services across the UK - secondary care (non-acute) and community services. A service is self-defined - for example an individual therapist or a group of therapists seeing the same cohort of patients. There can therefore be more than one service taking part in any Trust or setting.\n\nThe 2019 audit includes data from 82 occupational therapy services covering 958 patient cases.\n\nThe data is available by UK Parkinson’s Excellence Network region. The UK Parkinson's Excellence Network is a network of health and social care professionals working to improve Parkinson's services administered with support from Parkinson’s UK. 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"{'title': 'Lighthouse', 'keywords': ['Lighthouse', 'Covid-19', 'TESTING', 'HIC', 'SCOTLAND'], 'publisher': {'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE', 'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d1f'}, 'contactPoint': 'hicsupport@dundee.ac.uk', 'abstract': 'Lighthouse laboratories [high-throughput facilities dedicated to COVID-19]'}",62903826-acfc-4d60-9010-cd70b4f556c1,"{'followup': 'UNKNOWN', 'pathway': 'Secondary care records for Tayside and Fife', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['United Kingdom,Scotland']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '126b50ad-d0c8-4c75-a477-69420d4601b4'},"{'description': 'ECOSS is a database that holds surveillance data on various microorganisms (e.g. influenza virus, coronavirus) and infections reported from NHS diagnostic and reference laboratories and Pillar 2 facilities/Lighthouse laboratories [high-throughput facilities dedicated to COVID-19 viral Reverse Transcription-Polymerase Chain Reaction (RT-PCR) testing for the National Testing Programme]. Data on laboratory results for all SARS-CoV-2 RT-PCR tests carried out in Scotland are being collated by ECOSS and can be linked to other data sources', 'isPartOf': 'University of Dundee Health Informatics Centre'}",126b50ad-d0c8-4c75-a477-69420d4601b4,https://web.www.healthdatagateway.org/dataset/126b50ad-d0c8-4c75-a477-69420d4601b4,"{'usage': {'resourceCreator': ['NHS Scotland'], 'dataUseRequirements': ['DISCLOSURE CONTROL'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}, 'formatAndStandards': {'format': ['Database'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en']}, 'access': {'jurisdiction': ['GB-SCT'], 'accessService': 'HIC has implemented a remote-access Trusted Research Environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details are available via the following link:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/', 'accessRequestCost': ['Quotation available on request'], 'deliveryLeadTime': '2-4 WEEKS', 'dataController': 'Local NHS boards', 'accessRights': ['https://www.dundee.ac.uk/hic/governanceservice/'], 'dataProcessor': 'University of Dundee, Health Informatics Centre'}}","{'origin': {'source': ['OTHER INFORMATION SYSTEM'], 'collectionSituation': ['OTHER'], 'purpose': ['DISEASE REGISTRY']}, 'temporal': {'timeLag': 'NOT APPLICABLE', 'distributionReleaseDate': '2022-05-19', 'startDate': '2019-01-18', 'endDate': '2021-09-10', 'accrualPeriodicity': 'STATIC'}}",2022-05-31T13:15:58Z,"[{'observedNode': 'PERSONS', 'measuredValue': '110088', 'disambiguatingDescription': '11,008 persons in this dataset\n', 'observationDate': '19/05/2022', 'measuredProperty': 'COUNT'}, {'observedNode': 'EVENTS', 'measuredValue': '112229', 'disambiguatingDescription': '112,229 events in this dataset\n', 'observationDate': '19/05/2022', 'measuredProperty': 'count'}]",1.0.0,,2022-05-31T13:15:58Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 210, 'structuralMetadata.columnName': 210, 'structuralMetadata.columnDescription': 210, 'structuralMetadata.dataType': 210, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'e5b99ab0-5ce3-498d-81cf-f0cd26c62654', 'description': 'The view contains all Pillar 1, 2 & 3 test results along with the Antigen test results at moment.   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"{'title': 'NIHR IBD BioResource: SNP imputation data', 'publisher': {'name': 'GUT REACTION', 'identifier': '607db9c3e1f9d3704d570d0a', 'memberOf': 'HUB'}, 'contactPoint': 'nbr@bioresource.nihr.ac.uk', 'keywords': ['IBD', ""Crohn's"", 'colitis', 'recall', 'SNP', 'Imputation'], 'abstract': 'SNP chip data can be used to impute many of the (non-rare) SNPs not included on the chips.  The NIHR IBD BioResource is using a modified version of the UK Biobank protocol to improve the options for recall.'}",7dee2bd6-733a-4b2e-a942-7f9eaf8ebbc2,"{'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM'], 'typicalAgeRange': '18-85', 'spatial': ['https://www.geonames.org/2635167/united-kingdom.html'], 'followup': '1 - 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '12d62b02-2167-407d-acdb-6ddb9d251d36'},"{'description': 'The NIHR IBD Bioresource comprises ~34k participants with Inflammatory Bowel Disease (IBD). SNP chip data can be used to impute many of the (non-rare) SNPs not included on the chips.  The NIHR BioResource is using a modified version of the UK Biobank protocol to improve the options for recall.', 'associatedMedia': ['https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction-data-sources', 'https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction/', 'https://bioresource.nihr.ac.uk/media/1o3c4m42/axiom_ukbbv2_1-na36-r3-a4-annot-csv.zip', 'http://biobank.ctsu.ox.ac.uk/crystal/crystal/docs/impute_ukb_v1.pdf'], 'isPartOf': 'Not Applicable'}",12d62b02-2167-407d-acdb-6ddb9d251d36,https://web.www.healthdatagateway.org/dataset/12d62b02-2167-407d-acdb-6ddb9d251d36,"{'usage': {'isReferencedBy': ['Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/'], 'dataUseLimitation': ['RESEARCH USE ONLY'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'resourceCreator': ['NIHR BioResource. Acknowledgement text: ""We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.""']}, 'access': {'deliveryLeadTime': '2-6 MONTHS', 'accessRequestCost': ['https://bioresource.nihr.ac.uk/using-our-bioresource/industry-researchers/industry-bioresource-usage-costs/'], 'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)', 'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)', 'accessService': ""Some de-identified data may be released to researchers in a platform-independent filetype (e.g. CSV). However, access to any data acquired via NHS Digital is subject to strict restrictions governing where data may be accessed and from which locale - access in a Trustworthy Research Environment (TRE) at AIMES secure data centre (https://aimes.uk/).  It is also intended that SNP data be available from the European Genome-Phenome Archive (EBI's EGA) via managed access."", 'jurisdiction': ['GB-GB'], 'accessRights': ['https://bioresource.nihr.ac.uk/using-our-bioresource']}, 'formatAndStandards': {'language': ['en'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL'], 'format': ['text/plink', 'text/vcf']}}","{'temporal': {'distributionReleaseDate': '2021-03-31', 'accrualPeriodicity': 'QUARTERLY', 'startDate': '2016-01-13', 'timeLag': '2-6 MONTHS'}, 'origin': {'purpose': ['STUDY'], 'source': ['MACHINE GENERATED'], 'collectionSituation': ['OTHER']}}",2021-09-09T17:16:32Z,"[{'observedNode': 'EVENTS', 'measuredValue': '11787', 'disambiguatingDescription': 'SNP genotyping array chips processed and imputation performed.', 'observationDate': '01/09/2021', 'measuredProperty': 'COUNT'}]",1.0.0,"{'qualifiedRelation': ['ALL', 'COVID-19 SARI-Watch (formerly CHESS)', 'Civil Registration - Deaths', 'Covid-19 Second Generation Surveillance System', 'Emergency Care Data Set (ECDS)', 'Hospital Episode Statistics Accident and Emergency', 'Hospital Episode Statistics Admitted Patient Care', 'Hospital Episode Statistics Critical Care', 'Hospital Episode Statistics Outpatients', 'Intensive Care National Audit & Research Centre (ICNARC) Case Mix Programme (https://www.icnarc.org/Our-Audit/Audits/Cmp/About)'], 'derivation': ['Not Available']}",2021-09-09T17:16:32Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': ""UK primary Sjogren's syndrome Registry"", 'publisher': {'name': 'TISSUE DIRECTORY', 'contactPoint': 'Wan-Fai.Ng@ncl.ac.uk', 'memberOf': 'ALLIANCE'}, 'keywords': [""Primary Sjogren's syndrome"", 'Blood samples', 'serum', ""Sjogren's syndrome (disorder)"", 'UKCRC Tissue Directory', 'RNA', 'DNA', 'UK', 'Registry', 'PBMC'], 'contactPoint': 'Wan-Fai.Ng@ncl.ac.uk', 'abstract': ""Collection of samples and data across the following diseases: Sjogren's syndrome (disorder)"", 'doiName': 'Not Available'}",38fe1a10-ebf9-4dc1-8c35-2e7b33b1f6b5,"{'typicalAgeRange': 'Not Known', 'spatial': 'England', 'physicalSampleAvailability': ['IN PROGRESS']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '6723c609-dd71-4411-adf2-642ee85bd8fa', '3.0.0': '12dba445-dfa9-46af-abc0-5bd3701061a7', '1.0.0': 'a021e457-6a09-44bf-9614-383e7c47d8c4', '2.0.0': 'a6fb087d-1a90-4db0-9fcf-323c5b3cce51', 'latest': '12dba445-dfa9-46af-abc0-5bd3701061a7'}","{'description': ""Peripheral blood samples (DNA, RNA, serum, PBMC) from patients with primary Sjogren's syndrome, with detailed contemporaneous clinical data at the time of sample collection."", 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",12dba445-dfa9-46af-abc0-5bd3701061a7,https://web.www.healthdatagateway.org/dataset/12dba445-dfa9-46af-abc0-5bd3701061a7,"{'access': {'dataController': 'Newcastle University', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'accessRequestCost': 'Not specified', 'jurisdiction': 'GB-ENG', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'dataProcessor': 'Not Applicable'}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2009-01-01'}}",2020-01-13T17:14:18Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T16:16:27Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Cataract surgery and visual outcomes at QE Hospital, Birmingham, UK', 'abstract': 'Cataract surgery and outcome data for those identified by having cataract surgery at Queen Elizabeth Hospital, Birmingham. Key data included are demographics, visual data, surgery details and outcomes.', 'contactPoint': 'enquiries@insight.hdrhub.org', 'keywords': ['Anaesthesia', 'anaesthetic', 'Aphakic', 'Astigmatism', 'Axis', 'Best corrected', 'Cataracts', 'Cylinder', 'Cystoid macular oedema', 'Degrees', 'Diabetes', 'Dioptres', 'Discharge', 'Endophthalmitis', 'Intraocular lens', 'Intraocular Pressure', 'IOL', 'IOL implant', 'LASER', 'Lens', 'Meridian', 'Monofocal', 'Ocular', 'Operation', 'Ophthalmology', 'Outcome', 'Peribulbar', 'Phacoemulsification', 'Phakic', 'Pinhole', 'Posterior capsular rupture', 'Postoperative', 'Preoperative', 'Presbyopia', 'Refraction', 'Retinal detachment', 'Sphere', 'Subtenons', 'Surgeon', 'Surgery', 'Tear', 'Topical', 'Toric', 'Vision', 'Visual Acuity'], 'publisher': {'memberOf': 'HUB', 'name': 'INSIGHT', 'identifier': '5f8437a3b7dec2a83e8cceba'}}",4352ef1c-67d7-4f2e-b256-1efaac61dacd,"{'pathway': 'Scope: All people undergoing cataract surgery from Dec 2004 onwards. Secondary care hospital visual outcome data including \n• Demographic information (including age, sex and ethnicity)\n• Preoperative Visual acuity\n• Biometry details (including axial length and keratometry values)\n• Surgery details\n• Post-operative outcomes (including complications)', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2634343/west-midlands.html'], 'typicalAgeRange': '17-101', 'followup': '> 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '131ccbe5-28dc-4abf-8a44-05f470d1be1d'},"{'description': 'Background\nCataract, opacification of the lens, is one of the commonest causes of loss of useful vision, with an estimated 16 million people worldwide affected. Cataract surgery is the most frequently performed surgical procedure in the NHS with over 300,000 operations annually in England alone. This dataset spans the full cataract care pathway at University Hospitals Birmingham NHS Trust.  Information from the start of the hospital episode including the ophthalmological clinical assessment (details of ocular examination and vision), preoperative assessment (ocular biometry), moving to the surgery day and the chosen anaesthesia (type of anaesthetic), surgery (details of procedure, lens choice, any complications), postoperative recovery (postoperative events) and visual rehabilitation (refractive and visual outcomes). \n\nGeography\nThe West Midlands has a population of 5.9 million. The region includes a diverse ethnic, and socio-economic mix, with a higher than UK average of minority ethnic groups. It has a large number of elderly residents but is the youngest population in the UK. There are particularly high rates of diabetes, physical inactivity, obesity, and smoking.\n\nData source:  \n1. The Electronic Health Records held at University Hospitals Birmingham NHS Foundation Trust is one of the largest NHS Trusts in England, providing direct acute services and specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds and 100 ITU beds. 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"{'title': 'Tayside Radiology', 'publisher': {'identifier': '607db9c4e1f9d3704d570d1f', 'memberOf': 'ALLIANCE', 'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE'}, 'contactPoint': 'hicsupport@dundee.ac.uk', 'keywords': ['Radiology ', 'CRIS'], 'abstract': 'Tayside radiology dataset. As of 2016 it now contains Fife data as well (TN).  This dataset is provided to HIC as extracts from a system called CRIS which you can read about here http://www.hssnet.com/hss-cris/'}",af10ec29-1866-4726-b33f-3948afe182f2,"{'followup': 'UNKNOWN', 'spatial': ['https://www.geonames.org/2636157/tayside-region.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'e2b2143c-6882-481f-82a3-78c6cd1df7d5', '3.0.0': '135f2650-ea0c-4cad-80ac-c86449a176a8', '1.0.0': 'b8107ec3-ba35-45ee-8231-cb610fe2ce48', '2.0.0': 'b1dc1917-8522-4ecd-a829-c866c5cffe3b', 'latest': '135f2650-ea0c-4cad-80ac-c86449a176a8'}","{'description': 'This dataset is provided to HIC as extracts from a system called CRIS', 'isPartOf': 'University of Dundee Health Informatics Centre'}",135f2650-ea0c-4cad-80ac-c86449a176a8,https://web.www.healthdatagateway.org/dataset/135f2650-ea0c-4cad-80ac-c86449a176a8,"{'access': {'deliveryLeadTime': 'OTHER', 'accessRights': ['https://www.dundee.ac.uk/hic/governanceapprovalsupport/'], 'accessService': 'HIC has implemented a remote-access ""Safe Haven"" environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details are available via the following link:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/', 'dataController': 'University of Dundee', 'jurisdiction': ['GB-SCT']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['DISCLOSURE CONTROL']}, 'formatAndStandards': {'language': ['en'], 'format': ['Database'], 'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL']}}","{'temporal': {'accrualPeriodicity': 'STATIC', 'endDate': '2017-04-04', 'distributionReleaseDate': '2021-09-03', 'startDate': '1994-02-23', 'timeLag': 'NOT APPLICABLE'}, 'origin': {'purpose': ['CARE'], 'collectionSituation': ['PRIMARY CARE'], 'source': ['EPR', 'ELECTRONIC SURVEY']}}",2020-06-03T12:57:08Z,"[{'observedNode': 'PERSONS', 'measuredValue': '8760000', 'disambiguatingDescription': '8,760,000 in the dataset', 'observationDate': '03/09/2021', 'measuredProperty': 'COUNT'}]",3.0.0,,2021-09-09T09:45:28Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 24, 'structuralMetadata.columnName': 24, 'structuralMetadata.columnDescription': 24, 'structuralMetadata.dataType': 24, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'f42d4b6b-2cf0-4beb-acd6-0dbc041961fb', 'description': 'Tayside radiology dataset. As of 2016 it now contains Fife data as well (TN).  This dataset is provided to HIC as extracts from a system called CRIS which you can read about here http://www.hssnet.com/hss-cris/', 'name': 'Radiology (CRIS)', 'dataElementsCount': 24, 'dataElements': '0f062c75-3fe2-4e10-a27e-7a30b41b0d6e, 3c3250cc-6e6a-4827-9e87-6c2e1c2d42a6, cac73ce9-b2c5-468a-9c8a-f92485808a83, e15eb941-d654-4d0d-9581-2b21ad69c071, 8e73f5a2-51d2-46a7-958d-8bf414603358, 5171fefc-ff4d-4951-8129-b37dbaf67348, 6012f2d7-5839-428c-aaa8-712ebbdd8a79, 3d9d28ca-2095-4cdf-9e4b-727a394dc670, b656aa1a-a084-4288-a75e-427def3a44dd, 8f4102c1-4d22-43c5-b4ea-b4c75f9184c1, c2cbc36b-a831-4524-b1cc-5dd77d8710a6, 4ef3ad58-b987-4d81-83ca-5491b88540fd, bce9acb3-8534-4cbe-b86d-27bf91678eb9, f20ba0e8-854c-4db3-9f3f-e7f2ef3144e3, b6cee979-ffef-41a2-b6ef-ff0ba67148e9, a02e642f-ccaa-4e8d-ad91-8394b7cf3d95, 783c1ec2-c9db-4eb5-8644-2d40999fec15, e912f097-f636-4a1d-a59e-fe7dd64c0bd1, 7ba7df17-4fd5-4ab4-a23a-9a37a0937c8b, eb0dce16-9e9f-4aa2-9988-63f603e387ba, 41b3951a-6af2-4fe4-98e6-4a03b829ab07, f00c29fb-f001-4cbb-a0df-767d4f2399e2, c4e9bfc4-ea79-4f48-941b-8c25ebcff2e5, 9f33a107-6c40-4f6d-aeb4-777d588cb2d5'}]}"
"{'title': 'Manchester Eye Tissue Repository', 'doiName': 'Not Available', 'publisher': {'memberOf': 'ALLIANCE', 'contactPoint': 'Paul.Bishop@manchester.ac.uk', 'name': 'TISSUE DIRECTORY'}, 'contactPoint': 'Paul.Bishop@manchester.ac.uk', 'keywords': ['Repository', 'Degenerative disorder of macula (disorder)', 'Tissue', 'UKCRC Tissue Directory', 'Eye', 'Manchester'], 'abstract': 'Collection of samples and data across the following diseases: Degenerative disorder of macula (disorder).'}",47fc8f03-eba1-4efa-ae3e-148a76b56517,"{'physicalSampleAvailability': ['IN PROGRESS'], 'typicalAgeRange': 'Not Known', 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '760b0c63-547b-41a9-9b23-0249469b84dc', '3.0.0': '1406c52a-e5d6-4c57-883d-62e405eb604a', '1.0.0': 'ab86ef8b-00f4-4084-b9bc-9015f5f58276', '2.0.0': 'f1a93b8f-6332-43a2-b2da-c86f68f7d24a', 'latest': '1406c52a-e5d6-4c57-883d-62e405eb604a'}","{'description': 'Repository of post mortem donor eye tissue collected after removal of the corneas for transplantation. It has been established particularly for research into macular disease (age-related macular degeneration), but other ocular tissues have been stored frozen including peripheral retina, sclera, lens, vitreous and optic nerve.  Macular tissue has been stored frozen for immunohistochemistry (by embedding in OCT) and for biochemical studies.  The donor tissue had been genotyped in relation to AMD risk. The Repository is funded by The Macular Society.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",1406c52a-e5d6-4c57-883d-62e405eb604a,https://web.www.healthdatagateway.org/dataset/1406c52a-e5d6-4c57-883d-62e405eb604a,"{'access': {'accessRequestCost': 'Not specified', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED.', 'dataProcessor': 'Not Applicable', 'accessRights': 'Please contact the publisher using Contact Point details provided.', 'dataController': 'University of Manchester', 'jurisdiction': 'GB-ENG'}, 'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}}","{'temporal': {'startDate': '2015-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:16:30Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:06:43Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'COPDMAP Consortium', 'publisher': {'memberOf': 'HUB', 'contactPoint': 'breathe.saildatabank@swansea.ac.uk', 'name': 'BREATHE'}, 'contactPoint': 'breathe.saildatabank@swansea.ac.uk', 'abstract': 'COPDMAP is building a number of research questions around a group of COPD patients. The aim is to get a holistic view of disease progression — all studies are conducted on the same patient samples and groups with full clinical histories and phenotypes.', 'keywords': ['BREATHE', 'COPDMAP'], 'doiName': 'In Progress'}",bcbc41cb-99f7-482e-ba3d-561164abbd4e,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'United Kingdom', 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '5b669107-7e3e-45eb-9b9c-0bf594641e10', '5.0.0': '1450ff1a-4526-4a6e-b9e9-25969878449d', '0.0.1': 'a1814fb9-2a25-4a5c-a6ed-52007c92d87c', '2.0.0': 'bdf3ed5f-eeff-4c14-8cde-089aed6d6adc', '3.0.0': '1e266f05-4fa8-40d8-a008-7dff627bfa9b', '4.0.0': '505318b6-609c-4baf-9dea-2e3532f936f8', 'latest': '1450ff1a-4526-4a6e-b9e9-25969878449d'}","{'description': 'COPDMAP is building a number of research questions around a group of COPD patients. The aim is to get a holistic view of disease progression — all studies are conducted on the same patient samples and groups with full clinical histories and phenotypes.\n\nData are shared across all partners in real time. Key areas for research include understanding the patients more deeply, investigating the exacerbation of symptoms after infection, identifying new disease mechanisms and better understanding the muscle wasting associated with COPD.', 'isPartOf': 'No Group'}",1450ff1a-4526-4a6e-b9e9-25969878449d,https://web.www.healthdatagateway.org/dataset/1450ff1a-4526-4a6e-b9e9-25969878449d,"{'usage': {'isReferencedBy': ['To follow'], 'resourceCreator': 'MRC/ABPI Inflammation and Immunology Initiative'}, 'access': {'dataProcessor': 'COPDMAP Consortium', 'dataController': 'COPDMAP Consortium', 'jurisdiction': 'GB', 'accessRights': 'In Progress', 'deliveryLeadTime': 'VARIABLE'}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL']}}",,2020-01-13T15:51:51Z,,5.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-04-14T08:25:26Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Optimum Patient Care Research Database', 'publisher': {'memberOf': 'HUB', 'contactPoint': 'breathe.saildatabank@swansea.ac.uk', 'name': 'BREATHE'}, 'keywords': ['GP', 'Primary Care', 'OPCRD', 'EHR', 'BREATHE'], 'abstract': 'Optimum Patient Care Research Database (OPCRD) holds anonymous data from over\xa0700\xa0general practices in UK and approximately\xa08.8\xa0million\xa0patients.', 'contactPoint': 'breathe.saildatabank@swansea.ac.uk'}",e3ca35c1-b2e2-4479-adf1-6a78b1c8c088,"{'typicalAgeRange': '0-150', 'spatial': 'United Kingdom', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '13edd5e5-5726-4cdd-a9ac-85a552a19ebf', '4.0.0': '145916c8-d3ca-4465-a719-93dd0770a6e4', '0.0.1': '4e0c3901-9669-4247-b53d-b29a10dad72a', '2.0.0': 'fcf04789-b242-42d0-a31b-a109ec78f12a', '3.0.0': 'ae4b8371-d037-46e8-bdcd-bf3de08ef38e', 'latest': '145916c8-d3ca-4465-a719-93dd0770a6e4'}","{'description': 'The Optimum Patient Care Research Database (OPCRD) is a primary care dataset from over 700 practices across the UK covering over 7.3 million patients augmented with respiratory questionnaire and clinical review data. OPCRD is established and maintained by Optimum Patient Care (OPC), a UK based social enterprise. OPC is guided by leading clinical and academic experts, it is one of the biggest primary care research networks in the world. The anonymous electronic medical records and patient questionnaires collected within OPCRD provide an essential source of real world data to promote evidence based research and quality improvement. OPC has grown to become a global leader in the provision of technologically enhanced health care data and clinical research services.', 'isPartOf': 'N/A'}",145916c8-d3ca-4465-a719-93dd0770a6e4,https://web.www.healthdatagateway.org/dataset/145916c8-d3ca-4465-a719-93dd0770a6e4,"{'access': {'accessRights': 'Available upon request', 'jurisdiction': 'GB', 'dataProcessor': 'OPCRD', 'deliveryLeadTime': 'HTTP://OPCRD.CO.UK/OPCRD-DATA-REQUEST/', 'dataController': 'OPCRD', 'accessRequestCost': 'http://opcrd.co.uk/opcrd-data-request/'}, 'formatAndStandards': {'format': ['Relational SQL database'], 'language': ['en']}, 'usage': {'resourceCreator': 'Optimum Patient Care UK'}}",,2020-01-13T15:48:22Z,,4.0.0,,2021-04-14T08:24:37Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Asthma and COPD Audit  (NACAP): secondary care  – CYP asthma (org)', 'contactPoint': 'DataSharing@hqip.org.uk', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'HQIP', 'identifier': '607db9c4e1f9d3704d570d23'}, 'keywords': ['Audit', 'NACAP', 'Asthma', 'COPD', 'Secondary Care workstream', 'Children and Young People', 'Asthma', 'Organisational'], 'abstract': 'Contains organisational survey data collected from hospitals in England, Wales and Scotland in Devember 2019.'}",3efd9b30-1f84-48c0-a3e0-402ecb5c7724,"{'followup': 'UNKNOWN', 'spatial': ['https://www.geonames.org/2634895/wales.html', 'https://www.geonames.org/6269131/england.html'], 'pathway': 'Structure and resource of CYP asthma services December 2019 - February 2020.', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 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'jurisdiction': ['GB-EAW'], 'dataProcessor': 'Crown Informatics Limited (patient identifiable information)\nRoyal College of Physicians (RCP), NACAP team (service level aggregated data only)\nImperial College London (service level aggregated dat only)'}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'vocabularyEncodingScheme': ['OTHER'], 'format': ['Excel', 'CSV']}, 'usage': {'resourceCreator': ['Data has been provided by the Healthcare Quality Improvement Partnership from the National Asthma and COPD Audit Programme'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['NO RESTRICTION']}}","{'temporal': {'startDate': '2019-06-01', 'accrualPeriodicity': 'OTHER', 'timeLag': 'VARIABLE'}, 'origin': {'source': ['ELECTRONIC SURVEY'], 'purpose': ['AUDIT'], 'collectionSituation': ['IN-PATIENTS']}}",2021-11-12T10:18:04Z,"[{'observedNode': 'FINDINGS', 'measuredValue': 110, 'disambiguatingDescription': 'number of hospitals in England which submited data', 'observationDate': '24/06/2021', 'measuredProperty': 'count'}]",4.0.0,"{'qualifiedRelation': ['Data linked with that from other custodians may be available, but the release of linked data will be subject to separate permission of all relevant data controllers'], 'derivation': ['Not Available']}",2021-11-12T10:18:04Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 43, 'structuralMetadata.columnName': 43, 'structuralMetadata.columnDescription': 43, 'structuralMetadata.dataType': 43, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '1f0de470-ff24-4359-9bd9-e4a5ce15dc35', 'description': 'Secondary care: Children and young people asthma: Organisational audit dataset 2021 Section 1 data fields: Admissions – Numbers and beds', 'name': 'Secondary care: Children and young people asthma: Organisational audit dataset 2021', 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"{'title': 'Cystic Fibrosis Patient Sweat Tests', 'contactPoint': 'registry@cysticfibrosis.org.uk', 'keywords': ['CYSTIC FIBROSIS'], 'publisher': {'name': 'CYSTIC FIBROSIS TRUST', 'memberOf': 'ALLIANCE', 'contactPoint': 'registry@cysticfibrosis.org.uk'}, 'abstract': 'The UK Cystic Fibrosis Registry Sweat Chloride Tests is made up of data items relating to sweat chloride tests taken during CF patients encounters at NHS hospitals in UK.', 'doiName': '10.1093/ije/dyx196'}",34f0c2bd-d42e-4441-a89b-e0e384f12afa,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'UK', 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '60f87ad3-f782-4c7c-8f2b-8d4f03f00256', '4.0.0': '148ebbaa-28f4-42e0-a27f-8587e516c3bf', '3.0.0': 'e66b726f-8e58-4411-be32-1d00ba1df13f', '1.0.0': '8b009063-5760-4915-8bcb-020ca17f8898', '0.0.1': '9563eda8-8192-4f0d-a765-e8621e76b160', 'latest': '148ebbaa-28f4-42e0-a27f-8587e516c3bf'}","{'description': ""The UK CF Registry is a centralised database of all 60 CF centres across the UK. Data are manually entered in calendar years by CF clinical teams for the 99% of people with a diagnosis of CF who consent to their data being donated to the Registry. Data are entered onto a secure web-portal. Sweat tests refer to sweat chloride tests taken by CF patients in relation to diagnosis of CF, investigations or as part of protocol for initiating onto CFTR modifier drug treatments. For more information please see www.cysticfibrosis.org.uk/registry and 'Data Resource Profile: The UK CF Registry' published in the International Journal of Epidemiology (2018 Feb 1;47(1)9-10e)."", 'isPartOf': 'No Group'}",148ebbaa-28f4-42e0-a27f-8587e516c3bf,https://web.www.healthdatagateway.org/dataset/148ebbaa-28f4-42e0-a27f-8587e516c3bf,"{'usage': {'isReferencedBy': [""'Data Resource Profile: The UK CF Registry' published in the International Journal of Epidemiology (2018 Feb 1;47(1)9-10e)""], 'resourceCreator': 'Cystic Fibrosis Trust'}, 'access': {'jurisdiction': 'GB', 'dataProcessor': 'Cystic Fibrosis Trust', 'deliveryLeadTime': '16 WEEKS (8 WEEKS FOR COMMITTEE DECISION AND 8 WEEKS FOR DATA EXTRACTION AND PROCESSING)', 'accessRequestCost': 'Whilst the UK CF Registry does not charge for data, it must recoup costs of data handling (including extract and cleaning), project management, and analysis (where applicable) on behalf of third parties. The charging structure outlined below is designed to be fair, proportionate, and transparent whilst furthering the Registry’s aim of stimulating research use of the data for the benefit of people with cystic fibrosis.\n\nhttps://www.cysticfibrosis.org.uk/the-work-we-do/uk-cf-registry/apply-for-data-from-the-uk-cf-registry', 'accessRights': 'https://www.cysticfibrosis.org.uk/the-work-we-do/uk-cf-registry/apply-for-data-from-the-uk-cf-registry', 'dataController': 'Cystic Fibrosis Trust'}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'format': ['csv']}}","{'temporal': {'accrualPeriodicity': 'ANNUAL', 'endDate': '2019-09-01', 'startDate': '1996-01-01', 'distributionReleaseDate': '2019-09-01'}}",2020-04-27T11:27:23Z,,4.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['All our datasets are linked by a common identifier. No external linkages.']}",2021-02-21T15:21:59Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 11, 'structuralMetadata.columnName': 11, 'structuralMetadata.columnDescription': 2, 'structuralMetadata.dataType': 11, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '23d487cb-489c-473a-b8c1-cf6e2e2e990e', 'name': 'Sweat', 'dataElementsCount': 11, 'dataElements': '2fbb7390-4506-44df-8759-09aa9d96f600, bd3743cb-3db6-4305-bb30-a8eb5cc54fa3, 8b87ed1c-ca8b-4326-a19a-e4518f57a3ab, d6fc09d1-0d21-4cf4-a38d-a11abc71ee16, b7803118-f231-4062-81af-417404682d17, 41be15a9-53ab-4d23-bd1d-bda663a78d78, 422d8b7f-bbaa-445c-92c2-4b8353ffc73b, 7de146bd-ae35-45ca-aa5b-d633af442e6b, 36c2df71-a252-4cbf-a5e1-5c67d7f9c908, 4c426031-dbf1-449b-81d5-7e34f804135b, a8026a51-c6ea-438a-a6a3-4ab7d8a61dd2'}]}"
"{'title': 'Practice postcode linked deprivation measures for CPRD GOLD', 'keywords': ['Area level', 'Deprivation', 'Socioeconomic', 'SES'], 'publisher': {'identifier': '607db9c2e1f9d3704d570cee', 'memberOf': 'ALLIANCE', 'name': 'CPRD'}, 'abstract': 'CPRD GOLD linked small area level socio-demographic and socio-economic data mapped to the postcode of the GP practice, including the Index of Multiple Deprivation and Carstairs Index', 'contactPoint': 'enquiries@cprd.com', 'doiName': 'https://doi.org/10.48329/aep7-aq95'}",3326d554-ca11-4dc6-aff0-c5b314442d27,"{'spatial': ['https://www.geonames.org/2635167/united-kingdom.html'], 'typicalAgeRange': '0-115', 'followup': 'OTHER', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'3.0.0': '36d3480e-38ae-470c-ab6f-b704ee2645ec', '4.0.0': '14a90909-997f-4676-ae52-e19c01670e23', '2.0.0': 'c6117afd-bc4d-404b-8d58-9d87db936b4c', '0.0.1': '51626fa8-8fb0-4c43-af95-be0466c8b82d', '1.0.0': '88bcac98-2d04-4388-bc8b-7a6bc774235d', 'latest': '14a90909-997f-4676-ae52-e19c01670e23'}","{'description': 'General practice postcode linkages are available for all practices in CPRD GOLD. The general practice postcode is linked via Lower Super Output Area (LSOA), Super Output Area (SOA) in Northern Ireland and datazone (DZ) in Scotland.\nThe general practice postcode linkage includes several well-known area-based measures of deprivation, of which two are available at the LSOA level for linkage to CPRD primary care data through the practice postcode. These measures are: 2015 English Index of Multiple Deprivation (composite and individual domains); 2016 Scottish Index of Multiple Deprivation (composite and individual domains); 2017 Northern Ireland Index of Multiple Deprivation (composite and individual domains); 2014 Welsh Index of Multiple Deprivation (composite and individual domains)\nCarstairs Index: England, Wales and Scotland calculated using 2011 census data.\n\nAs standard, the most recent national Indices of Deprivation are provided for each country. It is important to note that the IMD indices are not comparable between countries in the UK. Older versions of the deprivation scores can be provided on request. The data are updated monthly. data are provided as quintiles or deciles of the deprivation score to prevent disclosure of patient location. In order to prevent the possibility of deductive disclosure of the location of a practice, researchers will only be provided with one of the above linked datasets for any one study.', 'associatedMedia': ['https://www.cprd.com/linked-data'], 'isPartOf': 'CPRD GOLD'}",14a90909-997f-4676-ae52-e19c01670e23,https://web.www.healthdatagateway.org/dataset/14a90909-997f-4676-ae52-e19c01670e23,"{'access': {'dataProcessor': 'CPRD', 'accessService': 'Access to CPRD data, including UK Primary Care Data, and linked data such as Hospital Episode Statistics, is subject to protocol approval via CPRD’s Research Data Governance (RDG) Process. 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"{'title': 'UHB 2020 Winter Society of Acute Medicine Benchmarking Audit', 'publisher': {'memberOf': 'HUB', 'name': 'PIONEER', 'contactPoint': 'Pioneer@UHB.NHS.UK'}, 'contactPoint': 'Pioneer@UHB.NHS.UK', 'abstract': 'Society of Acute Medicine Audit data. Hospital patients admitted during the COVID pandemic. Granular care pathways for reconfigured services. Severity, demographics, multi-morbidity, interventions and treatments, outcomes. Flow through hospital. UHBFT.', 'doiName': 'https://web.www.healthdatagateway.org/dataset/5bf9bf39-3cd7-4a54-994b-9914405f945e', 'keywords': ['NHS', 'Acute', 'AMU', 'NEWS2', 'deterioration', 'alert', 'SEWS', 'COVID', 'Patient', 'acute hospitals', 'inpatient', 'ethnicity', 'multi-morbidity', 'blood', 'biomarkers', 'pregnancy', 'care escalation', 'physiology', 'demographics', 'treatments', 'therapies', 'interventions', 'outcomes', 'death ', 'clinical speciality', 'medical review', 'observations', 'place of review', 'frailty']}",5bf9bf39-3cd7-4a54-994b-9914405f945e,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include even more granular hospital data.', 'followup': '0 - 6 MONTHS', 'spatial': 'West Midlands Region, UK', 'typicalAgeRange': '16-90'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'dc4d5fc6-b39a-4199-b1f2-1b428fc32cd9', '2.0.0': '1584af1e-9683-4727-8c9b-9bea8beaa68d', '1.0.0': '19f9399a-2794-47af-aca1-357014a1ee31', 'latest': '1584af1e-9683-4727-8c9b-9bea8beaa68d'}","{'description': 'Background\nThe Society for Acute Medicine (SAM) Benchmark Audit (SAMBA) is a national benchmark audit of acute medical care. The aim of SAMBA20 is to describe the severity of illness of acute medical patients presenting to Acute Medicine within UK hospitals, speed of assessment, pathway and progress seven days after admission and to provide a comparison for each participating unit with the national average (or ‘benchmark’). On average >150 hospitals take part in this audit per year.\nSAMBA20 winter audit measured adherence to some of the standards for acute medical care. Acute Medical Units work 24-hours per day and 365 days a year. They are the single largest point of entry for acute hospital admissions and most patients are at their sickest within the first 24-hours of admission. \nThis dataset includes\n•\tTotal number of patients assessed by acute medicine across ED, AMU and Ambulatory Care. \n•\tMedical and nursing levels \n•\tSeverity of illness \n•\tTimeliness in processes of care \n•\tClinical outcomes 7 days after admission\nPIONEER geography\nThe West Midlands (WM) has a population of 5.9million & includes a diverse ethnic, socio-economic mix. There is a higher than average % of minority ethnic groups. WM has a large number of elderly residents but is the youngest population in the UK. There are particularly high rates of physical inactivity, obesity, smoking & diabetes. WM has a high prevalence of COPD, reflecting the high rates of smoking and industrial exposure. Each day >100,000 people are treated in hospital, see their GP or are cared for by the NHS. This is the SAMBA dataset from 4 NHS hospitals.\nEHR University Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & 100 ITU beds. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.\nScope: These data come from Queen Elizabeth Hospitals Birmingham, Good Hope Hospital, Solihull Hospital and Heartlands Hospital. All admissions in a  pre-defined 24-hour period, the severity of illness, patient demographics, co-morbidity, acuity scores, serial, structured data pertaining to care process (timings, staff grades, specialty review, wards) all prescribed & administered treatments (fluids, antibiotics, inotropes, vasopressors, organ support), all outcomes.  \nAvailable supplementary data:\nMore extensive data including granular serial physiology, bloods, conditions, interventions, treatments. Ambulance, 111, 999 data, synthetic data.\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services', 'associatedMedia': ['https://www.pioneerdatahub.co.uk/wp-content/uploads/Samba-infographic-winter-2020-V4.pdf'], 'isPartOf': 'SAMBA'}",1584af1e-9683-4727-8c9b-9bea8beaa68d,https://web.www.healthdatagateway.org/dataset/1584af1e-9683-4727-8c9b-9bea8beaa68d,"{'usage': {'dataUseRequirements': 'INSTITUTION SPECIFIC RESTRICTIONS', 'dataUseLimitation': 'RESEARCH USE ONLY', 'isReferencedBy': ['https://www.acutemedicine.org.uk/samba-2020-report/'], 'resourceCreator': 'This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)', 'investigations': ['https://www.acutemedicine.org.uk']}, 'access': {'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'dataProcessor': 'NOT APPLICABLE', 'accessRequestCost': 'https://www.pioneerdatahub.co.uk/data/data-services-costs/', 'jurisdiction': 'GB', 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'deliveryLeadTime': '1-2 MONTHS', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust'}, 'formatAndStandards': {'vocabularyEncodingScheme': 'OTHER', 'format': ['SQL'], 'language': 'en', 'conformsTo': 'LOCAL'}}","{'origin': {'collectionSituation': ['ACCIDENT AND EMERGENCY', 'OUTPATIENTS', 'IN-PATIENTS'], 'source': 'EPR', 'purpose': 'AUDIT'}, 'temporal': {'timeLag': 'LESS 1 WEEK', 'endDate': '2020-01-30', 'distributionReleaseDate': '2020-01-31', 'accrualPeriodicity': 'STATIC', 'startDate': '2020-01-30'}}",2021-01-15T10:23:53Z,"[{'observedNode': 'Events', 'measuredValue': 'Anonymous SAMBA dataset with total of 281 Patients', 'disambiguatingDescription': '', 'observationDate': '2020-01-30', 'measuredProperty': 'count'}]",2.0.0,"{'qualifiedRelation': ['Part of the SAMBA datasets: https://www.acutemedicine.org.uk/samba/'], 'tools': ['', '']}",2021-02-25T15:24:19Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 56, 'structuralMetadata.columnName': 56, 'structuralMetadata.columnDescription': 56, 'structuralMetadata.dataType': 56, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'ed8d7a3a-53df-4aff-99f5-2a359349c779', 'description': 'SAMBA winter 2020 audit', 'name': 'SambaWinterUhbPatientData', 'dataElementsCount': 56, 'dataElements': '2482a80b-4279-49a3-8673-910ab45bd27b, 61c1664b-bc43-4e9f-9d53-e8ce34700d9b, 99ece523-7d9b-4404-a897-02aff4ded563, be7bc054-5093-4964-8ab2-4fc0190ec50f, 0555a299-e56b-48c7-b3b2-3835ba8d20ea, 331f7f84-918e-4c88-a16a-fea5bfc20e40, 5939acb6-9a2e-4fc9-8cad-0bd6aa908503, f932d2cf-1281-433f-982b-cc75db842ca2, 2944cf66-764a-4059-b8b4-aa6c31ba366b, 0f066776-d10f-4041-a06d-21907e73bef0, f4f9d5be-d15c-4fd5-8b70-15e57da4cf04, e47434cd-43d6-4283-b033-194c0bee5f56, f53315b6-cc46-487a-897b-72aff0e32e2c, 05a7136d-573d-4f4c-8bb7-f76571b84120, 84c4ae7a-6ac5-4f97-9e60-7da6a6c495cd, 4295f693-f806-4cc3-a856-d8f5fbbbfb1c, cb31bdef-8893-4bab-8405-27733a439cb6, 6a179316-21f0-40c5-91d5-dda7d82cae59, b7a2ffb9-62d6-4da6-b9de-7556f5085c23, 429463f9-067e-4414-8542-dabe056ba02d, 36b13a1c-e95e-439b-a270-f695e14a3eca, a362f8fc-15be-4202-80dd-c446e59898ba, cc53fda6-fda0-424c-8acf-b1aba1fcb3fb, bb739865-893f-46bb-9db7-5657ad2b1c13, c3ab8b40-7774-43b0-8d50-08cb83bc1ddd, fd28ab76-ddab-47ca-bd9d-ffffff72306a, afbe1561-c24e-4901-a077-c4b59ba36fd4, 89adf14b-3a95-4677-b601-ec14731a8ff3, 2c5c41ca-c0fd-4421-abe7-1967454b5b73, 131b8d0b-80b4-44b1-aec4-58f919c95481, dc87a69c-593c-4ff6-b049-d32d67cc25fb, ea317e28-a3bb-4e2c-856e-c8ce6deb16a6, 2b0f61d8-1771-436c-849c-3597765747c2, 225cd2ed-662b-413a-87e8-8fe877633241, 500a8d73-1198-4729-993e-1b3c43aa82c1, f3aed019-d289-4828-9349-be4e7fe0e844, dc4159b8-79af-4068-88a5-c607b759c0ec, 95f8c7b8-0ca9-4f8b-a546-5a39f9780df7, b378c002-671f-41ef-ad30-47a33ba5eb30, 7e64ef11-f33d-48b0-9016-89faa1eac926, 24290eda-1432-4716-916d-7c7115db0657, 70757954-9ee5-4e19-92b9-41167d6614ec, 95a4cbce-7cce-4bf2-93f6-26041731ec28, 612e066c-6308-414a-91b6-502f04e9f815, a4f47ad2-2c68-434d-a2f4-d7afa353b78e, 8ecfab82-e19e-485a-9fc1-798b1a066acb, 139761ef-21e8-43c1-9b58-f4336963b374, 0b85c558-3a39-4c4c-950b-1b7c0a37c20e, da4335ad-9c31-4194-ab55-0a98e51651da, 8f1ca4ad-f184-4bdd-917b-95f0d534683a, 8ae6c676-8713-4622-b7e9-345fcd16259a, e87ec4e5-6d3a-40b8-8aba-e3b5a5caf7d5, d54f75a2-ce19-45d1-b28c-fa6efad25f2b, 5841e09c-492d-4450-b4c4-435f26461680, 5f33f814-795d-49ef-b954-a14045460d64, 4e853f3a-7578-4807-bf12-06f19caa3764'}]}"
"{'title': 'Health and Employment After Fifty (HEAF)', 'abstract': 'HEAF is a prospective cohort study of adults in England aged 50 and over that aims to examine the relationship between extended working life and health, and shed light on how to best to support the well-being of older workers.', 'publisher': {'name': 'DATAMIND', 'identifier': '61800787f4dde0c2a01e1ea2', 'memberOf': 'HUBS'}, 'keywords': ['HEAF', 'Mental Health', 'Physical Measures', 'Employment', 'Ageing', 'Longitudinal', 'Cohort', 'COVID-19', 'DATAMIND']}",ea2d54a2-a6d4-4e82-b2e4-95184f00bbdc,"{'spatial': ['https://www.geonames.org/6269131/england.html'], 'followup': '> 10 YEARS', 'typicalAgeRange': '50-68'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '15aebc30-1e52-4a36-8b17-f9801f35f649'},"{'description': ""HEAF is a prospective cohort study of older people drawn from the patient registers of 24 English general practices which contribute data to the Clinical Practice Research Datalink (CPRD). \n\nThe HEAF study aims to assess the health benefits and risks of remaining in work at older ages and their predictors, and thereby the potential health impact of policies to extend working life and maximise employment in later working life and to  identify occupational, social and personal co-factors which modify this relationship, as possible targets for intervention.\n\nOver 8,000 participants born between 1948 and 1962 were recruited and represent every decile of deprivation. Annual questionnaires are used to collect information concerning participants' mental and physical health, work status, thoughts about work and retirement, and other demographic factors (e.g. age, gender, ethnicity) and lifestyle choices (e.g. smoking and physical activity). Health information in the form of coded data is provided by the CPRD.""}",15aebc30-1e52-4a36-8b17-f9801f35f649,https://web.www.healthdatagateway.org/dataset/15aebc30-1e52-4a36-8b17-f9801f35f649,"{'access': {'dataProcessor': 'University of Southampton', 'dataController': 'University of Southampton', 'jurisdiction': ['GB-ENG'], 'accessRights': ['https://www.mrc.soton.ac.uk/cmhw/southampton-hub/research-projects-led-by-the-southampton-hub/the-heaf-study/']}}","{'origin': {'purpose': ['STUDY']}, 'temporal': {'accrualPeriodicity': 'OTHER', 'timeLag': 'VARIABLE', 'startDate': '2013-01-01'}}",2021-12-02T09:47:42Z,"[{'observedNode': 'PERSONS', 'measuredValue': 8134, 'disambiguatingDescription': 'Number of participants at recruitment', 'observationDate': '01/01/2013', 'measuredProperty': 'Count'}]",1.0.0,,2021-12-02T09:47:42Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'GENOMICS ENGLAND 100K QUICK VIEW', 'contactPoint': 'gecip-help@genomicsengland.co.uk', 'publisher': {'name': 'GENOMICS ENGLAND', 'memberOf': 'ALLIANCE', 'contactPoint': 'gecip-help@genomicsengland.co.uk'}, 'abstract': 'Data views that bring together data from several LabKey tables for convenient access', 'doiName': 'Not Available', 'keywords': ['cancer', 'rare disease', 'genome', 'genomics', 'DNA', 'data', 'DATA-CAN']}",4cc5ed33-3190-4f80-953b-cabd5a2b1c7c,"{'pathway': 'Linked datasets cover secondary care.', 'spatial': 'England, UK', 'followup': 'OTHER', 'physicalSampleAvailability': ['DNA'], 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'a0004266-81b6-472a-846b-58a23f3eb624', '2.0.0': '15efea36-d022-495c-a5b6-90f51631a643', '1.0.0': 'ecbe7275-82b5-43cd-9401-fd7ef4b55341', 'latest': '15efea36-d022-495c-a5b6-90f51631a643'}","{'description': 'Quickviews bring together data from several LabKey tables for convenient access, including:\n\nrare_disease_analysis\nData for all rare disease participants including: sex, ethnicity, disease recruited for and relationship to proband; latest genome build, QC status of latest genome, path to latest genomes and whether tiering data are available; as well as family selection quality checks for rare disease genomes on GRCh38, reporting abnormalities of the sex chromosomes, family relatedness, Mendelian inconsistencies and reported vs genetic sex summary checks. Please note that only sex checks are unpacked into individual data fields; a final status is shown in the “genetic vs reported results” column.\n\ncancer_analysis\nData for all cancer participants whose genomes have been through Genomics England bioinformatics interpretation and passed quality checks, including: sex, ethnicity, disease recruited for and diagnosis; tumour ID, build of latest genome, QC status of latest genome and path to latest genomes; as well file paths to the genomes. This table includes information derived from laboratory_sample and cancer_participant_tumour.\n\nPlease find information regarding the data release here:\nhttps://cnfl.extge.co.uk/pages/viewpage.action?pageId=135709957#ReleaseV8(28/11/2019)-ReleaseOverview', 'associatedMedia': ['https://cnfl.extge.co.uk/display/GERE/Genomics+England+Research+Environment', 'https://cb.extge.co.uk/labkey/CohortBrowser/project-begin.view?pageId=Introduction', 'https://youtu.be/Kie3HY8y6AU', 'https://youtu.be/EAjPVcAlGpM', 'https://youtu.be/5QhNjE_hdsQ'], 'isPartOf': '100K Primary Data'}",15efea36-d022-495c-a5b6-90f51631a643,https://web.www.healthdatagateway.org/dataset/15efea36-d022-495c-a5b6-90f51631a643,"{'access': {'dataProcessor': 'GENOMICS ENGLAND', 'deliveryLeadTime': '2-6 MONTHS', 'accessService': 'More information about the Genomics England Research Environment can be found here:\nhttps://www.genomicsengland.co.uk/about-genomics-england/research-environment/\nhttps://research-help.genomicsengland.co.uk/display/GERE/1.+The+Genomics+England+Research+Environment\nGenomics England 100k participants have consented to longitudinal lifetime followup and recontact safely through our clinical network.\nBRST (Bioinformatics Research Services) are a team of bioinformatics who know the dataset inside out and provide consultancy projects on a case by case basis.  \nOur network of clinical and medical experts can be made available on case by case basis.\nResearchers have the opportunity to work with our and access the GeCIP network who are a community of world-leading experts in specific cancers and rare diseases.', 'accessRequestCost': 'Fees will be dependent on the type of access that is necessary. Raw data is not eligible for export. Summary-level data may be exported provided that it is approved through the Genomics England Airlock Process', 'dataController': 'GENOMICS ENGLAND', 'accessRights': ['https://www.genomicsengland.co.uk/about-gecip/joining-research-community/'], 'jurisdiction': ['GB']}, 'usage': {'resourceCreator': 'The 100,000 Genomes Project Protocol v3, Genomics England. doi:10.6084/m9.figshare.4530893.v3. 2017.\nPublications that use the Genomics England Database should include an author as: Genomics England Research Consortium. Please see publication policy.', 'isReferencedBy': ['https://www.genomicsengland.co.uk/about-gecip/publications/'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['ETHICS APPROVAL REQUIRED', 'PROJECT SPECIFIC RESTRICTIONS', 'PUBLICATION MORATORIUM'], 'investigations': ['https://research.genomicsengland.co.uk/research-registry/browse/']}, 'formatAndStandards': {'format': ['Multiple Formats Available'], 'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL', 'OPCS4', 'READ', 'SNOMED CT', 'NHS NATIONAL CODES', 'ODS', 'ICD10', 'OTHER'], 'conformsTo': ['LOCAL', 'NHS DATA DICTIONARY', 'OTHER']}}","{'temporal': {'endDate': '2019-01-01', 'timeLag': '2-6 MONTHS', 'distributionReleaseDate': '2020-09-03', 'startDate': '2014-01-01', 'accrualPeriodicity': 'QUARTERLY'}, 'origin': {'purpose': ['DISEASE REGISTRY', 'CARE', 'OTHER'], 'collectionSituation': ['CLINIC', 'OUTPATIENTS', 'IN-PATIENTS'], 'source': ['EPR', 'ELECTRONIC SURVEY', 'LIMS', 'MACHINE GENERATED']}}",2020-04-07T11:38:32Z,"[{'observedNode': 'Persons', 'measuredValue': '71,800', 'disambiguatingDescription': 'Rare Disease Participants', 'observationDate': '2020-09-03', 'measuredProperty': 'Count'}, {'observedNode': 'Persons', 'measuredValue': '17,339', 'disambiguatingDescription': 'Cancer Participants', 'observationDate': '2020-09-03', 'measuredProperty': 'Count'}, {'observedNode': 'Findings', 'measuredValue': '17,891', 'disambiguatingDescription': 'Cancer Germline - Number of genomes', 'observationDate': '2020-09-03', 'measuredProperty': 'Count'}, {'observedNode': 'Findings', 'measuredValue': '19,333', 'disambiguatingDescription': 'Cancer Tumour - Number of genomes', 'observationDate': '2020-09-03', 'measuredProperty': 'Count'}, {'observedNode': 'Findings', 'measuredValue': '74,008', 'disambiguatingDescription': 'Rare Disease - Number of genomes', 'observationDate': '2020-09-03', 'measuredProperty': 'Count'}]",2.0.0,"{'tools': ['https://github.com/genomicsengland'], 'qualifiedRelation': [' HES Accident and Emergency', 'HES Admitted Patient Care', ' HES Outpatient Care', 'Diagnostic Imaging Dataset (DID)', 'Patient Reported Outcome Measures (PROMs)', 'Mental Health Minimum Data Set (MHMDS)', 'Office for National Statistics - Death details data (ONS)', 'Systemic Anti-Cancer Therapy Data Set (SACT)', 'National Radiotherapy Dataset (RTDS)', 'Cancer Registration (AV) tables', 'Cancer waiting times (CWT)', 'Lung Cancer Data Audit (LUCADA)', 'PHE Diagnostic Imaging Dataset (NCRAS_DID)'], 'derivation': ['This is a derived dataset']}",2021-01-15T10:06:35Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 2, 'structuralMetadata.tableName': 2, 'structuralMetadata.tableDescription': 2, 'structuralMetadata.dataElementsCount': 93, 'structuralMetadata.columnName': 93, 'structuralMetadata.columnDescription': 93, 'structuralMetadata.dataType': 93, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'a3d14258-c0fb-4ae6-9925-2db610800b31', 'description': 'Data for all cancer participants whose genomes have been through Genomics England bioinformatics interpretation and passed quality checks, including: sex, ethnicity, disease recruited for and diagnosis; tumour ID, build of latest genome, QC status of latest genome and path to latest genomes; as well file paths to the genomes. This table includes information derived from laboratory_sample and cancer_participant_tumour.\n\n\nSome key data included in the table are elucidated below:\n\n \nGlobal Tumour Mutation Burden\n\nThis is the number of somatic non-synonymous small variants per megabase of coding sequences (32.61 Mb). This metric was calculated using somatic_small_variants_annotation_vcf as input (see below for description) and all non-PASS variants were removed from the calculation.\n\n\n\nTumour purity\n\nThis is the tumour purity (cancer cell fraction) as calculated by Ccube (https://rdrr.io/github/keyuan/ccube/)\n\n\n\nMutational Signatures\n\nThe table includes the relative proportions of the different mutational signatures demonstrated by the tumour. Analysis of large sequencing datasets (10,952 exomes and 1,048 whole-genomes from 40 distinct tumour types) has allowed patterns of relative contextual frequencies of different SNVs to be grouped into specific mutational signatures. Using mathematical methods (decomposition by non-negative least squares) the contribution of each of these signatures to the overall mutation burden observed in a tumour can be derived. Further details of the 30 different mutational signatures used for this analysis, their prevalence in different tumour types and proposed aetiology can be found at the Sanger Institute Website: http://cancer.sanger.ac.uk/census.\n\n\n\nCancer PCA QC Statistics\n\nThe cancer analysis pipeline employs a sequencing quality control check which selects several important statistics associated with the sequencing returned by the sequencing provider, and uses them to check whether or not the sample in question is an outlier with respect to previous samples that have been run through the pipeline. It is, in effect, a safety net that can spot issues that have occurred at the tissue collection stage (i.e. at the GMC (Genomic Medicine Centre)) or at the library preparation step (i.e. at the sequencing provider), both of which may impact upon the final genomic analysis returned to the clinician.\n\n\n\nSomatic small variants annotation vcf filepaths\n\nThe somatic_small_variants_annotation_vcf column contains file paths pointing to VCFs containing Genomics England flags for potential false positive variants as well as additional annotations (see VCF header for details).  Swift and PolyPhen scores as well as new PONnoise50SNV flag were added. The flags used for annotation are:\n\ni. CommonGermlineVariant: variants with a population germline allele frequency above 1% in a Genomics England dataset\n\nii. CommonGnomADVariant: variants with a population germline allele frequency above 1% in gnomAD dataset\n\niii. RecurrentSomaticVariant: recurrent somatic variants with frequency above 5% in a Genomics England dataset\n\niv. SimpleRepeat: variants overlapping simple repeats as defined by Tandem Repeats Finder\n\nv. BCNoiseIndel: small indels in regions with high levels of sequencing noise where at least 10% of the basecalls in a window extending 50 bases to either side of the indel’s call have been filtered out by Strelka due to the poor quality\n\nvi. PONnoise50SNV: SNVs resulting from systematic mapping and calling artefacts\n\nThe following methodology was used for the PONnoise50SNV flag: the ratio of tumour allele depths at each somatic SNV site was tested to see if it is significantly different to the ratio of allele depths at this site in a panel of normals (PoN) using Fisher’s exact test. The PoN was composed of a cohort of 7000 non-tumour genomes from the Genomics England dataset, and at each genomic site only individuals not carrying the relevant alternate allele were included in the count of allele depths. The mpileup function in bcftools v1.9 was used to count allele depths in the PoN, and to replicate Strelka filters duplicate reads were removed and quality thresholds set at mapping quality >= 5 and base quality >= 5. All somatic SNVs with a Fisher’s exact test phred score < 50 were filtered, this threshold minimised the loss of true positive variants while still gaining significant improvement in specificity of SNV calling as calculated from a TRACERx truth set. 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"{'title': 'COVID-19 Clinical Information Network (CO-CIN)', 'abstract': 'CO-CIN has collected data on 105,000 patients of all ages requiring admission to hospital with covid-19, and patients in hospital subsequently diagnosed with covid-19 in England, Scotland and Wales.', 'keywords': ['CO-CIN', 'ISARIC 4C', 'COVID-19', 'NCS', 'CO-CONNECT', 'National Core Study'], 'publisher': {'memberOf': 'ALLIANCE', 'name': 'ISARIC 4C', 'contactPoint': 'isaric4c-samples@roslin.ed.ac.uk'}, 'contactPoint': 'isaric4c-samples@roslin.ed.ac.uk'}",84336be3-23bd-466e-b29b-df48db897665,"{'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['FAECES', 'PLASMA', 'SALIVA', 'SERUM', 'URINE', 'WHOLE BLOOD'], 'spatial': 'UK', 'pathway': 'Secondary care, ICU', 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '78b4e352-a47f-4b45-aeb8-32eeb49e59df', '3.0.0': '1638cce2-12f5-410b-9624-86d2f407c502', '1.0.0': '9a150924-8ade-40fa-8b36-44077fe0ac64', '2.0.0': '9a85b69e-fd3e-4522-bc68-48024df0ea3e', 'latest': '1638cce2-12f5-410b-9624-86d2f407c502'}","{'description': 'CO-CIN has collected data oncer 105,000 patients of all ages requiring admission to hospital with covid-19, and patients in hospital subsequently diagnosed with covid-19 in England, Scotland and Wales.', 'isPartOf': 'CO-CIN', 'associatedMedia': ['https://isaric4c.net/protocols/Common_across_UK/CCP_UK_CRF%20_v9.9_11NOV2020.pdf', 'https://argoshare.is.ed.ac.uk/isaric4c_recruitment/render_site.html#uk']}",1638cce2-12f5-410b-9624-86d2f407c502,https://web.www.healthdatagateway.org/dataset/1638cce2-12f5-410b-9624-86d2f407c502,"{'formatAndStandards': {'language': 'en', 'conformsTo': 'OTHER', 'format': ['text/csv'], 'vocabularyEncodingScheme': 'OTHER'}, 'access': {'accessRights': ['https://isaric4c.net/sample_access/'], 'dataProcessor': 'IDAMAC', 'jurisdiction': 'GB', 'accessService': 'Access to all data and samples collected by ISARIC4C are controlled by an Independent Data and Materials Access Committee (IDAMAC), composed of representatives of research funders, academia, clinical medicine, public health and industry. Their job is to ensure that all data and samples are used to generate the greatest possible benefit to humanity, in the shortest possible time.\n\nIf you are interested in requesting samples or data please briefly answer the questions below and send to isaric4c-samples@roslin.ed.ac.uk, including this statement in your email:\n\n“I agree for the contents of my application to be shared publicly on the internet and other media by the ISARIC 4C consortium.”\n\nWhat samples (type & volume) or data do you need?\nWhat will you do with the samples or data ?\nWhat is your previous track record of delivering similar work?\nWhen will you complete the proposed work?\nHow will you fund the proposed work?\nHow do you plan to share data, results, and products from these samples?\nWhy will this help the global response to COVID19?\nWhat assurance can you give with regards to your safe handling and secure storage of samples and data?', 'deliveryLeadTime': '2-4 WEEKS', 'dataController': 'IDAMAC', 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"{'title': 'MFT Biobank', 'publisher': {'name': 'TISSUE DIRECTORY', 'contactPoint': 'jay.brown@mft.nhs.uk', 'memberOf': 'ALLIANCE'}, 'doiName': 'Not Available', 'contactPoint': 'jay.brown@mft.nhs.uk', 'abstract': ""Samples & data for following diseases : Alzheimer's disease, Asthma, Atrial fibrillation and flutter, Cerebrovascular disease, Complete trisomy 21 syndrome, Congenital brain anomaly, Degenerative brain disorder   and others.\nSee full list in Description."", 'keywords': ['Asthma', 'Congenital brain anomaly', 'Complete trisomy 21 syndrome', 'MFT', 'UKCRC Tissue Directory', 'Atrial fibrillation and flutter', 'Cerebrovascular disease', ""Alzheimer's disease"", 'Degenerative brain disorder', 'Biobank']}",d17efe5d-325f-4fcf-b25e-87d1f6269bea,"{'physicalSampleAvailability': ['PLASMA', 'SERUM', 'TISSUE', 'WHOLE BLOOD'], 'typicalAgeRange': '40-150', 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': 'd3a3935f-b28e-4e74-9b15-9432d611f26c', '3.0.0': '16445ebd-bd45-4ded-a7ae-05f33f676598', '0.0.1': 'c79c71b8-bae1-4e78-a273-97a0c876ad96', '1.0.0': 'e5f628b1-4de5-4858-b891-a0dc29a40331', 'latest': '16445ebd-bd45-4ded-a7ae-05f33f676598'}","{'description': ""The UK Brain Bank Network is an initiative, led by the MRC, to establish a coordinated national network of UK brain tissue resources (banks) for researchers to use.\nThe banks store post-mortem brain and central nervous system (CNS) tissue donated by the public for diagnosis and research into disorders.  Advances in understanding genetics and many of the molecules that define brain function mean that more and more research questions can be answered from human brain tissue.\nWe provide access to collection of samples and data across the following diseases: \n•\tAlzheimer's disease (disorder),Asthma (disorder)\n•\tAtrial fibrillation and flutter (disorder)\n•\tCerebrovascular disease (disorder)\n•\tComplete trisomy 21 syndrome (disorder)\n•\tCongenital anomaly of brain (disorder)\n•\tDegenerative brain disorder (disorder)\n•\tDementia (disorder),Depressive disorder (disorder)\n•\tDiabetes mellitus type 1\n•\tDiabetes mellitus type 2,Epilepsy (disorder)\n•\tFit and well\n•\tHuntington's chorea (disorder)\n•\tIschemic heart disease (disorder)\n•\tJakob-Creutzfeldt disease (disorder)\n•\tMalignant neoplasm of brain\n•\tMalignant tumour of prostate (disorder)\n•\tMalignant tumour of urinary bladder (disorder)\n•\tMalignant tumour of breast\n•\tMalignant tumour of colon\n•\tMalignant tumour of lung\n•\tMalignant tumour of oesophagus\n•\tMalignant tumour of ovary\n•\tMotor neuron disease (disorder)\n•\tMultiple sclerosis (disorder)\n•\tMultiple system atrophy (disorder)\n•\tParkinson's disease (disorder)\n•\tProgressive supranuclear ophthalmoplegia (disorder)\n•\tPsychotic disorder (disorder)\n•\tSpinal muscular atrophy (disorder)\n•\tVascular dementia (disorder)"", 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",16445ebd-bd45-4ded-a7ae-05f33f676598,https://web.www.healthdatagateway.org/dataset/16445ebd-bd45-4ded-a7ae-05f33f676598,"{'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}, 'access': {'dataProcessor': 'Not Applicable', 'accessRequestCost': 'Not specified', 'accessRights': 'Please contact the publisher using Contact Point details provided.', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED.', 'jurisdiction': 'GB-ENG', 'dataController': 'Manchester University NHS Foundation Trust'}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}}","{'temporal': {'distributionReleaseDate': '2020-01-07', 'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2011-01-01'}}",2020-01-13T17:16:31Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:06:48Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Cambridge Blood and Stem Cell Biobank', 'doiName': 'Not Available', 'publisher': {'memberOf': 'ALLIANCE', 'contactPoint': 'CBSB_admin@medschl.cam.ac.uk', 'name': 'TISSUE DIRECTORY'}, 'keywords': ['UKCRC Tissue Directory', 'Cambridge Blood and Stem Cell Biobank', 'Disease', 'Hematologic neoplasm (disorder)', 'Leukaemia', 'Fit and well', 'Biobank'], 'contactPoint': 'CBSB_admin@medschl.cam.ac.uk', 'abstract': 'Collection of samples and data across the following diseases: Fit and well, Hematologic neoplasm (disorder),Leukaemia, disease'}",c51ab59a-33ce-4145-a642-7f3f96bca545,"{'typicalAgeRange': '0-4', 'spatial': 'England', 'physicalSampleAvailability': ['BONE MARROW', 'DNA', 'PERIPHERAL BLOOD CELLS', 'PLASMA', 'RNA', 'SERUM']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '052c61ff-091b-4589-b862-1e87180293c2', '3.0.0': '167cc04b-23b8-4a9e-9ff9-6c8e07d6a561', '1.0.0': '2db8b037-6c5b-4fa2-a721-95bfd092101f', '2.0.0': 'ae4f0589-8679-48a1-ad04-2324a5001869', 'latest': '167cc04b-23b8-4a9e-9ff9-6c8e07d6a561'}","{'description': 'Cambridge Blood and Stem Cell Biobank collects and curates blood and blood-product derived samples from normal individuals and patients with blood and related malignancies, with particular emphasis on accessibility to purified tumour and stem cell populations from these samples. Set up in 2009, by 2016 the bank already contains over 12,000 samples, 70% from patients enrolled on research studies and clinical trials, and the remainder from cord blood donors. We specialise in bespoke fresh specimen collections for research into clonal blood cell disorders, autoimmune disorders and normal blood cell development.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",167cc04b-23b8-4a9e-9ff9-6c8e07d6a561,https://web.www.healthdatagateway.org/dataset/167cc04b-23b8-4a9e-9ff9-6c8e07d6a561,"{'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}, 'access': {'accessRights': 'Please contact the publisher using Contact Point details provided', 'dataController': 'University of Cambridge', 'accessRequestCost': 'Not specified', 'dataProcessor': 'Not Applicable', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'jurisdiction': 'GB-ENG'}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}}","{'temporal': {'startDate': '2007-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:04:32Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T15:55:55Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': ""2019 UK Parkinson's Audit - Physiotherapy"", 'publisher': {'identifier': '60a630c77dd392a16e228a92', 'name': 'PARKINSONS UK', 'memberOf': 'ALLIANCE'}, 'abstract': ""The dataset contains data provided by physiotherapy services on the configuration of their service (service audit) and on the care provided to individual patients in connection with their Parkinson's (patient audit)."", 'contactPoint': 'audit@parkinsons.org.uk', 'keywords': ['Rehabilitation', 'physiotherapist']}",27690c58-a5da-4359-909a-8e19ff6ca463,"{'spatial': ['https://geonames.org/countries/GB/united-kingdom.html'], 'typicalAgeRange': '29-99', 'followup': '6 - 12 MONTHS', 'pathway': 'Single specialty - physiotherapy', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '16d40748-66f1-4fc3-bdb3-7c8103cadeb7'},"{'description': ""The UK Parkinson's Audit assesses care provided to people with Parkinson's by a range of clinical specialties against evidence-based guidelines.  \n\nThe physiotherapy audit includes services which provide care to people in connection with their Parkinson's. Services submit data on their model of service delivery and the assessments which are routinely carried out (service audit) and data on the care provided over the last 12 months to at least twenty of their consecutive patients seen during the five-month data collection period (patient audit). No patient identifiers are collected.\n\nThe audit is open to services across the UK - secondary care (non-acute) and community services. A service is self-defined and can consist of a single therapist or a group of therapists seeing the same cohort of patients. There can therefore be more than one service taking part in any Trust or setting.\n\nThe 2019 audit includes data from 153 physiotherapy services covering 2099 patient cases.\n\nThe data is available by UK Parkinson's Excellence Network region. The UK Parkinson's Excellence Network is a network of health and social care professionals working to improve Parkinson's services administered with support from Parkinson's UK. Professionals can join the Network to access resources, increase their knowledge of Parkinson's and collaborate with people affected by Parkinson's to transform health and care services.\n\nThe audit is the recognised quality improvement tool for the Excellence Network, providing an important baseline against which progress can be measured, informing national, regional and local service improvement priorities and plans to achieve better services for people living with the condition.\n\nThe regions are: \n\nEngland:\nCheshire and Merseyside\nEast of England\nEast Midlands\nGreater Manchester, Lancashire and South Cumbria\nLondon\nNorth East and Cumbria\nPeninsula\nSouth East Coast\nSouth West\nThames Valley\nWessex\nWest Midlands\nYorkshire and Humber\n\nScotland:\nNorth Scotland\nSouth and East Scotland\nWest Scotland\n\nNorthern Ireland:\nNorthern Ireland\n\nWales:\nNorth and Mid Wales\nSouth Wales\n\nOther:\nGuernsey\nIsle of Man\nRepublic of Ireland\n\nInformation about the regions can be found here:  https://www.parkinsons.org.uk/professionals/local-parkinsons-excellence-network-groups"", 'isPartOf': ""2019 UK Parkinson's Audit"", 'associatedMedia': ['https://www.parkinsons.org.uk/audit']}",16d40748-66f1-4fc3-bdb3-7c8103cadeb7,https://web.www.healthdatagateway.org/dataset/16d40748-66f1-4fc3-bdb3-7c8103cadeb7,"{'access': {'jurisdiction': ['GB-GB'], 'deliveryLeadTime': '2-4 WEEKS', 'accessRights': ['http://parkinsons.org.uk/HDRUK'], 'dataController': ""Parkinson's UK"", 'accessService': ""The audit team at Parkinson's UK will respond to all requests for access to this data within 5 working days""}, 'formatAndStandards': {'language': ['en'], 'format': ['Text'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL']}, 'usage': {'resourceCreator': [""Parkinson's UK""], 'dataUseLimitation': ['GENERAL RESEARCH USE']}}","{'temporal': {'distributionReleaseDate': '2020-01-31', 'timeLag': 'NOT APPLICABLE', 'endDate': '2019-09-30', 'accrualPeriodicity': 'STATIC', 'startDate': '2019-05-01'}, 'origin': {'purpose': ['AUDIT'], 'collectionSituation': ['OUTPATIENTS'], 'source': ['OTHER']}}",2021-10-15T12:55:45Z,"[{'observedNode': 'PERSONS', 'disambiguatingDescription': '2099 patient cases are included from 153 physiotherapy services', 'measuredValue': '2099', 'observationDate': '30/09/2019', 'measuredProperty': 'Count'}]",1.0.0,{'qualifiedRelation': ['All']},2021-10-15T12:55:45Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 2, 'structuralMetadata.tableName': 2, 'structuralMetadata.tableDescription': 2, 'structuralMetadata.dataElementsCount': 36, 'structuralMetadata.columnName': 36, 'structuralMetadata.columnDescription': 36, 'structuralMetadata.dataType': 36, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '7c486bfc-398a-4d91-ac55-14c2b6e47c13', 'description': ""Details of physiotherapy services providing care to patients in connection with their Parkinson's, their service model and routine practices"", 'name': 'Service audit', 'dataElementsCount': 17, 'dataElements': 'e012c800-a6ee-42d2-8403-1606aab8c3f2, f6ce9811-3910-401e-ab70-dcb15a937910, 6dd80269-bc56-479d-b33e-25a5a568aa90, 2bc5340f-0b13-4a39-84c5-b7aadc119007, 50f905e4-7c2c-4e82-8239-4e0d4574482f, 4f253f63-c526-4953-998a-f46966ff36c4, 91833e5c-6a29-4f0f-8df2-5289abef7e63, 6ae8b57d-c8db-4944-bc12-250c7c195228, 8e25d971-8db0-4f29-9b0b-00bc8bfc0eab, 2a151ab9-73e3-48f9-9a55-0fa05cdd7c91, d52913ad-f987-477d-ae87-dee598bce75f, b5b6d921-03ca-4e3f-ad47-2bcc01512d92, c351267e-7146-4510-9b9f-ad0f238b0b9c, 0413314e-c5fc-49a2-b6e1-a53d13808358, ff952e01-97aa-4f86-8e71-466ec3a6a36a, f1b6a1db-d57d-46d5-8b71-e7439bb9d6db, 7ca15c42-3381-4c76-a212-be7f32a7325e'}, {'id': 'a12b48b1-4e25-4da3-8f10-6f2f1204de68', 'description': ""Details of the care provided to individual Parkinson's patients over the past 12 months by their physiotherapy service"", 'name': 'Patient audit', 'dataElementsCount': 19, 'dataElements': '1553ad52-3dda-4075-b3be-48d207dea17a, 4638de8d-1479-4da2-926e-8650bd0fc713, 279b1b50-6ae7-477c-b9df-29a252865679, d18ccee1-792e-417e-983c-ffa1df62684d, 6e5e8e45-0972-4c5c-8d87-db5a8ca3134f, b2c1bc04-ebd7-4aa5-a128-cfcaaaab930c, 2ca2201b-3cb8-426d-8560-512c47eb4fa5, 0bb314fb-c20e-4fa8-bdbd-9bacba5eee88, 4dc10224-0e72-4f0a-9f9e-4ea40ca5f9bd, c05481c7-ed8c-4e9f-ba71-16ecb0dddc33, 7248ade0-13f6-4514-af3f-5e1ae9e6b93e, 4c8abb9c-ecec-4401-9b62-ce5e00893e40, e91a139f-e25c-4f7a-9816-d008298cfbf3, 0896b9a3-e984-4b8a-83c5-117163a2b147, ac806191-ac92-4af8-a13d-96acd7146c04, 6a503fab-c104-477b-b1fd-3aa373e5fb7b, 46eb443b-e43c-442d-9507-b22eeed24098, 62726e12-eb9d-46c1-a6d5-850e854a700f, c0d05324-4bb7-4cb4-a300-a09a79b08361'}]}"
"{'title': 'Suspected Cancer Pathway Daily (SPCD)', 'publisher': {'identifier': '5f3f98068af2ef61552e1d75', 'memberOf': 'ALLIANCE', 'name': 'SAIL'}, 'abstract': 'This dataset covers all patients informed they do not have cancer, or patients who started their first definitive treatment.', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'keywords': ['Anti-Cancer, Cancer, Treatment']}",9ea2f685-d6c2-49fe-a0e2-735910584d67,"{'typicalAgeRange': '18-120', 'pathway': 'Cancer', 'followup': 'OTHER', 'spatial': 'https://www.geonames.org/2634895/wales.html', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '16f11980-e2e7-4f79-8e33-39ba4dc3547f'},"{'description': 'This dataset covers all patients informed they do not have cancer, or patients who started their first definitive treatment.  Dataset provides context to cancer performance measures included in the NHS activity and performance release, and contains measures about the suspected cancer pathway.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://www.youtube.com/watch?v=ZK9-Jw3uVkw'], 'isPartOf': 'NOT APPLICABLE'}",16f11980-e2e7-4f79-8e33-39ba4dc3547f,https://web.www.healthdatagateway.org/dataset/16f11980-e2e7-4f79-8e33-39ba4dc3547f,"{'formatAndStandards': {'format': ['SQL Database Table'], 'language': ['en'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL']}, 'usage': {'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS'], 'resourceCreator': ['NWIS'], 'isReferencedBy': ['Not Available'], 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'USER SPECIFIC RESTRICTION', 'TIME LIMIT ON USE']}, 'access': {'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'dataController': 'SAIL Databank', 'dataProcessor': 'SAIL Databank', 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'accessRights': ['https://saildatabank.com/application-process/'], 'jurisdiction': ['GB-GB'], 'deliveryLeadTime': '2-6 MONTHS'}}","{'temporal': {'distributionReleaseDate': '2021-01-01', 'accrualPeriodicity': 'OTHER', 'startDate': '2021-01-01', 'timeLag': 'LESS 1 WEEK'}, 'origin': {'source': ['EPR'], 'collectionSituation': ['PRIMARY CARE', 'OTHER'], 'purpose': ['CARE']}}",2021-06-28T12:23:36Z,"[{'observedNode': 'PERSONS', 'measuredValue': '3000000', 'observationDate': '01/01/2021', 'measuredProperty': 'Count'}]",1.0.0,"{'tools': ['https://conceptlibrary.saildatabank.com/'], 'derivation': ['Not Available'], 'qualifiedRelation': ['ALL']}",2021-06-28T12:23:36Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 83, 'structuralMetadata.columnName': 83, 'structuralMetadata.columnDescription': 83, 'structuralMetadata.dataType': 83, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '46aa2fd6-55f3-4b31-b6e5-8791b682d153', 'name': 'SCP_DAILY', 'dataElementsCount': 83, 'dataElements': 'c60309b9-5582-4eea-bab4-cb7e42c89986, c950c699-ca64-42c4-8ee2-2f5c205b3b99, 9812d1da-92f6-4dbb-abcf-3cf65caa120d, 9c0faaf0-8959-47aa-a59b-8dd5395138b4, a5abb7fa-9800-4637-ad4a-b50209f86980, 2942c610-a562-4ba9-a6ed-0806961b6687, c4b77a9a-97ea-4ea3-8337-64b31bfb0cd2, 9b93c977-6468-4339-96c8-0ec1feb40002, 7149326e-348a-4579-81ce-9c3d7de3cc1d, d72bc55b-4e2b-4615-b5eb-d3b2620ab1f2, 60c07828-ef94-425e-9ca0-1b774b5c2ab3, b73dd691-74a9-40ce-a19c-de3d24a73f28, 73f901df-968b-4711-8afe-dede0eb00805, f63dfb66-7358-4e8e-9163-930c31d8207d, 61f95c80-ad38-42f4-8887-7f9705f2867c, df63eae3-c996-42a6-9cff-39bac0cea32d, ab3f1f10-de64-42bf-aaec-1a849545bd6e, a3b98f90-db1a-44ea-ad28-5a51499b2b1d, 41deda0c-e2b2-47af-b68a-1b2ed1eca537, 0b9d3937-4771-4cab-913b-c2f580a69dbb, ce38eb0a-fe48-463f-8890-3593eead342e, c16f4b2e-6c26-4256-9b22-a6730c2dce85, d7d09cdb-beb8-444c-9050-84c8983b0056, 60b64b6a-b946-41a5-bb14-4859f3c30178, 8ec37c87-38e2-431d-a9ee-e9e2e867e1bf, 76a2abeb-7ed7-4154-b0a5-8d3992f7656d, caa5b93a-d961-45a8-9b51-c0d867990cbe, 21685839-2d92-4c65-a97b-91174a0f8fb9, 0a7bcdd1-b3e3-461b-b212-22caefdf4bff, ba90aa22-25b2-4c18-ab0a-cbcd7f79e5e9, a113beb4-5d22-4bc7-b21f-812807cdc2cf, 2313993f-ed14-456e-b54f-ffcab62d0dd1, d126911c-1b97-42cc-817b-1106ca81c35d, f7bee532-14f1-497a-8414-aae43cfebe76, 85f09493-4f0d-4ce8-a7a5-e9c33a79f44d, e9b5f6ef-e357-43c0-8184-c0067ffa4c9d, 6224c908-e9a9-4169-a650-803a9eaf3ae6, 6da8b72a-ca36-412a-b629-ae868ba985ec, 79f1d9b6-388b-4d01-8212-56c52b8d5524, b7ce63dc-8b5a-4e67-92c6-cf2943c022f9, d5f8cd2c-2c5f-40a3-b377-bcf415202327, 8b27391d-b6e6-462f-a50a-1841c70e1ed9, 63337601-ab97-4f54-a143-e48a220b5e0e, 6b90801c-35c2-4b03-8421-4a571689813e, dd3695ce-ff84-4ee2-82f1-58950bb6ffb2, acc26410-56da-4b92-9d32-82da43a45b44, 6726a9c7-31ed-4904-aeec-8dfba74ed31b, df9d8e22-fd86-4ad3-95dc-fe8e90f09628, 37c569e6-0250-4aeb-acb7-cca4342bb7cf, 816ea19f-ce2b-44f1-b239-74a791ff74a2, 83bfc71d-bb6e-4874-9f92-28587bb7ba54, ced876e8-5e4a-416f-8a99-c1dd007f8e77, e521e382-f1ed-415a-ae30-4478b2e771f0, c7789280-1c5c-44d2-84cd-bc8ae25d313f, cc792e36-6a18-4215-bd73-ae9b16a5b65e, a33f9c54-0b30-42ad-94a3-ea2f001018e0, ac3daeab-327b-4785-9e36-bb4a516ee00b, 3220b7d5-ba6c-4c5f-a612-8b6d12203371, da672c2f-bb33-415e-99a4-6755b63910ed, 2d4ca4d2-217e-41f4-9cf4-20959211e865, 360b3d35-9bc7-4d94-af1c-dd5742d862b1, 81c27a61-29b5-41a2-86a5-e4f8c8e7d63e, 548275e3-5aca-4566-b596-ae8c7bfecf99, c3b11b8d-0ce7-422d-a486-1ea4653cad24, 5209b7a5-51d9-4b06-a673-7d8e86df73d6, 69b459a8-534b-4f0b-b055-83d73ad29b40, c6e177fd-ae21-4cd8-b3c9-cd041c80edcc, dd3e7635-48e8-41bf-8e0d-e0e2457aef05, 28d5a4e4-2cb5-4fba-bff6-bee277d31e86, b3938b8b-93b1-4ec1-ad5c-088d401907f9, fb2f6bdd-c3b1-4199-9379-287e1a471684, 13777ac9-7d8e-4593-ac6a-14df43c9e436, f2f72ac7-1b02-4e4b-9d4f-67ea08eaadba, 79c9e938-b9f8-4536-ba4a-7e979f25ebfc, 4e53a19c-d1f8-4082-81f5-4ff0747cd4ea, b135e9c0-d88e-422d-a95e-38d055796d8b, f6e50029-232e-4914-8dc0-cfa4b0fe0fef, 633dabea-6130-490b-8fc0-c25adb27e70f, 19cb877f-ab3c-4d45-a0a8-7cb302157e9c, f44c457a-8b97-4cd3-aceb-e0f70310e7ba, 48756c6b-6ab8-4ecb-912a-789b841d8627, ae02de9a-8b9e-4db5-80d8-9b072c576ba6, 1f2a015b-fa4b-4a4d-a2a9-e448939a9052'}]}"
"{'title': 'Demography', 'publisher': {'identifier': '607db9c4e1f9d3704d570d1f', 'memberOf': 'ALLIANCE', 'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE'}, 'abstract': 'Patient demographic data from the national CHI dataset.', 'contactPoint': 'hicsupport@dundee.ac.uk', 'keywords': ['Scotland', 'Demography', 'Tayside ', 'Fife']}",b88c2b24-b75d-4d28-9391-2dbac1605a17,"{'followup': 'UNKNOWN', 'pathway': 'ALL demographic records for Tayside and Fife', 'physicalSampleAvailability': ['NOT AVAILABLE', 'CANCER CELL LINES'], 'spatial': ['United Kingdom,Scotland'], 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '514018c0-86e8-4998-8460-bb99912281ae', '4.0.0': '177c34b4-b74a-406a-a73a-4250d1fb9c1b', '0.0.1': '9a063ff8-4473-4ad7-b588-0283911787ef', '2.0.0': '93ad5a26-65f5-438f-b4e3-9f7078cc2f92', '3.0.0': '7b0071f9-ca68-46b2-b7ad-bc9a70a9ea0b', 'latest': '177c34b4-b74a-406a-a73a-4250d1fb9c1b'}","{'description': 'Demographic data comes from the national CHI dataset, however only Tayside and Fife health boards can be extracted for HIC projects. Therefore the demography dataset contains a single record for each cohort, this record will be details for the most recent time the person was in either Tayside or Fife.  \n\nThis is the current or most recent record for each person, aiming for a single record per person.', 'isPartOf': 'University of Dundee Health Informatics Centre'}",177c34b4-b74a-406a-a73a-4250d1fb9c1b,https://web.www.healthdatagateway.org/dataset/177c34b4-b74a-406a-a73a-4250d1fb9c1b,"{'usage': {'dataUseRequirements': ['DISCLOSURE CONTROL'], 'resourceCreator': ['National Records Scotland'], 'dataUseLimitation': ['GEOGRAPHICAL RESTRICTIONS']}, 'formatAndStandards': {'conformsTo': ['LOCAL', 'HL7 CDA'], 'vocabularyEncodingScheme': ['LOCAL', 'SNOMED CT'], 'language': ['en', 'af'], 'format': ['Database']}, 'access': {'deliveryLeadTime': '2-4 WEEKS', 'jurisdiction': ['GB-SCT'], 'dataProcessor': 'University of Dundee, Health Informatics Centre', 'dataController': 'National Records Scotland', 'accessRights': ['https://www.dundee.ac.uk/hic/governanceservice/'], 'accessService': '""HIC has implemented a remote-access Trusted Research Environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details are available via the following link:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/""', 'accessRequestCost': ['Quotation available on request']}}","{'temporal': {'startDate': '1994-10-01', 'accrualPeriodicity': 'MONTHLY', 'timeLag': '2-4 WEEKS', 'distributionReleaseDate': '2022-01-31'}, 'origin': {'purpose': ['ADMINISTRATIVE', 'TRIAL'], 'collectionSituation': ['OTHER'], 'source': ['OTHER INFORMATION SYSTEM', 'LIMS']}}",2020-06-03T12:57:33Z,"[{'observedNode': 'PERSONS', 'measuredValue': '11707500', 'disambiguatingDescription': '11,707,500 persons in the dataset', 'observationDate': '31/01/2022', 'measuredProperty': 'Count'}, {'observedNode': 'EVENTS', 'measuredValue': '48634800', 'disambiguatingDescription': '48,634,800 events in the dataset', 'observationDate': '31/01/2022', 'measuredProperty': 'Count'}]",4.0.0,,2022-05-17T16:17:45Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 22, 'structuralMetadata.columnName': 22, 'structuralMetadata.columnDescription': 22, 'structuralMetadata.dataType': 22, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'cfff5aa0-a20e-4bee-941a-a8392c094776', 'description': 'Patient demographic data. 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For longitudinal demographics data (e.g. if you want to be able to track multiple residential periods within Tayside, i.e. entering and leaving then entering again), use the demography_healthboard_residence or demography_longitudinal.', 'name': 'Demography', 'dataElementsCount': 22, 'dataElements': '5be85951-e273-4b17-a96e-d15c27ead7fa, 3ff16e25-951b-4fd3-a8a1-e71b6cb4f172, 18921352-5353-4be8-b1cd-08e22fccdca8, af91a979-91e3-474b-a7ef-183cf8c4c3cd, fbdcc5a6-0881-47de-9afc-529f67a6a22f, e764a7ea-96d8-403f-9f56-8049bb3000a0, 9ea21904-ffbb-4f69-a63a-5a5e55ed9b90, 1c8470be-0ed7-4b2d-bfe9-3e1b452eec9f, 712be9c1-b9c5-48d8-b4eb-999d55d385f3, 5a9478e6-aeab-4d02-9808-13711f5f0c5a, 70ba6fc5-ae47-4475-b407-21e1f305d6eb, 22df0ad6-3516-4256-8fcc-04527ae09174, 78811303-a3dd-42aa-9d5f-e65155234957, a11c0a8d-43cc-471e-a09e-cca6084770aa, dd4d1ff5-858b-441b-8de9-62d7cb4711bd, 6c156bf8-c05c-4c35-984f-4f42d879e9dc, 0597f1e9-540d-42b6-892f-db502d18840a, 834435ea-bb30-4b9a-a06e-080aa255bb89, ffc84060-9e2c-442e-8680-941ac4768b88, 4be5cd68-7e75-4adb-966d-f32e830c5e42, d41dc6d8-7542-4ba0-a60b-bf79cca08a9a, 64314d99-0f60-46d6-8075-9c744bcef7ec'}]}"
"{'title': 'UHB 2019 Summer Society of Acute Medicine Benchmarking Audit', 'abstract': 'Society of Acute Medicine Audit data. Hospital patients. Granular care pathways against national guidelines. Severity, demographics, multi-morbidity, completion of review, interventions and treatments, outcomes. Patient flow through hospital. 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The aim of SAMBA19 is to describe the severity of illness of acute medical patients presenting to Acute Medicine within UK hospitals, speed of assessment, pathway and progress seven days after admission and to provide a comparison for each participating unit with the national average (or ‘benchmark’). On average >150 hospitals take part in this audit per year.\nSAMBA19 summer audit measured adherence to some of the standards for acute medical care. Acute Medical Units work 24-hours per day and 365 days a year. They are the single largest point of entry for acute hospital admissions and most patients are at their sickest within the first 24-hours of admission. \nThis dataset includes\n•\tTotal number of patients assessed by acute medicine across ED, AMU and Ambulatory Care. \n•\tMedical and nursing levels \n•\tSeverity of illness \n•\tTimeliness in processes of care \n•\tClinical outcomes 7 days after admission\nPIONEER geography\nThe West Midlands (WM) has a population of 5.9million & includes a diverse ethnic, socio-economic mix. There is a higher than average % of minority ethnic groups. WM has a large number of elderly residents but is the youngest population in the UK. There are particularly high rates of physical inactivity, obesity, smoking & diabetes. WM has a high prevalence of COPD, reflecting the high rates of smoking and industrial exposure. Each day >100,000 people are treated in hospital, see their GP or are cared for by the NHS. This is the SAMBA dataset from 4 NHS hospitals.\nEHR University Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & 100 ITU beds. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.\nScope: These data come from Queen Elizabeth Hospitals Birmingham, Good Hope Hospital, Solihull Hospital and Heartlands Hospital. All admissions in a  pre-defined 24-hour period, the severity of illness, patient demographics, co-morbidity, acuity scores, serial, structured data pertaining to care process (timings, staff grades, specialty review, wards) all prescribed & administered treatments (fluids, antibiotics, inotropes, vasopressors, organ support), all outcomes.  \nAvailable supplementary data:\nMore extensive data including granular serial physiology, bloods, conditions, interventions, treatments. Ambulance, 111, 999 data, synthetic data.\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services', 'associatedMedia': ['https://www.pioneerdatahub.co.uk/wp-content/uploads/Samba-infographic-winter-2020-V3-page-001-1216x1536.jpg', ''], 'isPartOf': 'Part of the SAMBA datasets'}",1785cc1a-ace0-4980-8352-5977b2b72969,https://web.www.healthdatagateway.org/dataset/1785cc1a-ace0-4980-8352-5977b2b72969,"{'access': {'accessRequestCost': 'https://www.pioneerdatahub.co.uk/data/data-services-costs/', 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'dataProcessor': 'Not Applicable', 'jurisdiction': 'GB', 'deliveryLeadTime': '1-2 MONTHS', 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust'}, 'usage': {'dataUseLimitation': 'RESEARCH USE ONLY', 'resourceCreator': 'This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)', 'isReferencedBy': ['https://www.acutemedicine.org.uk/samba-2019-national-report/'], 'investigations': ['https://www.acutemedicine.org.uk/wp-content/uploads/2019/05/Protocol-SAMBA19.pdf'], 'dataUseRequirements': 'PROJECT SPECIFIC RESTRICTIONS'}, 'formatAndStandards': {'language': 'en', 'conformsTo': 'LOCAL', 'vocabularyEncodingScheme': 'OTHER', 'format': ['SQL']}}","{'temporal': {'timeLag': 'LESS 1 WEEK', 'distributionReleaseDate': '2019-06-28', 'startDate': '2019-06-27', 'endDate': '2019-06-27', 'accrualPeriodicity': 'STATIC'}, 'origin': {'purpose': 'AUDIT', 'collectionSituation': ['ACCIDENT AND EMERGENCY', 'OUTPATIENTS', 'IN-PATIENTS'], 'source': 'EPR'}}",2021-01-21T12:03:25Z,"[{'observedNode': 'Events', 'measuredValue': 'Anonymous SAMBA dataset with total of 338 Patients', 'disambiguatingDescription': '', 'observationDate': '2019-06-27', 'measuredProperty': 'COUNT'}]",2.0.0,{'qualifiedRelation': ['Part of the SAMBA Datasets: https://www.acutemedicine.org.uk/samba/']},2021-02-17T17:14:22Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 41, 'structuralMetadata.columnName': 41, 'structuralMetadata.columnDescription': 41, 'structuralMetadata.dataType': 41, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '040f9652-7d0a-4f5e-b696-17dc226a4555', 'description': 'SAMBA 2019 audit', 'name': 'Samba19SummerUhbPatientData', 'dataElementsCount': 41, 'dataElements': 'b3e8cf97-8890-41d4-9285-64ea6ee133bf, c065749e-1c3f-4f78-924d-72f4c7417226, 60a50b42-5d4a-4d06-b1a1-cafd1abaa3d7, 503d9bf4-f4cd-4a97-848e-c91fa0dda433, c45745c6-b3bb-4ac0-ba17-7299744612f8, 45ae63a7-c83d-4102-a175-a16a3a45201f, 1b5e968f-85bc-48ea-9ad7-244fd89bfd5e, cf75370b-ce8f-4e69-a161-e4203395cf00, eba7f645-eac6-4970-bdc7-eb7f18009c30, a7e78153-f9b2-40a5-b110-617005d06890, 2d590c06-4121-481b-9d21-7dc33f18c006, c2166565-3333-42e6-99a9-963581fcabab, 95455103-f557-46d3-9c4a-2a61f8dccbda, 18c99dd6-0ca8-4727-bc39-7d1f872f81ec, c9f1a8cc-2e1f-4f8c-bb6f-ebf94e3c47c9, 1c83a64a-1e49-4c21-8ad4-fdfb5b0df900, 94d0b1b0-d3aa-4c7c-aa56-e13b2e74c2b2, acc8961c-fa81-47c4-b0a8-26f6b1d54b27, d4690c84-b3e0-483d-bd3d-c2d4cc07380f, 4eacdedf-1701-4663-808a-351f2decd1a5, f963995e-295c-42d3-b218-58a6545740e7, 9a9cfa96-49a3-495e-ad45-ad66b2779d44, 13400411-642c-45a7-8db4-c803a75853e9, e7fc3769-b27c-40a1-b7e0-30f9ceda8247, 2426c790-f548-4fb5-ace3-3d2b3504e6ad, b95e579e-70d6-43fe-98a0-6ac36b259f68, caefe883-2857-4600-b5ec-6c8cfeb2a568, 54fda7ee-4702-4089-a637-c55b26b928fb, 097f1465-4893-4773-bdaa-70d24d6e6315, 406fa77b-dc8f-4d66-b3b8-29cc11749887, 011a3c35-35c1-40d5-9403-2cbab6ece652, 37120581-5648-4c76-abd8-1e356a7e627e, 77ae2d5e-512d-4a8c-b186-f4725a7c537b, c53fa194-9f5a-4d3d-85bb-bc0f5885fdec, 60386f1a-43a8-43a6-8c7c-d6cc16708e7f, ecbf2580-6b63-4512-aaea-9999777e2c39, fc41c246-1141-4dc3-bdd1-3ed3d937b15a, 619639be-a331-45b0-bc6f-046f88e2f389, f1a6e0ff-e378-429b-885d-718e67a04b37, 9e277965-490f-4a8e-8a49-1c5dce012c18, af2a66aa-b581-4665-9201-ae7a6756006e'}]}"
"{'title': 'Rural-Urban classification for CPRD GOLD', 'keywords': ['Area level', 'Rural-Urban'], 'doiName': 'https://doi.org/10.48329/y101-0w14', 'publisher': {'identifier': '607db9c2e1f9d3704d570cee', 'memberOf': 'ALLIANCE', 'name': 'CPRD'}, 'contactPoint': 'enquiries@cprd.com', 'abstract': 'CPRD GOLD linked Rural-Urban classification data differentiate between rural and urban areas at the small area level, mapped to the postcode of the GP practice or patient.'}",a7d8c6a8-0825-4e73-8f29-3d76194d7114,"{'spatial': ['https://www.geonames.org/2635167/united-kingdom.html'], 'typicalAgeRange': '0-115', 'followup': 'OTHER', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'4.0.0': 'a53b2f7a-c4a6-4914-9adb-17946c58afad', '5.0.0': '17c58f15-93ab-4239-b05a-6b9ea82f6f37', '3.0.0': '1841e7c9-39e1-4eff-9d2f-da3dede71f86', '2.0.0': '1319d5c2-2e8c-4dc9-ab41-a80acb8bf575', '1.0.0': 'd0691ce7-7112-44dc-8022-98c712ace8df', '0.0.1': 'cfbd1aa0-ec75-4292-8e5c-a297b9c17297', 'latest': '17c58f15-93ab-4239-b05a-6b9ea82f6f37'}","{'description': 'CPRD GOLD linked Rural-Urban classification data differentiate between rural and urban areas at the small area level. It may be important to distinguish between rural and urban areas when investigating differences in social and economic characteristics of small areas. Populations can vary in their composition between urban and rural areas, as can access to services, employment and educational opportunities, and quality of life. \nThe measures available for patient (England only) and practice postcode\xa0are: 2011 England and Wales Rural-Urban classification; 2015 Northern Ireland Rural-Urban classification; 2016 Scottish Rural-Urban classification.', 'isPartOf': 'CPRD GOLD', 'associatedMedia': ['https://www.cprd.com/linked-data']}",17c58f15-93ab-4239-b05a-6b9ea82f6f37,https://web.www.healthdatagateway.org/dataset/17c58f15-93ab-4239-b05a-6b9ea82f6f37,"{'access': {'accessService': 'Access to CPRD data, including UK Primary Care Data, and linked data such as Hospital Episode Statistics, is subject to protocol approval via CPRD’s Research Data Governance (RDG) Process. Independent scientific and patient advice is provided by Expert Review Committees (ERCs) and the Central Advisory Committee (CAC): https://www.cprd.com/research-applications', 'accessRequestCost': ['https://www.cprd.com/pricing'], 'deliveryLeadTime': 'VARIABLE', 'dataProcessor': 'CPRD', 'dataController': 'Clinical Practice Research Datalink (CPRD)', 'accessRights': ['HTTPS://CPRD.COM/DATA-ACCESS'], 'jurisdiction': ['GB-GBN']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['OTHER'], 'format': ['Tab delimited text'], 'language': ['en'], 'conformsTo': ['OTHER']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE', 'NO LINKAGE', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'dataUseRequirements': ['GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'investigations': ['https://www.cprd.com/protocol-list'], 'isReferencedBy': ['[]']}}","{'temporal': {'endDate': '2022-02-07', 'accrualPeriodicity': 'QUARTERLY', 'distributionReleaseDate': '2022-02-04', 'timeLag': 'NOT APPLICABLE', 'startDate': '1987-01-01'}, 'origin': {'source': ['OTHER'], 'collectionSituation': ['OTHER'], 'purpose': ['OTHER']}}",2020-01-10T18:12:18Z,"[{'observedNode': 'PERSONS', 'measuredValue': 10559390, 'disambiguatingDescription': 'Number of CPRD GOLD patients eligible for postcode linkage', 'observationDate': '04/02/2022', 'measuredProperty': 'Count'}]",5.0.0,"{'derivation': ['N/A'], 'qualifiedRelation': ['CPRD GOLD', 'CPRD GOLD SGSS', 'CPRD GOLD CHESS', 'CPRD GOLD ICNARC', 'Death Registration data for CPRD GOLD', 'HES Admitted Patient Care data for CPRD GOLD', 'HES Outpatient data for CPRD GOLD', 'HES Accident and Emergency data for CPRD GOLD', 'HES Diagnostic Imaging Dataset for CPRD GOLD', 'Patient postcode linked deprivation measures for CPRD GOLD', 'Practice postcode linked deprivation measures for CPRD GOLD', 'Cancer registration data for CPRD GOLD', 'National Radiotherapy Dataset (RTDS) for CPRD GOLD', 'Systemic Anti-Cancer Treatment (SACT) data for CPRD GOLD', 'Mental Health Dataset (MHDS) for CPRD GOLD', 'Mother-Baby Link for CPRD GOLD', 'Pregnancy Register for CPRD GOLD'], 'tools': ['[]']}",2022-02-18T11:57:27Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 2, 'structuralMetadata.tableName': 2, 'structuralMetadata.tableDescription': 2, 'structuralMetadata.dataElementsCount': 9, 'structuralMetadata.columnName': 9, 'structuralMetadata.columnDescription': 9, 'structuralMetadata.dataType': 9, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'df7dc722-44e3-46d6-ba01-7260dc4659ae', 'description': 'England and Wales Rural Urban Classification (2011 LSOA boundaries)', 'name': 'Patient', 'dataElementsCount': 3, 'dataElements': '8e965e41-d089-4942-aa5e-b66cb138c9f7, 9be4f2ce-c24c-4f29-a878-85b833678bed, fd30636b-8637-4d4f-acb8-513b606ac91d'}, {'id': '10c77e66-aa07-4f8f-81f0-b1c3c2d9b5cf', 'description': 'Rural Urban Classification (2011 LSOA boundaries)', 'name': 'Practice', 'dataElementsCount': 6, 'dataElements': 'eb3da605-fea7-4334-aac4-54cad70d02a3, 3c53361b-c76a-4b7a-8652-cc641a599142, fdf76658-f8f8-470e-ab94-5872fc6e2e23, 12ac217f-675e-4756-91bb-cd1674a3ee1c, 7b751ac0-7bbe-4188-830a-18fcc5366dc4, ed5e3ef3-472d-4187-be38-0e5f62649163'}]}"
"{'title': 'IoN Trial', 'publisher': {'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE', 'contactPoint': 'ctc.ion@ucl.ac.uk'}, 'keywords': ['Trial', 'Malignant tumour of thyroid gland (disorder)', 'IoN', 'UKCRC Tissue Directory'], 'contactPoint': 'ctc.ion@ucl.ac.uk', 'doiName': 'Not Available', 'abstract': 'Collection of samples and data across the following diseases: Malignant tumour of thyroid gland (disorder).'}",e10a660d-b84c-475f-abd4-024dd1af7a5d,"{'spatial': 'England', 'physicalSampleAvailability': ['IN PROGRESS'], 'typicalAgeRange': 'Not Known'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '9a5d00a1-1c45-4919-94d5-bdaf62dbcf23', '3.0.0': '17cd75a2-e2b5-440c-89b1-22c9f3b03a03', '2.0.0': '2a5d2a42-803c-4c96-bcd6-a4289d2b664a', '1.0.0': 'a567adb5-c4a6-4c3b-b0cc-51d56ab1886b', 'latest': '17cd75a2-e2b5-440c-89b1-22c9f3b03a03'}","{'description': 'IoN is a multicentre phase II/III asking is ablative radioiodine necessary for low risk differentiated thyroid cancer patients. \n560 patients will be recruited and randomised 1:1 to receive radioiodine ablation or no ablation. \nSamples collected during trial: Stimulated Tg blood samples for patients taken at the treatment visit, 2 months post treatment, 6-9 months post treatment and every 6 months thereafter for 5 years.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",17cd75a2-e2b5-440c-89b1-22c9f3b03a03,https://web.www.healthdatagateway.org/dataset/17cd75a2-e2b5-440c-89b1-22c9f3b03a03,"{'access': {'accessRequestCost': 'Not specified', 'jurisdiction': 'GB-ENG', 'dataProcessor': 'Not Applicable', 'accessRights': 'Please contact the publisher using Contact Point details provided.', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'dataController': 'University College London'}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}, 'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}}","{'temporal': {'startDate': '2012-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:05:22Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:03:06Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'CPRD GOLD', 'publisher': {'identifier': '607db9c2e1f9d3704d570cee', 'memberOf': 'ALLIANCE', 'name': 'CPRD'}, 'keywords': ['CPRD GOLD', 'Primary care'], 'doiName': 'https://doi.org/10.48329/kxsp-t315', 'contactPoint': 'enquiries@cprd.com', 'abstract': 'CPRD GOLD contains primary care data contributed by GP practices using Vision® software including patient registration information and all care events that GPs have chosen to record as part of their usual medical practice.'}",a29feafa-7bdd-44e9-b977-c9d26425e67f,"{'followup': '1 - 10 YEARS', 'spatial': ['https://www.geonames.org/countries/GB/united-kingdom.html'], 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Primary care'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '988aa982-bb0a-4a60-946b-0d77dc71ca6b', '6.0.0': '185c4410-cea3-4bac-a192-1e1dd8842872', '2.0.0': '756daeaa-6e47-4269-9df5-477c01cdd271', '0.0.1': '8503bf7a-0c2e-41df-a1aa-9da055e22791', '4.0.0': '947b9519-3432-4ced-91d7-a88cfb839838', '3.0.0': '4d0f0156-8109-4100-868c-06a17495a024', '5.0.0': 'b41215cd-afe1-4463-9786-ed86812143e2', 'latest': '185c4410-cea3-4bac-a192-1e1dd8842872'}","{'description': 'CPRD GOLD contains primary care data contributed by GP practices using Vision® software including patient registration information and all care events that GPs have chosen to record as part of their usual medical practice.', 'isPartOf': 'CPRD GOLD', 'associatedMedia': ['https://www.cprd.com/primary-care']}",185c4410-cea3-4bac-a192-1e1dd8842872,https://web.www.healthdatagateway.org/dataset/185c4410-cea3-4bac-a192-1e1dd8842872,"{'access': {'deliveryLeadTime': 'VARIABLE', 'accessService': 'Access to CPRD data, including UK Primary Care Data, and linked data such as Hospital Episode Statistics, is subject to protocol approval via CPRD’s Research Data Governance (RDG) Process. 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"{'title': 'GENOMICS ENGLAND 100K BIOINFORMATICS DATA', 'publisher': {'memberOf': 'ALLIANCE', 'contactPoint': 'gecip-help@genomicsengland.co.uk', 'name': 'GENOMICS ENGLAND'}, 'doiName': 'Not Available', 'abstract': 'Contains tables with data related to genomic data and the outputs from the GEL interpretation pipeline data for participants from both cancer and rare disease programmes. These tables do not directly include primary + secondary sources of clinical data.', 'contactPoint': 'gecip-help@genomicsengland.co.uk', 'keywords': ['sequencing', 'genomics', 'data', 'DNA', 'DATA-CAN']}",98999c67-0133-4f11-be95-b84ee5727c84,"{'spatial': 'England, UK', 'physicalSampleAvailability': ['DNA'], 'followup': 'OTHER', 'pathway': 'Linked datasets cover secondary care.', 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '7c9f9620-8f18-4e2d-bda0-a3a6f46756b6', '2.0.0': '1900af1a-bd21-4157-ac48-203eec682073', '0.0.1': '0013c2ac-b3a1-489d-9518-4345eccc1196', 'latest': '1900af1a-bd21-4157-ac48-203eec682073'}","{'description': 'To identify and enrol participants for the 100,000 Genomes Project we have created NHS Genomic Medicine Centres (GMCs). Each centre includes several NHS Trusts and hospitals. GMCs recruit and consent patients. They then provide DNA samples and clinical information for analysis.\n\nIllumina, a biotechnology company, have been commissioned to sequence the DNA of participants. They return the whole genome sequences to Genomics England. We have created a secure, monitored, infrastructure to store the genome sequences and clinical data. The data is analysed within this infrastructure and any important findings, like a diagnosis, are passed back to the patient’s doctor.\n\nTo help make sure that the project brings benefits for people who take part, we have created the Genomics England Clinical Interpretation Partnership (GeCIP). GeCIP brings together funders, researchers, NHS teams and trainees. They will analyse the data – to help ensure benefits for patients and an increased understanding of genomics. The data will also be used for medical and scientific research. This could be research into diagnosing, understanding or treating disease.\n\nFind out more\n\nTo learn more about how we work you can read the 100,000 Genomes Project protocol. It has details of the development, delivery and operation of the project. It also sets out the patient and clinical benefit, scientific and transformational objectives, the implementation strategy and the ethical and governance frameworks.', 'associatedMedia': ['https://cnfl.extge.co.uk/display/GERE/Genomics+England+Research+Environment', 'https://cb.extge.co.uk/labkey/CohortBrowser/project-begin.view?pageId=Introduction', 'https://youtu.be/Kie3HY8y6AU', 'https://youtu.be/EAjPVcAlGpM', 'https://youtu.be/5QhNjE_hdsQ'], 'isPartOf': '100K Primary Data'}",1900af1a-bd21-4157-ac48-203eec682073,https://web.www.healthdatagateway.org/dataset/1900af1a-bd21-4157-ac48-203eec682073,"{'formatAndStandards': {'language': ['en'], 'format': ['Multiple Formats Available'], 'vocabularyEncodingScheme': ['OTHER'], 'conformsTo': ['OTHER']}, 'usage': {'isReferencedBy': ['https://www.genomicsengland.co.uk/about-gecip/publications/'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['ETHICS APPROVAL REQUIRED', 'PROJECT SPECIFIC RESTRICTIONS', 'PUBLICATION MORATORIUM'], 'resourceCreator': 'The 100,000 Genomes Project Protocol v3, Genomics England. doi:10.6084/m9.figshare.4530893.v3. 2017.\nPublications that use the Genomics England Database should include an author as: Genomics England Research Consortium. Please see publication policy.', 'investigations': ['https://research.genomicsengland.co.uk/research-registry/browse/']}, 'access': {'jurisdiction': ['GB'], 'dataProcessor': 'GENOMICS ENGLAND', 'dataController': 'GENOMICS ENGLAND', 'accessRights': ['https://www.genomicsengland.co.uk/about-gecip/joining-research-community/'], 'deliveryLeadTime': '2-6 MONTHS', 'accessRequestCost': 'Fees will be dependent on the type of access that is necessary. Raw data is not eligible for export. Summary-level data may be exported provided that it is approved through the Genomics England Airlock Process', 'accessService': 'More information about the Genomics England Research Environment can be found here:\nhttps://www.genomicsengland.co.uk/about-genomics-england/research-environment/\nhttps://research-help.genomicsengland.co.uk/display/GERE/1.+The+Genomics+England+Research+Environment\nGenomics England 100k participants have consented to longitudinal lifetime followup and recontact safely through our clinical network.\nBRST (Bioinformatics Research Services) are a team of bioinformatics who know the dataset inside out and provide consultancy projects on a case by case basis.  \nOur network of clinical and medical experts can be made available on case by case basis.\nResearchers have the opportunity to work with our and access the GeCIP network who are a community of world-leading experts in specific cancers and rare diseases.'}}","{'origin': {'source': ['MACHINE GENERATED'], 'collectionSituation': ['CLINIC'], 'purpose': ['STUDY', 'DISEASE REGISTRY', 'CARE']}, 'temporal': {'startDate': '2014-01-01', 'accrualPeriodicity': 'QUARTERLY', 'endDate': '2019-01-01', 'distributionReleaseDate': '2020-09-03', 'timeLag': 'NOT APPLICABLE'}}",2020-04-07T11:39:40Z,"[{'observedNode': 'Persons', 'measuredValue': '71,800', 'disambiguatingDescription': 'Rare Disease Participants', 'observationDate': '2020-09-03', 'measuredProperty': 'Count'}, {'observedNode': 'Persons', 'measuredValue': '17,339', 'disambiguatingDescription': 'Cancer Participants', 'observationDate': '2020-09-03', 'measuredProperty': 'Count'}, {'observedNode': 'Findings', 'measuredValue': '17,891', 'disambiguatingDescription': 'Cancer Germline - Number of genomes', 'observationDate': '2020-09-03', 'measuredProperty': 'Count'}, {'observedNode': 'Findings', 'measuredValue': '19,333', 'disambiguatingDescription': 'Cancer Tumour - Number of genomes', 'observationDate': '2020-09-03', 'measuredProperty': 'Count'}, 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"{'title': 'Improving Access to Psychological Therapies Data Set', 'keywords': [' Depression', 'Anxiety', 'CBT', 'Counselling', 'Talking theraphy', 'Cognitive', 'National Core Study', 'NCS'], 'abstract': 'Patient-level data set that captures information about people in contact with services commissioned as part of the adult Improving Access to Psychological Services (IAPT) programme.', 'contactPoint': 'enquiries@nhsdigital.nhs.uk', 'publisher': {'identifier': '5f86cd34980f41c6f02261f4', 'name': 'NHS DIGITAL', 'memberOf': 'ALLIANCE'}}",bcf6e5ce-986d-4b84-9c9c-69de966e8bbd,"{'spatial': 'https://www.geonames.org/6269131/england.html', 'followup': '0 - 6 MONTHS', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '18-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'a7b56c3d-e55e-4e57-bdc2-490b537f87fb', '3.0.0': '19525c5f-92ee-41b6-bb79-673624b27bdd', '0.0.1': 'cef00323-8756-4ea5-99e4-f12dcb2c6297', '2.0.0': '3e46fa19-1ee7-4570-8fe4-708de2efe01f', 'latest': '19525c5f-92ee-41b6-bb79-673624b27bdd'}","{'description': ""Collecting information about people in contact with adult psychological therapy services in England. The IAPT data set was developed with the IAPT programme as a patient level, output based, secondary uses data set which aims to deliver robust, comprehensive, nationally consistent and comparable information for patients accessing NHS-funded IAPT services in England. This national data set has been collected since April 2012 and is a mandatory submission for all NHS funded care, including care delivered by independent sector healthcare providers. Data collection on patients with depression and anxiety disorders that are offered psychological therapies, so that we can improve the delivery of care for these conditions.\n\nProviders of NHS-funded IAPT services are required to submit data to NHS Digital on a monthly basis.\n\nAs a secondary uses data set the IAPT data set re-uses clinical and operational data for purposes other than direct patient care. It defines the data items, definitions and associated value sets extracted or derived from local information systems and sent to NHS Digital for analysis purposes. Timescales for dissemination can be found under 'Our Service Levels' at the following link: https://digital.nhs.uk/services/data-access-request-service-dars/data-access-request-service-dars-process"", 'isPartOf': 'mental health', 'associatedMedia': ['https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-sets/improving-access-to-psychological-therapies-data-set', 'https://digital.nhs.uk/about-nhs-digital/corporate-information-and-documents/directions-and-data-provision-notices/data-provision-notices-dpns/improving-access-to-psychological-therapies-data-set-data-provision-notice']}",19525c5f-92ee-41b6-bb79-673624b27bdd,https://web.www.healthdatagateway.org/dataset/19525c5f-92ee-41b6-bb79-673624b27bdd,"{'usage': {'isReferencedBy': [' '], 'resourceCreator': ['NHS DIGITIAL'], 'investigations': ['https://digital.nhs.uk/services/data-access-request-service-dars/register-of-approved-data-releases'], 'dataUseLimitation': ['NO RESTRICTION'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE']}, 'access': {'jurisdiction': ['GB-ENG'], 'accessRequestCost': ['https://digital.nhs.uk/services/data-access-request-service-dars/data-access-request-service-dars-charges'], 'dataController': 'NHS DIGITAL', 'accessRights': ['https://digital.nhs.uk/services/data-access-request-service-dars'], 'deliveryLeadTime': 'OTHER', 'accessService': 'Once your DARS application has been approved, data will be made available either by secure file transfer or through the Data Access Environment (DAE). BL\n\nSecure file transfer: https://digital.nhs.uk/services/transfer-data-securely\n\nDAE: https://digital.nhs.uk/services/data-access-environment-dae'}, 'formatAndStandards': {'language': ['en'], 'format': ['CSV'], 'vocabularyEncodingScheme': ['ODS', 'SNOMED CT', 'NHS NATIONAL CODES', 'ICD10'], 'conformsTo': ['NHS DATA DICTIONARY']}}","{'temporal': {'accrualPeriodicity': 'MONTHLY', 'timeLag': '2-6 MONTHS', 'startDate': '2012-04-01'}, 'origin': {'collectionSituation': ['COMMUNITY', 'PRIMARY CARE'], 'purpose': ['OTHER', 'ADMINISTRATIVE'], 'source': ['EPR']}}",2020-10-23T14:45:07Z,"[{'observedNode': 'EVENTS', 'measuredValue': '114125', 'disambiguatingDescription': 'In December 2020 there were 114,125 referrals made into IAPT services in England.', 'observationDate': '25/02/2021', 'measuredProperty': 'COUNT'}, {'observedNode': 'EVENTS', 'measuredValue': '81578', 'disambiguatingDescription': 'In December 2020, 81,578 referrals into IAPT services in England started a course of treatment.', 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"{'title': 'COVID-19 Consolidated Deaths (CDDS)', 'abstract': 'COVID-19 Consolidated Deaths dataset. 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Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'accessRights': ['https://saildatabank.com/application-process/'], 'dataController': 'SAIL Databank', 'dataProcessor': 'SAIL Databank'}, 'usage': {'resourceCreator': ['NHS Wales’ Informatics Service (NWIS)'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'isReferencedBy': ['Lyons, J., Akbari, A., Torabi, F., Davies, G. 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BMJ open, 10(10), e043010. https://doi.org/10.1136/bmjopen-2020-043010'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'format': ['SQL database table'], 'language': ['en']}}","{'temporal': {'distributionReleaseDate': '2020-04-29', 'timeLag': 'NO TIMELAG', 'accrualPeriodicity': 'DAILY', 'endDate': '2021-08-02', 'startDate': '2019-01-01'}, 'origin': {'source': ['OTHER'], 'purpose': ['ADMINISTRATIVE'], 'collectionSituation': ['OTHER']}}",2021-09-27T13:14:58Z,"[{'observedNode': 'PERSONS', 'measuredValue': '44482', 'disambiguatingDescription': 'COVID-19 Consolidated Deaths dataset. 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"{'title': '3CN (Cirrhosis Cohort)', 'contactPoint': 'neil.guha@nottingham.ac.uk', 'publisher': {'name': 'UNIVERSITY OF NOTTINGHAM', 'memberOf': 'ALLIANCE', 'identifier': '607db9c6e1f9d3704d570d93'}, 'abstract': 'A Prospective, observational, single centre cohort study of patients with compensated cirrhosis. Patients have been longitudinally followed for the development of clinical outcomes and have serial bio-samples and some detailed imaging including MRI data.', 'keywords': ['biomarkers', 'cirrhosis']}",2fea047c-ae65-43d5-a1e3-43447981c165,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '18-75', 'pathway': 'Single centre study', 'followup': '> 10 YEARS', 'spatial': ['United Kingdom,England,East Midlands,Nottingham']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '1a2ecd43-745f-4a67-acd6-27023f1f9c5b'},"{'description': 'A Prospective, observational, single centre cohort study of patients with compensated cirrhosis', 'isPartOf': 'NOT APPLICABLE'}",1a2ecd43-745f-4a67-acd6-27023f1f9c5b,https://web.www.healthdatagateway.org/dataset/1a2ecd43-745f-4a67-acd6-27023f1f9c5b,"{'access': {'deliveryLeadTime': 'VARIABLE', 'dataController': 'Professor Neil Guha', 'jurisdiction': ['GB'], 'dataProcessor': 'N/A', 'accessRights': ['In Progress']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['NHS NATIONAL CODES'], 'language': ['en'], 'format': ['MRI'], 'conformsTo': ['HL7 FHIR']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['National Institute for Health Research, National Health Service']}}","{'origin': {'collectionSituation': ['OUTPATIENTS'], 'purpose': ['TRIAL'], 'source': ['OTHER']}, 'temporal': {'accrualPeriodicity': 'IRREGULAR', 'startDate': '2010-01-04', 'timeLag': 'VARIABLE'}}",2022-03-11T13:08:42Z,"[{'observedNode': 'PERSONS', 'measuredValue': '257', 'disambiguatingDescription': 'Cirrhosis', 'observationDate': '04/01/2010', 'measuredProperty': 'Count'}]",1.0.0,,2022-03-11T13:08:42Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'UK real-world lymphoid tissue bank', 'publisher': {'contactPoint': 'f.forconi@soton.ac.uk', 'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY'}, 'abstract': 'Collection of samples and data across the following diseases: Malignant lymphoma (disorder)', 'keywords': ['Bank', 'UKTB', 'UKCRC Tissue Directory', 'Lymphoid Tissue', 'Real-world', 'Malignant lymphoma (disorder)', 'UK'], 'contactPoint': 'f.forconi@soton.ac.uk', 'doiName': 'Not Available'}",c9f82f86-79e1-4067-932f-5e6dc939006d,"{'typicalAgeRange': '40-150', 'physicalSampleAvailability': ['PERIPHERAL BLOOD CELLS', 'PLASMA', 'SERUM'], 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '368bf1c9-ff86-4eca-8094-bf2e109cee59', '3.0.0': '1a412ff0-6275-4cab-a485-bb76befc7afe', '1.0.0': '6c7bcf02-b725-48d9-8bb0-1d276665d86f', '2.0.0': '62b17ee5-97e3-468e-ba48-e8685ea28461', 'latest': '1a412ff0-6275-4cab-a485-bb76befc7afe'}","{'description': 'The UK real-world lymphoid malignancies tissue Bank (UKTB) provides a national and international resource for research on lymphomas and other lymphoproliferative disorders including chronic lymphocytic leukaemia. This Research Tissue Bank was set up in 2014 and given favourable ethical opinion (REC ref: 14/SC/0030). The samples are stored in the HTA licenced Faculty of Medicine Tissue Bank. The RTB currently holds matched normal and malignant frozen material from ~900 patients. The samples collected can be associated with clinical diagnostic details and outcome endpoint, which can be readily informative to patient prognosis.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",1a412ff0-6275-4cab-a485-bb76befc7afe,https://web.www.healthdatagateway.org/dataset/1a412ff0-6275-4cab-a485-bb76befc7afe,"{'access': {'dataController': 'University Hospital Southampton Trust', 'accessRequestCost': 'Not specified', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'jurisdiction': 'GB-ENG', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'dataProcessor': 'Not Applicable'}, 'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'distributionReleaseDate': '2019-01-30', 'startDate': '2017-01-01'}}",2020-01-13T17:14:18Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:16:28Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Cystic Fibrosis Patient CFQ-R', 'doiName': '10.1093/ije/dyx196', 'publisher': {'name': 'CYSTIC FIBROSIS TRUST', 'memberOf': 'ALLIANCE', 'contactPoint': 'registry@cysticfibrosis.org.uk'}, 'contactPoint': 'registry@cysticfibrosis.org.uk', 'keywords': ['cystic fibrosis'], 'abstract': ""The UK Cystic Fibrosis Registry CFQ-R is made up of many data items relating to the quality of life tool 'Cystic Fibrosis Questionnaire - Revised' captured for CF patients.""}",9cf5dbd3-a109-4e8d-b1bb-7e4126bd887f,"{'spatial': 'UK', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': 'cdf528da-345c-4fda-92c9-fb4dff68514e', '4.0.0': '1a4b65e9-5241-4081-9cbb-43a8c8c6ea3b', '3.0.0': '8881192f-ffdf-4917-be80-e7daab9a0ca2', '1.0.0': '48e1ee09-4dcb-40ce-8236-b64ce7f92aad', '0.0.1': 'af70ba31-8e5d-4174-88fb-b90cadf10845', 'latest': '1a4b65e9-5241-4081-9cbb-43a8c8c6ea3b'}","{'description': ""The UK CF Registry is a centralised database of all 60 CF centres across the UK. Data are manually entered  in calendar years by CF clinical teams for the 99% of people with a diagnosis of CF who consent to their data being donated to the Registry. Data are entered onto a secure web-portal. For more information please see www.cysticfibrosis.org.uk/registry and 'Data Resource Profile: The UK CF Registry' published in the International Journal of Epidemiology (2018 Feb 1;47(1)9-10e)."", 'isPartOf': 'No Group'}",1a4b65e9-5241-4081-9cbb-43a8c8c6ea3b,https://web.www.healthdatagateway.org/dataset/1a4b65e9-5241-4081-9cbb-43a8c8c6ea3b,"{'access': {'deliveryLeadTime': '16 WEEKS (8 WEEKS FOR COMMITTEE DECISION AND 8 WEEKS FOR DATA EXTRACTION AND PROCESSING)', 'accessRights': 'https://www.cysticfibrosis.org.uk/the-work-we-do/uk-cf-registry/apply-for-data-from-the-uk-cf-registry', 'accessRequestCost': 'Whilst the UK CF Registry does not charge for data, it must recoup costs of data handling (including extract and cleaning), project management, and analysis (where applicable) on behalf of third parties. The charging structure outlined below is designed to be fair, proportionate, and transparent whilst furthering the Registry’s aim of stimulating research use of the data for the benefit of people with cystic fibrosis.\n \nhttps://www.cysticfibrosis.org.uk/the-work-we-do/uk-cf-registry/apply-for-data-from-the-uk-cf-registry', 'jurisdiction': 'GB', 'dataController': 'Cystic Fibrosis Trust', 'dataProcessor': 'Cystic Fibrosis Trust'}, 'formatAndStandards': {'language': ['en'], 'format': ['csv'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL']}, 'usage': {'isReferencedBy': [""'Data Resource Profile: The UK CF Registry' published in the International Journal of Epidemiology (2018 Feb 1;47(1)9-10e)""], 'resourceCreator': 'Cystic Fibrosis Trust'}}","{'temporal': {'distributionReleaseDate': '2020-02-15', 'endDate': '2020-02-15', 'accrualPeriodicity': 'ANNUAL', 'startDate': '2020-01-01'}}",2020-04-27T11:27:26Z,,4.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['All our datasets are linked by a common identifier. No external linkages.']}",2021-02-21T15:22:02Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 30, 'structuralMetadata.columnName': 30, 'structuralMetadata.columnDescription': 1, 'structuralMetadata.dataType': 30, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '91ba86ea-c0bd-4c02-ab42-d48ff6f548d7', 'name': 'CFQR', 'dataElementsCount': 30, 'dataElements': '965fd25e-0506-4ac4-a84b-b6f908ad27aa, 444d3adc-68ed-4b03-9b68-823d4fdc1c7a, 28635282-4441-4fe2-9264-77bff9536b0a, c0f1aee6-0c7c-4af1-a33c-346c22bfc789, bee9c33e-3a26-42f5-b4e7-bb871aaaf9ed, 6d8b4913-b515-430e-842d-86430fe12fac, 2d918320-b381-449c-9b79-9481aad4a309, 082a53de-e0af-4cd3-a75f-5a12433ebc50, 3f150062-29c1-4a5b-83a2-73ba5417a35f, 95afe38e-f676-49a8-943c-95d2fe2c24e7, 5560ffb9-4b71-493b-93d9-039ccc56318f, 3c9f5c46-a3b9-4f39-b9e8-5819ac6bb7bb, b11773a8-97c3-482e-b9d3-264183301cf0, 40fb1470-e5ba-43ae-8fea-6aa142ec97aa, adc9b000-01f5-4377-8abb-f84fe3dc5cb4, db319e84-fab6-46e8-b05e-0d8b347f6c69, 224097d8-2951-46fa-bbf8-7ab78001d050, 6f42d688-4559-4e18-a91b-df81031210a5, 01cf8686-3d84-40d6-8974-a17069cd05ff, 42ce5ffb-aaf1-4920-a0bb-260315e80c01, 326b04ac-d634-4fd0-ae23-d6042bbc4cc0, 71cf0aae-a36d-4d33-a4ac-f157da047cdf, 949c20d4-28d5-4961-ba1a-3b9f1739be94, ed93fcd4-5547-4d49-b4cd-96cfd87ab365, 40361f80-6588-425a-a4e4-85eb52f9ae89, c9331489-7185-4055-a057-1473864ef9dc, 9382a5fb-ccdb-4ba1-9c76-f71b619160a4, d27ca359-4581-46e4-a44d-ca50cae89444, bbe86e18-d756-4f61-93eb-bc6fb9261543, 6b7d7ad6-184f-4db9-8b85-42071eec714b'}]}"
"{'title': 'Diabetic Eye Screening: the Birmingham, Solihull and Black Country Data Set', 'abstract': 'Diabetic screening data containing routine community annual longitudinal screening patient results of 200000 patients with screening results per patient ranging from 1 year to 15 years.', 'publisher': {'memberOf': 'HUB', 'identifier': '5f8437a3b7dec2a83e8cceba', 'name': 'INSIGHT'}, 'keywords': ['Background', 'Diabetic Retinopathy', 'Digital Retinal Photography', 'Digital Surveillance', 'Clinically Significant Macular Oedema', 'Diabetic Retinopathy', 'Diabetic Maculopathy', 'Diabetes Mellitus Type 1', 'Diabetes Mellitus Type 2', 'Fundus Photographs', 'Grading', 'Gestational Diabetes', 'Haemorrhage', 'Hospital Eye Service', 'Images', 'Microaneurysm', 'Non-Proliferative Diabetic Retinopathy', 'New Vessels', 'Proliferative Diabetic Retinopathy', 'Pregnancy', 'Retina', 'Referral', 'Screening', 'Screening Programme', 'Vision', 'Visual Acuity'], 'contactPoint': 'enquiries@insight.hdrhub.org'}",36886b21-12ff-45e7-82bc-fb5308c12450,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Dataset is representative of the patient pathway for community screening and grading. It covers standard UK PHE Diabetic Eye Screening requirements and will include patients receiving screening through the standard model, routine diabetic screening, surveillance and slit lamp', 'followup': '1 - 10 YEARS', 'typicalAgeRange': '12-150', 'spatial': ['https://www.geonames.org/11591953/west-midlands.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '56c3aabb-cb99-4da9-a6ed-3212c02e6f20', '1.0.0': '1bafa55c-5616-47db-8ac8-798038146254', 'latest': '1bafa55c-5616-47db-8ac8-798038146254'}","{'description': 'Diabetes mellitus affects over 3.9 million people in the UK, with over 2.6 million people in England alone. Diabetic retinopathy (DR) is a common microvascular complication of type 1 and type 2 diabetes and remains a major cause of vision loss and blindness in those of working age. The National Institute for Health and Care Excellence recommendations are for annual screening using digital retinal photography for all patients with diabetes aged 12 years and over until such time as specialist surveillance or referral to Hospital Eye Services (HES) is required. \n\nBirmingham, Solihull and Black Country DR screening program is a member of the National Health Service (NHS) Diabetic Eye Screening Programme.  This dataset contains routine community annual longitudinal screening patient results of over 200000 patients with screening results per patient ranging from 1 year to 15 years. Key data included are:\n• Total number of patients screened and graded over a 15 year period. \n• Demographic information (including age, sex and ethnicity)\n• Diabetes status\n• Diabetes type\n• Length of time since diagnosis of diabetes \n• Visual acuity\n• The national screening diabetic screening grade category (seven categories from R0M0 to R3M1)\n• Diabetic eye clinical features\n• Reason for sight and severe sight impairment\n• Screening Outcome (digital surveillance and time; referral to HES)\n\nGeography\nBirmingham, Solihull and Black Country is set within the West Midlands and has a population of circa 5.9million.  The region includes a diverse ethnic, and socio-economic mix, with a higher than UK average of minority ethnic groups. It has a large number of elderly residents but is the youngest population in the UK. There are particularly high rates of diabetes, physical inactivity, obesity, and smoking.\n\nData source:  The Birmingham, Solihull and Black Country Data Set, University Hospitals Birmingham NHS Foundation Trust, Birmingham, United Kingdom. They manage over 200,000 patients, with longitudinal follow-up up to 15 years, making this the largest urban diabetic screening scheme in Europe. \n\n\nWebsite: https://www.retinalscreening.co.uk/\n\nPathway: The Birmingham, Solihull and Black Country dataset is representative of the patient pathway for community screening and grading of diabetic eye disease. It covers standard UK Public Health England Diabetic Eye Screening requirements and will include patients receiving screening through the standard model, routine diabetic screening, surveillance and slit lamp examination.', 'isPartOf': 'NOT APPLICABLE'}",1bafa55c-5616-47db-8ac8-798038146254,https://web.www.healthdatagateway.org/dataset/1bafa55c-5616-47db-8ac8-798038146254,"{'formatAndStandards': {'format': ['SQL'], 'vocabularyEncodingScheme': ['NHS NATIONAL CODES'], 'conformsTo': ['LOCAL'], 'language': ['en']}, 'access': {'jurisdiction': ['GB-GBN'], 'accessRights': ['https://www.insight.hdrhub.org/'], 'deliveryLeadTime': '2-6 MONTHS', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'dataProcessor': 'NOT APPLICABLE', 'accessService': ""INSIGHT is developing it's data access environment for researchers.  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"{'title': 'National Audit of Psychosis - Audit on Early Intervention in Psychosis services - contextual data', 'keywords': ['Contextual Data', 'Audit', 'Psychosis', 'NAP - EIP'], 'contactPoint': 'DataSharing@hqip.org.uk', 'publisher': {'memberOf': 'ALLIANCE', 'contactPoint': 'DataSharing@hqip.org.uk', 'name': 'HQIP'}, 'abstract': 'Contains organisational survey data on the organisation of EIP services, the data they collect about their service, their staffing and caseload.'}",4559a14f-563d-4fd2-93ae-27c6c0fd891e,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'f37d0a22-01ff-4dba-9efa-c366fa31bf92', '3.0.0': '1bbcb128-dd3e-4f56-81d5-17df2dab3c52', '2.0.0': 'c5994fae-9c4a-47eb-ba42-85bd76e92879', '1.0.0': '416ad3d7-52c1-4c3c-baad-15daddb9c1e5', 'latest': '1bbcb128-dd3e-4f56-81d5-17df2dab3c52'}","{'description': 'This dataset contains organisational survey data on the organisation of Early Intervention Psychosis (EIP) services, the data they collect about their service, their staffing and caseload.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",1bbcb128-dd3e-4f56-81d5-17df2dab3c52,https://web.www.healthdatagateway.org/dataset/1bbcb128-dd3e-4f56-81d5-17df2dab3c52,"{'access': {'jurisdiction': 'GB-GBN', 'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data', 'deliveryLeadTime': 'OTHER'}, 'formatAndStandards': {'language': ['en']}}",,2020-01-13T13:54:01Z,,3.0.0,,2021-04-14T08:11:42Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Deaths General Registrar Office – National Records Scotland', 'keywords': ['Deaths'], 'publisher': {'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE', 'identifier': '607db9c4e1f9d3704d570d1f', 'memberOf': 'ALLIANCE'}, 'abstract': 'Supplemental data from National Records Scotland (NRS, formerly General Registrar Office (GRO) and contains data relating to the causes of death of patients.', 'contactPoint': 'hicsupport@dundee.ac.uk'}",5362cfea-d554-43ba-916a-4460da39cc0c,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2636157/tayside-region.html'], 'followup': 'UNKNOWN', 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '464b06d6-239a-4c6d-a626-242ba7e79e05', '3.0.0': '1c524f7c-ee22-4bdc-877b-8dddc03e3aa2', '0.0.1': 'e851ec95-95e4-4d5c-a364-b6f5651f1f9b', '2.0.0': 'ecb404b5-2fcb-4b91-a86a-f9f8d25b2ebd', 'latest': '1c524f7c-ee22-4bdc-877b-8dddc03e3aa2'}","{'description': 'This data should be considered as supplemental data, and used to identify causes of death.  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"{'title': 'Sero-surveillance to monitor the trend of SARS-CoV-2 infection in rural India', 'contactPoint': 'RESPIRE@ed.ac.uk', 'publisher': {'identifier': '607db9c2e1f9d3704d570ce6', 'name': 'BREATHE', 'memberOf': 'HUB'}, 'keywords': ['COVID-19', 'RESPIRE', 'BREATHE', 'SERO-SURVEILLANCE', 'INFECTION', 'TRANSMISSION', 'RURAL', 'INDIA'], 'abstract': 'Community-based sero surveillance study provide an opportunity to answer important questions on the proportion of individuals in the community who have been infected with Covid-19.'}",185e9c5c-e686-4174-bcba-5e2f584b5cbb,"{'typicalAgeRange': '0-150', 'pathway': 'NOT APPLICABLE', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'UNKNOWN'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '1ca52b96-27d9-491a-b5f0-5787852d39d2'},"{'description': '""This globally relevant study aims to estimate the seroprevalence of SARS-CoV-2 infection in a rural population in India. The study will help to determine the burden of COVID-19 infection at the community level and monitor the trends in transmission of the infection. The study will also examine the risk factors for infection, and the morbidity status and quality of life in individuals with SARS-CoV-2 seropositivity.\n\nThe project findings will be useful to guide the design and implementation of appropriate interventions and containment measures in India, with the potential to inform other low-and-middle income country responses.\n\nFor further details, see: https://www.ed.ac.uk/usher/respire/covid-19/sero-surveillance-monitor-transmission""', 'isPartOf': 'BREATHE'}",1ca52b96-27d9-491a-b5f0-5787852d39d2,https://web.www.healthdatagateway.org/dataset/1ca52b96-27d9-491a-b5f0-5787852d39d2,"{'formatAndStandards': {'language': ['en'], 'format': ['text'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL']}, 'access': {'accessRights': ['https://www.ed.ac.uk/usher/respire/covid-19/sero-surveillance-monitor-transmission'], 'dataProcessor': 'RESPIRE', 'dataController': 'RESPIRE', 'jurisdiction': ['GB-SCT']}, 'usage': {'resourceCreator': ['RESPIRE Collaboration']}}","{'temporal': {'accrualPeriodicity': 'STATIC', 'endDate': '2021-06-30', 'startDate': '2020-08-01', 'timeLag': 'NOT APPLICABLE'}, 'origin': {'collectionSituation': ['COMMUNITY']}}",2021-08-09T12:46:35Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '1', 'observationDate': '30/06/2021', 'measuredProperty': 'Count'}]",1.0.0,,2021-08-09T12:46:35Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Asthma self-management behaviour in Bangladesh and Pakistan', 'keywords': ['asthma', 'self-management', 'ethnic minorities', 'south asian', 'bangladeshi', 'pakistani', 'bame', 'supported self-management', 'interventions', 'sociocultural context'], 'publisher': {'name': 'BREATHE', 'memberOf': 'HUB', 'contactPoint': 'breathe.saildatabank@swansea.ac.uk'}, 'abstract': 'Considering the role of culture on asthma self-management behaviour: using the Bangladeshi and Pakistani exemplar populations', 'contactPoint': 'breathe.saildatabank@swansea.ac.uk', 'doiName': 'https://doi.org/10.1038/s41533-017-0070-6 https://doi.org/10.1038/s41533-016-0008-4'}",3b378225-48e1-45fa-b62d-fc4ed4b39bec,"{'spatial': 'International', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-100'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '1cb397d5-a86d-4354-b1f7-565b7ef5054b'},"{'description': 'This dataset consists of:\n\ni) systematic review - narratively synthesised 16 RCTs (17 papers) in South Asian and Black populations to explore the extent to which variance in self-management is due to ethnicity and/or various sociocultural contexts.\n\nii) qualitative study - semi-structured interviews with 27 Bangladeshis and Pakistanis with asthma to understand the role of culture in self-management. \n\niii) qualitative study - semi-structured interviews with nine healthcare professionals to understand their perspective on providing supported self-management to these communities.', 'isPartOf': 'AUCKAR'}",1cb397d5-a86d-4354-b1f7-565b7ef5054b,https://web.www.healthdatagateway.org/dataset/1cb397d5-a86d-4354-b1f7-565b7ef5054b,"{'access': {'accessRights': ['https://saildatabank.com/application-process/'], 'dataController': 'AUCKAR', 'jurisdiction': 'GB-GBN', 'accessRequestCost': 'N/A', 'dataProcessor': 'AUCKAR', 'deliveryLeadTime': 'VARIABLE'}, 'usage': {'dataUseRequirements': ['COLLABORATION REQUIRED', 'ETHICS APPROVAL REQUIRED'], 'dataUseLimitation': 'NO RESTRICTION', 'resourceCreator': 'Queen Mary University of London', 'isReferencedBy': ['Ahmed, S., Steed, L., Harris, K., Taylor, S. J., and Pinnock, H. (2018). Interventions to enhance the adoption of asthma self-management behaviour in the South Asian and African American population: a systematic review.\xa0NPJ primary care respiratory medicine,\xa028(1), 5', 'Ahmed S., Salim H., Steed L and Pinnock H. (2017). Blue inhalers: blowing hot and cold. Npj Primary Care Respiratory Medicine, 27(1), 6. ']}, 'formatAndStandards': {'conformsTo': 'LOCAL', 'vocabularyEncodingScheme': 'LOCAL', 'language': 'en'}}","{'origin': {'collectionSituation': 'COMMUNITY', 'source': 'OTHER', 'purpose': 'STUDY'}, 'temporal': {'accrualPeriodicity': 'STATIC', 'timeLag': 'NOT APPLICABLE'}}",2021-04-09T15:30:16Z,,0.0.1,,2021-04-09T15:27:10Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
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"{'title': 'Tayside Microbiology: Tests', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE', 'identifier': '607db9c4e1f9d3704d570d1f'}, 'keywords': ['Microbiology samples'], 'contactPoint': 'hicsupport@dundee.ac.uk', 'abstract': ""Tayside Microbiology lab samples linking a specimen to a test code and it's description.""}",826be5be-9977-49f9-b6d1-83ed9de08ebe,"{'spatial': ['https://www.geonames.org/2636157/tayside-region.html'], 'followup': 'UNKNOWN', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '45d350e4-f804-4ed9-8a7d-0750cc45eb7e', '3.0.0': '1d2acc70-0e2d-4601-bbbb-569a49bfaa5b', '1.0.0': '992d45d6-c80e-474d-87ff-4503ee1210a2', '2.0.0': 'c8516bb0-e4c5-484f-a370-f49315e3a330', 'latest': '1d2acc70-0e2d-4601-bbbb-569a49bfaa5b'}","{'description': ""Links a specimen to a test code and it's description.\nResult is stored as a free text comment field, so may need to be interpreted by the data users.  Many of these results are comments about the samples.\nThis dataset pulls the CHI and Sample Date fields from the Lab dataset for convenience."", 'isPartOf': 'University of Dundee Health Informatics Centre'}",1d2acc70-0e2d-4601-bbbb-569a49bfaa5b,https://web.www.healthdatagateway.org/dataset/1d2acc70-0e2d-4601-bbbb-569a49bfaa5b,"{'usage': {'dataUseRequirements': ['DISCLOSURE CONTROL'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}, 'formatAndStandards': {'language': ['en'], 'conformsTo': ['LOCAL'], 'format': ['database'], 'vocabularyEncodingScheme': ['LOCAL']}, 'access': {'accessService': 'HIC has implemented a remote-access ""Safe Haven"" environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details are available via the following link:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/', 'accessRights': ['https://www.dundee.ac.uk/hic/governanceapprovalsupport/'], 'deliveryLeadTime': 'OTHER', 'jurisdiction': ['GB-SCT'], 'dataController': 'University of Dundee'}}","{'origin': {'collectionSituation': ['PRIMARY CARE'], 'purpose': ['CARE'], 'source': ['ELECTRONIC SURVEY']}, 'temporal': {'distributionReleaseDate': '2021-09-28', 'startDate': '1998-01-07', 'accrualPeriodicity': 'IRREGULAR', 'timeLag': 'NOT APPLICABLE', 'endDate': '2021-07-31'}}",2020-06-03T12:57:13Z,"[{'observedNode': 'PERSONS', 'measuredValue': '513000', 'disambiguatingDescription': '513,000 persons in the dataset', 'observationDate': '28/09/2021', 'measuredProperty': 'COUNT'}]",3.0.0,,2021-10-11T16:29:49Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 8, 'structuralMetadata.columnName': 8, 'structuralMetadata.columnDescription': 8, 'structuralMetadata.dataType': 8, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'c2d787ff-9bf1-49f3-a524-94b1132dfb3f', 'description': ""Links a specimen to a test code and it's description.  Result is stored as a free text comment field, so may need to be interpreted by the data users.  Many of these results are comments about the samples.  This dataset pulls the CHI and Sample Date fields from the Lab dataset for convenience."", 'name': 'Microbiology - Tayside Tests', 'dataElementsCount': 8, 'dataElements': 'e7b4d796-0a9f-46ff-9a3c-2412f9660a7a, a24819ef-d05f-46bc-990d-f6d20e5f21f7, 910291fe-cd27-464c-8082-51905ad22a49, a60787f5-5759-4882-93a9-c61799a04af1, 6c38c4bc-460a-4c70-a78c-d3e6798e8dce, f9b19ea2-b509-442b-be37-051b3f877457, 5d24a7cc-4ed2-427f-bbcc-bd023349324f, 94c02d01-2e4e-4376-b697-e742575647b5'}]}"
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Tesla V100 GPU', 'jurisdiction': ['GB-ENG'], 'dataProcessor': 'University of Oxford'}, 'usage': {'investigations': ['https://www.qresearch.org/research/approved-research-programs-and-projects/'], 'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'dataUseRequirements': ['ETHICS APPROVAL REQUIRED', 'NOT FOR PROFIT USE'], 'resourceCreator': ['ICNARC']}}","{'origin': {'collectionSituation': ['IN-PATIENTS'], 'source': [], 'purpose': ['CARE']}, 'temporal': {'endDate': '2021-03-31', 'timeLag': '1-2 MONTHS', 'startDate': '2019-12-12', 'accrualPeriodicity': 'MONTHLY'}}",2022-03-21T16:34:33Z,"[{'observationDate': '04/02/2022', 'measuredProperty': 'count', 'measuredValue': '35047612', 'observedNode': 'EVENTS'}]",2.0.0,,2022-06-08T09:52:33Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 115, 'structuralMetadata.columnName': 115, 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"{'title': 'Somerset Cancer Registry', 'publisher': {'memberOf': 'ALLIANCE', 'contactPoint': 'surjeet.janjuha@nhs.net', 'name': 'BARTS HEALTH'}, 'contactPoint': 'surjeet.janjuha@nhs.net', 'abstract': 'SCR is a specialist clinical system used on St Barts site. System developed by the NHS for recording cancer patient pathways and tracking patients’ care across multiple organisations.'}",3ec5f1c4-95c0-4b1d-899b-399cec32ad49,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'c00776a4-87e2-4880-96bd-e7e6e75fddfb', '2.0.0': '1e465797-5e54-4667-9120-d373e75be64f', '1.0.0': '7d501f79-5d1f-4104-a5b7-d46a97fcde5f', 'latest': '1e465797-5e54-4667-9120-d373e75be64f'}","{'description': None, 'isPartOf': 'N/A'}",1e465797-5e54-4667-9120-d373e75be64f,https://web.www.healthdatagateway.org/dataset/1e465797-5e54-4667-9120-d373e75be64f,"{'access': {'accessRights': 'Available locally within Trust corporate Data Warehouse System and authorised access by Trust staff only.\nHowever as the system is centrally hosted, the data may also be available directly from the OpenExeter team.', 'deliveryLeadTime': 'OTHER'}}",,2020-01-13T16:54:43Z,,2.0.0,,2021-02-21T15:18:37Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'UK Renal Registry - CKD and AKI on Dialysis Dataset', 'contactPoint': 'ukrr-research@renalregistry.nhs.uk', 'keywords': ['Chronic kidney disease (disorder)', 'Acute kidney injury', 'Transplant', 'End-stage kidney disease', 'Kidney replacement therapy', 'Kidney', 'Dialysis', 'Renal replacement therapy', 'UK Renal Registry', 'ESKD', 'CKD', 'AKI', 'KRT', 'RRT', 'Renal', 'Kidney'], 'publisher': {'identifier': '609bc283781cac1dbab2a385', 'name': 'RENAL ASSOCIATION', 'memberOf': 'ALLIANCE'}, 'abstract': 'Patient-level data for adults and children with chronic kidney disease (CKD) or adults with an acute kidney injury (AKI) on dialysis who are under the care of NHS hospital renal centres in England, Northern Ireland, Scotland and Wales.'}",b7152f21-0f2c-4ed9-a013-51e725242f94,"{'followup': 'CONTINUOUS', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'https://www.geonames.org/2635167/united-kingdom-of-great-britain-and-northern-ireland.html', 'pathway': 'The dataset includes all adults and children in the UK who are on kidney replacement therapy (KRT - kidney transplant or dialysis). The UK Renal Registry (UKRR) only collects data on adults with chronic kidney disease (CKD) who are under the care of hospital renal centres in the UK, i.e. the UKRR does not collect data on those with CKD in primary care. Those with CKD who are not on KRT generally only come under the care of renal centres once they have reached advanced CKD, i.e. stages 4 and 5. The UKRR collects data on all adults with an acute kidney injury (AKI) who receive dialysis at a hospital renal centre. The UKRR does not collect data on patients who receive dialysis in other settings for an AKI, e.g. in critical or intensive care.', 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '1e875c15-4a99-4c3e-9621-e4ebf594469f'},"{'description': 'The dataset contains patient-level data for adults under the care of NHS hospital renal centres in the UK who have chronic kidney disease (CKD - mostly stages 4 and 5), as well as adults and children on kidney replacement therapy (KRT) for end-stage kidney disease (ESKD), and adults with an acute kidney injury (AKI) on dialysis at a renal centre. The data are collected daily, quarterly or annually and include patient identifiable information, socio-demographic and clinical data. Since 2007 the UKRR has had 100% coverage of all people under the care of renal centres in the UK on KRT and each year collects data on about 70,000 people on KRT. Coverage of people with CKD under the care of renal centres (excluding those on KRT) is lower – data collection commenced in 2016 and has increased from almost 17,000 adults with CKD stages 4 and 5 at the end of 2016, to more than 34,000 adults at the end of 2019. These numbers will continue to rise as more renal centres submit data – in 2019 the UKRR received data from only 17 of the UK’s 70 adult renal centres. In total, this dataset holds information on about 240,000 people on KRT or with advanced CKD. See here for further information: https://renal.org/audit-research/data-permissions/data/ukrr-ckdaki-clinical-dataset.', 'associatedMedia': ['https://renal.org/audit-research/data-permissions/data/ukrr-ckdaki-clinical-dataset', 'https://renal.org/audit-research/annual-report'], 'isPartOf': 'UK Renal Registry, The Renal Association'}",1e875c15-4a99-4c3e-9621-e4ebf594469f,https://web.www.healthdatagateway.org/dataset/1e875c15-4a99-4c3e-9621-e4ebf594469f,"{'access': {'jurisdiction': ['GB'], 'accessRights': ['https://renal.org/audit-research/how-access-data/ukrr-data/apply-access-ukrr-data'], 'accessRequestCost': ['Charges may apply for new aggregate data and extracts of pseudonymous patient level data. The charges are to recover the costs of managing the application process and preparing extracts of data. The costs depend on the level of service required from the UKRR and whether this is limited to a simple extract of data, or requires additional input such as methodological or statistical support. The UKRR can advise on costs once the expression of interest is received and applicants may also be requested to complete a costing form.'], 'accessService': ""Data are released to researchers who have successfully gone through the UKRR's data application process. Prior to any data sharing with successful applicants, a fixed term data sharing agreement (DSA) is drawn up between the Renal Association and the recipient. This specifies the scope of the analyses permitted, the data items to be shared, the frequency of the data sharing, the names of the researchers and the time limit beyond which data must be destroyed."", 'dataController': 'UK Renal Registry, The Renal Association', 'deliveryLeadTime': '2-6 MONTHS'}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'investigations': ['https://renal.org/audit-research/projects/ukrr'], 'resourceCreator': ['UK Renal Registry, The Renal Association'], 'dataUseRequirements': ['NOT FOR PROFIT USE', 'ETHICS APPROVAL REQUIRED', 'GEOGRAPHICAL RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION', 'INSTITUTION SPECIFIC RESTRICTIONS']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['SNOMED CT'], 'language': ['en'], 'format': ['csv or xlsx or sas7bdat'], 'conformsTo': ['NHS DATA DICTIONARY']}}","{'temporal': {'startDate': '1997-01-01', 'distributionReleaseDate': '2021-06-30', 'timeLag': 'MORE 6 MONTHS', 'accrualPeriodicity': 'ANNUAL'}, 'origin': {'source': ['EPR', 'ELECTRONIC SURVEY', 'OTHER INFORMATION SYSTEM'], 'collectionSituation': ['CLINIC', 'OUTPATIENTS', 'IN-PATIENTS'], 'purpose': ['DISEASE REGISTRY', 'AUDIT']}}",2021-05-26T13:58:39Z,"[{'observedNode': 'PERSONS', 'measuredValue': '240000', 'disambiguatingDescription': 'Since 1997 the UKRR has collected data on c. 240,000 patients who are treated at hospital renal centres in England, Northern Ireland, Scotland and Wales who are either on KRT or have CKD. ', 'observationDate': '31/12/2019', 'measuredProperty': 'Count'}]",1.0.0,"{'qualifiedRelation': ['NHSBT, NHS Digital (HES), PHE - external researchers must obtain their own permissions to link other datasets to UKRR data'], 'derivation': ['Not available']}",2021-06-04T09:26:57Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 98, 'structuralMetadata.columnName': 98, 'structuralMetadata.columnDescription': 98, 'structuralMetadata.dataType': 98, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '7d99fce1-9a4d-4242-9b79-a310bdbd879e', 'description': 'Patient-level data for adults and children with CKD or adults with an AKI on dialysis who are under the care of NHS hospital renal centres in England, Northern Ireland, Scotland & Wales', 'name': 'UKRR CKD/AKI clinical dataset', 'dataElementsCount': 98, 'dataElements': '5cc3d4af-fa43-4553-96a3-fc468af4a79d, 175f0f20-bea2-4a64-b49f-0fb9db717971, 265e1b2d-aa7e-4a20-8159-266f04fac9a4, 3654af1f-03b4-4850-b0a2-c4b9894fe66a, 96b71b12-81c8-401a-a301-2fe2e60813a0, d49eb16c-b08c-4103-a12b-383e34ce1b83, 4d974101-82a3-440f-9b80-5d254b71f43e, 989078d4-6678-4f5d-b80f-62409b2ac96b, c91e9074-e03a-43fb-a66c-cd45b5c34afe, 30a520a0-4b2a-4ef0-8aed-7f8aba0db06f, 1a447cb7-a79f-4c8d-862f-18c91490d44a, 86971c1f-69f4-4d60-8a16-2a70777a3b6c, 1f0a20fc-aae5-41dd-acd8-4e53440ef4e4, 1fb48bdf-6cde-42c9-99a0-fdb2580e0427, f6cb6762-8097-4bf1-8164-de06523102dc, a731f6e4-cb34-4834-a454-c79bc5559c4e, 7d23c7e0-1d9e-4a76-98db-220e29e98c37, 138eda94-56c9-46d5-ae1f-49234a15c89e, 55a47534-6ffc-4e61-b8b0-a939c3bbf45c, 0b7d517f-4a4b-4176-8ab7-664ecfa794f9, 1957be2c-881f-4d29-8336-15ea7a3e1896, 567dc4a8-2367-4bd3-9c9c-5f5cac5fbd18, ae20e0d7-82f9-4b48-acf8-95e2d4e106ca, ee8f7bd1-1c5f-4e8c-82aa-66fbdb186f1d, a1cfe39f-e7c1-4edb-a185-135596400a64, 7df514c7-2aec-45de-ab21-19ecad54c7f4, f767c2a6-e61e-4d27-b453-e3eb697a0570, 69d74cf3-6d10-4c9b-966f-8cdbabd77abe, c4087ee1-740f-4cc5-a570-a5ec8b0b0195, 4c49afff-1d42-4aad-9189-559fac30541b, 3d1711e6-0ed8-42ef-8c0e-b17b7a01290c, 3fbedf1d-992e-4571-b01e-139f72774ca4, 55f444ba-c4a8-4a26-8b97-63d8ab4cd4e4, 3254383b-28a1-4363-bb79-ab686df12244, 9802313b-57f6-4200-98ee-ccb89acecd43, 90875488-03bf-41af-b1b7-6af9fc6cd069, 2c0b6e77-b1cd-4777-9c9f-92868149971c, 06ed57d4-666f-4c3e-9645-cfce603f3f72, 587798d7-81f4-40df-90e6-3847e7130908, 1d2295bd-4bf8-481d-a63d-35f63025170b, 29cb2fc8-4942-46f8-ac1e-e5b5779585ca, 1170913b-6679-44f0-951f-aa1883cdff92, 16f13923-691c-43f2-89e9-d6ff1579644e, 1522fce3-467d-40d8-92bb-3b10a5126a23, 0f106c12-8aa4-4f57-89ae-d9aaa6a27a2f, f80605cb-b7d4-4de7-8cd5-db28758d644a, 29816f6e-83ce-4a21-881d-ac9aa06bfc9a, dd2cb86c-7f5e-4a49-ba14-a750f6e3d80a, 4a4ba6cc-3e91-4a07-ae99-c2766c3256ef, e8158867-2eab-4ca6-b120-f30b97f8855d, f7af4b05-1613-4b79-845d-588727b4f1f3, a70ca841-0943-411d-91be-27ed211ae245, d27ed094-7d10-484c-a60a-7878e2094c1a, be0eb194-3892-4029-8a47-061a79031238, 03489af4-9557-498f-b686-c6009aa8e9e3, 03ef566d-11f2-43fc-b23d-d678f04cc4c4, 01e7956f-d41e-40e6-93ea-da0183e95a71, c6f61c34-8543-4879-bfa3-7b5e1ee7263f, 89438ef0-149a-4dec-920f-5d7f1adf7b21, 4b185ef0-b382-422a-b121-59ab22c8496e, d5be426a-9550-4fba-a4f4-e3bad30289aa, 946c3e6c-2a20-4d5b-aea9-7ea6d17fa1bf, 11df487e-23c3-44e3-8843-9d03e5b51b30, ec8266ed-1de6-4185-9dfc-1f6b1cefb342, 20b45d53-b344-4674-a181-5d82abfdd96a, 55391c21-678d-4434-bdfb-04ef9520f26c, f96a308c-c8e6-4a9e-a1a8-d1bcd533f921, 0a716219-3c6f-40c4-b95e-29d045ce5600, a596ac0d-e8a6-493e-a056-43fbb2cd6d3b, ecbc5d66-4ebe-4cd5-b5a6-1067e05f4fa4, 028e00eb-6bbb-42c9-8bd7-07126ef3d340, b6251cb4-8820-4918-b8f8-5d7024dce0e9, acd2559d-7615-4308-9c19-346b7422e269, be319525-3868-407b-b7e3-5de86b61095e, ff0cc01b-6948-4fcd-af11-b3903e57eb31, 09668db6-cc06-4d78-916a-c5124985a834, 36c757ed-3859-4c54-b08d-7037919fcb38, 6d9b0e2d-ebcc-44af-818e-681645aafa80, 72058b95-2695-4d4e-be65-e77b246591e6, dd9f9e89-4e7c-4cc1-818a-85f4dbc1db66, 4856d8ab-d600-41ba-bc5c-360561fc498d, feb07c83-2ef0-4296-92cf-0be9ecb991a5, 5ae32339-21dc-458f-8c6f-f184649aa800, 6712df90-1630-4c1c-98d6-cff2e5ff97aa, 15ab5d6b-fef4-4cf5-8bca-293d06fd1827, a30e4233-e770-40af-bc58-5cb034607129, 927f28ab-f045-46c8-bee8-55caa72b6566, 9d28cfb3-24b3-4f24-81f1-a592af8c3b2e, 608dc7d2-08c4-4023-ad2e-d1a8c29eaed4, d3994b88-2405-4b0c-8028-316519eaf52f, 4c4eb52c-b429-483b-80e6-df561fb82edb, e52feb03-07d5-4725-b3f2-63966b648338, 8792eac0-5342-43bd-841b-b3eb99ef9927, 052ee486-2a85-4f2f-ab73-e7bcd99e95b1, 93635f77-3a0a-4777-b4a5-30cf3e470d80, b365afbc-92b9-40d3-8687-774c603405ed, 264fbd25-57db-44b7-af4a-b7e43e6881ee, 41cffd3b-97b1-415f-a3b8-1a96605b78d3'}]}"
"{'title': 'Emergency Care Data Set (ECDS)', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '5f86cd34980f41c6f02261f4', 'name': 'NHS DIGITAL'}, 'abstract': 'The Emergency Care Data Set (ECDS) is a national data set providing information to support the care provided in emergency departments by including the data items needed to understand capacity and demand and help improve patient care.', 'keywords': ['DIGITRIALS', 'A&E', 'ACCIDENT AND EMERGENCY', 'ECDS', 'NCS', 'National Core Study', 'URGENT AND EMERGENCY CARE', 'UEC', 'COVID-19'], 'contactPoint': 'enquiries@nhsdigital.nhs.uk'}",7749d90e-dd7a-4697-8a9c-666491c64a0c,"{'pathway': 'Urgent and Emergency Care', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150', 'spatial': 'http://www.geonames.org/6269131/england.html', 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'3.0.0': '621008c7-67ac-4e3d-9c54-af87cc2f9579', '6.0.0': '1f6118ce-4051-4ba6-b13e-63dca0032d8d', '2.0.0': '22f3773a-9157-40ad-8f3e-41feaa3be248', '4.0.0': 'bf563953-2293-4fb4-9842-61f7fdadea57', '1.0.0': '4bb4bf38-870b-47e5-b5d1-dc75b3d4ea6a', '5.0.0': '387c62e0-2cb3-4804-9c3e-c0c5864cd33c', 'latest': '1f6118ce-4051-4ba6-b13e-63dca0032d8d'}","{'description': ""The Emergency Care Data Set (ECDS) is the national data set for urgent and emergency care. It replaced Accident & Emergency Commissioning Data Set (CDS type 010) and was implemented through: ECDS (CDS 6.2.2 Type 011). ECDS allows NHS Digital to provide information to support the care provided in emergency departments by including the data items needed to understand capacity and demand and help improve patient care.\n\nECDS Type 011 is better equipped to keep pace with the increasing complexity of delivering emergency care than its predecessor.  This means that the improved quality of data collected in emergency departments provides better support to healthcare planning and better-informed decision making on improvements to services. \n\nThis improved data helps improve understanding of:\nThe complexity and acuity of attending patients\nThe causes of rising demand\nThe value added by emergency departments.\n\nECDS also allows:\nThe capture of better diagnostic data to ensure an enhanced understanding of need, activity and outcomes. \nConsistent monitoring of data across local and national initiatives\nsupport for injury surveillance, such that it will be possible to identify patterns that may be amenable to targeted interventions and improved public health.\nWhich in turn informs more effective and efficient resource deployment.\n\nPlease note, data can be submitted to the ECDS on a daily basis, however data extracts are made available via the DARS process on the second Thursday of each month, comprising provisional data for the full financial year up to and including the penultimate full month prior to the publication date. For example: Data for events that occurred 01/04/2020 to 31/10/2020 is made available via DARS extract on 10/12/2020.\n\nTimescales for dissemination of agreed data can be found under 'Our Service Levels' at the following link: https://digital.nhs.uk/services/data-access-request-service-dars/data-access-request-service-dars-process"", 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://digital.nhs.uk/data-and-information/information-standards/information-standards-and-data-collections-including-extractions/publications-and-notifications/standards-and-collections/dcb0092-2062-commissioning-data-sets-emergency-care-data-set', 'https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-sets/emergency-care-data-set-ecds', 'https://digital.nhs.uk/data-and-information/data-tools-and-services/data-services/emergency-care-data-set-ecds-data-quality', 'https://digital.nhs.uk/services/data-access-request-service-dars/dars-guidance#guidance-on-applying-for-emergency-care-data-set-ecds-through-dars', 'https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-sets/emergency-care-data-set-ecds/ecds-latest-update#enhanced-tos']}",1f6118ce-4051-4ba6-b13e-63dca0032d8d,https://web.www.healthdatagateway.org/dataset/1f6118ce-4051-4ba6-b13e-63dca0032d8d,"{'access': {'accessService': 'Once your DARS application has been approved, data will be made available either by secure file transfer or through the Data Access Environment (DAE).\n\nSecure file transfer: https://digital.nhs.uk/services/transfer-data-securely\n\nDAE: https://digital.nhs.uk/services/data-access-environment-dae', 'accessRights': ['https://digital.nhs.uk/services/data-access-request-service-dars'], 'deliveryLeadTime': 'OTHER', 'dataProcessor': 'Not Applicable', 'dataController': 'NHS Digital', 'accessRequestCost': ['https://digital.nhs.uk/services/data-access-request-service-dars/data-access-request-service-dars-charges'], 'jurisdiction': ['GB-ENG']}, 'usage': {'investigations': ['https://digital.nhs.uk/services/data-access-request-service-dars/register-of-approved-data-releases'], 'dataUseLimitation': ['NO RESTRICTION'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE'], 'resourceCreator': ['NHS DIGITAL']}, 'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['SNOMED CT', 'NHS NATIONAL CODES', 'ODS'], 'format': ['csv'], 'conformsTo': ['LOCAL', 'NHS DATA DICTIONARY']}}","{'origin': {'source': ['EPR'], 'purpose': ['CARE', 'ADMINISTRATIVE', 'FINANCIAL', 'OTHER'], 'collectionSituation': ['ACCIDENT AND EMERGENCY']}, 'temporal': {'accrualPeriodicity': 'MONTHLY', 'timeLag': '1-2 MONTHS', 'startDate': '2017-10-01'}}",2021-01-15T14:05:22Z,"[{'observedNode': 'PERSONS', 'measuredValue': '1420000', 'disambiguatingDescription': 'A&E attendances in ECDS (Emergency Care Dataset) for the month of October 2020.', 'observationDate': '18/11/2020', 'measuredProperty': 'Count'}]",6.0.0,"{'derivation': ['Data will be minimised as appropriate relative to the data access application, Additional information regarding derived fields available as part of requested extracts can be found at: https://digital.nhs.uk/data-and-information/data-collections-and-data-'], 'qualifiedRelation': ['https://digital.nhs.uk/services/data-access-request-service-dars/register-of-approved-data-releases'], 'tools': ['https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-sets/emergency-care-data-set-ecds']}",2021-11-29T21:31:58Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 22, 'structuralMetadata.tableName': 22, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 166, 'structuralMetadata.columnName': 166, 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"{'title': 'COVID-19 Shielded People List (CVSP)', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'keywords': ['coronavirus', 'shielded', 'covid', 'SAIL', 'NCS', 'National Core Study', 'COVID-19', 'core', 'CVSP'], 'publisher': {'identifier': '5f3f98068af2ef61552e1d75', 'name': 'SAIL', 'memberOf': 'ALLIANCE'}, 'abstract': 'List of high-risk people advised to self-isolate during Covid pandemic.'}",dc22db56-8791-4e96-9ce6-6b6a58b1241f,"{'followup': 'OTHER', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2634895/wales.html'], 'pathway': 'Covid-19 specific'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'11.0.0': 'd277f85c-f05b-4dc3-83b6-4969a1f42cb1', '13.0.0': '1fd6e7d5-266a-4c79-b492-7045910cd291', '12.0.0': '074e00d5-05c1-48c6-a6c3-d5228fa515bb', 'latest': '1fd6e7d5-266a-4c79-b492-7045910cd291'}","{'description': 'The Chief Medical Officer (CMO) for England, working with the CMOs of the devolved nations and other senior clinicians, commissioned NHS Digital to produce a list of people at “high risk” of complications from COVID-19, who should be shielded for at least 12 weeks. The CMO for Wales commissioned a collaboration of national bodies in Wales (NWIS, DU, NWSSP, PHW) to identify “high risk” people for the Welsh population, based largely on the NHS Digital methodology. This list is referred to as the Shielded Patient List (SPL). \n\nThe “high risk” list was defined as a subset of a wider group of people who may be “at risk”. Specific advice applies to these groups, currently this advice is:\n • “At Risk” – large group normally at risk from the flu - should practice strict social distancing \n• “At high risk” – a smaller sub-group (circa 70k), defined by CMO – should practice complete social “shielding” NHS Digital have described the methodology that has been used to identify patients who meet the high risk criteria due to their inclusion in one or more of the disease groups. \n\nAs there are differences in some of the systems used across the devolved nations, nuanced differences in application and interpretation of CMO guidance, this document describes the Welsh methodology.\n\nhttps://nwis.nhs.wales/coronavirus/coronavirus-content/coronavirus-documents/covid-19-high-risk-shielded-patient-list-identification-methodology/', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://www.youtube.com/watch?v=ZK9-Jw3uVkw']}",1fd6e7d5-266a-4c79-b492-7045910cd291,https://web.www.healthdatagateway.org/dataset/1fd6e7d5-266a-4c79-b492-7045910cd291,"{'access': {'deliveryLeadTime': '2-6 MONTHS', 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'accessRights': ['https://saildatabank.com/application-process/'], 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). 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To any SAIL dataset & reference data.', 'ALL']}",2022-02-03T14:39:01Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 10, 'structuralMetadata.columnName': 10, 'structuralMetadata.columnDescription': 10, 'structuralMetadata.dataType': 10, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '6507e359-1c74-426b-add7-b4c3a45ea02b', 'description': 'Information about shielded patients', 'name': 'DF_SHIELDED_PATIENTS', 'dataElementsCount': 10, 'dataElements': '878bba05-fcbd-4320-bdbd-c8f7f17ccd9d, dd12bb10-3b73-49b4-b3b8-3c5fecdb8126, 96ba897b-00a7-450a-9a81-607b519182e6, 1af4205e-ce5d-494c-a754-d2665794e2de, 5080bab2-b73d-49a9-8458-eb4704771ff0, 548e7cf7-40ff-4375-8995-144d75b8ed05, b9b5c83a-4adb-43c1-b345-abe52dfc3809, 3e2847a0-f210-4941-bad5-f6f15710c489, 76673c1e-72fa-4bda-bf8c-6747c1c17a39, ddcc1c52-76f9-4766-8b89-e2d432d6f5a2'}]}"
"{'title': 'Sentinel Stroke National Audit Programme Clinical Dataset', 'abstract': 'This continuously ascertained, record-level dataset audit collects information on stroke patients in England, Wales and Northern Ireland in acute hospital, and follows recovery, rehabilitation, and outcomes at the point of 6 month assessment.', 'publisher': {'contactPoint': 'DataSharing@hqip.org.uk', 'memberOf': 'ALLIANCE', 'name': 'HQIP'}, 'contactPoint': 'DataSharing@hqip.org.uk', 'keywords': ['Sentinel', 'SSNAP', 'Stroke', 'Clinical Dataset', 'Audit']}",059a6495-a7d5-435b-8e2b-806c6ccccf2e,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '51061f3f-a95b-41bd-86cb-5bf04f5728b8', '4.0.0': '203cc8b4-7711-4d1f-9213-af982d6cff28', '3.0.0': 'd3673b75-ec8f-4c2e-8c9b-6ef1d951f978', '1.0.0': 'ff935dc3-c9bc-4f11-9f81-9df93b60f6c6', '2.0.0': 'f3fb54cd-a83d-4c4b-ae4b-190765db4e85', 'latest': '203cc8b4-7711-4d1f-9213-af982d6cff28'}","{'description': 'This continuously ascertained, record-level dataset audit collects information on stroke patients in England, Wales and Northern Ireland in every acute hospital, and follows the pathway through recovery, rehabilitation, and outcomes at the point of 6-month assessment.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",203cc8b4-7711-4d1f-9213-af982d6cff28,https://web.www.healthdatagateway.org/dataset/203cc8b4-7711-4d1f-9213-af982d6cff28,"{'access': {'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data\nhttps://www.strokeaudit.org/Research/Data-requests.aspx', 'deliveryLeadTime': 'OTHER', 'jurisdiction': 'GB-GBN'}, 'formatAndStandards': {'language': ['en']}}",,2020-01-13T14:55:17Z,,4.0.0,,2021-04-14T08:14:19Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Moorfields Eye Image Dataset Release 001', 'keywords': ['Moorfields Eye Hospital', 'Bilateral', 'Diabetic retinopathy', 'Right', 'Lucentis', 'IVT', 'Treatment', 'Injections', 'VA', 'DR', 'NHS', 'IOP', 'Visual Acuity', 'Test', 'Lens', 'AMD', 'DME', 'Laterality', 'Ophthalmology', 'Diagnosis', 'Age-related macular degeneration', 'Cataracts', 'Series', 'DMO', 'Eyes', 'Left', 'Diabetes', 'Wet AMD', 'Refraction', 'Genetics', 'Dry AMD', 'Diabetic macular oedema', 'Glaucoma', 'Exam', 'Laser', 'Protocol', 'Topcon', 'Heidelberg', 'Eyela', 'Image', 'Scan'], 'contactPoint': 'enquiries@insight.hdrhub.org', 'publisher': {'memberOf': 'HUB', 'contactPoint': 'enquiries@insight.hdrhub.org', 'name': 'INSIGHT'}, 'abstract': 'The Moorfields Eye Hospital Imaging and Ocular Phenotype Bio resource is a longitudinal eye imaging dataset from routinely collected data from MEH patients from 2004 to date.  This dataset of > 10m images include a variety of high quality imaging types.', 'doiName': 'https://web.www.healthdatagateway.org/dataset/6bfe44ef-9532-4986-b8a2-9c2cda4a89cc'}",6bfe44ef-9532-4986-b8a2-9c2cda4a89cc,"{'typicalAgeRange': '0-120', 'physicalSampleAvailability': ['OTHER'], 'followup': '> 10 YEARS', 'pathway': 'The dataset is representative of the entire medical specialty of ophthalmology, encompassing the full range of subspecialties within this field.', 'spatial': 'United Kingdom'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '48ac3820-dcee-43b6-b94e-e16818662677', '3.0.0': '208f79dc-2294-4370-8f16-0d0f7bec9d10', '1.0.0': 'b94ef723-6810-4c1c-9b8b-c5ff871d6a7b', '2.0.0': '6959639d-5bd2-4b53-918e-8f56784b2870', 'latest': '208f79dc-2294-4370-8f16-0d0f7bec9d10'}","{'description': 'The Moorfields Eye Hospital Imaging and Ocular Phenotype Bio-resource consists of routinely collected imaging data from the largest eye centre in Europe. Moorfields currently has more than 10 million eye images and this number increases by about 1.2 million new images taken each year. This first release of Moorfields dataset includes metadata describing imaging series comprising of approximately 8million eye images from approx. 2.3million patients attending routine outpatient appointments and ophthalmic accident and emergency from Moorfields’ 31 sites across greater London, and includes longitudinal sequential scans. \nThe image data itself is not included in this first release of our dataset, only metadata describing the images available. We plan to make the imaging data itself available in subsequent releases available via this gateway.  \nThe data we provide will have quarterly releases to ensure the data is current and continually improving to maximise its viability for research. \nThe metadata includes eye imaging modalities such as optical coherence tomography (OCT), retinal photographs (including ultra-wide field imaging, CP-Colour Photo, IRP-Infrared Photo, FA-Fluorescein Angiography, ICGA-Indocyanine Green Angiography, RF-Red Free, AF-Autoflourescence, IRAF-Infrared Autoflourescence, BAF-Blue Autoflourescence).', 'isPartOf': 'NOT APPLICABLE'}",208f79dc-2294-4370-8f16-0d0f7bec9d10,https://web.www.healthdatagateway.org/dataset/208f79dc-2294-4370-8f16-0d0f7bec9d10,"{'formatAndStandards': {'language': 'en', 'format': ['CSV', 'Image'], 'conformsTo': ['NHS DATA DICTIONARY', 'OTHER'], 'vocabularyEncodingScheme': 'OTHER'}, 'access': {'accessService': 'INSIGHT is developing its data access environment for researchers. Until such time INSIGHT releases anonymised data, under data licence, into external secure environments.', 'deliveryLeadTime': '2-6 MONTHS', 'dataController': 'Moorfields Eye Hospital', 'jurisdiction': 'GB-GBN', 'dataProcessor': 'Google', 'accessRequestCost': 'https://www.insight.hdrhub.org/contact', 'accessRights': ['https://www.insight.hdrhub.org/researcher-area']}, 'usage': {'resourceCreator': 'INSIGHT Health Data Hub', 'dataUseLimitation': ['GENERAL RESEARCH USE', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'dataUseRequirements': 'PROJECT SPECIFIC RESTRICTIONS'}}","{'temporal': {'accrualPeriodicity': 'CONTINUOUS', 'timeLag': '1-2 MONTHS', 'startDate': '2004-03-01'}, 'origin': {'source': ['MACHINE GENERATED', 'OTHER'], 'collectionSituation': ['CLINIC', 'ACCIDENT AND EMERGENCY', 'OUTPATIENTS', 'IN-PATIENTS'], 'purpose': 'STUDY'}}",2020-01-13T15:27:27Z,"[{'observedNode': 'Persons', 'measuredValue': '10 million images', 'disambiguatingDescription': '', 'observationDate': '2004-03-01', 'measuredProperty': '10 million'}]",3.0.0,{'derivation': ['Not Applicable']},2021-02-26T14:45:05Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 25, 'structuralMetadata.columnName': 25, 'structuralMetadata.columnDescription': 25, 'structuralMetadata.dataType': 25, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'fbbc7ec4-e127-45af-8c97-af4724a1570a', 'description': 'This table contains the image metadata', 'name': 'images', 'dataElementsCount': 25, 'dataElements': '63278cdb-de99-4229-8c25-ecf27421c798, d14b3e3b-251a-4cc9-974e-3ba7f8fbe1be, badbb6ed-edff-4108-84dc-2fc627041948, 70b50ee8-0914-4031-8f56-587a796cee15, 29ad83ee-88f9-4223-8969-5e715b3398ae, 6373837f-f302-427d-9547-2e6c935b1bcf, 7dfc62bd-2cfb-4afd-b8f6-bf6143a4f50f, b6fba950-5747-4b09-b762-60e807473514, 3f134113-f534-4f9a-a816-46c6c565a5a7, d14efe4d-f056-4736-9aee-bb41db692f64, 4c63023d-15ca-4008-9295-6e22bd5d90a5, e8d9658b-380f-429c-8daa-bdc0016db9ec, 9bebf22e-6767-49b4-8537-c954cc41e6ba, 26b27b3f-665a-46f1-bff6-af719cb1b5b8, 552b58b5-af07-4a3f-bc0d-ccab6391fa06, f5c3c15c-5111-463c-89b1-c2dea8d3a550, 4d78d99b-fad1-4d83-9f86-0e484934de2b, 6b279b7b-a0d4-4506-bcc7-3e28136bd74f, 2b60fc41-d87c-4739-aa02-e74445ca8d87, b5463fb2-38cc-41f1-b8a6-4307161063a9, cfff94b2-70aa-4235-97e4-bb986d845cd9, 7f004fe3-7001-4cdf-b7f4-0ee8ff867c48, 773d6c71-5ad4-4baa-afd9-088af0291a19, 066b85e2-d2d9-452a-a7af-50d3e2866d90, 0c21d1a5-7697-4c5b-8abd-f8e002f1f9fd'}]}"
"{'title': 'CovPall - Survey of Palliative Care Services', 'abstract': 'CovPall is a multicenter multinational observational study of palliative care during the COVID-19 pandemic. This dataset includes the online survey of palliative care services, the first main component of CovPall.', 'keywords': ['Palliative Care', 'COVID-19', 'Pandemic', 'End of Life', 'Hospices', 'NCS', 'National Core Study'], 'publisher': {'memberOf': 'OTHER', 'name': 'Cicely Saunders Institute - Kings College London', 'identifier': '61c07f949f84273c2660f3e7'}, 'contactPoint': 'irene.higginson@kcl.ac.uk'}",8ba190b7-4c29-4558-a256-50e1f2242874,"{'spatial': ['WorldWide'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150', 'pathway': 'The dataset is limited to specialist palliative care services, both publicly and charitably funded.'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '3cc77509-c1f3-4649-ae0e-3d3316e53631', '2.0.0': '20e2a770-d086-4b17-858f-805bd53d18c7', 'latest': '20e2a770-d086-4b17-858f-805bd53d18c7'}","{'description': 'During the outbreak of the COVID-19 pandemic, the World Health Organization rapidly issued guidance on maintaining essential health services during the pandemic, highlighting prevention, maternity, emergency care and chronic diseases, without mention of palliative care. Palliative care is multidisciplinary, holistic and person-centered treatment, care and support for people with life-limiting illness, and those important to them, such as family and friends. In the COVID-19 pandemic, palliative care has an important role in ensuring symptom control, training of nonspecialists in symptom management and care of dying patients, compassionate communication, psychosocial support for patients, carers and health care professionals, advance care planning and bereavement support, supporting patients wherever they want to be cared for.\n\nThe CovPall (Rapid evaluation of the COVID-19 pandemic response in palliative and end of life care: national delivery, workforce and symptom management) study aimed to understand the response of and challenges faced by palliative care services during the COVID-19 pandemic and to identify factors associated with challenges experienced, in particular shortages of equipment, medicines and staff. It is the first multinational survey on the response of and challenges to palliative care services during the pandemic. \n\nThe study included a cross-sectional online survey of palliative care services and hospices, and a multicentre cohort study of COVID-19 patients seen and treated by palliative care services. It is made up of two work packages.\n\nWork package 1 aimed to identify how palliative care and hospice services changed, how their staff, volunteers and others adapted their practices, and their challenges and innovations.\n\nWork package 2 determined which symptoms and problems patients had, how they changed over time, and which treatments/therapies were used and seemed to work best.\n\nThis dataset covers WP1, the online survey of palliative care services, the first main component of CovPall. The survey opened on April 23rd, 2020 and closed on July 31st, 2020. 458 valid responses were collected: 277 UK, 85 rest of Europe, 95 rest of the world, 1 missing country. Overall, 261 services provided inpatient palliative care units, 261 home care teams, 217 hospital palliative care teams, and 119 home nursing teams. Services were usually publicly, or charity managed, and many services offered care in more than one setting.\n\nMore information regarding data collected during the survey, as well as a copy of the questionnaire used for data collection, can be found at the link below: \n\nhttps://www.jpsmjournal.com/cms/10.1016/j.jpainsymman.2021.01.138/attachment/23618c62-a710-4cad-8a27-326f24ed6f1a/mmc3.pdf', 'isPartOf': 'NOT APPLICABLE'}",20e2a770-d086-4b17-858f-805bd53d18c7,https://web.www.healthdatagateway.org/dataset/20e2a770-d086-4b17-858f-805bd53d18c7,"{'access': {'deliveryLeadTime': '2-4 WEEKS', 'jurisdiction': ['GB-ENG'], 'dataProcessor': 'Not Applicable', 'accessRequestCost': ['N/A'], 'dataController': ""Irene J Higginson, (Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London) as the Chief Investigator of CovPall study is the Intellectual Property owner of the CovPall Survey."", 'accessRights': ['https://www.kcl.ac.uk/cicelysaunders/research/evaluating/covpall-study/covpall-study'], 'accessService': 'Applications for use of the survey data can be made for up to 10 years, and will be considered on a case by case basis on receipt of a methodological sound proposal to achieve aims in line with the original protocol. The study protocol is available on request. All requests for data access should be addressed to the Chief Investigator via the details on the CovPall website (https://www.kcl.ac.uk/cicelysaunders/research/evaluating/covpall-study, and palliativecare@kcl.ac.uk) and will be reviewed by the Study Steering Group.'}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE', 'GEOGRAPHICAL RESTRICTIONS', 'NO LINKAGE'], 'isReferencedBy': ['Oluyase AO, Hocaoglu M, Cripps RL, Maddocks M, Walshe C, Fraser LK, Preston N, Dunleavy L, Bradshaw A, Murtagh FEM, Bajwah S, Sleeman KE, Higginson IJ; CovPall study team (2021). The challenges of caring for people dying from COVID-19: a multinational, observational study (CovPall). J Pain Symptom Manage. (https://www.jpsmjournal.com/article/S0885-3924(21)00159-7/fulltext)  N, Dunleavy L, Bradshaw A, Murtagh FEM, Bajwah S, Sleeman KE, Higginson IJ; CovPall study team. The Challenges of Caring for People Dying From COVID-19: A Multinational, Observational Study (CovPall). doi: 10.1016/j.jpainsymman.2021.01.138. https://www.jpsmjournal.com/article/S0885-3924(21)00159-7/fulltext', 'Dunleavy L, Preston N, Bajwah S, Bradshaw A, Cripps R, Fraser LK, Maddocks M, Hocaoglu M, Murtagh FEM, Oluyase AO, Sleeman K, Higginson IJ, Walshe C (2021). ‘Necessity is the mother of invention’: Specialist palliative care service innovation and practice change in response to COVID-19. Results from a multinational survey (CovPall). doi.org/10.1177/02692163211000660. https://journals.sagepub.com/doi/full/10.1177/02692163211000660 ', 'Bradshaw A, Dunleavy L, Walshe C, Preston N, Cripps R, Hocaoglu M, Bajwah S, Maddocks M, Oluyase AO, Sleeman K, Higginson IJ, Fraser LK, Murtagh FEM (2021). Understanding and addressing challenges for Advance Care Planning in the COVID-19 pandemic: An analysis of the UK CovPall survey data from specialist palliative care services. doi.org/10.1177/02692163211017387. https://journals.sagepub.com/doi/10.1177/02692163211017387?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20%200pubmed', 'Walshe C, Garner I, Dunleavy L, Preston N, Bradshaw A, Cripps RL, Bajwah S, Sleeman KE, Hocaoglu M, Maddocks M, Murtagh FEM, Oluyase AO, Fraser LK, Higginson IJ. Prohibit, protect, or adapt? The changing role of volunteers in palliative and hospice care services during the COVID-19 pandemic. (2021). A multinational survey (CovPall). doi.org.10.1101/2021.03.28.21254486v1. https://www.medrxiv.org/content/10.1101/2021.03.28.21254486v1', 'Sleeman KE, Murtagh FEM, Kumar R, O’Donnell S, Cripps RL, Bone A, McAleese J, Lovick R, Barclay S, Higginson IJ. (2021). Dying, death and bereavement during Covid-19. Research report. London (UK): Marie Curie. 2021 April. https://www.mariecurie.org.uk/globalassets/media/documents/policy/policy-publications/2021/better-end-of-life-research-report.pdf '], 'resourceCreator': [""Cicely Saunders Institute - King's College London""], 'dataUseRequirements': ['NOT FOR PROFIT USE', 'INSTITUTION SPECIFIC RESTRICTIONS', 'ETHICS APPROVAL REQUIRED'], 'investigations': ['']}, 'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['ICD10CM'], 'format': ['Csv', 'SPSS', 'Redcap'], 'conformsTo': ['OTHER']}}","{'temporal': {'distributionReleaseDate': '2021-04-19', 'timeLag': 'NOT APPLICABLE', 'startDate': '2020-04-23', 'endDate': '2020-07-31', 'accrualPeriodicity': 'STATIC'}, 'origin': {'purpose': ['STUDY'], 'source': ['ELECTRONIC SURVEY'], 'collectionSituation': ['SERVICES']}}",2022-05-24T15:50:10Z,"[{'observedNode': 'PERSONS', 'measuredValue': '458', 'disambiguatingDescription': ""We have invited all specialist palliative care services (adult and children's) through partner organisations across the UK and the world to respond to the survey."", 'observationDate': '23/04/2020', 'measuredProperty': 'Response to Covid-19, innovations introduced, busyness, patients seen'}]",2.0.0,"{'qualifiedRelation': ['Not available '], 'derivation': ['']}",2022-05-27T12:41:01Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 157, 'structuralMetadata.columnName': 157, 'structuralMetadata.columnDescription': 157, 'structuralMetadata.dataType': 157, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'bbf492d7-28c8-4182-9dec-5a316e971778', 'description': 'CovPall Survey Complete Dataset', 'name': 'dataset_to_1_August_2020_cleaned_anew_deidentified_final_01.09.2020 - edited', 'dataElementsCount': 157, 'dataElements': 'b1d27eb3-51c1-4992-807f-c6d0449197b5, 23838ace-6c3b-4538-827d-2a12e4a94f96, 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"{'title': 'NIHR BioResource: Returned datasets', 'publisher': {'name': 'NIHR BIORESOURCE', 'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d3f'}, 'contactPoint': 'nbr@bioresource.nihr.ac.uk', 'abstract': 'The NIHR BioResource asks those collecting data on participants as part of sample-only or recall studies to offer data for re-use by others. These offers may be taken up in future.'}",261bcf76-8621-4f0d-b2e6-310993d73daa,"{'physicalSampleAvailability': ['AVAILABILITY TO BE CONFIRMED'], 'spatial': ['United Kingdom (https://www.geonames.org/2635167/united-kingdom.html)'], 'typicalAgeRange': '18-85', 'followup': '1 - 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '25a6747a-f755-455a-93c6-9bb05f6de3c7', '4.0.0': '21d1277b-baf8-4fb8-826e-3f4910d18098', '3.0.0': 'fb274dd9-27ab-4eac-9432-90373a9837e6', '1.0.0': '07abf678-a2c0-4d8b-8d25-8b9f180f9ff2', '0.0.1': '3e5ec145-d37e-4167-bb7a-cc19b27b18fa', 'latest': '21d1277b-baf8-4fb8-826e-3f4910d18098'}","{'description': 'The NIHR Bioresource consists of several groups of participants: ~70k from the general population and blood donors (COMPARE, INTERVAL and STRIDES studies); ~19k with one of ~50 rare diseases (RD) including a ~5k pilot for GEL; ~30k with Inflammatory Bowel Disease (IBD) which include the members of Gut Reaction, the Health Data Research Hub for IBD; and ~20k with Anxiety or depression (GLAD study). It intends to extend recruitment in all areas, and to other rare and common disease groups, with a target of ~300k by 2022.', 'isPartOf': 'Not Applicable'}",21d1277b-baf8-4fb8-826e-3f4910d18098,https://web.www.healthdatagateway.org/dataset/21d1277b-baf8-4fb8-826e-3f4910d18098,"{'access': {'accessRights': ['https://bioresource.nihr.ac.uk/using-our-bioresource'], 'jurisdiction': ['GB-GBN'], 'accessService': 'Some de-identified data may be released to researchers in a platform-independent filetype (e.g. CSV). However, access to any data acquired via NHS Digital is subject to strict restrictions governing where data may be accessed and from which locale - access is currently via an experimental safe haven built in Microsoft Azure.', 'deliveryLeadTime': '2-6 MONTHS', 'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)', 'accessRequestCost': ['https://bioresource.nihr.ac.uk/using-our-bioresource/industry-researchers/industry-bioresource-usage-costs/'], 'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)'}, 'formatAndStandards': {'format': ['text/csv'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en']}, 'usage': {'resourceCreator': ['NIHR BioResource. Acknowledgement text: ""We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.""'], 'isReferencedBy': ['Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': ['RESEARCH USE ONLY']}}","{'origin': {'purpose': ['STUDY'], 'collectionSituation': ['OTHER'], 'source': ['OTHER']}, 'temporal': {'accrualPeriodicity': 'IRREGULAR', 'timeLag': 'VARIABLE'}}",2020-01-13T15:06:29Z,[{}],4.0.0,{'derivation': ['Not Available']},2021-11-25T12:00:56Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
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Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'jurisdiction': 'GB-GBN', 'deliveryLeadTime': '2-6 MONTHS', 'accessRequestCost': 'Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.', 'dataController': 'NHS, SAIL Databank', 'accessRights': ['https://saildatabank.com/application-process/']}, 'formatAndStandards': {'format': ['SQL database table'], 'language': 'en', 'conformsTo': 'LOCAL', 'vocabularyEncodingScheme': 'NHS NATIONAL CODES'}}","{'origin': {'source': 'OTHER', 'purpose': 'ADMINISTRATIVE', 'collectionSituation': ['PRIMARY CARE', 'ACCIDENT AND EMERGENCY', 'COMMUNITY']}, 'temporal': {'endDate': '2012-04-01', 'distributionReleaseDate': '2021-01-01', 'accrualPeriodicity': 'BIWEEKLY', 'timeLag': '2-6 MONTHS'}}",2021-01-25T11:11:43Z,,1.0.0,"{'qualifiedRelation': ['Any SAIL dataset & reference data.'], 'derivation': ['Not Available'], 'tools': 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"{'title': 'SAIL Dementia e-Cohort (SDEC)', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'publisher': {'identifier': '5f3f98068af2ef61552e1d75', 'memberOf': 'ALLIANCE', 'name': 'SAIL'}, 'keywords': ['Dementia', 'SAIL', 'SDEC', 'core-res'], 'abstract': 'This dataset is a population-based electronic cohort containing health-related information on people with and without diagnosed dementia. It was developed by applying coding algorithms to linked routinely-collected datasets.'}",f48b7c05-6a44-480c-84c6-4f7a684f29f8,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': '1 - 10 YEARS', 'typicalAgeRange': '18-150', 'spatial': ['https://www.geonames.org/2634895/wales.html'], 'pathway': 'Primary care'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '1fe8b85a-56cd-4b4d-9d0c-f7e1a9a85cf4', '5.0.0': '226b52f4-1be8-46c2-86a4-261eb48ec542', '3.0.0': 'b9a739c2-8601-4518-bd1a-e976ed9172c8', '4.0.0': '5255d52f-b094-4f23-a2d0-7de30e3f81fa', 'latest': '226b52f4-1be8-46c2-86a4-261eb48ec542'}","{'description': 'The SAIL Dementia e-Cohort is a population-based electronic cohort (e-cohort) containing health-related information on people with and without diagnosed dementia.\n\nBy applying coding algorithms to linked routinely-collected datasets, a novel Dementia Platform UK (DPUK) cohort was developed to maximise generalisability and utility for a broad range of research questions and methodologies. It aims to minimise duplication of effort, increase reproducibility, reduce costs, and allow a broader range of researchers to apply to use SAIL data.', 'isPartOf': 'Not Applicable', 'associatedMedia': ['https://saildatabank.com/about-us/overview/']}",226b52f4-1be8-46c2-86a4-261eb48ec542,https://web.www.healthdatagateway.org/dataset/226b52f4-1be8-46c2-86a4-261eb48ec542,"{'access': {'dataProcessor': 'SAIL Databank', 'accessRights': ['https://saildatabank.com/application-process/'], 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'jurisdiction': ['GB'], 'dataController': 'SAIL Databank', 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'deliveryLeadTime': '2-6 MONTHS'}, 'formatAndStandards': {'vocabularyEncodingScheme': ['READ', 'ICD10', 'ICD9'], 'language': ['en'], 'format': ['SQL database table'], 'conformsTo': ['LOCAL']}, 'usage': {'isReferencedBy': ['Wilkinson, Tim; Schnier, Christian; Akbari, Ashley; Orton, Chris; Sleegers, Kristel; Gallacher, John; Lyons, Ronan A; Sudlow, Cathie LM. (2019). SAIL dementia e-cohort (SAIL-DeC), [dataset]. University of Edinburgh. Usher Institute of Population Health Sciences and Informatics. https://doi.org/10.7488/ds/2505'], 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'resourceCreator': ['Derived dataset by HDR UK team at Swansea University'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'RESEARCH SPECIFIC RESTRICTIONS']}}","{'temporal': {'startDate': '2019-03-01', 'distributionReleaseDate': '2021-01-26', 'accrualPeriodicity': 'MONTHLY', 'timeLag': 'OTHER', 'endDate': '2021-01-26'}, 'origin': {'source': ['EPR'], 'collectionSituation': ['CLINIC', 'PRIMARY CARE', 'OUTPATIENTS', 'IN-PATIENTS'], 'purpose': ['STUDY', 'CARE', 'ADMINISTRATIVE']}}",2021-09-17T16:27:06Z,"[{'observedNode': 'EVENTS', 'measuredValue': '3000000', 'observationDate': '01/09/2021', 'measuredProperty': 'Count', 'disambiguatingDescription': 'Approx 70-80% coverage of Welsh population through GP 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"{'title': 'QTL Programme at MRC HGU', 'keywords': ['QTL Programme', 'UKCRC Tissue Directory', 'MRC HGU', 'Fit and well', 'Quantitative Trait Locus'], 'publisher': {'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY', 'contactPoint': 'accessQTL@ed.ac.uk'}, 'abstract': 'Collection of samples and data across the following diseases: Fit and well.', 'doiName': 'Not Available', 'contactPoint': 'accessQTL@ed.ac.uk'}",351cc017-caff-4303-8a48-1aa1b90fce2b,"{'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM', 'URINE', 'WHOLE BLOOD'], 'spatial': 'Scotland', 'typicalAgeRange': '40-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '9a55597c-cdda-4d3e-8508-b29470faf1dd', '3.0.0': '22739526-317f-4b0e-a23b-ece0c859958f', '1.0.0': '29667e9a-122f-443b-a357-80f9557553bf', '2.0.0': 'ee5f4405-6930-4a7b-ba00-85a8e8c8a8b9', 'latest': '22739526-317f-4b0e-a23b-ece0c859958f'}","{'description': 'The QTL (Quantitative Trait Locus) programme is based at the MRC Human Genetics Unit in the University of Edinburgh. The research programme uses the unique population structures in our Scottish and Croatian cohorts to deliver biological understanding of the causes of variation in complex traits. Together, the ORCADES and VIKING biobanks contain 4,000 samples from volunteers with ancestry from the Northern Isles of Scotland, www.ed.ac.uk/viking. Collectively, the CROATIA cohorts contain 6,000 participants. All of these biobanks were constructed from people with high kinship and extensive pedigree structures. They were collected together with detailed phenotype data, some of which is longitudinal. Plasma, serum, urine and DNA samples, as well as detailed genomic, proteomic and metabolomics data can be made available for collaborative research.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",22739526-317f-4b0e-a23b-ece0c859958f,https://web.www.healthdatagateway.org/dataset/22739526-317f-4b0e-a23b-ece0c859958f,"{'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}, 'access': {'dataController': 'University of Edinburgh', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED.', 'accessRights': 'Please contact the publisher using Contact Point details provided.', 'jurisdiction': 'GB-SCT', 'accessRequestCost': 'Not specified', 'dataProcessor': 'Not Applicable'}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}}","{'temporal': {'startDate': '2002-01-01', 'accrualPeriodicity': 'IN PROGRESS', 'distributionReleaseDate': '2018-11-02'}}",2020-01-13T17:16:37Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T16:11:15Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': ""Children's Cancer and Leukaemia Group (CCLG) Tissue Bank"", 'publisher': {'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY', 'contactPoint': 'tissuebank@cclg.org.uk'}, 'contactPoint': 'tissuebank@cclg.org.uk', 'doiName': 'Not Available', 'keywords': [""Children's Cancer"", 'CCLG', 'Tissue Bank', 'UKCRC Tissue Directory', 'Leukaemia'], 'abstract': ""Samples & data for  following disorders: Astrocytoma of brain ,Ependymoma , Germinoma (morphologic abnormality),Glioma ,Hepatoblastoma ,Hodgkin's disease ,Langerhans cell histiocytosis ,Medulloblastoma Nephroblastoma and others.\nFull list in Description…""}",c232fa07-5d28-4bdc-b540-1ad8d933c5f9,"{'physicalSampleAvailability': ['DNA', 'TISSUE'], 'typicalAgeRange': '0-12', 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '975a13d7-fff4-486a-91b0-0e2f2792c3b3', '3.0.0': '227fe0ea-d76e-4c14-a33e-ca255380937d', '1.0.0': 'cde56eb2-7c71-4b5a-8d24-d5f9b13ffd4f', '2.0.0': '89ae7d31-d183-4f5e-b754-7ae14449da76', 'latest': '227fe0ea-d76e-4c14-a33e-ca255380937d'}","{'description': ""National collection of childhood, teenagers and young adults solid tumour samples and lymphomas in the UK.\nSamples are centrally stored at the Central Bank, Newcastle University.\nWe provide access to collection of samples and data across the following diseases: \n•\tAstrocytoma of brain (disorder)\n•\tEpendymoma (disorder)\n•\tGerminoma (morphologic abnormality)\n•\tGlioma (disorder)\n•\tHepatoblastoma (disorder)\n•\tHodgkin's disease (disorder)\n•\tLangerhans cell histiocytosis (disorder)\n•\tMedulloblastoma (disorder)\n•\tNephroblastoma (disorder)\n•\tNeuroblastoma (disorder)\n•\tOsteosarcoma of bone\n•\tRetinoblastoma (disorder\n•\tRhabdomyosarcoma (disorder)"", 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",227fe0ea-d76e-4c14-a33e-ca255380937d,https://web.www.healthdatagateway.org/dataset/227fe0ea-d76e-4c14-a33e-ca255380937d,"{'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}, 'access': {'accessRequestCost': 'Not specified', 'dataController': 'University of Leicester', 'jurisdiction': 'GB-ENG', 'dataProcessor': 'Not Applicable', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'accessRights': 'Please contact the publisher using Contact Point details provided'}, 'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}}","{'temporal': {'startDate': '1998-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:04:34Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T15:57:49Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'University of Liverpool - GCP Laboratory Facility', 'keywords': ['Malignant eye melanoma', 'Malignant oral cavity tumour', 'Laboratory', 'UKCRC Tissue Directory', 'GCP', 'Malignant breast tumour', 'Malignant lymphoma', 'Carcinoma in situ of breast', 'Malignant urinary bladder tumour', 'University of Liverpool', 'Facility'], 'publisher': {'memberOf': 'ALLIANCE', 'contactPoint': 'gcplab@liverpool.ac.uk', 'name': 'TISSUE DIRECTORY'}, 'contactPoint': 'gcplab@liverpool.ac.uk', 'doiName': 'Not Available', 'abstract': 'Samples & data for following diseases: Carcinoma in situ of breast,Malignant lymphoma ,Malignant eye melanoma,Malignant oral cavity tumour,Malignant urinary bladder tumour,Malignant breast tumour and others.\nFull list in Description…'}",029b7f0f-911e-46ce-837f-031959f067da,"{'physicalSampleAvailability': ['PERIPHERAL BLOOD CELLS', 'PLASMA', 'SERUM', 'TISSUE', 'URINE', 'WHOLE BLOOD'], 'typicalAgeRange': '15-150', 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'e0387ed5-4a91-4dab-a5b9-0f773681b7f0', '3.0.0': '22974866-44c7-4176-9c51-6b57a1dda39d', '1.0.0': 'c3a49d91-8ded-414e-8ef9-e3bd63f08cd7', '2.0.0': 'e8f23004-f1f7-4a36-859f-25af6ca6433b', 'latest': '22974866-44c7-4176-9c51-6b57a1dda39d'}","{'description': ""Combined repository of clinical trial samples for 'future use'.  \nWill include samples from clinical trials co-ordinated by the Liverpool Cancer Trials Unit and from studies with Liverpool Principal Investigators. \nWe provide access to collection of samples and data across the following diseases: \n•\tCarcinoma in situ of breast\n•\tMalignant lymphoma (disorder)\n•\tMalignant melanoma of eye (disorder)\n•\tMalignant tumour of oral cavity (disorder)\n•\tMalignant tumour of urinary bladder (disorder)\n•\tMalignant tumour of breast\n•\tMalignant tumour of pancreas\n•\tOsteoradionecrosis (disorder)"", 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",22974866-44c7-4176-9c51-6b57a1dda39d,https://web.www.healthdatagateway.org/dataset/22974866-44c7-4176-9c51-6b57a1dda39d,"{'access': {'jurisdiction': 'GB-ENG', 'dataProcessor': 'Not Applicable', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'dataController': 'University of Liverpool', 'accessRequestCost': 'Not specified'}, 'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2007-01-01'}}",2020-01-13T17:14:19Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:17:45Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'CDE Encounters', 'publisher': {'name': 'BARTS HEALTH', 'contactPoint': 'surjeet.janjuha@nhs.net', 'memberOf': 'ALLIANCE'}, 'abstract': ""Locally defined dataset containing details of all patient encounters (IP, OP, DC, Maternity, ED, Direct servcies) recorded within the Trust's EHR system. This includes the coding against these encounters which use ICD10, OPCS4 and SNOMED."", 'contactPoint': 'surjeet.janjuha@nhs.net'}",3598723f-62fb-4377-9a8b-b264ced1aabd,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '22aecb42-9ea3-4d60-b392-d3cdd0a806f8'},"{'description': ""Locally defined dataset containing details of all patient encounters (IP, OP, DC, Maternity, ED, Direct servcies) recorded within the Trust's EHR system. This includes the coding against these encounters which use ICD10, OPCS4 and SNOMED."", 'isPartOf': 'CDE'}",22aecb42-9ea3-4d60-b392-d3cdd0a806f8,https://web.www.healthdatagateway.org/dataset/22aecb42-9ea3-4d60-b392-d3cdd0a806f8,"{'access': {'accessRights': 'Available locally within Trust corporate Data Warehouse System and authorised access by Trust staff only.\nDataset is also available within Discovery.', 'deliveryLeadTime': 'OTHER'}}",,2021-04-06T16:38:22Z,,0.0.1,,2021-04-06T16:35:19Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'GENOMICS ENGLAND 100K RARE DISEASE & COMMON', 'publisher': {'contactPoint': 'gecip-help@genomicsengland.co.uk', 'memberOf': 'ALLIANCE', 'name': 'GENOMICS ENGLAND'}, 'contactPoint': 'gecip-help@genomicsengland.co.uk', 'doiName': 'Not Available', 'keywords': ['rare disease', 'genome', 'genomics', 'data', 'DNA', 'DATA-CAN'], 'abstract': 'Rare Disease (RD) data are presented at the level of RD families, RD pedigrees, and participants. Participants are consenting individuals who have had their genome sequenced. Pedigree members are extended members of the proband’s family.'}",3f2b37f1-e8f7-42e5-83c4-fc9e1c58725d,"{'spatial': 'England, UK', 'pathway': 'Linked datasets cover secondary care.', 'physicalSampleAvailability': ['DNA'], 'followup': 'OTHER', 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '05986a17-4589-4ee8-a10f-2db4ce925978', '2.0.0': '239e8253-a997-4676-8940-16b74a004365', '1.0.0': 'b0a8085e-8cf0-45ee-b4a6-12a4a545ca70', 'latest': '239e8253-a997-4676-8940-16b74a004365'}","{'description': ""Rare Disease data are presented at the level of Rare Disease families (families of probands), Rare Disease pedigrees, and participants. Participants are individuals who have consented to be part of the project with the expectation that a sample of their DNA will be obtained and their genome sequenced. Pedigree members are extended members of the proband’s family, this includes participants as well a small amounts of deidentified data recorded to allow a full picture of the proband’s extended family. This additional information is extracted from the proband’s medical record.\n\nAll Rare Disease table names are prefixed with “rare_diseases_”.\n\nData at the Level of Rare Disease Families:\n\nrare_diseases_family:\n\nData describing the families of rare disease probands participating in the 100,000 Genomes Project. It includes the family group type, the status of the family’s pre-interpretation clinical review and the settings that were chosen for the interpretation pipeline at the clinical review.\n\nrare_diseases_pedigree:\n\nData describing the Rare Disease participants, linking pedigrees to probands and their family members.\n\nrare_diseases_pedigree_member:\n\nData describing the Rare Disease pedigree members, similar to the data about each individual participant in the participant table (common data view, see section 8.2). It may also include additional data, such as the age of onset of predominant clinical features; data on links to other family members; as well as data collected only for Phenotypes.\n\nData at the Level of Rare Disease Participants.\n\nThe data presented in these tables provides information on disease progression and pertinent medical history:\n\nrare_diseases_participant_disease:\n\nData describing the rare disease participants' disease type/subtype assigned to them upon enrolment, and the date of diagnosis.\n\nrare_diseases_participant_phenotype:\n\nData describing the Rare Disease participants’ phenotypes. For each Rare Disease participant in the 100,000 Genomes Project, there are data about whether a phenotypic abnormality as defined by an HPO term is present and what the HPO term is, as well as the age of onset, the severity of manifestation, the spatial pattern in the body and whether it is progressive or not. Please note that these data are only available for a subset of the rare disease participants.\n\nrare_diseases_gen_measurement:\n\nFor Rare Disease participants in the 100,000 Genomes Project, this table contains general measurements relevant to the disease, alongside the date that the measurements were taken on. Please note that these data are only available for a subset of the rare disease participants.\n\nrare_diseases_early_childhood_observation:\n\nFor Rare Disease participants in the 100,000 Genomes Project, this table contains measurements and milestones provided by the GMCs, related to childhood development. Please note that these data are only available for a subset of the rare disease participants.\n\nrare_diseases_imaging\n\nFor Rare Disease participants in the 100,000 Genomes Project, this table contains various data and measurements from past scans, alongside the date of the scans. Please note that these data are only available for a subset of the rare disease participants.\n\nrare_diseases_invest_genetic:\n\nFor a proportion of Rare Disease participants in the 100,000 Genomes Project, this table contains information on any genetic tests carried out. Data characterising the genetic investigation is recorded alongside records of the sample tissue source and the type of testing laboratory. Please note that these data are only available for a subset of the rare disease participants.\n\nrare_diseases_invest_genetic_test_result:\n\nFor a proportion of Rare Disease participants in the 100,000 Genomes Project, this table contains the results of any genetic tests carried out. Following on from the rare_diseases_invest_genetic table, a summary of the results is presented and contextualised by testing method and scope. Please note that these data are only available for a subset of the rare disease participants.\n\nrare_diseases_invest_blood_laboratory_test_report:\n\nFor a proportion of Rare Disease participants in the 100,000 Genomes Project, this table contains the results of any blood tests carried out. Over 400 blood values are recorded alongside type and technique of testing and the status of the participating patient in the care pathway. Please note that these data are only available for a subset of the rare disease participants."", 'isPartOf': '100K Primary Data', 'associatedMedia': ['https://cnfl.extge.co.uk/display/GERE/Genomics+England+Research+Environment', 'https://cb.extge.co.uk/labkey/CohortBrowser/project-begin.view?pageId=Introduction', 'https://youtu.be/Kie3HY8y6AU', 'https://youtu.be/EAjPVcAlGpM', 'https://youtu.be/5QhNjE_hdsQ']}",239e8253-a997-4676-8940-16b74a004365,https://web.www.healthdatagateway.org/dataset/239e8253-a997-4676-8940-16b74a004365,"{'access': {'jurisdiction': 'GB', 'dataController': 'GENOMICS ENGLAND', 'accessRights': ['https://www.genomicsengland.co.uk/about-gecip/joining-research-community/'], 'accessService': 'More information about the Genomics England Research Environment can be found here:\nhttps://www.genomicsengland.co.uk/about-genomics-england/research-environment/\nhttps://research-help.genomicsengland.co.uk/display/GERE/1.+The+Genomics+England+Research+Environment\nGenomics England 100k participants have consented to longitudinal lifetime followup and recontact safely through our clinical network.\nBRST (Bioinformatics Research Services) are a team of bioinformatics who know the dataset inside out and provide consultancy projects on a case by case basis.  \nOur network of clinical and medical experts can be made available on case by case basis.\nResearchers have the opportunity to work with our and access the GeCIP network who are a community of world-leading experts in specific cancers and rare diseases.', 'deliveryLeadTime': '2-6 MONTHS', 'accessRequestCost': 'Fees will be dependent on the type of access that is necessary. Raw data is not eligible for export. Summary-level data may be exported provided that it is approved through the Genomics England Airlock Process', 'dataProcessor': 'GENOMICS ENGLAND'}, 'formatAndStandards': {'conformsTo': ['LOCAL', 'OMOP', 'NHS DATA DICTIONARY', 'OTHER'], 'vocabularyEncodingScheme': ['OPCS4', 'SNOMED CT', 'HPO', 'OTHER'], 'format': ['Multiple Formats Available'], 'language': 'en'}, 'usage': {'dataUseRequirements': ['ETHICS APPROVAL REQUIRED', 'PROJECT SPECIFIC RESTRICTIONS', 'PUBLICATION MORATORIUM'], 'investigations': ['https://research.genomicsengland.co.uk/research-registry/browse/'], 'isReferencedBy': ['https://www.genomicsengland.co.uk/about-gecip/publications/'], 'dataUseLimitation': 'GENERAL RESEARCH USE', 'resourceCreator': 'The 100,000 Genomes Project Protocol v3, Genomics England. doi:10.6084/m9.figshare.4530893.v3. 2017.\nPublications that use the Genomics England Database should include an author as: Genomics England Research Consortium. Please see publication policy.'}}","{'temporal': {'startDate': '2014-01-01', 'distributionReleaseDate': '2020-09-03', 'accrualPeriodicity': 'QUARTERLY', 'endDate': '2019-01-01', 'timeLag': '2-6 MONTHS'}, 'origin': {'purpose': ['STUDY', 'CARE', 'OTHER'], 'source': ['EPR', 'ELECTRONIC SURVEY', 'LIMS', 'OTHER'], 'collectionSituation': ['CLINIC', 'OUTPATIENTS', 'IN-PATIENTS']}}",2020-04-07T11:38:16Z,"[{'observedNode': 'Persons', 'measuredValue': '71,800', 'disambiguatingDescription': 'Rare Disease Participants', 'observationDate': '2020-09-03', 'measuredProperty': 'Count'}, {'observedNode': 'Findings', 'measuredValue': '74,008', 'disambiguatingDescription': 'Rare Disease - Number of genomes', 'observationDate': '2020-09-03', 'measuredProperty': 'Count'}]",2.0.0,"{'derivation': ['Multiple'], 'tools': ['https://github.com/genomicsengland'], 'qualifiedRelation': [' HES Accident and Emergency', 'HES Admitted Patient Care', ' HES Outpatient Care', 'Diagnostic Imaging Dataset (DID)', 'Patient Reported Outcome Measures (PROMs)', 'Mental Health Minimum Data Set (MHMDS)', 'Office for National Statistics - Death details data (ONS)', 'Systemic Anti-Cancer Therapy Data Set (SACT)', 'National Radiotherapy Dataset (RTDS)', 'Cancer Registration (AV) tables', 'Cancer waiting times (CWT)', 'Lung Cancer Data Audit (LUCADA)', 'PHE Diagnostic Imaging Dataset (NCRAS_DID)']}",2021-01-15T10:05:07Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 17, 'structuralMetadata.tableName': 17, 'structuralMetadata.tableDescription': 15, 'structuralMetadata.dataElementsCount': 763, 'structuralMetadata.columnName': 763, 'structuralMetadata.columnDescription': 728, 'structuralMetadata.dataType': 763, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '08ea797a-9802-4008-acdb-43157223797b', 'description': 'Data describing the families of rare disease probands participating in the 100,000 Genomes Project. 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"{'title': 'NHS Tayside and Fife Accident & Emergency Dataset (PHS/National)', 'publisher': {'identifier': '607db9c4e1f9d3704d570d1f', 'memberOf': 'ALLIANCE', 'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE'}, 'contactPoint': 'hicsupport@dundee.ac.uk', 'keywords': ['Accident & Emergency', 'HIC', 'Tayside', 'Fife', 'Scotland'], 'abstract': 'Accident and Emergency Statistics. There are two types: episode and aggregate level data.'}",750063ea-6bfd-4492-9748-2a18080cf6ea,"{'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'UNKNOWN', 'spatial': ['https://www.geonames.org/2636157/tayside-region.html', 'http://www.geonames.org/2649469/fife.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '23d790f2-de80-4c7a-b57a-03c8467c54e9'},"{'description': 'Accident and Emergency Statistics. 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Some smaller sites with minor injury units or community hospitals only submit aggregate files containing monthly summary attendance and compliance figures only. This is because they do not have the information systems and support to enable collection of detailed patient based information. 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"{'title': 'Arden Tissue Bank', 'doiName': 'Not Available', 'publisher': {'contactPoint': 'ardentissuebank@uhcw.nhs.uk', 'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE'}, 'keywords': ['Tissue Bank', 'UKCRC Tissue Directory', 'Lung', 'Fit and Well', 'Arden', 'Biobank', 'Tumour'], 'contactPoint': 'ardentissuebank@uhcw.nhs.uk', 'abstract': 'Collection of samples and data across the following diseases: Fit and well, Malignant tumour of lung'}",62fdfd1c-f195-49cc-b3a1-7d9fd2cc8e1b,"{'typicalAgeRange': '40-150', 'physicalSampleAvailability': ['TISSUE'], 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': 'c29c3fbe-700e-4f85-8943-5557c30c1dfa', '3.0.0': '263f4ce3-7ccf-45c3-9d41-c1f5ed14cc81', '1.0.0': '01c6d257-e6bd-4d58-ac8e-e337adb498d9', '0.0.1': '78ba5d2c-b23c-48e1-bf2b-bc12783ad6bf', 'latest': '263f4ce3-7ccf-45c3-9d41-c1f5ed14cc81'}","{'description': 'Arden Tissue Bank operates under a Human Tissue Authority post mortem licence within a district general hospital. \nThe biobank has generic ethical approval, and is able to collect tissues prospectively across a wide range of tissue types.\nIn addition the biobank has access to the full pathological archive across three hospital sites. The cellular pathology archive is searchable by SNOMED coding for selection of specific conditions of interest. The cellular pathology archive alone totals almost 2 million blocks, with full patient data available from 2005 including pathology reports.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",263f4ce3-7ccf-45c3-9d41-c1f5ed14cc81,https://web.www.healthdatagateway.org/dataset/263f4ce3-7ccf-45c3-9d41-c1f5ed14cc81,"{'access': {'jurisdiction': 'GB-ENG', 'accessRequestCost': 'Not specified', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'dataProcessor': 'Not Applicable', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'dataController': 'University Hospitals Coventry & Warwickshire NHS Trust'}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress'], 'conformsTo': ['SNOMED']}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'distributionReleaseDate': '2019-07-23', 'startDate': '2005-01-01'}}",2020-01-13T17:04:30Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T15:55:41Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Welsh Dispensing Dataset (WDDS)', 'keywords': ['Prescriptions', 'Dispensing', 'Prescribing', 'SAIL', 'NCS', 'National Core Study', 'COVID-19', 'project-specific', 'WDDS'], 'abstract': 'The Welsh Dispensing Dataset covers prescriptions that are prescribed in Wales by GPs (general medical practitioners) and non medical prescribers that have prescribed on behalf of the GP practice, that are then dispensed in the community within Wales.', 'publisher': {'identifier': '5f3f98068af2ef61552e1d75', 'name': 'SAIL', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'SAILDatabank@swansea.ac.uk'}",50ef6443-ed4b-40f9-97fb-1cfd53be6579,"{'typicalAgeRange': '0-150', 'spatial': ['https://www.geonames.org/2634895/wales.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'All pathways with prescription from primary care', 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'5.0.0': '18a3db41-d064-4150-a782-68c63d3c5275', '7.0.0': '268d54cf-189e-46ea-8f0e-71ad8907bea3', '6.0.0': '4232439b-610b-48ec-abe3-f8c8fe818817', 'latest': '268d54cf-189e-46ea-8f0e-71ad8907bea3'}","{'description': 'The data covers prescriptions that are prescribed in Wales by GPs (general medical practitioners) and non medical prescribers that have prescribed on behalf of the GP practice, that are then dispensed in the community within Wales. \n\nThe data includes all prescribed medicines, dressings and appliances that are dispensed each month. If a patient does not take a prescription to the pharmacy for dispensing, then the information will not be included in the dataset.  Information includes - the number of prescription items dispensed by each community pharmacy in Wales, broken down by the GP practice in which they prescribed, and also the number of prescription items prescribed in each GP practice in Wales broken down by the pharmacy that dispensed those items.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/']}",268d54cf-189e-46ea-8f0e-71ad8907bea3,https://web.www.healthdatagateway.org/dataset/268d54cf-189e-46ea-8f0e-71ad8907bea3,"{'access': {'dataController': 'NHS Wales Shared Services Partnership', 'accessRights': ['https://saildatabank.com/application-process/'], 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'deliveryLeadTime': '2-6 MONTHS', 'jurisdiction': ['GB-WLS'], 'dataProcessor': 'SAIL Databank'}, 'usage': {'resourceCreator': ['NHS Wales Shared Services Partnership'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'isReferencedBy': ['Not Available']}, 'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'format': ['SQL database table']}}","{'temporal': {'accrualPeriodicity': 'MONTHLY', 'startDate': '2015-04-01', 'distributionReleaseDate': '2020-12-13', 'endDate': '2021-07-14', 'timeLag': '2-4 WEEKS'}, 'origin': {'purpose': ['ADMINISTRATIVE'], 'source': ['OTHER'], 'collectionSituation': ['PRIMARY CARE', 'PHARMACY']}}",2021-09-13T15:26:34Z,"[{'measuredValue': '3000000', 'observationDate': '01/09/2021', 'measuredProperty': 'Count', 'observedNode': 'EVENTS'}]",7.0.0,"{'derivation': ['Not Available'], 'tools': ['https://conceptlibrary.saildatabank.com/'], 'qualifiedRelation': ['Yes. To any SAIL dataset & reference data.']}",2022-02-03T14:39:52Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 2, 'structuralMetadata.tableName': 2, 'structuralMetadata.tableDescription': 2, 'structuralMetadata.dataElementsCount': 26, 'structuralMetadata.columnName': 26, 'structuralMetadata.columnDescription': 26, 'structuralMetadata.dataType': 26, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'afc97abe-4742-4c87-8703-d6d18b463e7b', 'description': 'Welsh Dispensing Dataset Prescription Product Information Table', 'name': 'DISPENSING_WDDS', 'dataElementsCount': 12, 'dataElements': 'bcedbe12-5ef0-456c-98f5-86309941af19, 217383e9-0bb9-4712-b731-ac648f932178, 31992ea9-3515-425c-a45e-bb0e3cf7b81b, a96b5062-d4c4-406c-8072-b79d0616b82e, b4f5aedc-8bae-4f60-8479-8c98b45a058a, 27b71d23-5527-467a-bc4b-86b546ace7ea, 77567b01-039d-405a-b008-8e78e9c06281, 44ac794e-8d44-4b1d-8cd0-f0270c6c8377, 769ee607-4db6-4913-ab9e-b0b4ede1515b, c5a0d4af-c5d4-4feb-b89f-c3ba5a89091f, b048aa74-6d15-4718-8280-4bb1fa49f778, 9fede283-9280-4295-ae8a-e71b9d81a532'}, {'id': 'ae6abe2d-65f7-430c-8b32-1c0fded7d00a', 'description': 'Welsh Dispensing Dataset SAIL Person Linkage Table', 'name': 'DISPENSING_ALF', 'dataElementsCount': 14, 'dataElements': 'f651680a-8292-46ae-84db-0dbdebb5e081, 10980432-b356-49f3-baf1-3b4a97fe4dd0, 05b805d2-7434-41bb-bc34-dac163cf97df, 11a3ebf8-3b9e-4562-a5d0-28f6c22de9d7, 85cf6e78-543a-4b2a-a7a8-14fcc4d3abc8, aa5d5a80-f67c-41d9-be0c-6b2696ddba20, c1e037b7-778c-4ced-a937-319f20b13f3c, e44f0865-7193-4c6d-b33b-4e5ea32e0080, 9e9d2350-67b2-4d83-b081-60f07badbef7, 8100e285-b4d6-4adc-b754-8b40015c7d4d, 4734ede1-4449-405d-b140-680d1100c33d, a5a39c5c-8908-472e-b32f-e6b3063d1b83, f43c15be-c07d-4512-982c-4a5046686370, 122dfa03-ab32-44a5-a8fb-d44efef54e6d'}]}"
"{'title': 'Child Health Systems Programme - 27-30Months Review', 'publisher': {'identifier': '5f8992a97150a1b050be0712', 'memberOf': 'ALLIANCE', 'name': 'PUBLIC HEALTH SCOTLAND'}, 'abstract': 'The 27-30 month review form is completed at around 27-30 months of age and is carried out by a health visitor. This review started in April 2013 and is offered to all children (previously only children requiring structured additional/intensive support).', 'contactPoint': 'phs.edris@phs.scot', 'keywords': ['Child Health']}",d2d57b7f-95d8-425f-b2fd-cc9aff05e659,"{'spatial': ['https://www.geonames.org/2638360/scotland.html'], 'typicalAgeRange': '0-4'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '446ede47-1fdf-47ae-87df-54e93b7f6ed1', '6.0.0': '26ac9d75-df76-49e5-ba41-d4c0e83a8765', '0.0.1': '5059259e-4481-4bce-8569-567ae531bc91', '2.0.0': '49eaa326-66fd-440f-8c29-160d5dd16d4e', '3.0.0': 'ceca959a-11b1-4da3-8289-3cf22c9fc541', '4.0.0': '4f721a52-b3cd-4594-9099-5185f80832c7', '5.0.0': '26b03931-18ce-4a83-99de-1fca258518f3', 'latest': '26ac9d75-df76-49e5-ba41-d4c0e83a8765'}","{'description': 'The 27-30 month review form is completed at around 27-30 months of age and is carried out by a health visitor. This review started in April 2013 and is offered to all children (previously only children requiring structured additional or intensive support were invited for a review at this stage). Examples of information collected include: development (social, behavioural, communication, gross motor, vision, hearing), physical measurements (height and weight) and diagnoses / issues (Read coded). Identification data such as name, address, GP etc. are also checked and updated.', 'associatedMedia': ['https://www.isdscotland.org/Health-Topics/Child-Health/Child-Health-Programme/Child-Health-Systems-Programme-Pre-School.asp'], 'isPartOf': 'Child Health Surveillance Programme (CHSP)'}",26ac9d75-df76-49e5-ba41-d4c0e83a8765,https://web.www.healthdatagateway.org/dataset/26ac9d75-df76-49e5-ba41-d4c0e83a8765,"{'access': {'dataProcessor': 'National Services Scotland', 'jurisdiction': ['GB'], 'accessRights': ['https://www.informationgovernance.scot.nhs.uk/pbpphsc/', 'https://www.isdscotland.org/Products-and-Services/eDRIS/', 'https://publichealthscotland.scot/contact-us/bespoke-data-analysis-requests/'], 'dataController': 'Public Health Scotland', 'accessRequestCost': ['Research Projects - https://www.isdscotland.org/Products-and-Services/eDRIS/', 'Bespoke data analysis requests - https://publichealthscotland.scot/contact-us/bespoke-data-analysis-requests/'], 'accessService': 'Scottish National Data Safe Haven - https://www.isdscotland.org/Products-and-Services/eDRIS/', 'deliveryLeadTime': 'VARIABLE'}, 'formatAndStandards': {'format': ['text/csv'], 'vocabularyEncodingScheme': ['OTHER'], 'language': ['en'], 'conformsTo': ['OTHER']}, 'usage': {'resourceCreator': ['National Services Scotland']}}","{'temporal': {'accrualPeriodicity': 'MONTHLY', 'timeLag': 'OTHER', 'startDate': '2013-04-01'}}",2020-01-10T22:06:55Z,[{}],6.0.0,,2021-11-04T10:24:51Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 6, 'structuralMetadata.tableName': 6, 'structuralMetadata.tableDescription': 6, 'structuralMetadata.dataElementsCount': 48, 'structuralMetadata.columnName': 48, 'structuralMetadata.columnDescription': 48, 'structuralMetadata.dataType': 48, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'e9cc3e57-a823-4693-9ddf-d9ad7786b071', 'description': 'Childsmile / Dental', 'name': 'Childsmile / Dental', 'dataElementsCount': 4, 'dataElements': 'c2148dd7-9a15-48a1-af16-5c8bb932a347, d62365f1-fd23-456b-9a96-3a4d15ddc4a2, a4642b3e-7735-4d0f-8515-ce78890a7b38, da73c4ed-73d9-495e-bd3c-f7db67d5a680'}, {'id': '97284a5a-249b-4ca5-be06-0915d0bac15d', 'description': 'Developmental / ASQ Scores / Tools', 'name': 'Developmental / ASQ Scores / Tools', 'dataElementsCount': 7, 'dataElements': '5323e113-4c96-4381-9fd6-eebd96978d3a, d639530b-b750-473b-aaa0-25c08dea0a5c, f0300413-6fe9-42e6-b393-c4510386ec44, 93759538-2da9-46f2-9b12-2d6f6e304511, 2e75ebab-d9db-4ef6-bfad-1f36dd8a2914, 85b77b0f-e117-4151-93a3-956aa45131c6, 3da4ccc7-fb11-4be6-b6df-dc2c6d495622'}, {'id': 'a9fdb166-4dbc-48f1-97e8-2fe46170def0', 'description': 'Future Action', 'name': 'Future Action', 'dataElementsCount': 2, 'dataElements': 'dab8d8a9-33ae-4d40-b0d5-09c4790d3217, 09c05dd9-4e9c-4945-ac6f-c18029551db5'}, {'id': 'c16fd5c8-88aa-457c-adf5-cf809ab0c1e1', 'description': 'Issues / Issues Status / Read Coding.   Recall & Unscheduled reviews', 'name': 'Issues / Issues Status / Read Coding.   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"{'title': 'Scottish Human Papillomavirus Archive', 'contactPoint': 'ramya.bhatia@ed.ac.uk', 'publisher': {'contactPoint': 'ramya.bhatia@ed.ac.uk', 'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY'}, 'abstract': 'Collection of samples and data across the following diseases: Malignant tumour of cervix', 'doiName': 'Not Available', 'keywords': ['UKCRC Tissue Directory', 'Biorepository', 'Scottish', 'Archive', 'HPV', 'Malignant tumour of cervix', 'Human Papillomavirus']}",4883530f-1c8d-49aa-886e-ea3b958772ea,"{'physicalSampleAvailability': ['DNA', 'TISSUE'], 'spatial': 'Scotland', 'typicalAgeRange': '15-44'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '82a8e730-e2ed-4d38-98c1-4dad1fa25778', '3.0.0': '270b55a8-a9ee-44ee-8db6-eb214e721eea', '1.0.0': '97caa085-7620-41e3-8cbc-a3ab4b9eea32', '2.0.0': '342bef6e-8fa2-49f0-bdbb-c95d866aa145', 'latest': '270b55a8-a9ee-44ee-8db6-eb214e721eea'}","{'description': ""The Scottish HPV Archive is a biorepository of samples that provides a vital resource for researchers to improve the way we detect and manage HPV associated disease.\nThe archive is housed within the Queen's Medical Research Institute, University of Edinburgh, and follows the governance policies of NHS Lothian for tissue collections and the bio-repository principles of the Lothian NRS Bioresource (SAHSC).\nIt currently holds over 40,000 samples, the majority of which are cervical liquid-based cytology (LBC) samples although derivatives thereof (including nucleic acid) and other anogenital sample types are also available. For most of the samples, aliquots are kept at different temperatures (-80ËšC or -25ËšC) and different volumes (original sample and concentrated aliquot). \nThe key attribute of the Scottish HPV archive is the annotation of samples with HPV and vaccination status as well as pathology information. Such linkage is possible in Scotland with the help of the Community Health Index (CHI), Scottish Cervical Call and Recall System (SCCRS) and Cancer Registry."", 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",270b55a8-a9ee-44ee-8db6-eb214e721eea,https://web.www.healthdatagateway.org/dataset/270b55a8-a9ee-44ee-8db6-eb214e721eea,"{'access': {'accessRequestCost': 'Not specified', 'dataController': 'NHS Lothian/ University of Edinburgh', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'jurisdiction': 'GB-SCT', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'dataProcessor': 'Not Applicable'}, 'formatAndStandards': {'language': ['en'], 'conformsTo': ['NULL'], 'vocabularyEncodingScheme': ['NULL'], 'format': ['In Progress']}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2009-01-01', 'distributionReleaseDate': '2018-11-16'}}",2020-01-13T17:16:39Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T16:13:10Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Deeply phenotyped sepsis patients within hospital: onset, treatments & outcomes', 'keywords': ['Sepsis', 'Infection', 'NHS', 'Acute', 'immune system', 'life-threatening', 'septicaemia', 'blood-poisoning', 'MOF', 'organ failure', 'respiratory tract', 'pneumonia', 'urinary tract', 'hepatobiliary', 'central nervous system', 'cellulitis', 'osteomyelitus', 'endocarditis', 'viral', 'bacterial', 'fungal', 'blood biomarkers', 'microbiology', 'treatments', 'antibiotics', 'physiology', 'serial readings', 'outcomes', 'intensive care', 'death', 'discharge', 'length of stay', 'multi-morbidity', 'COVID-19', 'wave 1', 'wave 2'], 'publisher': {'contactPoint': 'PIONEER@UHB.NHS.UK', 'memberOf': 'HUB', 'name': 'PIONEER'}, 'doiName': 'https://web.www.healthdatagateway.org/dataset/38ff49e2-dffa-4103-87a8-386f9f424d22', 'contactPoint': 'PIONEER@UHB.NHS.UK', 'abstract': 'Hospitalised sepsis patients (2000-2020) by cause. Deeply phenotyped, longitudinal.  Granular ethnicity and multi-morbidity.  Serial acuity, physiology, blood parameters, treatments, interventions, ITU spells, outcomes, pre and post sepsis healthcare.'}",38ff49e2-dffa-4103-87a8-386f9f424d22,"{'spatial': 'West Midlands Region, UK', 'pathway': 'Data focuses on in-patient stay in hospital during the sepsis episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-110', 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'a4109f11-4ece-4173-bd12-689616c24b88', '2.0.0': '273e091c-d0b3-4529-9cd2-4bc1a1b6195a', '1.0.0': 'd56a67e4-b1cf-44ec-814a-86f07520403b', 'latest': '273e091c-d0b3-4529-9cd2-4bc1a1b6195a'}","{'description': 'Deeply phenotyped sepsis patients within hospital: onset, treatments & outcomes \n\nSepsis is life-threatening organ dysfunction due to a dysregulated host response to infection & is a global health challenge. In 2017, 48•9 million incident cases of sepsis were recorded worldwide with 11million sepsis-related deaths, representing 19•7% of all global deaths. There are >123,000 sepsis cases diagnosed in Engl& each year with an estimated 36,800 sepsis-associated deaths.   Sepsis is treatable, & timely, targeted interventions improve outcomes.  The World Health Assembly identified sepsis as a global health priority. \n\nPIONEER geography\nThe West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix. There is a higher than average percentage of minority ethnic groups. WM has a large number of elderly residents but is the youngest population in the UK.  Birmingham has the highest birth rate in England.  It also has the highest infant mortality rate. WM life expectancy is 1.8 years less than in London. There are particularly high rates of physical inactivity, obesity, smoking & diabetes.  Each day >100,000 people are treated in hospital, see their GP or are cared for by the NHS.\n\nEHR. University Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & 100 ITU beds. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”. \n\nScope: All hospitalised patients to UHB from 2000 – current day.  Updated monthly.  Longitudinal & individually linked, so that the preceding & subsequent health journey can be mapped & healthcare utilisation prior to & after sepsis understood.\nThe dataset includes ICD-10 & SNOMED-CT codes pertaining to sepsis & suspected sepsis.  Serial, structured data pertaining to process of care (timings, staff grades, specialty review, wards), presenting complaint, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations), all blood results, microbiology, all prescribed & administered treatments (fluids, antibiotics, inotropes, vasopressors, organ support), all outcomes.  Linked images available (radiographs, CT, MRI, ultrasound). Includes COVID-19 wave 1 and wave 2 data.\n\nAvailable supplementary data:\nMatched “non-sepsis” controls; ambulance, 111, 999 data, synthetic data.\n\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://www.pioneerdatahub.co.uk/wp-content/uploads/Sepsis-Infographic-V3.pdf']}",273e091c-d0b3-4529-9cd2-4bc1a1b6195a,https://web.www.healthdatagateway.org/dataset/273e091c-d0b3-4529-9cd2-4bc1a1b6195a,"{'usage': {'isReferencedBy': ['Sapey E, Gallier S, Mainey C All clinicians and students at University Hospitals Birmingham NHS Foundation Trust, et al Ethnicity and risk of death in patients hospitalised for COVID-19 infection in the UK: an observational cohort study in an urban catchment area BMJ Open Respiratory Research 2020;7:e000644. doi: 10.1136/bmjresp-2020-000644      ', 'Phagura, Nuvreen & Thandi, Karanjeet & Evison, Felicity & Gallier, Suzy & Sharif, Adnan. (2020). P1724RISK FACTORS FOR BK VIRUS INFECTION AFTER KIDNEY TRANSPLANTATION IN THE CONTEMPORARY ERA: A SINGLE-CENTRE OBSERVATIONAL STUDY. Nephrology Dialysis Transplantation. 35. 10.1093/ndt/gfaa142.P1724.  ', 'Shallcross, L.J., Freemantle, N., Nisar, S. et al. A cross-sectional study of blood cultures and antibiotic use in patients admitted from the Emergency Department: missed opportunities for antimicrobial stewardship. BMC Infect Dis 16, 166 (2016). https://doi.org/10.1186/s12879-016-1515-1 ', 'Shallcross, L.J., Rockenschaub, P., McNulty, D. et al. Diagnostic uncertainty and urinary tract infection in the emergency department: a cohort study from a UK hospital. BMC Emerg Med 20, 40 (2020). https://doi.org/10.1186/s12873-020-00333-y'], 'dataUseLimitation': 'GENERAL RESEARCH USE', 'resourceCreator': '""This work was supported by PIONEER, the Health Data Research Hub in acute care"".  If publishing using PIONEER overarching ethics, state                                                    ""This research was conducted under the ethical approvals of PIONEER, a Health data research hub in acute care (East Midlands – Derby Research ethics committee, reference 20/EM/0158)"".', 'dataUseRequirements': 'PROJECT SPECIFIC RESTRICTIONS'}, 'access': {'dataProcessor': 'NOT APPLICABLE', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'accessRequestCost': 'www.pioneerdatahub.co.uk/data/data-services-costs/', 'jurisdiction': 'GB', 'deliveryLeadTime': 'OTHER', 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.'}, 'formatAndStandards': {'format': ['SQL'], 'conformsTo': 'LOCAL', 'vocabularyEncodingScheme': ['SNOMED CT', 'ICD10'], 'language': 'en'}}","{'origin': {'collectionSituation': 'IN-PATIENTS', 'source': 'EPR', 'purpose': 'OTHER'}, 'temporal': {'timeLag': 'LESS 1 WEEK', 'distributionReleaseDate': '2020-11-19', 'endDate': '2020-11-19', 'startDate': '2018-01-01', 'accrualPeriodicity': 'QUARTERLY'}}",2020-12-03T17:34:01Z,"[{'observedNode': 'Events', 'measuredValue': '7127 patient spells at the current timeline (2018- 19/11/2020) but all data from 2000 onwards can be extracted', 'disambiguatingDescription': 'Not applicable', 'observationDate': '2020-11-19', 'measuredProperty': 'count'}]",2.0.0,,2021-02-25T14:46:20Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 6, 'structuralMetadata.tableName': 6, 'structuralMetadata.tableDescription': 6, 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"{'title': 'Unified Cohorts Research Network', 'publisher': {'memberOf': 'HUB', 'name': 'BREATHE', 'contactPoint': 'breathe.saildatabank@swansea.ac.uk'}, 'contactPoint': 'breathe.saildatabank@swansea.ac.uk', 'keywords': ['Asthma', 'Allergy', 'UNICORN', 'Cohorts', 'BREATHE'], 'abstract': 'UNICORN leverages UK cohort studies with a focus on asthma and allergy more productively, and develops a sustainable, scalable scientific infrastructure to facilitate future work in this and other biomedical domains.'}",cffcf30d-cedb-421b-a5dc-6726633cb99a,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': 'e516a359-74a8-4932-b4df-f2cf75eef89d', '3.0.0': '274238a8-ec06-4ee4-83ae-a419a925d43b', '0.0.1': '1c0a5fca-4b90-412b-a464-142d1f8759dd', '1.0.0': '9fab7ce2-6be4-42e8-b5be-dd75e8e367f4', 'latest': '274238a8-ec06-4ee4-83ae-a419a925d43b'}","{'description': 'UNICORN leverages UK cohort studies with a focus on asthma and allergy more productively, and develops a sustainable, scalable scientific infrastructure to facilitate future work in this and other biomedical domains. It includes Study Team for Early Life Asthma Research (STELAR), which includes Avon Longitudinal Study of Parents and Children (ALSPAC), Ashford and Isle of Wight cohorts (IoW), Manchester Asthma and Allergy Study (MAAS), Aberdeen Study of Eczema and Asthma To Observe the Effects of Nutrition (SEATON); Breathing Together; U-BIOPRED; and the Royal Brompton Severe Asthma cohort (paediatric) cohorts. When/where possible these data are to be linked to NHS data.\n\nAsthma and allergic diseases (food allergies, rhinitis, eczema) are the most common chronic diseases in childhood and adolescence. They usually start before school-age and are responsible for a heavy burden of ill health, including premature death. In response, we propose an innovative scientific research program which embraces a truly trans-disciplinary team science approach, and is of fundamental relevance both to biomedical research and to evidence-based health science more broadly. UNICORN builds directly on the substantive prior investments in both the science and infrastructure underpinning research in this domain. The project will assist UK to leverage its cohort studies with a focus on asthma and allergy more productively, and to develop a sustainable, scalable scientific infrastructure to facilitate future work in this and other biomedical domains.', 'isPartOf': 'N/A'}",274238a8-ec06-4ee4-83ae-a419a925d43b,https://web.www.healthdatagateway.org/dataset/274238a8-ec06-4ee4-83ae-a419a925d43b,"{'formatAndStandards': {'language': ['en']}, 'access': {'dataController': 'Imperial College London', 'accessRights': 'Available upon request', 'deliveryLeadTime': 'OTHER', 'dataProcessor': 'Imperial College London', 'jurisdiction': 'GB'}, 'usage': {'resourceCreator': 'Various (differs for each dataset)'}}",,2020-01-13T15:48:23Z,,3.0.0,,2021-04-14T08:24:39Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'NIHR IBD BioResource: SNP chip data', 'contactPoint': 'nbr@bioresource.nihr.ac.uk', 'publisher': {'memberOf': 'HUB', 'identifier': '607db9c3e1f9d3704d570d0a', 'name': 'GUT REACTION'}, 'abstract': 'In order to do recall by genotype, participants have their DNA tested using one the SNP chip arrays from eg. Illumina and Affymetrix (now Thermosfisher).  The current iteration is the UK Biobank v2.1 from Thermofisher, which measures ~820k markers.', 'keywords': ['IBD', ""Crohn's"", 'colitis', 'recall', 'SNP chip', 'Thermofisher', 'cohort discovery']}",3c749cfc-4008-4916-b64f-969d6a754c0f,"{'spatial': ['https://www.geonames.org/2635167/united-kingdom.html'], 'typicalAgeRange': '18-85', 'followup': '1 - 10 YEARS', 'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '27a97f1b-e7ac-4723-87db-0a4d9e3ed4b6'},"{'description': 'The NIHR IBD Bioresource comprises ~34k participants with Inflammatory Bowel Disease (IBD). The NIHR IBD BioResource extracts DNA from blood and saliva samples taken at recruitment, and measures a panel of SNPs on each DNA sample, using a commodity SNP genotyping array from e.g. Illumina or Affymetrix (now Thermofisher). This is used to pre-screen or match participants when inviting them to take part in experimental medicine studies. De-identified versions of this data is available to researchers investigating the feasibility of future studies. The Technical Metadata describes a SNP annotation file – i.e. what the chip is measuring. The file itself has as many rows as there are SNPs represented on the chip, and is proprietary to the manufacturer, although deeply familiar to researchers.', 'isPartOf': 'Not Applicable', 'associatedMedia': ['https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction-data-sources', 'https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction/', 'https://bioresource.nihr.ac.uk/media/1o3c4m42/axiom_ukbbv2_1-na36-r3-a4-annot-csv.zip']}",27a97f1b-e7ac-4723-87db-0a4d9e3ed4b6,https://web.www.healthdatagateway.org/dataset/27a97f1b-e7ac-4723-87db-0a4d9e3ed4b6,"{'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['OTHER'], 'format': ['text/plink', 'text/vcf'], 'conformsTo': ['LOCAL']}, 'usage': {'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': ['RESEARCH USE ONLY'], 'resourceCreator': ['NIHR BioResource. Acknowledgement text: ""We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.""'], 'isReferencedBy': ['Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/']}, 'access': {'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)', 'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)', 'jurisdiction': ['GB-GB'], 'deliveryLeadTime': '2-6 MONTHS', 'accessRights': ['https://bioresource.nihr.ac.uk/using-our-bioresource'], 'accessService': ""Some de-identified data may be released to researchers in a platform-independent filetype (e.g. CSV). However, access to any data acquired via NHS Digital is subject to strict restrictions governing where data may be accessed and from which locale - access in a Trustworthy Research Environment (TRE) at AIMES secure data centre (https://aimes.uk/).  It is also intended that SNP data be available from the European Genome-Phenome Archive (EBI's EGA) via managed access - https://ega-archive.org/"", 'accessRequestCost': ['https://bioresource.nihr.ac.uk/using-our-bioresource/industry-researchers/industry-bioresource-usage-costs/']}}","{'origin': {'source': ['MACHINE GENERATED'], 'collectionSituation': ['OTHER'], 'purpose': ['STUDY']}, 'temporal': {'accrualPeriodicity': 'QUARTERLY', 'timeLag': '2-6 MONTHS', 'startDate': '2016-01-13', 'distributionReleaseDate': '2021-03-31'}}",2021-09-09T17:13:29Z,"[{'observedNode': 'EVENTS', 'disambiguatingDescription': 'SNP genotyping array chips processed', 'measuredProperty': 'Count', 'measuredValue': '11787', 'observationDate': '01/09/2021'}, {'observedNode': 'EVENTS', 'measuredValue': '780000', 'disambiguatingDescription': 'Approximate number of variants on a SNP chip', 'observationDate': '01/09/2021', 'measuredProperty': 'COUNT'}]",4.0.0,"{'qualifiedRelation': ['ALL', 'COVID-19 SARI-Watch (formerly CHESS)', 'Civil Registration - Deaths', 'Covid-19 Second Generation Surveillance System', 'Emergency Care Data Set (ECDS)', 'Hospital Episode Statistics Accident and Emergency', 'Hospital Episode Statistics Admitted Patient Care', 'Hospital Episode Statistics Critical Care', 'Hospital Episode Statistics Outpatients', 'Intensive Care National Audit & Research Centre (ICNARC) Case Mix Programme (https://www.icnarc.org/Our-Audit/Audits/Cmp/About)'], 'derivation': ['Not Available']}",2021-09-09T17:13:29Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 33, 'structuralMetadata.columnName': 33, 'structuralMetadata.columnDescription': 33, 'structuralMetadata.dataType': 33, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '6ff79f66-a3e2-4e18-a049-85484439f016', 'description': 'Axiom UKBB v2.r1', 'name': 'Axiom_UKBB_V2', 'dataElementsCount': 33, 'dataElements': '70ca3328-de27-4dab-b310-2be2f2b72de0, 7b393d29-5212-4e98-a243-716f6878d8a3, b4dba60e-2213-4eb0-a01a-d11189da42d6, 8e39726c-7d39-49f8-a0e8-612256efaed9, d5ad55ff-1584-419f-9169-041f5f41fe7d, 6f10fef0-d51f-458f-a0e5-eb5ec6fddfd6, e548a244-0d60-4f62-a271-53e8f6379972, 4b1725cc-5dee-46ca-b53f-e9a8e88cfc11, 33e8b8ba-6bc8-4c67-b18f-fb29b540dd04, 64d8acec-302f-4eaf-86b9-303d3054016a, acba3e17-b334-493a-9a34-df1fd9b88f6a, 59c35c84-42db-4682-abca-34cb23a33702, a292da21-cdf9-456d-85c0-c96931d6cb1f, 41231190-eec0-4cc1-a45c-5699fdc7dc37, a405121f-7375-4dd4-809c-81d8878d0b42, fad0bdba-20d7-49a0-93fc-cce5bc3431d4, b20dec35-afb8-4b64-aa1d-fc92dc953c41, 1c9d625f-93ca-497e-be84-3af30471cf10, 494f6ab1-3887-4a2f-8de9-4c7f1ee26254, a539297d-5a20-4b24-98fc-e9c5548bd06e, 0c1b17ec-3bfe-413d-8ced-d552244cb512, 1a84b77f-6bb2-4ea7-9ec5-aa3584fd4e45, 64c20621-f514-4503-9fea-aa2922562de1, 108df7ef-37a0-46e2-a6ef-09cbbdcc93c5, 3c1a496a-8e03-4b6c-8ccc-ff5e72641bb6, 1a294210-4332-41e8-b254-9bcb8a7a0f25, 3542a9c3-e2a2-49ec-adfe-32ab055b835e, 411b17ef-fed6-4bab-a8d9-ad7247569cba, dcf782f5-a4c0-40ec-ad91-feb4e71286fc, 6e2344f0-f590-4fea-8db4-ef95fc37bcc4, deb8e2b5-0534-4e23-912f-b3114008a102, 3a5cb978-128f-452f-8437-5dcf36888e44, b92485d0-a928-4f0b-96eb-38e367256416'}]}"
"{'title': 'SIMD', 'abstract': 'Health Informatic Centre Derived dataset covering Health Board and SIMD', 'keywords': ['SIMD', 'Postcode', 'Quintile', 'Decile', 'Healthboard', 'HIC', 'SCOTLAND'], 'contactPoint': 'hicsupport@dundee.ac.uk', 'publisher': {'identifier': '607db9c4e1f9d3704d570d1f', 'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE', 'memberOf': 'ALLIANCE'}}",5e1ee577-f1d1-48ae-861e-6a5f2f510773,"{'pathway': 'Demographic records for Scotland based on postal code', 'typicalAgeRange': '0-150', 'spatial': ['United Kingdom,Scotland'], 'followup': 'UNKNOWN', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '2879b7f9-9bf1-4c6d-88cb-fade32b0ec3f'},"{'description': 'This Dataset is compiled be the Health Informatic Centre to combine a persons data with postal code, healthboard and SIMD Decile and Quintiles', 'isPartOf': 'University of Dundee Health Informatics Centre'}",2879b7f9-9bf1-4c6d-88cb-fade32b0ec3f,https://web.www.healthdatagateway.org/dataset/2879b7f9-9bf1-4c6d-88cb-fade32b0ec3f,"{'access': {'dataProcessor': 'University of Dundee, Health Informatics Centre', 'accessRequestCost': ['Quotation available on request'], 'jurisdiction': ['GB-SCT'], 'accessRights': ['https://www.dundee.ac.uk/hic/governanceservice/'], 'accessService': 'HIC has implemented a remote-access Trusted Research Environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details are available via the following link:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/', 'deliveryLeadTime': '2-4 WEEKS', 'dataController': 'Local NHS boards'}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'format': ['Database'], 'conformsTo': ['LOCAL']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['Health Informatics Centre'], 'dataUseRequirements': ['DISCLOSURE CONTROL']}}","{'origin': {'source': ['OTHER INFORMATION SYSTEM'], 'purpose': ['ADMINISTRATIVE'], 'collectionSituation': ['OTHER']}, 'temporal': {'accrualPeriodicity': 'IRREGULAR', 'distributionReleaseDate': '2022-05-18', 'endDate': '2016-12-31', 'timeLag': 'NOT APPLICABLE', 'startDate': '2004-01-01'}}",2022-05-26T10:05:56Z,"[{'observedNode': 'EVENTS', 'measuredValue': '220066', 'disambiguatingDescription': '220,066 events in this dataset', 'observationDate': '18/05/2022', 'measuredProperty': 'COUNT'}]",1.0.0,,2022-05-26T10:05:56Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 7, 'structuralMetadata.columnName': 7, 'structuralMetadata.columnDescription': 7, 'structuralMetadata.dataType': 7, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '71945da3-1534-4f9e-8789-88de80b55e89', 'description': 'No table description available', 'name': 'z_Postcode_HB_SIMD', 'dataElementsCount': 7, 'dataElements': '61b3afd1-222b-4e6a-b69a-e585c074dda7, 9204eb76-e2cc-457b-a4fc-121f33b4e8a5, 80c023ad-4858-40ba-bbce-a8f45336ef1e, 695a8a68-6228-4749-bb6d-4dbaa0d6b59f, f4e4c31c-df39-4ee4-9047-c91edac50651, 3584a5b2-9d34-4e9b-988f-e8cae8c88bae, cef06d91-03d3-40b5-97bc-d8c39486a693'}]}"
"{'title': 'Cholecystectomy and post-operative complications from over 9000 surgical cases', 'keywords': ['Cholecystectomy', 'laparotomy', 'keyhole surgery', 'post operative complications', 'peri-operative complications', 'Sepsis', 'infection', 'anaesthetic', 'Oxygen', 'analgesia', 'pain relief', 'medications', 'Surgery', 'Artificial Intelligence', 'Machine learning', 'hospital admissions', 'AI ', 'NHS', 'life-threatening', 'intensive care', 'death', 'length of stay', 'microbiology', 'immune system', 'septicaemia', 'blood-poisoning', 'MOF', 'organ failure', 'viral', 'bacterial', 'microbiology', 'antibiotics', 'Discharge'], 'publisher': {'memberOf': 'HUB', 'name': 'PIONEER', 'identifier': '607db9c5e1f9d3704d570d5f'}, 'abstract': 'A deeply phenotyped dataset of hospitalised patients undergoing an emergency or elective cholecystectomy.  Longitudinal granular demographics, co-morbidities, laboratory results, physiology, medications, complications including sepsis and outcomes.', 'contactPoint': 'PIONEER@UHB.NHS.UK'}",4abba8ec-9a67-4334-91fc-e624173f3055,"{'pathway': 'Data is representative of the multi-ethnicity population within the West Midlands (42% non white). Data includes all patients admitted during this timeframe, with National data Opt Outs applied, and therefore is representative of admissions to secondary care. Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.', 'typicalAgeRange': '18-93', 'followup': 'OTHER', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2634343/west-midlands.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '2887c7b4-66d4-404c-a352-83fcff441568'},"{'description': 'Cholecystectomy is a common surgical procedure to remove the gall bladder, with over 1.2 million procedures performed in the USA each year. The most common indication is recurrent gall stones. The main operative incidents are haemorrhage, iatrogenic perforation of the gallbladder, and common bile duct (CBD) injuries. The main post-operative complications are sepsis, sub-hepatic abscess, haemorrhage, bile leakage and retained bile duct stones, with sepsis the most common post-operative complications.\n\nSepsis post-surgery is costly to the individual, associated with a reduced quality of life, increased length of stay, pain, loss of function and mortality.  Although risk factors for developing sepsis are recognised, these cannot be applied at an individual level, making it difficult to predict who might develop sepsis, in order to implement mitigation strategies.  \n\nThis dataset includes 9,400 individual surgical cases for cholecystectomy, including both elective and emergency surgery.  The data includes detailed patient demography, measures of socio-economic deprivation, co-morbidities, the surgical indication, all physiological and pathological measurements, the surgery performed, anaesthetic used, medications given, complications and outcomes.   \n\nPIONEER geography: The West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix.  \n\nElectronic Health Record: UHB is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”. \n\nScope: Patients that had an emergency or elective Cholecystectomy procedure during their hospital stay. Longitudinal & individually linked, so that the preceding & subsequent health journey can be mapped & healthcare utilisation prior to & after admission understood. The dataset includes highly granular patient demographics, co-morbidities taken from ICD-10 & SNOMED-CT codes. Serial, structured data pertaining to process of care (timings, admissions, wards), presenting complaint, physiology readings (e.g. heart rate, blood pressure, respiratory rate, NEWS2 score and oxygen saturations), Lab analysis results (Alanine Transferase, albumin, EGFR, Creatine Kinase, White Blood Cells and others), microbiology results, surgery, medications, complications and all outcomes.   \n\nAvailable supplementary data: Matched controls; ambulance, OMOP data, synthetic data. \n\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.', 'isPartOf': 'NOT APPLICABLE'}",2887c7b4-66d4-404c-a352-83fcff441568,https://web.www.healthdatagateway.org/dataset/2887c7b4-66d4-404c-a352-83fcff441568,"{'access': {'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'jurisdiction': ['GB-ENG'], 'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/'], 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'dataProcessor': 'NOT APPLICABLE', 'deliveryLeadTime': '1-2 MONTHS'}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'resourceCreator': ['This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)']}, 'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['SNOMED CT', 'ICD10', 'OPCS4'], 'format': ['SQL'], 'conformsTo': ['LOCAL']}}","{'origin': {'source': ['EPR'], 'purpose': ['CARE'], 'collectionSituation': ['IN-PATIENTS', 'ACCIDENT AND EMERGENCY']}, 'temporal': {'startDate': '2004-02-25', 'distributionReleaseDate': '2021-12-06', 'endDate': '2021-07-30', 'accrualPeriodicity': 'QUARTERLY', 'timeLag': 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"{'title': 'DENDRITE Dataset', 'contactPoint': 'surjeet.janjuha@nhs.net', 'abstract': 'Clinical system used on St. Barts site for multiple dataset collection. The system is designed to be highly configurable by end users themselves allowing the ability for the system to be used in a number of care settings including Catheter labs & theatres. The system is used as a clinical recording systems as well as an auditing system.', 'publisher': {'memberOf': 'ALLIANCE', 'contactPoint': 'surjeet.janjuha@nhs.net', 'name': 'BARTS HEALTH'}}",31920b14-d114-410f-8255-522e6451c44e,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '29de7178-dcf3-4859-bd96-ca6d944db5f8'},"{'description': None, 'isPartOf': 'N/A'}",29de7178-dcf3-4859-bd96-ca6d944db5f8,https://web.www.healthdatagateway.org/dataset/29de7178-dcf3-4859-bd96-ca6d944db5f8,"{'access': {'deliveryLeadTime': 'OTHER', 'accessRights': ['Available locally within Trust corporate Data Warehouse System and authorised access by Trust staff only.']}}",,2021-04-06T16:31:30Z,,0.0.1,,2021-04-06T16:28:28Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Treatment of Bangladeshi children with severe pneumonia', 'abstract': 'This study aims to explore whether bubble CPAP is able to improve outcomes of children with severe pneumonia and hypoxaemia who receive care in non-tertiary, district hospitals.', 'contactPoint': 'RESPIRE@ed.ac.uk', 'keywords': ['RESPIRE', ' Bangladesh', ' bubble continuous positive airway pressure', ' bcpap', ' treatment', ' children', ' severe', ' pneumonia'], 'publisher': {'name': 'BREATHE', 'identifier': '607db9c2e1f9d3704d570ce6', 'memberOf': 'HUB'}}",2f4c56b3-ca6a-4b30-a7f0-d83e68192c5b,"{'typicalAgeRange': '0-2', 'spatial': 'https://www.geonames.org/1210997/bangladesh.html'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'db276c68-93d2-4591-8dba-b1ce4412a1fa', '2.0.0': '2a17a802-a2da-4bfc-8571-b2015350eed4', '1.0.0': 'fa47eddd-0a51-4e7e-93de-3f3223a1297d', 'latest': '2a17a802-a2da-4bfc-8571-b2015350eed4'}","{'description': 'This study aims to explore whether bubble CPAP is able to improve outcomes of children with severe pneumonia and hypoxaemia who receive care in non-tertiary, district hospitals. We also aim to understand the feasibility and acceptability of introducing and using locally made innovative low-cost bubble CPAP in these real-life settings in two selected district hospitals, prior to commencing our multicentre trial.\n\nHypoxaemia, a low level of oxygen in the blood, is one of the main risk factors for death due to pneumonia among children.\n\nDistrict hospitals in Bangladesh are considered as secondary level referral hospitals and usually provide care of paediatric patients in paediatric wards, including children with pneumonia and severe pneumonia.\n\nDistrict hospitals do not have additional respiratory support available to children who are failing to improve following treatment with low-flow oxygen supplementation, the World Health Organization standard. As a result, these children may die due to lack of availability of additional respiratory support.\n\nBubble CPAP (a low-cost, locally made device to deliver oxygen) improved survival rates when provided to treat severe pneumonia in tertiary hospitals. This study will explore whether the same technology made available in district hospitals could provide the same patient benefit.\n\nThis study aims to explore whether bubble CPAP is able to improve outcomes of children with severe pneumonia and hypoxaemia who receive care in non-tertiary, district hospitals. We also aim to understand the feasibility and acceptability of introducing and using locally made innovative low-cost bubble CPAP in these real-life settings in two selected district hospitals, prior to commencing our multicentre trial.\n\nFor further information please see:  https://www.ed.ac.uk/usher/respire/acute-respiratory-disorders/bubble-cpap', 'isPartOf': 'RESPIRE', 'associatedMedia': ['']}",2a17a802-a2da-4bfc-8571-b2015350eed4,https://web.www.healthdatagateway.org/dataset/2a17a802-a2da-4bfc-8571-b2015350eed4,"{'access': {'dataController': 'BREATHE', 'jurisdiction': ['GB-ENG', 'GB-SCT', 'GB-WLS'], 'dataProcessor': 'NOT APPLICABLE', 'accessService': 'Access service varies on a project-by-project basis. Contact the RESPIRE team for further in formation', 'deliveryLeadTime': 'VARIABLE', 'accessRights': ['https://www.ed.ac.uk/usher/respire/contact-us']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'format': ['text/csv', ' text/xls', ' text/xml', ' spss', ' stata', ' sas'], 'language': ['en'], 'conformsTo': ['LOCAL']}, 'usage': {'resourceCreator': ['RESPIRE'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}}","{'temporal': {'distributionReleaseDate': '2020-12-31', 'timeLag': 'NOT APPLICABLE', 'accrualPeriodicity': 'STATIC', 'startDate': '2018-09-01', 'endDate': '2020-12-31'}, 'origin': {'purpose': ['STUDY'], 'collectionSituation': ['COMMUNITY']}}",2021-04-09T15:30:19Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '1', 'observationDate': '31/12/2020', 'measuredProperty': 'Count'}]",2.0.0,,2021-10-19T15:50:50Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Audit of Care at the End of Life - Quality Survey', 'contactPoint': 'DataSharing@hqip.org.uk', 'keywords': ['Audit', 'NACEL', 'Care', 'End of life', 'Quality Survey'], 'publisher': {'name': 'HQIP', 'identifier': '607db9c4e1f9d3704d570d23', 'memberOf': 'ALLIANCE'}, 'abstract': ""A dataset from an online survey of the experiences of those close to the dying person, of the end of life care provided during that person's last admission  in acute and community hospitals. Data on deaths in April and May 2019 in England and Wales.""}",51a8dfba-5c94-48bd-9c68-3707f0ebc2a2,"{'typicalAgeRange': '18-150', 'followup': 'UNKNOWN', 'pathway': 'End of life care', 'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/6269131/england.html'], 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'3.0.0': 'aeb2f1ea-c914-4b30-94c8-9fd3eb51b288', '6.0.0': '2a4ef602-0485-47d2-a6f7-9e2ccf849a5d', '2.0.0': '7894ca17-10d8-4751-a432-1a9b932cb3d1', '4.0.0': 'f499041f-197e-4cd5-9295-952d60110e48', '5.0.0': 'b7631b1d-aa5a-4702-9bce-950e1ebe5141', '1.0.0': '792a6f22-1f62-4591-8c08-b1d0cab87cf3', '0.0.1': '9b55e3c5-6165-48cf-bc82-2c42c986744b', 'latest': '2a4ef602-0485-47d2-a6f7-9e2ccf849a5d'}","{'description': ""A survey dataset from an online survey of the experiences of those close to the dying person, of the end of life care provided to both the dying person and themselves during that person's last admission leading to death in acute and community hospitals. Data relates to deaths in April and May 2019 in England and Wales."", 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)', 'associatedMedia': ['https://www.hqip.org.uk/a-z-of-nca/national-audit-of-care-at-the-end-of-life/']}",2a4ef602-0485-47d2-a6f7-9e2ccf849a5d,https://web.www.healthdatagateway.org/dataset/2a4ef602-0485-47d2-a6f7-9e2ccf849a5d,"{'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['NO RESTRICTION'], 'resourceCreator': ['Data has been provided by the Healthcare Quality Improvement Partnership from the National Audit of Care at the End of Life']}, 'access': {'accessRights': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England', 'dataProcessor': 'NHS Benchmarking Network', 'deliveryLeadTime': 'VARIABLE', 'accessRequestCost': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'jurisdiction': ['GB-ENG', 'GB-WLS']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['OTHER'], 'conformsTo': ['OTHER'], 'language': ['en'], 'format': ['Excel, CSV']}}","{'temporal': {'accrualPeriodicity': 'ANNUAL', 'endDate': '2019-05-31', 'startDate': '2019-04-01', 'timeLag': 'VARIABLE'}, 'origin': {'collectionSituation': ['IN-PATIENTS'], 'purpose': ['AUDIT'], 'source': ['ELECTRONIC SURVEY']}}",2020-01-13T14:54:27Z,"[{'observedNode': 'PERSONS', 'measuredValue': 1581, 'disambiguatingDescription': 'Number of quality surveys submitted to the audit', 'observationDate': '12/05/2021', 'measuredProperty': 'Count'}]",6.0.0,"{'qualifiedRelation': ['Data Linked with that from other custodians may be available, but the release of linked data will be subject to the separate permission of all relevant data controllers.'], 'derivation': ['Not available']}",2022-01-27T10:24:50Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 34, 'structuralMetadata.columnName': 34, 'structuralMetadata.columnDescription': 34, 'structuralMetadata.dataType': 34, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '534d0803-3b6c-480d-8583-74639c01c6f8', 'description': 'Data fields for NACEL 2019 - Quality Survey', 'name': 'NACEL 2019- Quality Survey', 'dataElementsCount': 34, 'dataElements': '5a774677-5e97-4c4e-90eb-ab6f994390ab, 547b9336-6a4c-4e41-aad9-6491e9c540af, 580cbb5e-15d1-4d9d-bf8b-d50d3f5bdac5, 09108939-e0ba-4c4f-8b11-37e3d355848e, 2901ea80-619f-43b9-b7db-854faa0984c4, 4681e8a0-9e6a-4fd9-9d07-3dcd84c93071, 319cb33c-e0ba-4bb9-8518-c0a82fe4a584, 4b509492-db90-4f1c-a555-03605febc6d8, ee403893-03cd-43f5-a887-f52d95a75988, c8514266-4ebe-4b4d-8fd8-66727b83bf63, 1b3d37ab-93b5-4da9-b382-218f62c06a79, b38db455-d0a4-4ff7-ba04-ed3b406924c8, 46f059ab-3272-4cda-a39c-46abda661c49, fb811106-100f-45e4-bede-20bbc7ad647e, b0197d5d-9bb5-4973-a24b-181779a3fd88, 8fe39330-d75d-4cf1-9414-dda1423b5808, e4f461e0-b9a2-4f8d-b20c-902728d5827f, c3b37000-02ce-45fc-a73c-10c6fc7036ef, e38ba5d9-d596-41ad-a444-9155697c5918, 70a8352b-cb1b-490d-b9f2-1ac065965467, d0e319d0-cb26-4a10-96c1-92d6c9863059, 5cc03893-bea3-43e3-b45e-fdb5a571b829, 10383730-bfd3-46ab-a585-69d6785abc15, 2b441fe6-8fa9-4282-a6bc-3ee5ccf8a9f9, 04bdba41-5676-4f88-9c4e-21e254ac338e, 763e02ba-358b-45e5-8e45-778f4e57cfe1, 48ae1e29-da77-42bb-98be-4dd397e6c9a6, 75d16ce6-b0a8-4e4e-8150-387851318e4f, 07765a68-58e8-4d89-b1bf-8fcd2d8feb0e, 44ecbc73-9d04-4e79-945b-2d0d086673c4, 390a36f3-b1ba-4aec-a6a3-454a94def95f, 89b26e0a-bad1-4bb1-8a82-d58d999188ad, 4351b3cf-0c48-4ec9-8f3f-b250249bef7b, f6acfb62-48c2-4d28-94e8-d0f5c9a55788'}]}"
"{'title': 'National Asthma and COPD Audit (NACAP): COPD secondary care clinical dataset', 'contactPoint': 'DataSharing@hqip.org.uk', 'keywords': ['Audit', 'NACAP', 'Asthma', 'COPD', 'Secondary care', 'Clinical Dataset'], 'publisher': {'name': 'HQIP', 'identifier': '607db9c4e1f9d3704d570d23', 'memberOf': 'ALLIANCE'}, 'abstract': 'A continuous, record level dataset of patients admitted to hospital in England and Wales with COPD since February 2017, with Scotland from late 2018. Includes patient demographics, acute observations, admission and review, comorbidities and discharge.'}",85b4dc84-88f4-4740-80fa-fa1eb04a0ae6,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2634895/wales.html', 'https://www.geonames.org/6269131/england.html'], 'pathway': 'Include patients:\n- who are 35 years and over on the date of admission,\n- who have been admitted to hospital adult services,\n- who have a primary diagnosis of COPD exacerbation,\n- where an initial, or unclear, diagnosis is revised to an acute exacerbation of chronic obstructive pulmonary disease (AECOPD). Also following ICD-10 codes in the primary position of the first episode of care:                   • J44.0 - Chronic obstructive pulmonary disease with acute lower respiratory infection.                                      • J44.1 - Chronic obstructive pulmonary disease with acute exacerbation, unspecified\n• J44.8 - Other specified chronic obstructive pulmonary disease\n• J44.9 - Chronic obstructive pulmonary disease, unspecified.', 'typicalAgeRange': '35-100', 'followup': '0 - 6 MONTHS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'5.0.0': '17256ce7-dc04-497d-ac27-d0d60de22b00', '6.0.0': '2a826781-0f58-44d6-89f3-7d899eb3cd45', 'latest': '2a826781-0f58-44d6-89f3-7d899eb3cd45'}","{'description': 'A continuously ascertained, record level dataset of patients admitted to hospital in England and Wales with COPD since February 2017, with Scotland joining in late 2018. 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It collects information on the children’s siblings and parents. MCS’s field of inquiry covers such\ndiverse topics as parenting; childcare; school choice; child behaviour and cognitive development; child and parental health; parent’s employment and education; income and poverty; housing, neighbourhood and residential mobility; and social capital and ethnicity.\nThe study is core funded by the Economic and Social Research Council (ESRC) and a consortium of Government departments.', 'isPartOf': 'NOT APPLICABLE'}",2b09ea87-5b22-4049-b7dd-de0889699115,https://web.www.healthdatagateway.org/dataset/2b09ea87-5b22-4049-b7dd-de0889699115,"{'access': {'deliveryLeadTime': '2-6 MONTHS', 'accessRights': ['https://saildatabank.com/application-process/'], 'dataController': 'Centre for Longitudinal Studies (CLS)', 'dataProcessor': 'Centre for Longitudinal Studies (CLS)', 'jurisdiction': 'GB', 'accessRequestCost': 'Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'}, 'formatAndStandards': {'conformsTo': 'LOCAL', 'format': ['SQL database table'], 'language': 'en', 'vocabularyEncodingScheme': 'LOCAL'}, 'usage': {'isReferencedBy': ['http://cls.nemisys3.uk.com/datadictionary/page.asp?section=000100010003000100010001§ionTitle=Household+Composition']}}","{'temporal': {'startDate': '2012-01-04', 'endDate': '2013-01-20', 'distributionReleaseDate': '2012-02-15'}}",2020-10-12T12:11:33Z,,0.0.1,"{'qualifiedRelation': ['Yes. 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"{'title': 'Leeds-IQVIA Collaboration', 'publisher': {'contactPoint': 'datacan@uclpartners.com', 'name': 'DATA-CAN', 'memberOf': 'HUB'}, 'keywords': ['Cancer', 'Electronic Health Record', 'Radiology', 'Pathology', 'Diagnosis'], 'doiName': 'In progress', 'contactPoint': 'datacan@uclpartners.com', 'abstract': 'This uses the data within PPM+, the EHR for the Leeds Cancer Centre and Leeds Teaching Hospitals. It includes all patients diagnosed with cancer since 1990, all\nchemotherapy since 1993, all radiotherapy since 1994. It integrates all sources of EHR data.'}",00b897c7-d50d-486a-af1b-bd94821b58f7,"{'pathway': 'Cancer diagnosis and treatment pathway', 'physicalSampleAvailability': ['AVAILABILITY TO BE CONFIRMED'], 'followup': '> 10 YEARS', 'spatial': 'https://www.geonames.org/2644688/leeds.html', 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '2b40a784-79ea-4403-a4bd-0950a7a36a6c'},"{'description': 'This uses the data within PPM+, the EHR for the Leeds Cancer Centre and Leeds Teaching Hospitals. It includes all patients diagnosed with cancer since 1990, all\nchemotherapy since 1993, all radiotherapy since 1994. It integrates all sources of electronic data including in-patient admissions, out-patient events, all radiology\nreports, all pathology reports, all blood tests, all microbiology, all letters/annotations generated digitally. It collects detailed diagnosis information on patients\nreferred with a suspicion of/diagnosis of cancer and generates the outputs which support national cancer registration, cancer outcomes services dataset, SACT\n(chemo), RTDS (radiotherapy), cancer waiting times. It contains data on >300,000 cancer patients which reflect Leeds activity as a local hospital for the population\nof 850,000, the regional cancer centre for 2.7M and the specialist referral centre for rare cancers (paediatric, soft-tissue sarcoma) for the 5.4M from Yorkshire &\nHumber. This dataset has been used to examine diagnosis to death care of cohorts of cancer patients with lung, breast, colorectal, ovary, bladder cancer including\nall recurrence events and hence can describe time to progression, progression-free and overall survival from first diagnosis, 1st recurrence, 2nd recurrence.', 'associatedMedia': ['http://www.data-can.org.uk'], 'isPartOf': 'NOT APPLICABLE'}",2b40a784-79ea-4403-a4bd-0950a7a36a6c,https://web.www.healthdatagateway.org/dataset/2b40a784-79ea-4403-a4bd-0950a7a36a6c,"{'access': {'accessRights': ['https://www.leedsth.nhs.uk/about-us/building-the-leeds-way/contact-us/'], 'dataProcessor': 'Leeds Teaching Hospitals Trust (LTHT)', 'jurisdiction': 'GB-ENG', 'deliveryLeadTime': '1-2 MONTHS', 'accessRequestCost': 'Calculated on individual basis', 'accessService': 'Data Access Request Committee', 'dataController': 'Leeds Teaching Hospitals Trust (LTHT)'}, 'usage': {'dataUseRequirements': ['COLLABORATION REQUIRED', 'ETHICS APPROVAL REQUIRED'], 'resourceCreator': 'Leeds Teaching Hospitals Trust (LTHT) and IQVIA', 'dataUseLimitation': 'GENERAL RESEARCH USE'}, 'formatAndStandards': {'language': 'en', 'conformsTo': ['HL7 FHIR', 'NHS DATA DICTIONARY'], 'vocabularyEncodingScheme': ['OPCS4', 'DM+D', 'ODS', 'ICD10'], 'format': ['text/csv', 'text/xml']}}","{'origin': {'purpose': 'STUDY', 'source': 'EPR', 'collectionSituation': ['CLINIC', 'ACCIDENT AND EMERGENCY', 'OUTPATIENTS', 'IN-PATIENTS', 'PHARMACY']}, 'temporal': {'timeLag': 'NO TIMELAG', 'distributionReleaseDate': '2021-01-31', 'startDate': '1990-01-01', 'accrualPeriodicity': 'CONTINUOUS'}}",2021-02-25T13:57:06Z,,0.0.1,"{'qualifiedRelation': ['HES'], 'derivation': ['Linked to Hospital Activity Data ']}",2021-02-25T13:54:22Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 5, 'structuralMetadata.tableName': 5, 'structuralMetadata.tableDescription': 5, 'structuralMetadata.dataElementsCount': 5, 'structuralMetadata.columnName': 5, 'structuralMetadata.columnDescription': 5, 'structuralMetadata.dataType': 5, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'f9d96ed4-48ef-48f2-ac19-107f02deeb37', 'description': 'SUS Episodes (APC, OP, A&E)', 'name': 'PPM+5', 'dataElementsCount': 1, 'dataElements': '896ed522-f55b-471f-9699-3b6bb7bb4a9d'}, {'id': '6f2ad6ac-a081-4055-817f-4bc8db3160d7', 'description': 'Systemic Anti-Cancer Therapy (SACT) Data Set', 'name': 'PPM+3', 'dataElementsCount': 1, 'dataElements': '597f415e-dba9-4d8d-9be7-ba7f3ce71ddd'}, {'id': '6fe5c28d-1224-4886-9a8b-52214bfe5ca2', 'description': 'Radiotherapy Data set (RTDS)', 'name': 'PPM+2', 'dataElementsCount': 1, 'dataElements': '35a014db-76bd-42b6-a9c7-fc502e2f41ea'}, {'id': '76748aa2-c9d7-4cd9-86b2-85ac5865a363', 'description': 'National Cancer Registrations Data Set', 'name': 'PPM+1', 'dataElementsCount': 1, 'dataElements': 'd7161177-f060-4a7f-8128-590ce7680fea'}, {'id': 'f7bf8876-d0f5-47a4-83a2-1811790cd8b5', 'description': 'Emergency Care Data Set', 'name': 'PPM+4', 'dataElementsCount': 1, 'dataElements': '6da1bbf9-2fc0-4066-abce-4aa771dc5644'}]}"
"{'title': 'Maternity Inpatient and Day Case - Scottish Morbidity Record (SMR02)', 'keywords': ['NHS Scotland', 'Obstetrics', 'Maternity', 'CO-CONNECT', 'National Core Study', 'COVID-19', 'NCS'], 'contactPoint': 'phs.edris@phs.scot', 'abstract': 'The Maternity Inpatient and Day Case dataset (SMR02) collects episode level data every time a mother goes in for an obstetric event (this can be an antenatal, delivery or postnatal episode).', 'publisher': {'identifier': '5f8992a97150a1b050be0712', 'name': 'PUBLIC HEALTH SCOTLAND', 'memberOf': 'ALLIANCE'}}",d47c809f-3da8-4f8a-b1ee-258d21aad530,"{'typicalAgeRange': '0-150', 'spatial': ['https://www.geonames.org/2638360/scotland.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'All of secondary care in relation to inpatient and day cases.', 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 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"{'title': 'UCL Infection DNA Bank', 'keywords': ['Bank', 'UCL', 'Influenza virus (organism)', 'UKCRC Tissue Directory', 'DNA', 'Infection'], 'publisher': {'name': 'TISSUE DIRECTORY', 'contactPoint': 'v.enne@ucl.ac.uk', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'v.enne@ucl.ac.uk', 'abstract': 'Collection of samples and data across the following diseases: Influenza virus (organism)', 'doiName': 'Not Available'}",3e5fb54a-84ec-4888-9a72-4093c6e90dbc,"{'physicalSampleAvailability': ['IN PROGRESS'], 'typicalAgeRange': 'Not Known', 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'd194603e-b4f3-42fa-8f56-df04b3f1b6cc', '3.0.0': '2bd45ffb-b22f-4f02-968b-f5ab8f9d6342', '1.0.0': 'abdad65e-bee5-41c7-b874-92bd642e9b9b', '2.0.0': 'c10d6c3a-e405-4ee9-828f-02443c210879', 'latest': '2bd45ffb-b22f-4f02-968b-f5ab8f9d6342'}","{'description': 'The UCL Infection DNA Bank aims to facilitate research into infectious diseases through the enhanced availability of samples to researchers. This availability currently supports research in the UCL Division of Infection and Immunity but it will also support  researchers nationally and internationally, increasing the potential for collaboration.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",2bd45ffb-b22f-4f02-968b-f5ab8f9d6342,https://web.www.healthdatagateway.org/dataset/2bd45ffb-b22f-4f02-968b-f5ab8f9d6342,"{'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}, 'access': {'accessRights': 'Please contact the publisher using Contact Point details provided', 'jurisdiction': 'GB-ENG', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'accessRequestCost': 'Not specified', 'dataProcessor': 'Not Applicable', 'dataController': 'UCL'}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'distributionReleaseDate': '2018-12-21', 'startDate': '2017-01-01'}}",2020-01-13T17:14:17Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:16:21Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'MDSBio', 'abstract': 'Collection of samples and data across the following diseases: Hematologic neoplasm (disorder).', 'contactPoint': 'mds@imm.ox.ac.uk', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY', 'contactPoint': 'mds@imm.ox.ac.uk'}, 'keywords': ['MDSBio', 'Hematologic neoplasm (disorder)', 'UKCRC Tissue Directory'], 'doiName': 'Not Available'}",13c71637-144e-4742-8aea-aefb778a360e,"{'physicalSampleAvailability': ['TISSUE'], 'spatial': 'England', 'typicalAgeRange': '15-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'c35c10de-ea6b-46a5-8017-d05f81b2474f', '3.0.0': '2c3e75c3-141a-4d29-b7f0-0dbe14fb18fd', '1.0.0': '7efd83b8-68db-4779-8553-811ec2c1ce5a', '2.0.0': '9f45db59-b3c9-4c33-85bf-25c1b5242903', 'latest': '2c3e75c3-141a-4d29-b7f0-0dbe14fb18fd'}","{'description': 'Molecular and functional characterisation of bone marrow function in normal subjects, myelodysplastic syndromes (MDS), acute myeloid leukaemia (AML) and secondary disorders of haematopoiesis.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",2c3e75c3-141a-4d29-b7f0-0dbe14fb18fd,https://web.www.healthdatagateway.org/dataset/2c3e75c3-141a-4d29-b7f0-0dbe14fb18fd,"{'access': {'accessRights': 'Please contact the publisher using Contact Point details provided.', 'accessRequestCost': 'Not specified', 'jurisdiction': 'GB-ENG', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED.', 'dataProcessor': 'Not Applicable', 'dataController': 'University of Oxford'}, 'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}}","{'temporal': {'startDate': '2001-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:16:30Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T16:06:45Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
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It aims to chart the conditions of social, economic and health advantages and disadvantages facing children born at the start of the 21st C.'}",a380bd6b-009f-4b78-b638-ba9ee62be2eb,"{'spatial': ['https://www.geonames.org/2634895/wales.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-18'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '2ca2a23d-64c3-4691-9289-197436dddfa3'},"{'description': 'The Millennium Cohort Study (MCS) is a multi-disciplinary research project following the lives\nof around 19,000 children born in the UK in 2000-01. It is the most recent of Britain’s world renowned national longitudinal birth cohort studies. The study has been tracking the Millennium children through their early childhood years and plans to follow them into adulthood. It collects information on the children’s siblings and parents. MCS’s field of inquiry covers such diverse topics as parenting; childcare; school choice; child behaviour and cognitive development; child and parental health; parent’s employment and education; income and poverty; housing, neighbourhood and residential mobility; and social capital and ethnicity.\n\nThe study is core funded by the Economic and Social Research Council (ESRC) and a consortium of Government departments.', 'isPartOf': 'NOT APPLICABLE'}",2ca2a23d-64c3-4691-9289-197436dddfa3,https://web.www.healthdatagateway.org/dataset/2ca2a23d-64c3-4691-9289-197436dddfa3,"{'formatAndStandards': {'language': ['en'], 'conformsTo': ['LOCAL'], 'format': ['SQL database table'], 'vocabularyEncodingScheme': ['LOCAL']}, 'access': {'accessRequestCost': ['Data provision is free from SAIL. 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"{'title': 'Higher Education Statistics Agency (HESA) Student Data', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'SAIL', 'identifier': '5f3f98068af2ef61552e1d75'}, 'keywords': ['Higher Education', 'Graduates', 'Students', 'SAIL', 'core-res'], 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'abstract': 'The Higher Education Statistics Agency Student Data covers information on students, staff, graduates, finances, estates, and other populations from all aspects of the UK higher eduation sector.'}",68b04d3b-17b4-4a04-a8a3-e2a93ed231df,"{'spatial': ['https://www.geonames.org/2634895/wales.html'], 'typicalAgeRange': '0-150', 'pathway': 'All higher education data pertaining to students', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '64c6a583-f71b-478e-a26b-5e581226ec6d', '3.0.0': '2cb07157-1c99-48dc-9926-0ad968a09166', '0.0.1': 'ec8e4933-2118-4366-a61a-090748e49be7', '2.0.0': '1680204b-e27b-4198-99dc-ddb1023db9ae', 'latest': '2cb07157-1c99-48dc-9926-0ad968a09166'}","{'description': 'Data population includes information on students, staff, graduates, finances, estates, and other populations from all aspects of the UK higher eduation sector.', 'associatedMedia': ['https://saildatabank.com/', 'https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/'], 'isPartOf': 'NOT APPLICABLE'}",2cb07157-1c99-48dc-9926-0ad968a09166,https://web.www.healthdatagateway.org/dataset/2cb07157-1c99-48dc-9926-0ad968a09166,"{'access': {'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'dataProcessor': 'Higher Education Statistics Agency', 'dataController': 'Higher Education Statistics Agency', 'accessRights': ['https://saildatabank.com/application-process/'], 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'deliveryLeadTime': '2-6 MONTHS', 'jurisdiction': ['GB']}, 'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'resourceCreator': ['[""Higher Education Statistics Agency""]'], 'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS']}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL'], 'format': ['SQL database table']}}","{'origin': {'purpose': ['STUDY', 'ADMINISTRATIVE'], 'source': ['LIMS', 'OTHER'], 'collectionSituation': ['COMMUNITY', 'OTHER']}, 'temporal': {'timeLag': '2-6 MONTHS', 'distributionReleaseDate': '2019-01-01', 'startDate': '2001-12-20', 'accrualPeriodicity': 'WEEKLY', 'endDate': '2020-08-25'}}",2020-09-10T12:47:12Z,"[{'observedNode': 'PERSONS', 'measuredValue': '2844000', 'observationDate': '01/01/2018', 'measuredProperty': 'Count'}]",3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Yes. To any SAIL dataset & reference data.'], 'tools': ['https://conceptlibrary.saildatabank.com']}",2021-10-05T16:30:54Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 14, 'structuralMetadata.columnName': 14, 'structuralMetadata.columnDescription': 14, 'structuralMetadata.dataType': 14, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '8c20c1c6-2fb2-4024-bdc7-560911b6997a', 'description': 'SAIL Linking table for Student Data unique ID.', 'name': 'HOME_1819_ALF', 'dataElementsCount': 14, 'dataElements': '2c6b52bc-0895-4da3-ab9e-ea76505ae766, 89b2fffe-97e8-4bde-bef8-bed064c116a6, 7c387dd7-a542-4156-a07b-3b56ef896193, dba4f86f-039c-46fd-9b91-c582926b2c91, d0a4f31f-54fd-4e18-8db2-9dc51b411666, fc6d945d-7ade-4244-80f1-76d63d4397a4, 27c92a45-6b5c-463f-8a7e-79d49b7c12cd, 60707210-11e2-4c96-abed-5b19ab12a4d8, f6a8ea11-6ef7-4d22-9da4-44d22e93b46a, 2dcdd43f-e2a9-4bc9-9113-59055122552e, f76e0a75-58c1-43b5-b3ab-778b5771258e, 06575dc8-7c45-4936-8bbf-7f63288b54b7, 98136dfa-48ab-48d8-88e2-70bfd768a456, 64942d19-0688-49e4-9436-bf3817f85994'}]}"
"{'title': 'GENOMICS ENGLAND 100K NHSD LINKED DATA', 'abstract': 'NHS national data sets collect information from care records, systems and organisations on specific areas of health and care.', 'publisher': {'name': 'GENOMICS ENGLAND', 'memberOf': 'ALLIANCE', 'contactPoint': 'gecip-help@genomicsengland.co.uk'}, 'contactPoint': 'gecip-help@genomicsengland.co.uk', 'keywords': ['genome', 'genomics', 'data', 'Hospital episode statistics', 'DNA', 'DATA-CAN'], 'doiName': 'Not Available'}",14c31b39-f189-4417-bd38-635268495593,"{'spatial': 'England,UK', 'typicalAgeRange': '0-150', 'followup': '> 10 YEARS', 'physicalSampleAvailability': ['DNA'], 'pathway': 'Secondary care.'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '1f8aa2ef-be0b-442d-90b6-0a75ffabd3af', '2.0.0': '2d4b933d-1c8b-4fde-860e-c324454d28f9', '1.0.0': '15a7c12f-145c-46fc-acc9-c27e83ed2c4d', 'latest': '2d4b933d-1c8b-4fde-860e-c324454d28f9'}","{'description': ""HES: Hospital Episode Statistics containing details of all commissioned activity during admissions, outpatient appointments and A&E attendances. \n        DID: Metadata (demographics, modalities, ordering entity and dates) on diagnostic imaging tests collated from local radiology information systems. \n        PROMS: Patient Reported Outcome Measures report health gain in patients undergoing major surgical operations based on responses to questionnaire pre and post procedure. \n        MHMDS: Data on patients receiving care in NHS specialist mental health services. Reporting care period for this dataset is up to March '14. Will be replaced in the future with MHSDS.\n        ONS/CEN: Office of National Statistics registry data for cancer registrations and deaths inside and outside hospitals. 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One record per spell per patient in a provider. \n        \n        mhmd_v4_event\n        \n        Historic records of MH related admissions of GeL main programme participants. Episode and event table link to the records table via spell_id.\n        \n        mhmd_v4_episode\n        \n        Historic records of MH related admissions of GeL main programme participants. Episode and event table link to the records table via spell_id.\n        \n        mh_bridge\n        \n        Linking file of participants to MHMD records and the three interlinking tables (spells). \n        \n        cen\n        \n        Cohort Event Notification for GeL main programme participants. \n        \n        ons\n        \n        Office of National Statistics - death registration and cause of death reports for the GeL main programme participants."", 'isPartOf': '100k Secondary Linked Medical History Data', 'associatedMedia': ['https://cnfl.extge.co.uk/display/GERE/Genomics+England+Research+Environment', 'https://cb.extge.co.uk/labkey/CohortBrowser/project-begin.view?pageId=Introduction', 'https://youtu.be/Kie3HY8y6AU', 'https://youtu.be/EAjPVcAlGpM', 'https://youtu.be/5QhNjE_hdsQ']}",2d4b933d-1c8b-4fde-860e-c324454d28f9,https://web.www.healthdatagateway.org/dataset/2d4b933d-1c8b-4fde-860e-c324454d28f9,"{'usage': {'resourceCreator': 'The 100,000 Genomes Project Protocol v3, Genomics England. doi:10.6084/m9.figshare.4530893.v3. 2017.\nPublications that use the Genomics England Database should include an author as: Genomics England Research Consortium. Please see publication policy.', 'investigations': ['https://research.genomicsengland.co.uk/research-registry/browse/'], 'isReferencedBy': ['https://www.genomicsengland.co.uk/about-gecip/publications/'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['ETHICS APPROVAL REQUIRED', 'PROJECT SPECIFIC RESTRICTIONS', 'PUBLICATION MORATORIUM']}, 'formatAndStandards': {'format': ['Multiple Formats Available'], 'vocabularyEncodingScheme': ['OPCS4', 'READ', 'SNOMED CT', 'NHS NATIONAL CODES', 'ODS', 'ICD10'], 'language': ['en'], 'conformsTo': ['NHS DATA DICTIONARY']}, 'access': {'deliveryLeadTime': '2-6 MONTHS', 'dataProcessor': 'GENOMICS ENGLAND', 'accessRequestCost': 'Fees will be dependent on the type of access that is necessary. Raw data is not eligible for export. Summary-level data may be exported provided that it is approved through the Genomics England Airlock Process', 'dataController': 'NHS DIGITAL', 'accessService': 'More information about the Genomics England Research Environment can be found here:\nhttps://www.genomicsengland.co.uk/about-genomics-england/research-environment/\nhttps://research-help.genomicsengland.co.uk/display/GERE/1.+The+Genomics+England+Research+Environment\nGenomics England 100k participants have consented to longitudinal lifetime followup and recontact safely through our clinical network.\nBRST (Bioinformatics Research Services) are a team of bioinformatics who know the dataset inside out and provide consultancy projects on a case by case basis.  \nOur network of clinical and medical experts can be made available on case by case basis.\nResearchers have the opportunity to work with our and access the GeCIP network who are a community of world-leading experts in specific cancers and rare diseases.', 'accessRights': ['https://www.genomicsengland.co.uk/about-gecip/joining-research-community/'], 'jurisdiction': ['GB']}}","{'temporal': {'startDate': '2014-01-01', 'endDate': '2019-01-01', 'distributionReleaseDate': '2020-09-03', 'accrualPeriodicity': 'QUARTERLY', 'timeLag': '2-6 MONTHS'}, 'origin': {'source': ['EPR', 'OTHER'], 'purpose': ['CARE', 'ADMINISTRATIVE'], 'collectionSituation': ['ACCIDENT AN EMERGENCY', 'OUTPATIENTS', 'IN-PATIENTS']}}",2020-04-07T11:39:05Z,"[{'observedNode': 'Persons', 'measuredValue': '71,800', 'disambiguatingDescription': 'Rare Disease Participants', 'observationDate': '2020-09-03', 'measuredProperty': 'Count'}, {'observedNode': 'Persons', 'measuredValue': '17,339', 'disambiguatingDescription': 'Cancer Participants', 'observationDate': '2020-09-03', 'measuredProperty': 'Count'}, {'observedNode': 'Findings', 'measuredValue': '17,891', 'disambiguatingDescription': 'Cancer Germline - Number of genomes', 'observationDate': '2020-09-03', 'measuredProperty': 'Count'}, {'observedNode': 'Findings', 'measuredValue': '19,333', 'disambiguatingDescription': 'Cancer Tumour - Number of genomes', 'observationDate': '2020-09-03', 'measuredProperty': 'Count'}, {'observedNode': 'Findings', 'measuredValue': '74,008', 'disambiguatingDescription': 'Rare Disease - Number of genomes', 'observationDate': '2020-09-03', 'measuredProperty': 'Count'}]",2.0.0,"{'qualifiedRelation': ['Not Applicable'], 'derivation': ['Multiple'], 'tools': ['https://github.com/genomicsengland']}",2021-01-15T10:23:44Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 13, 'structuralMetadata.tableName': 13, 'structuralMetadata.tableDescription': 13, 'structuralMetadata.dataElementsCount': 1446, 'structuralMetadata.columnName': 1446, 'structuralMetadata.columnDescription': 1419, 'structuralMetadata.dataType': 1446, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '4873191d-8bfd-4765-adda-6e01315d8f5b', 'description': 'Linking file of participants to MHMD records 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"{'title': 'COVID-19 Vaccination Adverse Reaction', 'keywords': ['ENGLAND', 'DIGITRIALS', 'National Core Study', 'COVID-19', 'NCS'], 'publisher': {'name': 'NHS DIGITAL', 'identifier': '5f86cd34980f41c6f02261f4', 'memberOf': 'ALLIANCE'}, 'abstract': 'Data relating to any adverse reactions which occur within the first fifteen minutes after administration of the coronavirus (COVID-19) vaccination.', 'contactPoint': 'enquiries@nhsdigital.nhs.uk'}",080a90e4-4bc6-4153-a4c6-c120eef5ba94,"{'typicalAgeRange': '16-150', 'pathway': 'NOT APPLICABLE', 'followup': 'OTHER', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'http://www.geonames.org/6269131/england.html'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': 'befd32d2-3267-4545-8600-10ffbb2bf733', '3.0.0': '2d4d0d89-edfb-448a-b95b-a3c0401ebe75', '1.0.0': 'a9317016-d985-4957-ac3a-2427722544a4', '0.0.1': '6e20e516-97d4-4cdc-b41b-107ed3fc02f5', 'latest': '2d4d0d89-edfb-448a-b95b-a3c0401ebe75'}","{'description': ""Includes: Patient demographics, Source Organisation, Adverse reaction details. 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"{'title': 'IBD NIHR BioResource: NHS Trust data', 'publisher': {'contactPoint': 'nbr@bioresource.nihr.ac.uk', 'name': 'GUT REACTION', 'memberOf': 'HUB'}, 'abstract': '10 NHS Trusts have been asked to provide detailed data on participants in their Trust. Categories of data requested include: test results; prescribing; imaging; digital pathology; data from disease-specific databases and registries; discharge summaries.', 'contactPoint': 'nbr@bioresource.nihr.ac.uk', 'keywords': ['IBD', ""Crohn's"", 'colitis', 'recall', 'NHS', 'Trusts']}",ae1898da-7fe5-4fe0-b10d-9f06cdec1735,"{'spatial': 'England (https://www.geonames.org/6269131/england.html)', 'followup': '1 - 10 YEARS', 'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM'], 'typicalAgeRange': '18-85'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '2d6e8e68-2fc9-4b9c-a517-c5c5677af225'},"{'description': 'The NIHR IBD Bioresource comprises ~30k participants with Inflammatory Bowel Disease (IBD), which include the members of the HDR UK IBD Hub. For the Gut Reaction programme, 10 NHS Trusts have been asked to provide detailed data on the participants in their Trust.  Categories of data requested include: test results; prescribing; imaging; digital pathology; data from disease-specific databases and registries; and discharge summaries. While the formats and contents will vary, the hope is that this will be a much richer source of data than nationally collated datasets, like NHS Digital.', 'isPartOf': 'Not Applicable'}",2d6e8e68-2fc9-4b9c-a517-c5c5677af225,https://web.www.healthdatagateway.org/dataset/2d6e8e68-2fc9-4b9c-a517-c5c5677af225,"{'usage': {'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': 'RESEARCH USE ONLY', 'isReferencedBy': ['Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/'], 'resourceCreator': 'NIHR BioResource. Acknowledgement text: ""We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.""'}, 'access': {'accessRights': ['https://bioresource.nihr.ac.uk/using-our-bioresource'], 'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)', 'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)', 'accessRequestCost': 'https://bioresource.nihr.ac.uk/using-our-bioresource/industry-researchers/industry-bioresource-usage-costs/', 'deliveryLeadTime': '2-6 MONTHS', 'jurisdiction': 'GB-GBN', 'accessService': 'Data may only be accessed in an approved Trustworthy Research Environment'}, 'formatAndStandards': {'conformsTo': 'LOCAL', 'language': 'en', 'vocabularyEncodingScheme': 'NHS NATIONAL CODES', 'format': ['text/csv']}}","{'origin': {'collectionSituation': ['ACCIDENT AND EMERGENCY', 'OUTPATIENTS', 'IN-PATIENTS'], 'source': 'EPR', 'purpose': 'STUDY'}, 'temporal': {'timeLag': '2-6 MONTHS', 'accrualPeriodicity': 'IRREGULAR'}}",2021-02-21T16:55:31Z,,0.0.1,{'derivation': ['Not Available']},2021-02-21T16:52:47Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Welsh Cancer Intelligence and Surveillance Unit (WCISU)', 'abstract': 'The Welsh Cancer Intelligence & Surveillance Unit (WCISU) is the National Cancer Registry for Wales and its primary role is to record, store and report on all incidence of cancer for the resident population of Wales wherever they are treated.', 'publisher': {'identifier': '5f3f98068af2ef61552e1d75', 'name': 'SAIL', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'keywords': ['CANCER', 'SAIL', 'WCSU']}",368ad790-3ad8-4f93-9a7c-0bfb64dc6015,"{'followup': 'UNKNOWN', 'typicalAgeRange': '0-150', 'pathway': 'All pathways about cancer', 'spatial': 'https://www.geonames.org/2634895/wales.html', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'b9941475-45ba-4b7b-981a-2d7065e01bfd', '8.0.0': '2d7a047c-a90f-48e4-82ee-9a8a082a696e', '1.0.0': '5e543609-b331-4513-b796-e63e9a3ab725', '6.0.0': '265cb00e-1731-4370-b748-203d8bd6c416', '5.0.0': '24095736-dbea-4c37-86fe-ddf3a6933a6b', '4.0.0': 'd2667c43-adfd-4a61-b090-38d39e35a392', '3.0.0': '54abedcd-d6d8-482b-a3fd-1217101a9a8e', '2.0.0': 'e086b84b-bb86-4043-b1b1-ef4c3410f3b0', '7.0.0': 'dcac20b1-ba99-41ad-9106-b6947553a45d', 'latest': '2d7a047c-a90f-48e4-82ee-9a8a082a696e'}","{'description': 'The Welsh Cancer Intelligence & Surveillance Unit (WCISU) is the National Cancer Registry for Wales and its primary role is to record, store and report on all incidence of cancer for the resident population of Wales wherever they are treated. Cancer registration in Wales began almost five decades ago and today’s electronic database which holds records going back to 1972 contains in the region of 686,000 records.\n\nWCISU collects data about occurrences of cancer in Welsh residents via direct or indirect submissions from Welsh Hospitals.\n\nStaging of malignant melanoma (ICD 10 code C43), breast (C50), colorectal (C18-C20) and cervix (C53) started in 2001 since this was when we started receiving pathological information. Staging for all other cancers started in 2010.\n\nTreatment information started in 1995.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/'], 'isPartOf': 'NOT APPLICABLE'}",2d7a047c-a90f-48e4-82ee-9a8a082a696e,https://web.www.healthdatagateway.org/dataset/2d7a047c-a90f-48e4-82ee-9a8a082a696e,"{'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE', 'RESEARCH SPECIFIC RESTRICTIONS'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'isReferencedBy': ['Boyce et al., (2019); Inequalities in health? An update on the effect of social deprivation for patients with breast cancer in South East Wales. https://doi.org/10.1016/j.surge.2018.05.004'], 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'resourceCreator': ['Welsh Cancer Intelligence & Surveillance Unit (WCISU)']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'language': ['en'], 'format': ['SQL database table']}, 'access': {'jurisdiction': ['GB'], 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'dataProcessor': 'SAIL Databank', 'deliveryLeadTime': 'OTHER', 'dataController': 'NHS Wales’ Informatics Service (NWIS)', 'accessRights': ['https://saildatabank.com/application-process/']}}","{'temporal': {'startDate': '1994-01-01', 'endDate': '2021-02-04', 'distributionReleaseDate': '2019-05-31', 'accrualPeriodicity': 'ANNUAL', 'timeLag': '1-2 MONTHS'}, 'origin': {'source': ['EPR'], 'collectionSituation': ['PRIMARY CARE'], 'purpose': ['STUDY', 'DISEASE REGISTRY']}}",2020-01-13T14:47:30Z,"[{'observedNode': 'EVENTS', 'measuredValue': '714794', 'disambiguatingDescription': 'The Welsh Cancer Intelligence & Surveillance Unit (WCISU) is the National Cancer Registry for Wales and its primary role is to record, store and report on all incidence of cancer for the resident population of Wales wherever they are treated.', 'observationDate': '20/07/2021', 'measuredProperty': 'Welsh Cancer Neoplasm and Treatment Events'}]",8.0.0,"{'qualifiedRelation': ['Yes. To any SAIL and & reference data.'], 'derivation': ['Not Available'], 'tools': ['https://conceptlibrary.saildatabank.com/']}",2021-09-27T10:30:32Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 3, 'structuralMetadata.tableName': 3, 'structuralMetadata.tableDescription': 3, 'structuralMetadata.dataElementsCount': 57, 'structuralMetadata.columnName': 57, 'structuralMetadata.columnDescription': 57, 'structuralMetadata.dataType': 57, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '93aa3b57-d962-48fe-9784-73686f09c5f0', 'description': 'Contains details of all invitations and treatment for a cervical cytology test and the type of recall the woman was on at time of invitation, as well as the surgery performed [if any]. Data available from approximately 1980 [will differ for various tables].', 'name': 'treatment', 'dataElementsCount': 9, 'dataElements': 'a6f11caf-4835-4a78-b98a-6496800019dc, 068bdabd-6c5a-40f1-b12b-7864af4735af, c88bb3b1-634d-48d1-9d16-2c161ff384b7, bf8ae760-4512-4625-bed5-a2fd6806c9d7, 97201331-fdba-4780-8cd0-0e5c7372a2a7, e7b229a4-3f66-4145-9df3-1d6e6148f366, d5b36527-52a4-4119-975e-5a387319a197, c9ba3984-b014-49f7-96f6-b4f0bcbe5838, 5389043c-e031-4747-a26a-b6546c042f3b'}, {'id': '31d9c0f1-4844-4b8f-9efa-66302d279083', 'description': 'Generally anonymised information for individual patient, including gender, date of death [if any, due to neoplasm], which GP identified the neoplasm originally, and includes geographic information down to LSOA level. 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"{'title': 'NHS Tayside - A&E drugs given during an A&E visit', 'publisher': {'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE', 'identifier': '607db9c4e1f9d3704d570d1f', 'memberOf': 'ALLIANCE'}, 'abstract': 'Accident and Emergency episode level data.', 'keywords': ['Accident and Emergency', 'Tayside', 'NHS', 'HIC', 'Scotland'], 'contactPoint': 'hicsupport@dundee.ac.uk'}",acfbef89-344c-49a5-8079-7344f4316e0f,"{'followup': 'UNKNOWN', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2636157/tayside-region.html'], 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'3.0.0': 'df0b5ce6-3c11-4e79-9e69-7836e8639ccd', '4.0.0': '2d9240b4-6f54-4d00-9c2e-d19220c33211', 'latest': '2d9240b4-6f54-4d00-9c2e-d19220c33211'}","{'description': 'This dataset provides information on the drugs used during the Accident and Emergency visit in Tayside', 'isPartOf': 'University of Dundee Health Informatics Centre'}",2d9240b4-6f54-4d00-9c2e-d19220c33211,https://web.www.healthdatagateway.org/dataset/2d9240b4-6f54-4d00-9c2e-d19220c33211,"{'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['DISCLOSURE CONTROL'], 'resourceCreator': ['NHS Tayside']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'format': ['CSV', 'Database'], 'language': ['en']}, 'access': {'jurisdiction': ['GB-SCT'], 'dataProcessor': 'University of Dundee, Health Informatics Centre', 'accessRights': ['https://www.dundee.ac.uk/hic/governanceapprovalsupport/'], 'accessRequestCost': ['Quotation available on request'], 'accessService': 'HIC has implemented a remote-access Trusted Research Environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details are available via the following link:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/', 'deliveryLeadTime': '2-4 WEEKS', 'dataController': 'NHS Tayside'}}","{'origin': {'collectionSituation': ['ACCIDENT AND EMERGENCY'], 'purpose': ['CARE'], 'source': ['EPR']}, 'temporal': {'distributionReleaseDate': '2021-09-10', 'timeLag': 'NOT APPLICABLE', 'endDate': '2017-06-27', 'startDate': '2003-01-01', 'accrualPeriodicity': 'STATIC'}}",2021-09-13T15:55:37Z,"[{'observedNode': 'PERSONS', 'measuredValue': '92000', 'disambiguatingDescription': '92,000 patients in the dataset', 'observationDate': '10/09/2021', 'measuredProperty': 'Count'}, {'observedNode': 'EVENTS', 'measuredValue': '166000', 'disambiguatingDescription': '166,000 records in the dataset', 'observationDate': '11/11/2021', 'measuredProperty': 'Count'}]",4.0.0,,2021-11-19T15:56:40Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 10, 'structuralMetadata.columnName': 10, 'structuralMetadata.columnDescription': 10, 'structuralMetadata.dataType': 10, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '1e4d5bd4-65cf-4877-847a-dc3969656f03', 'description': 'This dataset provides information on the drugs used during the Accident and Emergency visit', 'name': 'Accident and Emergency Drugs (T)', 'dataElementsCount': 10, 'dataElements': '251a3dc1-af6f-4a42-b859-b215710a03d7, a43c8a4f-9755-4e43-bf4b-e4c1921e99ad, 07362ba1-f79c-4f25-9ecd-42edbb90d626, 9d0396e8-d3aa-4be7-9f64-0eeec79e33e1, c1374557-5541-474b-8f15-75bf7d977708, 2d5a1b4c-34f8-4f73-912f-0d7e0637a532, 1b6a2153-4205-45de-a402-da2ac6d0f10e, 2c4733cd-0db4-41de-bbd9-db6f1139dfff, 009f82be-bf40-478f-be82-7ee8b75ebdac, 2df7edc8-6637-4f67-80e1-3dd6f1ff9416'}]}"
"{'title': 'Death Registration data for CPRD Aurum', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c2e1f9d3704d570cee', 'name': 'CPRD'}, 'abstract': 'CPRD Aurum linked Death Registration data from the Office for National Statistics (ONS) include information on the official date and causes of death.', 'keywords': ['Deaths', 'Cause', 'Registration'], 'contactPoint': 'enquiries@cprd.com', 'doiName': 'https://doi.org/10.48329/q34f-f505'}",ad8f07ef-a984-449b-8a60-d1dd564cc36d,"{'typicalAgeRange': '0-115', 'spatial': ['https://www.geonames.org/6269131/england.html'], 'followup': 'OTHER', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '42522131-6957-47eb-a0b5-960dcbd20d93', '5.0.0': '2dd188f3-0b5c-4cf7-a077-97b78746d254', '4.0.0': 'd0f5761c-66af-4a1c-81c3-eae0f87724b1', '3.0.0': 'c577669a-a84f-493e-8164-3fe02f618561', '1.0.0': 'bf990e29-3fd0-4cc0-8c33-baa4f1bcf758', '0.0.1': '6c16c7ec-8d19-41eb-a266-612d9a6f8766', 'latest': '2dd188f3-0b5c-4cf7-a077-97b78746d254'}","{'description': 'CPRD Aurum linked Death Registration data from the Office for National Statistics (ONS) include information on the official date and causes of death.', 'associatedMedia': ['https://www.cprd.com/linked-data'], 'isPartOf': 'CPRD Aurum'}",2dd188f3-0b5c-4cf7-a077-97b78746d254,https://web.www.healthdatagateway.org/dataset/2dd188f3-0b5c-4cf7-a077-97b78746d254,"{'formatAndStandards': {'vocabularyEncodingScheme': ['ICD10'], 'format': ['Tab delimited text'], 'conformsTo': ['NHS DATA DICTIONARY'], 'language': ['en']}, 'usage': {'resourceCreator': ['ONS'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'NO LINKAGE', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'investigations': ['https://www.cprd.com/protocol-list'], 'dataUseRequirements': ['GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'isReferencedBy': ['Gallagher,AM et al. (2019). The accuracy of date of death recording in the Clinical Practice Research Datalink GOLD database in England compared with the Office for National Statistics death registrations. Pharmacoepidemiol Drug Saf. issn: 1053-8569. doi: 10.1002/pds.4747.']}, 'access': {'jurisdiction': ['GB-ENG'], 'deliveryLeadTime': 'VARIABLE', 'dataController': 'Clinical Practice Research Datalink (CPRD)', 'accessRights': ['HTTPS://CPRD.COM/DATA-ACCESS'], 'accessRequestCost': ['https://www.cprd.com/pricing'], 'dataProcessor': 'CPRD', 'accessService': 'Access to CPRD data, including UK Primary Care Data, and linked data such as Hospital Episode Statistics, is subject to protocol approval via CPRD’s Research Data Governance (RDG) Process. 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"{'title': 'Cafcass England (CAFE)', 'abstract': 'Cafcass (Children and Family Court Advisory and Support Service) England Family Justice dataset.', 'publisher': {'identifier': '5f3f98068af2ef61552e1d75', 'memberOf': 'ALLIANCE', 'name': 'SAIL'}, 'keywords': ['CAFE', 'SAIL', 'core-res'], 'contactPoint': 'SAILDatabank@swansea.ac.uk'}",8ee61578-e298-423a-be22-cb0438023e5c,"{'typicalAgeRange': '0-18', 'spatial': ['United Kingdom,England'], 'followup': 'OTHER', 'pathway': 'Family justice cases', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'4.0.0': 'a2226588-3fce-4103-8960-6bb0b22631fb', '5.0.0': '2e821540-cce6-4b75-94a1-7e210045fe86', 'latest': '2e821540-cce6-4b75-94a1-7e210045fe86'}","{'description': 'Cafcass (Children and Family Court Advisory and Support Service) England Family Justice dataset.\n\nThe Children and Family Court Advisory and Support Service (Cafcass) looks after the interests of children involved in family proceedings. 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"{'title': 'SARS-CoV-2 viral sequencing data (COG-UK data) - Lineage/Variant Data - NI', 'contactPoint': 'hbs@hscni.net', 'abstract': 'Summary of SARS-CoV-2 lineages and mutations', 'publisher': {'name': 'HEALTH AND SOCIAL CARE NORTHERN IRELAND', 'identifier': '5f89662f7150a1b050be0710', 'memberOf': 'ALLIANCE'}, 'keywords': ['spike', 'pangolin', 'lineage', 'NCS', 'National Core Study']}",3d2d9c5e-6111-4583-a6db-07affd628f1e,"{'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'OTHER', 'pathway': 'Relates to virus sequencing for COVID-19 only', 'spatial': 'https://www.geonames.org/2641364/northern-ireland.html'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '2e98ae87-b10d-4aa0-acec-773a2b028af1'},"{'description': 'File contains basic public metadata, including sequence_name, location, date, pangolin lineage assignment, version and associated scores, scorpio VOC/VUI constellation call and associated scores, key spike protein mutations calls, and a list of all nucleotide mutations found.', 'isPartOf': 'COG UK TRE'}",2e98ae87-b10d-4aa0-acec-773a2b028af1,https://web.www.healthdatagateway.org/dataset/2e98ae87-b10d-4aa0-acec-773a2b028af1,"{'formatAndStandards': {'format': ['csv'], 'conformsTo': ['LOCAL'], 'language': ['en'], 'vocabularyEncodingScheme': ['NHS NATIONAL CODES']}, 'access': {'accessRequestCost': ['http://www.hscbusiness.hscni.net/pdf/Researcher%20Pack.zip'], 'accessService': 'Remote access can now be granted via an HSCNI tenancy of the UK Secure e-Research Platform (UK SeRP), the HBS still offer the physical safe setting in Belfast for local research.', 'dataProcessor': 'HSC Honest Broker Service', 'jurisdiction': ['GB-NIR'], 'accessRights': ['http://www.hscbusiness.hscni.net/services/2454.htm'], 'deliveryLeadTime': '1-2 MONTHS', 'dataController': 'Public Health Agency (PHA) NI'}, 'usage': {'resourceCreator': ['ACKNOWLEDGEMENT  The authors would like to acknowledge the help provided by the staff of the Honest Broker Service (HBS) within the Business Services Organisation Northern Ireland (BSO). The HBS is funded by the BSO and the Department of Health (DoH). The authors alone are responsible for the interpretation of the data and any views or opinions presented are solely those of the author and do not necessarily represent those of the BSO.'], 'dataUseLimitation': ['RESEARCH USE ONLY'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS']}}","{'temporal': {'accrualPeriodicity': 'OTHER', 'startDate': '2020-03-10', 'endDate': '2021-08-09', 'timeLag': '1-2 WEEKS'}, 'origin': {'collectionSituation': ['OTHER'], 'purpose': ['STUDY'], 'source': ['LIMS']}}",2021-11-01T10:53:09Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '20026', 'observationDate': '17/08/2021', 'measuredProperty': 'Count', 'disambiguatingDescription': 'Number of results in the most recent database of sequencing results'}]",3.0.0,,2021-11-01T10:53:09Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 7, 'structuralMetadata.columnName': 7, 'structuralMetadata.columnDescription': 7, 'structuralMetadata.dataType': 7, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'f2e1c987-1815-4e9b-ba76-63a5899367bd', 'description': 'Sample identifiers', 'name': 'COG-UK (NI)', 'dataElementsCount': 7, 'dataElements': '9e842cf1-861e-448c-a726-43cbb34e5c5c, b758ddda-aaea-4338-bf0d-1d675da1256e, 287f60c4-4cfd-4228-991e-41bed5f2bbd6, 2a3d8848-ea09-4a84-816d-985cba369403, 16dc4dae-f8b4-453d-aae7-ad36c46d795b, 56ce46db-81c1-4302-8ddc-fc167e913a4a, 043dc46c-6b76-4712-9679-a09569a04ad8'}]}"
"{'title': 'Patient Episode Dataset for Wales', 'abstract': 'The database contains all inpatient and day case activity undertaken in NHS Wales plus data on Welsh residents treated in English Trusts.', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'SAIL', 'contactPoint': 'SAILDatabank@swansea.ac.uk'}, 'doiName': 'In Progress', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'keywords': ['PEDW', 'SAIL', 'NCS', 'National Core Study', 'COVID-19']}",4c33a5d2-164c-41d7-9797-dc2b008cc852,"{'typicalAgeRange': '0-150', 'followup': 'OTHER', 'pathway': 'All pathways at this point of care', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'Wales'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'8.0.0': '2057a9e3-b491-4d8f-874c-9857d00116b0', '9.0.0': '2ef8bfd7-3edb-49e0-a1eb-edc181c03e1d', '7.0.0': '4fdc745e-2c55-4c10-8742-58ced774b52c', '6.0.0': 'd99dd234-0fed-4731-99fe-82a567187854', '5.0.0': '1a4708e5-14d3-4177-b4ef-35f71e72a16c', '4.0.0': '75c41a64-9c78-4a26-a34d-4bef2d11d506', '3.0.0': 'bb9b1a6b-e8e3-410e-85cc-61bde7a9bc7b', '2.0.0': '511c1eb5-904e-442d-992c-db3bb2ec1a86', '1.0.0': '3f586f92-ed61-4d75-9593-865f7aeba7ec', '0.0.1': '13045a5b-3f9f-43c4-9509-d8a2ae7ea5f4', 'latest': '2ef8bfd7-3edb-49e0-a1eb-edc181c03e1d'}","{'description': 'NHS Wales hospital admissions (Inpatients and daycases) dataset comprising of attendance and clinical information for all hospital admissions: includes diagnoses and operations performed. 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For example:\n\nCounts will vary depending on the number of diagnosis fields used e.g. primary only, all fields;\nThere are a number of different things that can be counted in PEDW e.g. individual episodes of care, admissions, discharges, periods of continuous care (group of episodes), patients or procedures.\nWhen looking at diagnosis or procedures the number will vary depending on whether you look at only in the primary diagnosis / procedure field or if the secondary fields are also included.\nCoding practices vary. In particular, coding practices for recording secondary diagnoses is likely to vary for different hospitals. This makes regional variations more difficult to interpret. The validation process led by the Corporate Health Improvement Programme and implemented by NWIS is aiming to address some of these inconsistencies.\n\nDue to the complexity and pitfalls of PEDW it is recommended that any PEDW requests for public health purposes are discussed with a member of the SAIL team. 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Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.', 'deliveryLeadTime': '2-6 MONTHS', 'accessRights': ['https://saildatabank.com/application-process/'], 'dataProcessor': 'SAIL Databank'}}","{'temporal': {'endDate': '2020-05-28', 'timeLag': '2-4 WEEKS', 'startDate': '1995-04-01', 'accrualPeriodicity': 'MONTHLY', 'distributionReleaseDate': '2019-07-15'}, 'origin': {'source': 'EPR', 'purpose': ['CARE', 'AUDIT', 'ADMINISTRATIVE', 'FINANCIAL', 'OTHER'], 'collectionSituation': 'IN-PATIENTS'}}",2020-01-13T14:47:29Z,,9.0.0,"{'derivation': ['Not Available'], 'tools': ['https://conceptlibrary.saildatabank.com/'], 'qualifiedRelation': ['Yes. 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"{'title': 'Community perception on public health measures for COVID-19 prevention/control', 'contactPoint': 'RESPIRE@ed.ac.uk', 'publisher': {'identifier': '607db9c2e1f9d3704d570ce6', 'name': 'BREATHE', 'memberOf': 'HUB'}, 'keywords': ['public health', 'BREATHE', 'RESPIRE', 'Community preception', 'Pakistan', 'Covid-19'], 'abstract': 'One of the key approaches to containing COVID-19 has been self-quarantine and social distancing, which poses multiple challenges especially in a Pakistani community which follows strong cultural and social beliefs.'}",6464fb4f-2838-495b-9963-4001204ed166,"{'typicalAgeRange': '18-150', 'spatial': 'https://www.geonames.org/1168579/islamic-republic-of-pakistan.html', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '6108f5dc-c805-4eeb-9f10-03248d7d8a18', '5.0.0': '2f9c0340-2116-41f5-bdbd-921561476061', '3.0.0': 'af238430-c257-4d60-9ff0-1de6b825f09e', '4.0.0': '58cce720-b79e-4426-bfc0-83fb2e3fbb0a', '1.0.0': '36a5623d-0b5c-4b4b-bbba-cd16690000cb', '0.0.1': '548721da-1539-4e8e-9630-79738bfd7ce2', 'latest': '2f9c0340-2116-41f5-bdbd-921561476061'}","{'description': 'Whereas most of the evidence generated from the start of the global pandemic, COVID-19, focuses on epidemiological, diagnostic and clinical aspects of the illness, importance of social aspects has also been highlighted. This has been included as one of the 34 knowledge gaps specified in the WHO R&D Blueprint WHO 2019 Novel Coronavirus Global research and innovation forum: towards a research roadmap published recently. One of the key approaches to containing COVID-19 has been self-quarantine and social distancing, which although is the need of the day but not easy to manage posing multiple challenges especially in a Pakistani community which follows strong cultural and social beliefs. It is, therefore important to identify the perception, practice and attitude of the community towards containing this disease. These insights are important for national health officials planning to implement control measures in an existing diverse socio-cultural system, an aspect which has been highlighted in the National Action Plan (NAP) for COVID-19 in Pakistan, published on 13th March 2020.\n\nFor further information, see: https://www.ed.ac.uk/usher/respire/covid-19/community-perception-public-health-measures', 'isPartOf': 'BREATHE'}",2f9c0340-2116-41f5-bdbd-921561476061,https://web.www.healthdatagateway.org/dataset/2f9c0340-2116-41f5-bdbd-921561476061,"{'access': {'dataProcessor': 'RESPIRE', 'jurisdiction': ['PK'], 'accessService': 'Access is managed on a project-by-project basis. Contact the RESPIRE team', 'accessRights': ['https://www.ed.ac.uk/usher/respire/about/projects'], 'dataController': 'RESPIRE'}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'format': ['text']}, 'usage': {'resourceCreator': ['RESPIRE Collaboration'], 'isReferencedBy': ['Not Available']}}","{'temporal': {'endDate': '2020-10-31', 'startDate': '2020-06-01', 'timeLag': 'NOT APPLICABLE', 'accrualPeriodicity': 'STATIC'}}",2020-07-30T12:03:44Z,"[{'observedNode': 'FINDINGS', 'observationDate': '31/10/2020', 'measuredProperty': 'Count', 'measuredValue': '1'}]",5.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-08-19T11:06:45Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Deaths – National Records Scotland', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE', 'identifier': '607db9c4e1f9d3704d570d1f'}, 'keywords': ['Deaths', 'NRS', 'HIC', 'SCOTLAND'], 'contactPoint': 'hicsupport@dundee.ac.uk', 'abstract': 'Cause of death data from National Records Scotland (NRS, formerly General Registrar Office (GRO) and contains data relating to the causes of death of patients.'}",5362cfea-d554-43ba-916a-4460da39cc0c,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150', 'followup': 'UNKNOWN', 'spatial': ['https://www.geonames.org/2638360/scotland.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '2fcd3d4f-773b-4adc-a8cf-c80841c92d51'},"{'description': 'This data can be used to identify causes of death.  As this data does not originate from the health service, it is not originally CHI seeded.  From approx. 2015 onwards, the data was supplied with CHI number, though only covering around 95% of the data.\nPrior to 2015, and for those records supplied with no CHI an automated mechanism which identifies over 90% of the records is used to CHI seed.  This is further augmented by manual data entry.\n\nDue to these procedures, this dataset does not necessarily represent all deceased persons.', 'isPartOf': 'University of Dundee Health Informatics Centre'}",2fcd3d4f-773b-4adc-a8cf-c80841c92d51,https://web.www.healthdatagateway.org/dataset/2fcd3d4f-773b-4adc-a8cf-c80841c92d51,"{'formatAndStandards': {'language': ['en'], 'format': ['database'], 'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL']}, 'access': {'dataController': 'National Records Scotland', 'accessRights': ['https://www.dundee.ac.uk/hic/governanceservice/'], 'deliveryLeadTime': 'OTHER', 'dataProcessor': 'University of Dundee, Health Informatics Centre', 'jurisdiction': ['GB-SCT'], 'accessService': 'HIC has implemented a remote-access Trusted Research Environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details are available via the following link:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/'}, 'usage': {'resourceCreator': ['National Records Scotland'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['DISCLOSURE CONTROL']}}","{'temporal': {'timeLag': '1-2 WEEKS', 'distributionReleaseDate': '2021-09-27', 'accrualPeriodicity': 'MONTHLY', 'startDate': '1988-07-06'}, 'origin': {'source': ['OTHER'], 'collectionSituation': ['OTHER'], 'purpose': ['ADMINISTRATIVE']}}",2021-11-19T12:47:42Z,"[{'observedNode': 'PERSONS', 'measuredValue': '734000', 'disambiguatingDescription': '734,000 people in the dataset', 'observationDate': '27/09/2021', 'measuredProperty': 'COUNT'}, {'observedNode': 'EVENTS', 'measuredValue': '766000', 'disambiguatingDescription': '766000 events in the dataset', 'observationDate': '10/11/2021', 'measuredProperty': 'Count'}]",4.0.0,,2021-11-19T12:47:42Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 64, 'structuralMetadata.columnName': 64, 'structuralMetadata.columnDescription': 64, 'structuralMetadata.dataType': 64, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'd6222c77-1f3d-4a03-8499-98a3b07b424d', 'description': 'This dataset is from National Records Scotland (NRS, formerly General Registrar Office (GRO) and contains data relating to the causes of death of patients.   This data should be considered as supplemental data, and used to identify causes of death.  As this data does not originate from the health service, is is not originally CHI seeded.    This procedure is carried out using an automated mechanism which identifies over 90% of the records.  This is further augmented by manual data entry.  this dataset therefore data does not necessarily represent all deceased persons.', 'name': 'Deaths GRO - NRS', 'dataElementsCount': 64, 'dataElements': '9457844f-be79-4e35-8ff8-ad842ed4ffdb, 30c91243-547c-4e8d-bed3-45c2f070ebce, 0724bb87-6b72-4cc9-9d82-7c6342996b0a, 1ee216db-53ab-4f20-8422-b865fca5512d, dd50e3b1-ee9b-44a3-911b-89f17c266b3f, 12dc5680-a3c9-4cf0-b722-1f0a7e7a1d96, a96fafc5-8266-4718-bd18-fbf738d475c8, c53cb65e-f119-4c6c-b1d0-d519822a92ad, a0c33423-e0d8-4c6d-9bc4-a61ff874605e, 95cd4123-cf9a-4adc-8b93-d0537583bb3a, 0570e11b-769b-41d8-8cc5-183166348972, 0c9ade66-c7e3-43a5-acf7-d02d5e457614, f5f49b0c-8271-4951-80ba-33cdee63c1ed, 0da3b11f-9677-4bbc-af83-405f467f60f2, 1c74e21e-eda0-430c-9a8b-1d7b19e9b8f5, 422d0def-2266-4c40-aa16-68e0cc9f7bfb, 989c15a6-44e9-4067-af9d-d30f23543533, b697f25c-0b5c-4612-8941-36f4199fd6d8, 5fedfa70-6378-4c4e-b8bf-673c9a32e2ed, daf0e705-bc38-476e-bf6e-daf2b9579e14, dfec5f6e-b415-4797-ae6c-3a3bea0daf13, 5456aa86-d9da-4672-aaee-1597cca643ed, b5d21eb3-94e3-4e1c-bd5b-152c39f05214, 65649e8e-9131-4c0e-a925-3efa52421c73, f92cea37-21f7-453c-903c-5d417b7ab754, 596e6259-eaf3-4f8a-9051-c9ed149bfb56, bbe977ef-d574-484f-859c-c1d2bb36f45e, 60fa8841-d17b-4397-8d21-38c75c215cbb, b62e7ad9-20ba-4d5e-a929-8b20a672fad1, a5ebd451-8bb9-49b6-a5c1-348c7aa5804d, eedb967a-e94b-44e9-8a7c-858b9d5bc983, 09de0cdc-49cf-4ba5-b74b-3d3eb0b8ffed, 42163f6b-873d-4d0d-ae58-06d229f11a34, af2bf21e-0605-4532-9f11-7750f3ba6387, 9cc901fc-6a1b-494d-9cc5-4b534fda7789, 2ab13773-d121-4c39-9a21-40be4845b5f2, e449c333-f66e-42af-9117-aa297d8d68aa, cad668f5-4c2e-4f50-bb67-5b87aa8abb5e, 58613557-cfd6-4f25-a18a-dd9eb4941702, 24668612-86a5-4abe-ba09-3f82db8e26bb, e458f4ce-1ea5-419c-bfa7-ae0b4279393b, 78fe86ff-24e0-4166-adb8-3c3a79a91b52, df74322e-6a78-454a-8be9-b85e747302b7, 47e487da-f09a-47da-8b87-87e34d194176, 1d6ee901-15d6-4800-8ee5-da2d104c697d, 6ee6b814-c24c-4c86-8c8e-1793f4cd2c6f, 8bd136ca-89d5-4776-8a25-9a36c0ec698d, 52c02b21-cab6-41ec-9149-489d7db8caa1, 5f3fa638-8ec0-4026-8524-323a6432fc34, e6693c61-5086-4e59-81f0-1eef56955a20, 65e0df02-c43a-4ed2-b5f6-a3c9bfa195a5, 98814fab-1abf-47c3-a3ed-dccf283fcc25, dab146d4-c244-41d0-9c2c-a75c935985db, 66f579fa-8ef6-4390-843e-8f419e6d1a5c, 6ce84bd9-6cd1-4d45-b68e-dc1e8a205a80, cb11e1ae-8109-4080-a138-caa8a85817e7, ab66d715-2ef3-4046-a6b6-dad35e2f7f09, fb6f7859-9b97-4083-85d9-116b0e15698f, fc7ed9c0-f121-4f43-af39-6aaba1c97473, 4a9d7e81-f420-4058-a21e-e346a7d19983, 3c54b08c-f877-42d1-9539-d19ee4584b02, 977fa156-d015-479a-b81e-5242a89f8026, 39a7ab81-2e5e-4c0b-88fd-53916e491a0a, ffd42ad4-3d44-4687-9c82-83589c0db4af'}]}"
"{'title': 'CDE Patient Demographics', 'abstract': ""Locally defined dataset containing a full list of patient registrations held within the Trust's EHR system. Details extend to include GP details and patient identifers."", 'publisher': {'name': 'BARTS HEALTH', 'memberOf': 'ALLIANCE', 'identifier': '607db9c2e1f9d3704d570cde'}, 'keywords': ['COPD'], 'contactPoint': 'BartsHealth.ResearchDataRequest@nhs.net'}",209d7fae-0521-4d07-8a4d-e0843a46a107,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '2684706f-1d43-4263-99b7-b54279614c76', '4.0.0': '3008933e-6fc1-415c-b2c6-ebb12e8f3b99', '1.0.0': '72f17a03-b608-4f74-9be3-0bfe57c51ddc', '0.0.1': '676bbee3-9368-48c4-b3f9-ef876c15ec81', '3.0.0': '10b10bc5-ce28-4cc0-b006-2a0e6d03a72d', 'latest': '3008933e-6fc1-415c-b2c6-ebb12e8f3b99'}","{'description': ""Locally defined dataset containing a full list of patient registrations held within the Trust's EHR system. Details extend to include GP details and patient identifers."", 'isPartOf': 'CDE'}",3008933e-6fc1-415c-b2c6-ebb12e8f3b99,https://web.www.healthdatagateway.org/dataset/3008933e-6fc1-415c-b2c6-ebb12e8f3b99,"{'access': {'accessRights': ['Available locally within Trust corporate Data Warehouse System and authorised access by Trust staff only.\nDataset is also available within Discovery.'], 'deliveryLeadTime': 'OTHER'}}",,2020-01-13T16:54:41Z,[{}],4.0.0,,2022-01-27T13:43:17Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 9, 'structuralMetadata.tableName': 9, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 148, 'structuralMetadata.columnName': 148, 'structuralMetadata.columnDescription': 148, 'structuralMetadata.dataType': 148, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '5ab91f46-1007-4829-9dd7-379861404774', 'name': 'dbo.PI_CDE_PERSON_PATIENT', 'dataElementsCount': 20, 'dataElements': 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"{'title': 'Covid-19 UK Non-hospital Antigen Testing Results', 'abstract': 'COVID-19 UK Non-hospital Antigen Testing Results (Pillar 2) data is required by NHS Digital to support COVID-19 requests for linkage, analysis and dissemination.', 'publisher': {'name': 'NHS DIGITAL', 'identifier': '5f86cd34980f41c6f02261f4', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'enquiries@nhsdigital.nhs.uk', 'keywords': ['DIGITRIALS', 'Pillar 2', 'Key Worker', 'Scotland', 'England', 'Wales', 'Northern Ireland', 'National Core Study', 'CO-CONNECT', 'COVID-19', 'NCS']}",f06ec631-77d0-4b12-a21f-f11e7af49ba5,"{'spatial': 'http://www.geonames.org/6269131/england.html', 'typicalAgeRange': '0-150', 'followup': 'OTHER', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'NOT APPLICABLE'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '3fb045f9-6295-4406-b782-3c4133c278a7', '7.0.0': '30524e8c-c92c-4f01-84bd-c5593ada3e43', '1.0.0': '401bfb5b-b66b-49e7-931a-280fd6694bbf', '0.0.3': '744ab66e-8430-475a-a385-451347d9fc8a', '4.0.0': 'e06a31dd-b139-49db-851a-256a964c95f0', '5.0.0': '7e71ee33-f029-40a1-8db0-e13467aaf2ac', '6.0.0': '52a9c00b-b66c-48c6-84bb-3558faad7618', 'latest': '30524e8c-c92c-4f01-84bd-c5593ada3e43'}","{'description': ""COVID-19 UK Non-hospital Antigen Testing Results (Pillar 2) data is required by NHS Digital to support COVID-19 requests for linkage, analysis and dissemination to other organisations. These requests are often urgent and in support of direct care and service monitoring, planning and research. These are all functions that NHS Digital have been asked to deliver as a national resource in response to COVID-19, through the recent direction from the SoS.\n\nAntigen test results relate to subjects who have had swab testing in the community at drive through test centres, walk in centres, home kits returned by posts, care homes, prisons etc.\n\nThe dataset is composed of:\n• Patient identity and contact details\n• Testing centre and laboratory details\n• Test results\n• Test kit types (manufacturer)\n\nThe data cover the UK and is collected under SoS Covid Direction under s254 of the HSCA 2012 and s255 requests from devolved administrations for Scotland, Northern Ireland and Wales. This is an expansion of the original scope which only included data for welsh patients tested in other parts of the UK.\n\nData is currently available for dissemination through the NHS Digital DARS service for England. If your extract is to include data from the devolved administrations their approval will also be required.\n\nTimescales for dissemination can be found under 'Our Service Levels' at the following link: https://digital.nhs.uk/services/data-access-request-service-dars/data-access-request-service-dars-process"", 'associatedMedia': ['https://digital.nhs.uk/dashboards/pillar-2-contain/user-guide', 'https://digital.nhs.uk/coronavirus/coronavirus-covid-19-response-information-governance-hub', 'https://digital.nhs.uk/coronavirus/coronavirus-covid-19-response-information-governance-hub/coronavirus-covid-19-response-transparency-notice'], 'isPartOf': 'NOT APPLICABLE'}",30524e8c-c92c-4f01-84bd-c5593ada3e43,https://web.www.healthdatagateway.org/dataset/30524e8c-c92c-4f01-84bd-c5593ada3e43,"{'access': {'accessService': 'Once your DARS application has been approved, data will be made available either by secure file transfer or through the Data Access Environment (DAE). \n\nSecure file transfer: 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"{'title': 'General Acute Inpatient and Day Case - Scottish Morbidity Record (SMR01)', 'keywords': ['Inpatients ', 'NCS', 'Day cases', 'Scotland', 'CO-CONNECT', 'National Core Study', 'COVID-19'], 'publisher': {'identifier': '5f8992a97150a1b050be0712', 'name': 'PUBLIC HEALTH SCOTLAND', 'memberOf': 'ALLIANCE'}, 'abstract': 'The General / Acute and Inpatient Day Case dataset (SMR01) collects episode level data on hospital inpatient and day case discharges from acute specialities from hospitals in Scotland.', 'contactPoint': 'phs.edris@phs.scot'}",98cda353-0011-45b2-80ca-4ed24cd084bf,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'https://www.geonames.org/2638360/scotland.html', 'typicalAgeRange': '0-150', 'pathway': 'All of secondary care in relation to general acute inpatient and day cases.', 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '389a22c5-444b-4815-8cdb-71466cec61c3', '6.0.0': '31503f67-c546-4223-aec6-9255263e8b66', '1.0.0': 'd5de7f84-f8ef-4eb7-bdf2-3e3f81e8aab4', '2.0.0': '26f8bf57-e074-41d0-80aa-67a677604607', '3.0.0': '110008b0-4c70-4e84-bce0-189d3601e305', '4.0.0': '2537007c-9e9e-4441-a0d1-59fa400566c5', '5.0.0': '6c5c67d5-b7f6-4126-ac5c-be2bf45eb1cc', 'latest': '31503f67-c546-4223-aec6-9255263e8b66'}","{'description': 'The dataset contains patient identifiers such as name, date of birth, Community Health Index number, NHS number, postcode and ethnicity and episode management data. 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(including contracted NHS beds in non-NHS institutions).\nInpatients and day cases change consultant for medical reasons within the same specialty when :\nAn inpatient transfers as an Inpatient to the care of a different consultant for medical reasons in the same specialty in the same hospital.\nAn inpatient becomes a Day Case in the same specialty under a different consultant for medical reasons during the inpatient stay.\nA day case transfers to become an Inpatient under the care of a different consultant in the same specialty for medical reasons (except when the day case episode is during an inpatient stay and the patient is transferring back to the original consultant).\nA day case transfers back to resume an Inpatient stay in the same specialty but does NOT transfer back to the original consultant for medical reasons.\nInpatients move into and/or out of one of the valid significant facilities.\nInpatients return to hospital having been on pass for more than 5 days.\nNote: Items in bold denote the patient type of the further SMR record generated by the transfers described in these categories.', 'name': 'General Acute Inpatients/Day Cases', 'dataElementsCount': 2, 'dataElements': 'f368585b-4433-43cd-8c71-fb9c15461a9a, de38014a-bef7-4431-8c4a-36b0e39d9f88'}]}"
"{'title': ""Crohn's Disease Metabolic Syndrome & Related Disease Outcomes"", 'keywords': ['Metabolic Syndrome', 'obesity', 'fibrosis', ""crohn's disease"", 'Inflammatory Bowel Disease', 'related disease outcomes'], 'publisher': {'memberOf': 'ALLIANCE', 'contactPoint': 'Sam.Rising@nottingham.ac.uk', 'name': 'NIHR Nottingham Biomedical Research Centre', 'identifier': '6214e1ff39af25bbdff24338'}, 'contactPoint': 'mszgwm@exmail.nottingham.ac.uk', 'abstract': ""NIHR Bioresource DAA063: \nThis data base contains numerical  data in Crohn's disease linking metabolic syndrome to related disease outcomes.""}",07a0d0ee-93a0-49ab-801d-a9322875f2cd,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '31b487d4-7beb-4eed-82bb-9ebbb8b9c066'},"{'description': ""NIHR Bioresource DAA063: \nThis data base contains numerical  data in Crohn's disease linking metabolic syndrome to related disease outcomes.""}",31b487d4-7beb-4eed-82bb-9ebbb8b9c066,https://web.www.healthdatagateway.org/dataset/31b487d4-7beb-4eed-82bb-9ebbb8b9c066,"{'access': {'jurisdiction': ['GB-ENG'], 'accessRights': ['In Progress'], 'dataController': 'Gordon Moran'}, 'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL'], 'format': ['text'], 'conformsTo': ['LOCAL']}, 'usage': {'investigations': ['']}}","{'temporal': {'endDate': '2021-12-31', 'startDate': '2016-01-01', 'accrualPeriodicity': 'STATIC', 'timeLag': 'NOT APPLICABLE'}}",2022-04-29T13:51:22Z,"[{'observedNode': 'EVENTS', 'measuredValue': '1000', 'disambiguatingDescription': 'Clinical Data', 'observationDate': '10/11/2021', 'measuredProperty': 'Count'}]",1.0.0,,2022-04-29T13:51:22Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'A synthetic dataset of 15,000 ""patients"" with Community Acquired Pneumonia (CAP)', 'publisher': {'name': 'PIONEER', 'memberOf': 'HUB', 'identifier': '607db9c5e1f9d3704d570d5f'}, 'contactPoint': 'PIONEER@UHB.NHS.UK', 'abstract': 'CAP is common, has variable outcomes and a complex management pathway. Hospital-based decision support algorithms would be highly valuable. This is a diverse and realistic synthetic dataset of 15,000 “CAP patients” to facilitate algorithm development.', 'keywords': ['Synthetic data', 'age', 'Ethnicity', 'socioeconomic data', 'multi-morbidity', 'comorbidity', 'severity', 'CURB-65', 'Oxygenation', 'pulse', 'oxygen saturations', 'blood pressure', 'hospital length of stay', 'ward admission', 'ITU ', 'treatments', 'antibiotics', 'Outcomes', 'Mortality', 'morbidity', 'machine learning', 'community acquired pneumonia', 'offline reinforcement learning', 'Critical Care', 'CAP', ' Artificial Intelligence', 'Healthcare', 'Algorithm', 'diagnosis', 'Hospitalisation', 'smoking status']}",a6575d98-0b2b-4c06-b9c6-88c1729257b9,"{'followup': '0 - 6 MONTHS', 'typicalAgeRange': '18-110', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['United Kingdom,England,West Midlands'], 'pathway': 'Data is representative of the multi-ethnicity population within the West Midlands (42% non white). Data includes all patients admitted during this timeframe, with National data Opt Outs applied, and therefore is representative of admissions to secondary care. Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '645cb77f-30e7-42be-a07d-2384cee4966e', '2.0.0': '31b7387f-5760-4c82-b320-051b3f18180d', 'latest': '31b7387f-5760-4c82-b320-051b3f18180d'}","{'description': 'Community Acquired Pneumonia (CAP) is the leading cause of infectious death and the third leading cause of death globally. Disease severity and outcomes are highly variable, dependent on host factors (such as age, smoking history, frailty and comorbidities), microbial factors (the causative organism) and what treatments are given. Clinical decision pathways are complex and despite guidelines, there is significant national variability in how guidelines are adhered to and patient outcomes.\n\nFor clinicians treating pneumonia in the hospital setting, care of these patients can be challenging. Key decisions include the type of antibiotics (oral or intravenous), the appropriate place of care (home, hospital or intensive care), and when it is appropriate to stop antibiotics. Decision support tools to help inform clinical management would be highly valuable to the clinical community.\n\nThis dataset is synthetic, formed from statistical modelling using real patient data, and represents a population with significant diversity in terms of patient demography, socio-economic status, CAP severity, treatments and outcomes. It can be used to develop code for deployment on real data, train data analysts and increase familiarity with this disease and its management.\n\nPIONEER geography: The West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix. \n\nEHR. UHB is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.  This synthetic dataset has been modelled to reflect data collected from this EHR.\n\nScope: A synthetic dataset which has been statistically modelled on all hospitalised patients admitted to UHB  with Community Acquired Pneumonia. The dataset includes highly granular patient demographics & co-morbidities taken from ICD-10 & SNOMED-CT codes. Serial, structured data pertaining to process of care including timings, admissions, escalation of care to ITU, discharge outcomes, physiology readings (heart rate, blood pressure, AVPU score and others), blood results and drug prescribing and administration.\n\nAvailable supplementary data: Matched synthetic controls; ambulance, OMOP data, real patient CAP data.\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.', 'isPartOf': 'NOT APPLICABLE'}",31b7387f-5760-4c82-b320-051b3f18180d,https://web.www.healthdatagateway.org/dataset/31b7387f-5760-4c82-b320-051b3f18180d,"{'access': {'deliveryLeadTime': '1-2 MONTHS', 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'jurisdiction': ['GB-ENG'], 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/'], 'dataProcessor': 'NOT APPLICABLE'}, 'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'COMMERCIAL RESEARCH USE'], 'resourceCreator': ['Data is representative of the multi-ethnicity population within the West Midlands (42% non white). Data includes all patients admitted during this timeframe, with National data Opt Outs applied, and therefore is representative of admissions to secondary care. Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data. '], 'investigations': ['https://www.pioneerdatahub.co.uk/project-summaries/a-study-in-to-the-use-of-machine-learning-techniques-in-supporting-clinical-decision-making-in-community-acquired-pneumonia/']}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'format': ['CSV'], 'vocabularyEncodingScheme': ['SNOMED CT', 'ICD10']}}","{'origin': {'source': ['OTHER'], 'collectionSituation': ['OTHER'], 'purpose': ['STUDY']}, 'temporal': {'endDate': '2021-06-08', 'accrualPeriodicity': 'STATIC', 'timeLag': 'OTHER', 'startDate': '2018-01-01', 'distributionReleaseDate': '2021-12-09'}}",2021-12-20T13:04:42Z,"[{'observedNode': 'EVENTS', 'measuredValue': '15000', 'disambiguatingDescription': '15,000 synthetic admissions between 01/01/2018 and 08/06/2021  ', 'observationDate': '12/09/2021', 'measuredProperty': 'Count'}]",2.0.0,{'derivation': ['Not Available']},2022-06-14T16:56:16Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 5, 'structuralMetadata.tableName': 5, 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"{'title': 'Webex Cohort', 'keywords': ['exercise', 'Pain', 'Pain Hub', 'Alleviate'], 'publisher': {'identifier': '607db9c6e1f9d3704d570d93', 'name': 'UNIVERSITY OF NOTTINGHAM', 'memberOf': 'ALLIANCE'}, 'abstract': 'Randomized controlled trial of exercise vs standard care in patients with radiographic and clinical knee OA.', 'contactPoint': 'mszav@exmail.nottingham.ac.uk'}",9254f941-db57-4a97-922e-880b84855a21,{'spatial': ['https://www.geonames.org/6269131/england.html']},"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'e22f9ad4-a762-4fe9-9a83-8126dc39e125', '2.0.0': '320d4c1e-df08-4eaa-ab9f-bd342d1799a0', 'latest': '320d4c1e-df08-4eaa-ab9f-bd342d1799a0'}","{'description': ""Knee osteoarthritis (OA) is the most common joint disease worldwide. As of today, there are no disease-modifying drugs, but there is evidence that muscle strengthening exercises can substantially reduce pain and improve function in this disorder, and one very well tested physiotherapy protocol is the 'Better Management of Patients with Osteoarthritis' developed in Sweden. Given the high prevalence of knee OA, a potentially cost-effective, digitally delivered approach to treat knee OA should be trialled. This study aims to explore the benefits of iBEAT-OA (Internet-Based Exercise programme Aimed at Treating knee Osteoarthritis) in modulating pain, function and other health-related outcomes in individuals with knee OA.\n\nA randomised controlled trial was designed to evaluate the efficacy of a web-based exercise programme in a population with knee OA compared with standard community care provided by general practitioners (GPs) in the UK. We anticipate recruiting participants into equal groups. The intervention group (n=67) will exercise for 20-30 min daily for six consecutive weeks, whereas the control group (n=67) will follow GP-recommended routine care. The participants will be assessed using a Numerical Rating Scale, the Western Ontario and McMaster Universities Osteoarthritis Index, the Arthritis Research UK Musculoskeletal Health Questionnaire, the Pittsburgh Sleep Quality Index, 30 s sit to stand test, timed up and go test, quantitative sensory testing, musculoskeletal ultrasound scan, muscle thickness assessment of the vastus lateralis, and quadriceps muscles force generation during an isokinetic maximum voluntary contraction (MVC). Samples of urine, blood, faeces and synovial fluid will be collected to establish biomarkers associated with changes in pain and sleep patterns in individuals affected with knee OA. Standard parametric regression methods will be used for statistical analysis."", 'associatedMedia': ['https://pubmed.ncbi.nlm.nih.gov/31662373/', 'https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2776721?utm_source=For_The_Media&utm_medium=referral&utm_campaign=ftm_links&utm_term=022321']}",320d4c1e-df08-4eaa-ab9f-bd342d1799a0,https://web.www.healthdatagateway.org/dataset/320d4c1e-df08-4eaa-ab9f-bd342d1799a0,"{'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'language': ['en'], 'format': ['csv']}, 'access': {'jurisdiction': ['GB-ENG'], 'dataController': 'University of Nottingham', 'accessRights': ['http://localhost']}}","{'temporal': {'startDate': '2018-06-01', 'accrualPeriodicity': 'STATIC', 'timeLag': 'NOT APPLICABLE'}}",2021-09-27T15:05:08Z,"[{'observedNode': 'PERSONS', 'measuredValue': '104', 'observationDate': '27/09/2021', 'measuredProperty': 'Count'}]",2.0.0,,2021-10-11T16:31:19Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'A dataset of hospitalised patients with Sarcoma', 'publisher': {'identifier': '607db9c5e1f9d3704d570d5f', 'memberOf': 'HUB', 'name': 'PIONEER'}, 'keywords': ['sarcoma', 'angiosarcoma', 'Bone sarcoma', 'soft tissue', 'diagnosis', 'mesolthelioma', 'blood biomarkers', 'Co-Morbidity', 'Cancer', 'Prescriptions', 'physiology', 'Radiology', 'lymphocyte', 'platelets'], 'abstract': 'Cancer diagnoses before and after hospitalisation. This dataset includes 907 patients from 2004 to present, including granular ethnicity, multi morbidity, serial physiology, blood biomarkers, intervention and outcome data.', 'contactPoint': 'PIONEER@UHB.NHS.UK'}",6dcd9c0e-d5f8-46f9-9d4a-335943e46c21,"{'typicalAgeRange': '16-96', 'followup': 'OTHER', 'spatial': ['United Kingdom,England,West Midlands'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Data is representative of the multi-ethnicity population within the West Midlands (42% non white). Data includes all patients admitted during this timeframe, with National data Opt Outs applied, and therefore is representative of admissions to secondary care. Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '32639ab2-f23c-4d2b-96f8-c2139d50563b'},"{'description': 'Background \n\nSarcomas are uncommon cancers that can affect any part of the body. There are many different types of sarcoma and subtypes can be grouped into soft tissue or bone sarcomas. About 15 people are diagnosed every day in the UK. 3 in every 200 people with cancer in the UK have sarcoma. \n\nA highly granular dataset with a confirmed sarcoma event including hospital presentation, serial physiology, demography, treatment prescribed and administered, prescribed and administered drugs. The infographic includes data from 27/12/2004 to 31/12/2021 but data is available from the past 10 years+.  \n\nPIONEER geography: The West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix.  \n\nEHR. UHB is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”. \n\nScope: All hospitalised patients from 2004 onwards, curated to focus on Sarcoma. Longitudinal & individually linked, so that the preceding & subsequent health journey can be mapped & healthcare utilisation prior to & after admission understood. The dataset includes highly granular patient demographics & co-morbidities taken from ICD-10 & SNOMED-CT codes. Serial, structured data pertaining to acute care process (timings, staff grades, specialty review, wards and triage). Along with presenting complaints, outpatients admissions, microbiology results, referrals, procedures, therapies, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations and others), and all blood results (urea, albumin, platelets, white blood cells and others). Includes all prescribed & administered treatments and all outcomes.  Linked images are also available (radiographs, CT scans, MRI). \n\nAvailable supplementary data: Matched controls; ambulance, OMOP data, synthetic data. \n\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.'}",32639ab2-f23c-4d2b-96f8-c2139d50563b,https://web.www.healthdatagateway.org/dataset/32639ab2-f23c-4d2b-96f8-c2139d50563b,"{'formatAndStandards': {'vocabularyEncodingScheme': ['SNOMED CT', 'OPCS4', 'ICD10'], 'format': ['SQL'], 'conformsTo': ['LOCAL'], 'language': ['en']}, 'access': {'deliveryLeadTime': '1-2 MONTHS', 'jurisdiction': ['GB-ENG'], 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'dataProcessor': 'NOT APPLICABLE', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS']}}","{'origin': {'purpose': ['CARE'], 'source': ['EPR'], 'collectionSituation': ['ACCIDENT AND EMERGENCY', 'IN-PATIENTS']}, 'temporal': {'distributionReleaseDate': '2022-01-20', 'startDate': '2004-12-27', 'accrualPeriodicity': 'QUARTERLY', 'endDate': '2021-12-31', 'timeLag': 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Includes multiple aspects of patients' care including time to orthogeriatric assessment, time to surgery, assessment of delirium and discharge destination."", 'keywords': ['Audit', 'FFFAP', 'Falls', 'Fragility', 'Hip Fracture', 'Database', 'Clinical Dataset']}",e06b951b-e9d8-4a2c-a51f-1d819f669205,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html'], 'typicalAgeRange': '60-150', 'followup': '0 - 6 MONTHS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '32f2d582-3b99-44a8-ac30-0a0819fc2523'},"{'description': ""This continuously ascertained record level dataset contains information on all patients admitted to hospital with hip fractures in England, Wales and Northern Ireland. 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"{'title': 'Wales Asthma Observatory', 'contactPoint': 'breathe.saildatabank@swansea.ac.uk', 'doiName': 'In Progress', 'abstract': 'WAO is a derived-dataset based on information available in the SAIL Databank including an e-cohort of patients with a history of asthma in Wales.', 'keywords': ['WAO', 'ASTHMA', 'BREATHE', 'ELECTRONIC HEALTH RECORDS', 'WALES'], 'publisher': {'name': 'BREATHE', 'contactPoint': 'breathe.saildatabank@swansea.ac.uk', 'memberOf': 'HUB'}}",8604bcdc-235a-4c70-b29b-1617396815e6,"{'spatial': 'Wales', 'followup': '> 10 YEARS', 'pathway': 'The dataset cover asthma outcomes and care captured across several levels of care, including primary, emergency, and secondary care, in addition to asthma-related death.', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': 'b7420153-da8d-46d1-9753-8974d06ea646', '5.0.0': '333d92ca-3a32-41bd-8b16-96aee2dc85b1', '4.0.0': '6439bf82-d0b4-4d7f-b7d9-f1e716b12df5', '3.0.0': 'fe9bf0d9-3212-4120-96a6-d455f92dd192', '0.0.1': '3a8fa41c-d73a-43a7-a60a-0cc2a90bc83f', '1.0.0': '8114ed42-4d9c-4e8a-857b-ee7bc41e76e2', 'latest': '333d92ca-3a32-41bd-8b16-96aee2dc85b1'}","{'description': ""The dataset currently contains (1) a table of time periods (defined with start and end dates) during which a patient had any diagnosis of asthma; (2) and table of time periods for asthma severity level (based on prescriptions), asthma exacerbations, asthma-related hospital episodes, and asthma control; and (3) a table for other asthma-related data represented as events (e.g., lung function, blood tests, and A&E visit).\n\nIncludes an e-cohort of most people with a history of asthma in Wales, derived from the SAIL Databank's core datasets. Individuals are identified from the Welsh Longitudinal General Practice (WLGP) using several case definitions (e.g., having ever GP asthma diagnosis, asthma treatment in the last 12 months, or both). Data for each patient include essential research-ready asthma-related variables derived from primary and secondary care data, such as asthma\xa0treatment step, asthma severity, asthma exacerbations, and asthma-related death. The case definitions and some clinical variables are represented as clinical states.\xa0Additional case definitions and variables are actively being added. The WAO dataset is intended\xa0to support a wide range of cross-sectional and longitudinal epidemiological asthma studies as well as asthma surveillance, service planning, and health policy."", 'isPartOf': 'NOT APPLICABLE'}",333d92ca-3a32-41bd-8b16-96aee2dc85b1,https://web.www.healthdatagateway.org/dataset/333d92ca-3a32-41bd-8b16-96aee2dc85b1,"{'formatAndStandards': {'conformsTo': 'LOCAL', 'language': 'en', 'format': ['SQL'], 'vocabularyEncodingScheme': ['READ', 'ICD10']}, 'access': {'dataProcessor': 'BREATHE', 'deliveryLeadTime': 'VARIABLE', 'dataController': 'BREATHE', 'accessService': 'SAIL Gateway\nhttps://saildatabank.com', 'jurisdiction': 'GB', 'accessRequestCost': 'Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.', 'accessRights': ['https://saildatabank.com/application-process/']}, 'usage': {'dataUseRequirements': ['NOT FOR PROFIT USE', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE'], 'isReferencedBy': [' Alsallakh, MA., et al. ""Association of socioeconomic deprivation with asthma care, outcomes, and deaths in Wales: A 5-year national linked primary and secondary care cohort study."" PLoS Medicine 18.2 (2021): e1003497.'], 'resourceCreator': 'Wales Asthma Observatory', 'dataUseLimitation': 'GENERAL RESEARCH USE'}}","{'origin': {'purpose': 'DISEASE REGISTRY', 'collectionSituation': ['CLINIC', 'PRIMARY CARE', 'ACCIDENT AND EMERGENCY', 'OUTPATIENTS', 'IN-PATIENTS'], 'source': 'EPR'}, 'temporal': {'endDate': '2020-06-30', 'accrualPeriodicity': 'ANNUAL', 'distributionReleaseDate': '2020-06-30', 'startDate': '1990-01-01', 'timeLag': '6 MONTHS PLUS'}}",2020-01-13T15:48:22Z,,5.0.0,"{'qualifiedRelation': ['SAIL linked health records - WLGP, PEDW, EDDS, OPD, ADDE, WDS'], 'derivation': ['Not Available']}",2021-03-01T18:20:22Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 4, 'structuralMetadata.columnName': 4, 'structuralMetadata.columnDescription': 4, 'structuralMetadata.dataType': 4, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'c0cb4969-4ac3-42ba-aa12-404a5e4f16ac', 'description': 'Contains the possible clinical states which are used to characterise the cohort of asthma patients in the Wales Asthma Observatory.', 'name': 'WAO_STATES', 'dataElementsCount': 4, 'dataElements': '98a21c13-735f-4a38-9778-e71084a254dd, 2ad0a72a-7a21-44e3-b7c4-2269cc41e00b, 474a0e6e-fa6e-46a0-a712-2a970a340ce0, 21fb0a46-aeca-4b39-abdb-de6727f8795d'}]}"
"{'title': 'National Bowel Cancer Audit -  Organisational Survey dataset', 'keywords': ['Audit', 'NBOCA', 'Bowel', 'Cancer', 'Organisational Survey', 'Colon'], 'publisher': {'identifier': '607db9c4e1f9d3704d570d23', 'memberOf': 'ALLIANCE', 'name': 'HQIP'}, 'abstract': 'Survey completed by consultant surgeons at each hospital in England and Wales on the availability of a range of services for patients with bowel cancer including palliative care, oncology, diagnostics, enhanced recovery and specialist surgical services.', 'contactPoint': 'DataSharing@hqip.org.uk'}",4e232aa8-ad56-4d82-adcc-cd06715a5c45,"{'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '18-150', 'followup': 'OTHER', 'pathway': 'N/A - this is a survey of services'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'be8aba13-fdad-4d66-832c-a7878d01b801', '4.0.0': '3373aa9c-219e-4036-91a5-78bb98e8a7f5', '1.0.0': 'dfad99c9-6c2c-4ab7-83e7-0c0bb9a692fa', '2.0.0': 'de19b3ea-2600-4472-85e8-628e7beff76e', '3.0.0': '1603b4e2-6465-4636-b7d7-1f8c6abbc717', 'latest': '3373aa9c-219e-4036-91a5-78bb98e8a7f5'}","{'description': 'A survey completed by lead consultant surgeons at each hospital in England and Wales detailing the availability of a wide range of services for patients with bowel cancer including palliative care, oncology, diagnostics, enhanced recovery and specialist surgical services.', 'associatedMedia': ['https://www.hqip.org.uk/a-z-of-nca/national-bowel-cancer-audit/#.YL8iaPlKiUk'], 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",3373aa9c-219e-4036-91a5-78bb98e8a7f5,https://web.www.healthdatagateway.org/dataset/3373aa9c-219e-4036-91a5-78bb98e8a7f5,"{'access': {'dataProcessor': 'Royal College of Surgeons and NHS Digital', 'dataController': 'Healthcare Quality Improvement Partnerhsip jointly with NHS England', 'accessRights': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'accessRequestCost': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'jurisdiction': ['GB-EAW'], 'deliveryLeadTime': 'VARIABLE'}, 'usage': {'resourceCreator': ['Data has been provided by the Healthcare Quality Improvement Partnership from the National Bowel Cancer Audit '], 'dataUseLimitation': ['NO RESTRICTION'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'isReferencedBy': ['https://www.nboca.org.uk/reports/nboca-peer-reviewed-publications/']}, 'formatAndStandards': {'language': ['en'], 'format': ['other'], 'vocabularyEncodingScheme': ['LOCAL', 'ICD10'], 'conformsTo': ['LOCAL']}}","{'origin': {'purpose': ['AUDIT'], 'source': ['ELECTRONIC SURVEY'], 'collectionSituation': ['IN-PATIENTS']}, 'temporal': {'timeLag': 'VARIABLE', 'startDate': '1997-01-01', 'accrualPeriodicity': 'ANNUAL'}}",2020-01-13T14:55:18Z,"[{'observedNode': 'FINDINGS', 'measuredValue': 154, 'disambiguatingDescription': 'Number of Trusts and Health Boards completing the survey each year', 'observationDate': '01/01/2021', 'measuredProperty': 'Count'}]",4.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Data linked with that from other custodians may be available, but the release of linked data will be subject to the separate permission of all relevant data controllers']}",2021-11-12T16:09:31Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'TRICON8B', 'abstract': 'Collection of samples and data across the following diseases: Malignant tumour of ovary', 'keywords': ['Malignant tumour of ovary', 'TRICON8B', 'UKCRC Tissue Directory'], 'publisher': {'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY', 'contactPoint': 'mrcctu.icon8b@ucl.ac.uk'}, 'contactPoint': 'mrcctu.icon8b@ucl.ac.uk', 'doiName': 'Not Available'}",ff875c08-58e6-4e33-8ffe-6f51c8364333,"{'spatial': 'England', 'physicalSampleAvailability': ['IN PROGRESS'], 'typicalAgeRange': 'Not Known'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '903ea3e1-6d3f-4854-acf9-389364236f83', '3.0.0': '33e4b8c6-23cc-4c5f-a7a5-8380035b6601', '1.0.0': '5bc0efe5-9e86-4681-9d2c-5bf1c90b13f7', '2.0.0': '824a2ef7-d282-495e-b0fc-e25b3a9613c3', 'latest': '33e4b8c6-23cc-4c5f-a7a5-8380035b6601'}","{'description': 'TRICON8B is the translational research sub-study of the ICON8B trial. The aim is to establish a large, comprehensive biobank comprising tumour tissue, blood and serial plasma samples with associated clinical data which will be an invaluable resource for high-quality translational research in ovarian cancer. \nICON8B is a phase III randomised trial investigating the combination of dose-fractionated chemotherapy and bevacizumab compared to either strategy alone for the first-line treatment of women with newly diagnosed high-risk stage III-IV epithelial ovarian, fallopian tube or primary peritoneal cancer.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",33e4b8c6-23cc-4c5f-a7a5-8380035b6601,https://web.www.healthdatagateway.org/dataset/33e4b8c6-23cc-4c5f-a7a5-8380035b6601,"{'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}, 'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}, 'access': {'dataController': 'Medical Research Council', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'accessRequestCost': 'Not specified', 'dataProcessor': 'Not Applicable', 'jurisdiction': 'GB-ENG', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED'}}","{'temporal': {'startDate': '2016-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:14:16Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T16:15:02Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Neonatal Research Database', 'keywords': ['neonatal inpatient stay', 'epidemiological', 'Neonatal Data Set', 'patient care and outcomes', 'policy research', 'clinical', 'quality improvement', 'health services', 'daily records', 'National Neonatal Research Database', 'follow-up health status'], 'publisher': {'memberOf': 'ALLIANCE', 'name': 'NEONATAL DATA ANALYSIS UNIT - IMPERIAL COLLEGE LONDON', 'identifier': '6048a783a89bdc3443823333'}, 'contactPoint': 'ndau@imperial.ac.uk', 'abstract': 'Electronic health records for all neonatal unit admissions across England, Scotland and Wales as specified in the Neonatal Data Set (ISB 1595).'}",67020745-9def-4c6e-b5ac-bb273bd0a20e,"{'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html', 'https://www.geonames.org/2638360/scotland.html', 'https://www.geonames.org/3042225/isle-of-man.html'], 'typicalAgeRange': '0-1', 'followup': '1 - 10 YEARS', 'pathway': 'Neonatal Unit stay', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'afc8af43-d6cd-4faa-b204-8fc471119b98', '4.0.0': '34396fa9-0691-42a6-9477-e49e3ae854e6', '2.0.0': 'd15d50fe-a132-4b96-860b-40979cb5e5e1', '3.0.0': '5195209a-0c76-4cf8-b006-b183a471e35b', '0.0.2': 'f89af2f4-e3cd-4eaa-835d-94aa347d8a92', 'latest': '34396fa9-0691-42a6-9477-e49e3ae854e6'}","{'description': 'The NNRD is a national resource holding real-world clinical data captured in the course of care on all admissions to NHS neonatal units in England, Wales, Scotland and the Isle of Man. Neonatal units submit data through their Electronic Patient Record system supplier. At present, there is information on around one million babies and 10 million days of care in the NNRD.\n\nThe NNRD is available to support audit, evaluations, bench-marking, quality improvement and clinical, epidemiological, health services and policy research to improve patient care and outcomes. 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(https://www.imperial.ac.uk/neonatal-data-analysis-unit/neonatal-data-analysis-unit/), established and led by Professor Neena Modi and her research group at Imperial College London, the contribution of neonatal units that collectively form the UK Neonatal Collaborative (https://www.imperial.ac.uk/neonatal-data-analysis-unit/neonatal-data-analysis-unit/contributing-to-the-national-neonatal-research-database/), and their lead clinicians.'], 'isReferencedBy': ['https://www.imperial.ac.uk/neonatal-data-analysis-unit/our-research/research-publications/']}, 'access': {'jurisdiction': ['GB'], 'accessRights': ['https://www.imperial.ac.uk/neonatal-data-analysis-unit/neonatal-data-analysis-unit/utilising-the-national-neonatal-research-database/'], 'accessRequestCost': ['https://www.imperial.ac.uk/neonatal-data-analysis-unit/neonatal-data-analysis-unit/utilising-the-national-neonatal-research-database/'], 'dataController': 'Professor Neena Modi, Imperial College London', 'deliveryLeadTime': '1-2 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"{'title': 'CPRD Cardiovascular Disease Synthetic Dataset', 'doiName': 'https://doi.org/10.11581/yk6n-b652', 'abstract': 'This synthetic dataset is based on anonymised real primary care patient data extracted from the CPRD Aurum database. The dataset focuses on cardiovascular disease risk factors and was a proof-of-concept dataset.', 'keywords': ['CVD', 'Synthetic', 'Cardiovascular Disease'], 'publisher': {'identifier': '607db9c2e1f9d3704d570cee', 'memberOf': 'ALLIANCE', 'name': 'CPRD'}, 'contactPoint': 'enquiries@cprd.com'}",780c0a71-0264-4843-939d-1336eee60d40,"{'spatial': ['https://www.geonames.org/countries/GB/united-kingdom.html'], 'typicalAgeRange': '0-150', 'pathway': 'Primary care', 'followup': 'UNKNOWN', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '5158e513-2f13-40f3-8f8a-b96a3e179fc9', '2.0.0': '3485968c-0ac8-4c90-bfb0-a9faca4a24f9', '1.0.0': 'c8db5528-7ba5-40fe-8c5f-2c86a9637c73', 'latest': '3485968c-0ac8-4c90-bfb0-a9faca4a24f9'}","{'description': 'This wholly synthetic dataset is based on real anonymised primary care patient data extracted from the CPRD Aurum database and focuses on cardiovascular disease risk factors.\nResearchers will not be able to access the real anonymised patient data extract which was used as the basis for the synthetic dataset generation to preserve patient privacy.\nThe ground truth data extract was subject to data pre-processing and as such, the synthetic dataset, which is based on this, does not reflect the structure of the source CPRD Aurum\ndatabase. This synthetic dataset was developed as part of a project funded by the Regulators’ Pioneer Fund launched by The Department for Business, Energy and Industrial Strategy (BEIS) and\nmanaged by Innovate UK. The methodology used to generate and evaluate this synthetic dataset is outlined in Wang et al. 2019.', 'associatedMedia': ['https://www.cprd.com/content/synthetic-data'], 'isPartOf': 'CPRD Aurum'}",3485968c-0ac8-4c90-bfb0-a9faca4a24f9,https://web.www.healthdatagateway.org/dataset/3485968c-0ac8-4c90-bfb0-a9faca4a24f9,"{'formatAndStandards': {'conformsTo': ['NHS DATA DICTIONARY'], 'language': ['en'], 'vocabularyEncodingScheme': ['SNOMED CT'], 'format': ['Tab delimited text']}, 'access': {'dataController': 'Clinical Practice Research Datalink (CPRD)', 'dataProcessor': 'CPRD', 'accessService': 'Access to CPRD data, including UK Primary Care Data, and linked data such as Hospital Episode Statistics, is subject to protocol approval via CPRD’s Research Data Governance (RDG) Process. 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"{'title': 'BRAIN UK', 'doiName': 'Not Available', 'publisher': {'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE', 'contactPoint': 'brainuk@soton.ac.uk'}, 'contactPoint': 'brainuk@soton.ac.uk', 'abstract': ""Samples and data for following disorders: Alzheimer's ,Cerebrovascular ,Degenerative brain disorder ,Fit and well, Glioma ,Meningitis ,Multiple sclerosis ,Progressive sclerosing poliodystrophy and others.\nFull list in Description…"", 'keywords': ['Cerebrovascular disease (disorder)', 'Subarachnoid intracranial haemorrhage (disorder)', 'Brain', 'Degenerative brain disorder (disorder)', 'Fit and well Glioma (disorder)Meningitis (disorder)', 'UKCRC Tissue Directory', 'Progressive sclerosing poliodystrophy (disorder)', 'Multiple sclerosis (disorder)', ""Alzheimer's disease (disorder)"", 'Neuropathology']}",1c455ad3-af51-4b93-aff4-c5d3dacfa9f4,"{'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['TISSUE'], 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '39ed4cda-ef4f-441a-a50d-ee103672d399', '3.0.0': '359006d7-1c6c-43c2-8905-09b016398ae1', '1.0.0': '6e148d79-2f7f-4f7a-a1cd-153e44ea9cd9', '2.0.0': '2bf53952-e77c-4746-b36f-5ccb1574f6a7', 'latest': '359006d7-1c6c-43c2-8905-09b016398ae1'}","{'description': ""BRAIN UK is a virtual brain bank which provides access to tissue already available in NHS archives as well as the provision of generic ethics. The BRAIN UK network includes 23 of 24 Neuropathology Centres across the UK.\nWe provide access to collection of samples and data across the following diseases: \n•\tAlzheimer's disease (disorder)\n•\tCerebrovascular disease (disorder)\n•\tDegenerative brain disorder (disorder)\n•\tFit and well Glioma (disorder)Meningitis (disorder)\n•\tMultiple sclerosis (disorder)\n•\tProgressive sclerosing poliodystrophy (disorder)\n•\tSubarachnoid intracranial haemorrhage (disorder)"", 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",359006d7-1c6c-43c2-8905-09b016398ae1,https://web.www.healthdatagateway.org/dataset/359006d7-1c6c-43c2-8905-09b016398ae1,"{'access': {'dataProcessor': 'Not Applicable', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'jurisdiction': 'GB-ENG', 'accessRequestCost': 'Not specified', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'dataController': 'University of Southampton'}, 'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2011-01-01', 'distributionReleaseDate': '2018-11-15'}}",2020-01-13T17:04:31Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T15:55:49Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Audit of Dementia Round 4 - organisational checklist', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d23', 'name': 'HQIP'}, 'contactPoint': 'DataSharing@hqip.org.uk', 'abstract': 'Includes information on hospital structures, resources, areas of identified good practice and monitoring to improve the care, treatment and support of people with dementia.  Data collected April-October 2018.', 'keywords': ['Audit', 'Dementia', 'NAD', 'Organisational', 'Hospital']}",0a305b29-cf23-4261-9299-5251e41ee9f0,"{'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html'], 'pathway': 'dementia care in general hospitals', 'followup': 'UNKNOWN', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'a70cbc7e-9d52-4ff5-b89d-d2e19a464e88', '4.0.0': '3591992f-cfae-4e26-96e7-da80997e81e7', '1.0.0': '0e101598-21d8-456b-95ea-cac34c8b5457', '2.0.0': '64a0ba4d-776c-4979-a4b0-1f1fb6b61c85', '3.0.0': '27f4b803-145d-4622-815a-3cc9ce71aab3', 'latest': '3591992f-cfae-4e26-96e7-da80997e81e7'}","{'description': 'Includes information on structures, resources, areas of identified good practice and monitoring\nthat the hospital has put in place to improve the care, treatment and support of people with dementia. Standards have been drawn from national and professional guidance. Data collected April-October 2018.  Scores produced for governance and quality of planned nutrition.\n\nhttps://www.rcpsych.ac.uk/docs/default-source/improving-care/ccqi/national-clinical-audits/national-audit-of-dementia/r4-resources/tools-guidance/nad-oc-for-round-4-(2018)-v1.pdf?sfvrsn=66894e81_8', 'associatedMedia': ['https://www.hqip.org.uk/a-z-of-nca/dementia-care-in-general-hospitals/'], 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",3591992f-cfae-4e26-96e7-da80997e81e7,https://web.www.healthdatagateway.org/dataset/3591992f-cfae-4e26-96e7-da80997e81e7,"{'access': {'deliveryLeadTime': 'VARIABLE', 'dataProcessor': 'Royal College of Psychiatrists', 'jurisdiction': ['GB-EAW'], 'accessRequestCost': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'accessRights': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England'}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'format': ['CSV'], 'language': ['en'], 'conformsTo': ['LOCAL']}, 'usage': {'resourceCreator': ['Data has been provided by the Healthcare Quality Improvement Partnership from the National Audit of Dementia'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['NO RESTRICTION']}}","{'temporal': {'startDate': '2018-04-01', 'endDate': '2018-06-01', 'timeLag': 'VARIABLE', 'accrualPeriodicity': 'OTHER'}, 'origin': {'source': ['ELECTRONIC SURVEY'], 'purpose': ['AUDIT'], 'collectionSituation': ['IN-PATIENTS']}}",2020-01-13T10:40:44Z,"[{'observedNode': 'FINDINGS', 'measuredValue': 195, 'disambiguatingDescription': 'number of hospitals surveyed', 'observationDate': '01/04/2021', 'measuredProperty': 'Count'}]",4.0.0,{'derivation': ['Not Available']},2021-11-12T16:09:19Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'NIHR BioResource: Full Blood Counts', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d3f', 'name': 'NIHR BIORESOURCE'}, 'abstract': 'Most NIHR BioResource participants complete a self-report form on recruitment.  Typically this contains e.g. height, weight, smoking history and alcohol consumption, but also includes questions relating to disease history and current medications', 'contactPoint': 'nbr@bioresource.nihr.ac.uk', 'keywords': ['recall', 'health', 'lifestyle', 'feasibility', 'cohort discovery']}",321e3ad6-96b9-4f19-bbc4-d06dfe2a59d5,"{'followup': '1 - 10 YEARS', 'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM'], 'typicalAgeRange': '18-85', 'spatial': ['United Kingdom (https://www.geonames.org/2635167/united-kingdom.html)']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'5.0.0': 'ce72c17f-8da8-4a2b-9d76-5d635af31bdd', '1.0.0': '35919e8c-5cea-4d79-bf3f-e28efec1b686', '3.0.0': 'f370759c-f155-4b8c-b774-fde2ebc96b76', '4.0.0': 'cf8a9d13-0ee9-494d-b50d-cef39e7823c8', '2.0.0': '9ccfde56-dd13-4606-a6c1-1e797d3b8d82', '0.0.1': '10122760-5eac-4ffd-bbed-fce47b5b956e', 'latest': '35919e8c-5cea-4d79-bf3f-e28efec1b686'}","{'description': 'The NIHR Bioresource consists of several groups of participants: ~70k from the general population and blood donors (COMPARE, INTERVAL and STRIDES studies); ~19k with one of ~50 rare diseases (RD) including a ~5k pilot for GEL; ~30k with Inflammatory Bowel Disease (IBD) which include the members of Gut Reaction, the Health Data Research Hub for IBD; and ~20k with Anxiety or depression (GLAD study). It intends to extend recruitment in all areas, and to other rare and common disease groups, with a target of ~300k by 2022.  The NIHR BioResource acquires a self-reported health and lifestyle questionnaire from all participants at recruitment, save those recruited in rare disease clinics. Typically variables include height, weight, smoking history and alcohol consumption, with addition of questions relating to disease history and current medications. This is used to pre-screen or match participants when inviting them to take part in experimental medicine studies. De-identified versions of this data are available to researchers investigating the feasibility of future studies.', 'isPartOf': 'Not Applicable'}",35919e8c-5cea-4d79-bf3f-e28efec1b686,https://web.www.healthdatagateway.org/dataset/35919e8c-5cea-4d79-bf3f-e28efec1b686,"{'formatAndStandards': {'format': ['text/csv'], 'language': ['en'], 'conformsTo': ['I2B2'], 'vocabularyEncodingScheme': ['SNOMED CT']}, 'usage': {'resourceCreator': ['NIHR BioResource. Acknowledgement text: ""We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.""'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'isReferencedBy': ['Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/'], 'dataUseLimitation': ['RESEARCH USE ONLY']}, 'access': {'accessRequestCost': ['https://bioresource.nihr.ac.uk/using-our-bioresource/industry-researchers/industry-bioresource-usage-costs/'], 'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)', 'accessRights': ['https://bioresource.nihr.ac.uk/using-our-bioresource'], 'deliveryLeadTime': '2-6 MONTHS', 'accessService': 'Some de-identified data may be released to researchers in a platform-independent filetype (e.g. CSV). However, access to any data acquired via NHS Digital is subject to strict restrictions governing where data may be accessed and from which locale - access is currently via an experimental safe haven built in Microsoft Azure.', 'jurisdiction': ['GB-GBN'], 'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)'}}","{'temporal': {'timeLag': '1-2 MONTHS', 'startDate': '2002-05-20', 'accrualPeriodicity': 'QUARTERLY', 'distributionReleaseDate': '2021-03-31'}, 'origin': {'collectionSituation': ['CLINIC', 'COMMUNITY', 'HOME'], 'purpose': ['STUDY'], 'source': ['ELECTRONIC SURVEY', 'PAPER BASED']}}",2020-01-13T15:06:27Z,"[{'observedNode': 'PERSONS', 'measuredValue': '50224', 'disambiguatingDescription': 'Participants who returned health and lifestyle questionnaires', 'observationDate': '26/11/2020', 'measuredProperty': 'COUNT'}]",1.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['ALL', 'COVID-19 SARI-Watch (formerly CHESS)', 'Civil Registration - Deaths', 'Covid-19 Second Generation Surveillance System', 'Emergency Care Data Set (ECDS)', 'Hospital Episode Statistics Accident and Emergency', 'Hospital Episode Statistics Admitted Patient Care', 'Hospital Episode Statistics Critical Care', 'Hospital Episode Statistics Outpatients', 'Intensive Care National Audit & Research Centre (ICNARC) Case Mix Programme (https://www.icnarc.org/Our-Audit/Audits/Cmp/About)']}",2021-11-25T12:00:16Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 4, 'structuralMetadata.tableName': 4, 'structuralMetadata.tableDescription': 4, 'structuralMetadata.dataElementsCount': 51, 'structuralMetadata.columnName': 51, 'structuralMetadata.columnDescription': 51, 'structuralMetadata.dataType': 51, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'e0a57020-e9d3-4785-bf05-51f2db30a816', 'description': 'Demographics', 'name': 'DDI::Demographics', 'dataElementsCount': 3, 'dataElements': '7512f9f7-9806-44e0-b233-677001c0e41d, 7a6d8317-c639-45bb-a90a-fddf959ceb1c, 50d89136-c2d1-4c0d-8c49-db0cd1345b1c'}, {'id': '1e9e4118-ee37-4d2b-91e0-fc33542ed12a', 'description': 'Clinical Conditions', 'name': 'DDI::Clinical', 'dataElementsCount': 37, 'dataElements': '3a66afc7-0f61-4da5-a965-d823c63cddd3, a941fe04-6363-42f4-93bb-5c919b358cca, 924bb19d-4ba6-4b63-9823-a5c5abd8aec4, 0d37239e-ee0d-4c97-8f26-eedb79fdf7a9, 39ddce65-bf28-4921-944d-01bbed596ddb, 8a3afec9-ee28-4b23-91b4-9c71e1744b14, 5159b55e-d907-4ade-950d-e5180c32167b, ad95a004-04f5-4584-a0d7-8b1e5a944934, 9224b5fd-87a0-4d22-bc84-9cff7b1f933a, 8c9c9970-9e53-41ae-8c99-03de417ddaaf, b4b00f29-d20a-47d1-a786-28adf87bbfad, 2867057d-f6bb-4a39-9b50-ba6d1ac88d22, d2092133-cef5-4299-ac8a-1c0db1e6921d, 4b649753-68b5-4d0c-9976-cef6a11ae95f, 4a8d2b82-d65f-4027-95a0-7a6e08c440c6, ff08011d-3152-4609-8519-dac724370e80, c8d5be3d-049a-41f1-bd5c-be98a30069a7, 795a850e-5d03-4d37-8285-116f56b60a9b, 8558331b-f3cf-4960-9567-a97cce01f1fb, 4aa1e5d9-224d-431c-ba3f-994ee7251589, da5ca47e-bc14-479d-b0ad-f0b9c1081ed2, fb8a13d5-48d9-47a4-b1e6-8b5da2ef18fe, 663d0179-97ec-4ed6-b24a-a889a01fb473, b9a093a4-d932-4be8-ba5f-5b98a3f08abc, cce32398-e94c-4761-a82d-609ff1028f40, 09fba913-d699-462f-b7b6-957981ac8d5e, 83800fe0-5e3c-4e33-a64d-4f2c6fb1f331, 229e1b16-e9b3-44fb-ab1e-ae2302b5a49c, 669d4bbc-6627-41cb-bc60-5ebb921c6716, 00e4f09a-4a70-44a8-a9de-7d4b6c23d762, 78a49fb5-c46b-4fb1-adfd-fe25180f29b8, 0eac398c-db9a-44c8-9789-72619e0acb6d, 9f442408-8321-4206-8378-0de601b0ba57, 4322e79d-bbc9-4f49-874d-0a05c256e7ab, 82c05228-5f69-4bfb-ad82-9e66e33c601f, 2e2a4aa2-7f71-49e1-951d-301c19faeec0, 3a665656-21d1-4a04-8851-897f08ffce5a'}, {'id': '0d2a069b-56b9-43a3-aa77-de5fef91fc5d', 'description': 'Consent', 'name': 'DDI::Consent', 'dataElementsCount': 2, 'dataElements': '0ae21677-c7eb-4318-aecc-1aef69344a4e, 4b620d72-0016-45a7-bc8c-dedd982c4bee'}, {'id': '7715cde0-3013-45af-b011-2525fffabd71', 'description': 'Health & Lifestyle', 'name': 'DDI::HLQ', 'dataElementsCount': 9, 'dataElements': 'bdddecc2-9f1f-45ea-b711-52102b16dd74, 0b12e189-d529-440c-b581-f1a9921f693c, d6bb4f97-8b56-4255-aec6-b9c58261f6ac, bf1cabb5-3e9d-400f-a27d-2c5f5e567364, 334d0122-f4d3-4f89-8f9f-a5a7cde39e66, e32ac398-23e8-4042-8f7c-fcfd5c03c22a, 91355297-4621-4ad0-9cfa-6faceb953da9, b0cd9779-5f6b-405c-bb56-91728f6bf8ec, a2d2f43a-00c8-473e-b00c-74cd42065643'}]}"
"{'title': 'NHS Tayside and Fife Virology', 'publisher': {'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE', 'identifier': '607db9c4e1f9d3704d570d1f', 'memberOf': 'ALLIANCE'}, 'keywords': ['Virology', 'NHS', 'Tayside', 'Fife', 'HIC', 'LIMS', 'Scotland'], 'abstract': 'Scottish laboratory data covering virology tests from the Tayside and Fife regions. This covers lab tests for a large variety of virus antigen and antibody data, including covid19.  Tayside 1999 – onwards; Fife: 2005 - onwards.', 'contactPoint': 'hicsupport@dundee.ac.uk'}",855a84b2-9d58-4b2b-a450-b6c6d534e403,"{'typicalAgeRange': '0-150', 'pathway': 'ALL primary and secondary care LIMS records for Tayside & Fife', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'UNKNOWN', 'spatial': ['https://www.geonames.org/2636157/tayside-region.html', 'http://www.geonames.org/2649469/fife.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '5dfd451e-3b46-4909-91b9-d78f358a83e9', '5.0.0': '35cc06b0-3de1-45b0-8d40-9a8da9b77866', '1.0.0': 'c8ed8784-91ce-4823-8e80-fa3a4b732e11', '3.0.0': 'b6371ea7-4ace-4771-9bb4-35d0466afe66', '2.0.0': '6dd0f10d-82fa-438f-ba74-9c880f60bf4c', '4.0.0': 'd11422cc-8865-46bd-b514-c3daafd8f221', 'latest': '35cc06b0-3de1-45b0-8d40-9a8da9b77866'}","{'description': 'Scottish laboratory data covering virology tests from the Tayside and Fife regions. 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Tayside 1999 – onwards; Fife: 2005 - onwards.', 'isPartOf': 'University of Dundee Health Informatics Centre'}",35cc06b0-3de1-45b0-8d40-9a8da9b77866,https://web.www.healthdatagateway.org/dataset/35cc06b0-3de1-45b0-8d40-9a8da9b77866,"{'usage': {'resourceCreator': ['NHS Tayside and Fife'], 'dataUseRequirements': ['DISCLOSURE CONTROL'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}, 'access': {'accessRequestCost': ['Quotation available on request'], 'accessRights': ['https://www.dundee.ac.uk/hic/governanceapprovalsupport/'], 'jurisdiction': ['GB-SCT'], 'accessService': 'HIC has implemented a remote-access Trusted Research Environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details are available via the following link:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/', 'deliveryLeadTime': '2-4 WEEKS', 'dataProcessor': 'University of Dundee, Health Informatics Centre', 'dataController': 'Local NHS boards'}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'format': ['CSV', 'Database'], 'conformsTo': ['LOCAL']}}","{'origin': {'purpose': ['CARE'], 'source': ['LIMS'], 'collectionSituation': ['SERVICES']}, 'temporal': {'accrualPeriodicity': 'CONTINUOUS', 'timeLag': '1-2 WEEKS', 'distributionReleaseDate': '2021-07-15', 'startDate': '2010-01-01'}}",2020-06-03T12:56:52Z,"[{'observedNode': 'PERSONS', 'measuredValue': '341000', 'disambiguatingDescription': '341,000 patients in the dataset', 'observationDate': '11/11/2021', 'measuredProperty': 'Count'}, {'observedNode': 'EVENTS', 'measuredValue': '2991000', 'disambiguatingDescription': '2,991,000 records in the dataset', 'observationDate': '11/11/2021', 'measuredProperty': 'Count'}]",5.0.0,,2021-11-19T16:06:03Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 46, 'structuralMetadata.columnName': 46, 'structuralMetadata.columnDescription': 46, 'structuralMetadata.dataType': 46, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '68c4979b-5177-4376-a751-63f4bef57cba', 'description': 'Tayside labs virology data. This data is provided in a format based upon the SCI-Store system.  Data prior to 2007 has been transformed to fit this new structure.      This is a complex dataset which is supplied in a hierarchical form, this extract is a flattening of that hierarchy by HIC.', 'name': 'VirologyRestructured', 'dataElementsCount': 46, 'dataElements': 'e4814ffa-1c96-4197-80b1-d3c1854dad46, 2799ef7e-f4ae-444e-8953-3133af6a0d2b, 86327267-180a-4017-8486-19432a3d327c, 188f7268-68de-45ad-b947-aac57eab77cc, 79dbe77f-6e02-4dd2-9263-17c3820eb633, 085afed4-a208-4f2e-b18d-eb98420a9aac, c1eef22b-4240-45d4-abc5-800c23852bff, fc4766d7-fb39-48d1-a4db-dc02b5c9885a, e04ad04f-11e7-45bc-aa74-3307de3b9381, d0421d34-af87-4166-85c7-1d9b4e9e3fd3, 6c2adbe5-400a-401a-bfcd-2ee60772cad2, 354ab92e-2dba-4019-b726-323137e2adf7, 3261b47e-5e5e-4161-a73f-bf65a869c3d3, f7911e7d-38d1-4faa-a7b2-9c2e71009fac, dec5039b-4690-4fbe-99c1-0b36c9a14125, 099706cb-2046-455e-84c8-8abc4aeccc90, 144cce2b-9b9e-4c5c-8b21-23fc9a38fc81, 85754064-3675-47dd-8067-10949ef3a43d, 066d3d63-fd81-486c-9d08-bfea80f93214, ac2756ce-6a9a-45d7-953f-d03bb4bca6b2, 533656eb-3071-4c07-aaac-ce81b36ff230, 9485ef82-899a-4060-9c53-a35d4c0c47e8, 21ea9486-dbeb-4d3f-a251-c378ca1792b7, 3ac878ea-7f2d-4b45-82ba-d9ce40e24eab, 06ef711f-83bf-4473-86f3-b715be5e419c, a0e244f2-25d5-47fc-8a35-dea72af0a122, 93ec0828-81b0-4004-a8fb-83a835d67440, 15a2e93f-46d2-4b49-a20b-e1e303368d48, 64d87e85-00d6-4af6-b215-726dc4ed9ab2, cb2b9417-e057-4000-ac75-6af228002f5c, df4c7e8f-75b3-4093-b8cf-4464177a38da, 1d217134-4e90-481c-bc51-9417e3f4adb5, 258d9dd5-01a8-478c-8f6e-9829a894837b, 2e23ed55-5147-4067-bc00-5ddc71d7c61d, eab68126-c7e8-4d4c-971f-92bf56fdf7d5, 8957546e-6228-48e1-994b-8688ca5814c9, 82447ec0-b6e6-41ab-aabc-de54abd46b4c, ae323ec2-01c9-4d8b-9f15-5bc099a15b51, 2cf53b36-d748-47da-b03b-3deaa19bbc19, 4a44ec28-2f66-4e91-8d30-dffd7b21f528, a6815014-0a94-4c9d-b393-9a40a41657b1, 54ee3579-55cd-4ee6-8af6-25ecd8ff4efe, f907e124-e58c-44d2-976c-834c57842b19, 89923558-395f-4d53-a205-0b4fb0e61420, 6539d636-b6dd-4832-9da3-aaf61ade18c3, 3868497f-0618-4790-81e2-32b2126fcdd1'}]}"
"{'title': 'The Malaysian Asthma Hajj Study', 'keywords': ['asthma', 'Malaysia', 'RESPIRE', 'BREATHE', 'Hajj'], 'publisher': {'identifier': '607db9c2e1f9d3704d570ce6', 'name': 'BREATHE', 'memberOf': 'HUB'}, 'contactPoint': 'RESPIRE@ed.ac.uk', 'abstract': 'This study will assess the prevalence of asthma amongst hajj pilgrims, and risk of asthma-related events during the hajj using routine data from the hajj medical service.'}",8187f77f-65e3-435e-ad7e-d7f22e2fcf80,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/1733045/malaysia.html'], 'typicalAgeRange': '18-99'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'eff41dbc-0ce4-4bfe-b51f-7b2753750332', '3.0.0': '35fde6f6-ff7d-44f0-92fc-1d28b488cbc1', '2.0.0': 'e32b8ff6-6b39-4566-87bc-459b74677493', '1.0.0': 'f201f880-6b0a-4c06-842e-dc50277fa728', 'latest': '35fde6f6-ff7d-44f0-92fc-1d28b488cbc1'}","{'description': 'This study will assess the prevalence of asthma amongst hajj pilgrims, and risk of asthma-related events during the hajj using routine data from the hajj medical service. We will observe current organisational and clinical routines associated with the provision of hajj medicals, explore the perceptions of clinicians and managers of the hajj service, and to develop an intervention and implementation strategy to reduce the risk of asthma events.\n\nFor more information, please see : https://www.ed.ac.uk/usher/respire/chronic-respiratory-disorders/the-malaysian-asthma-hajj-study', 'associatedMedia': ['https://www.ed.ac.uk/usher/respire/chronic-respiratory-disorders/the-malaysian-asthma-hajj-study'], 'isPartOf': 'BREATHE'}",35fde6f6-ff7d-44f0-92fc-1d28b488cbc1,https://web.www.healthdatagateway.org/dataset/35fde6f6-ff7d-44f0-92fc-1d28b488cbc1,"{'usage': {'resourceCreator': ['RESPIRE Collaboration'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS']}, 'formatAndStandards': {'format': ['text'], 'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'conformsTo': ['LOCAL']}, 'access': {'accessService': 'Access is managed on a project-by-project basis. Contact the RESPIRE team:', 'jurisdiction': ['MY'], 'dataController': 'RESPIRE', 'accessRights': ['https://www.ed.ac.uk/usher/respire/about/projects'], 'dataProcessor': 'RESPIRE'}}","{'temporal': {'accrualPeriodicity': 'STATIC', 'timeLag': 'NOT APPLICABLE', 'startDate': '2019-01-08', 'endDate': '2021-01-31'}}",2020-09-22T09:46:17Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '1', 'observationDate': '30/01/2021', 'measuredProperty': 'COUNT'}]",3.0.0,,2021-10-19T15:34:57Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Exploring the provision of supportive care for patients with COPD in Malaysia', 'keywords': ['care', 'COPD', 'Malaysia', 'RESPIRE', 'patients', 'BREATHE'], 'abstract': 'Exploring the provision of supportive care for patients with severe, potentially life-threatening COPD in Malaysia: a qualitative study of gaps, barriers, facilitators and solutions from the perspective of patients, healthcare providers and policy makers', 'publisher': {'memberOf': 'HUB', 'name': 'BREATHE', 'contactPoint': 'RESPIRE@ed.ac.uk'}, 'contactPoint': 'RESPIRE@ed.ac.uk'}",af8cdc87-789e-4bea-9d8b-927aa689d211,"{'spatial': 'Malaysia', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '68eca6a2-7c32-4bea-bcd1-c07dc50ee018', '1.0.0': '36e6b617-ecd5-4ae2-87d6-4a00bb2c653a', 'latest': '36e6b617-ecd5-4ae2-87d6-4a00bb2c653a'}","{'description': 'We aim to explore the views and healthcare experiences of patients in Malaysia with severe, potentially life-threatening COPD, health care providers and policy makers regarding the services that provide (or not) supportive and palliative care for these patients. The findings will inform how the current service provision gap for this patient group may be addressed to meet their currently unmet needs. It has potential to inform palliative care guidelines in Malaysia and ultimately the quality of service provision for these patients. \n\nFor further information, see: https://www.ed.ac.uk/usher/respire/chronic-respiratory-disorders/palliative-care-copd', 'isPartOf': 'BREATHE'}",36e6b617-ecd5-4ae2-87d6-4a00bb2c653a,https://web.www.healthdatagateway.org/dataset/36e6b617-ecd5-4ae2-87d6-4a00bb2c653a,"{'access': {'dataProcessor': 'RESPIRE', 'jurisdiction': 'MY', 'accessRights': 'Access is managed on a project-by-project basis. Contact the RESPIRE team: https://www.ed.ac.uk/usher/respire/about/projects', 'deliveryLeadTime': 'NONE', 'dataController': 'RESPIRE'}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL']}, 'usage': {'resourceCreator': 'RESPIRE Collaboration'}}","{'temporal': {'endDate': '2021-01-31', 'startDate': '2018-03-09'}}",2020-09-18T13:45:50Z,,1.0.0,,2021-04-14T08:24:45Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Glaucoma dataset at University Hospitals Birmingham', 'publisher': {'identifier': '5f8437a3b7dec2a83e8cceba', 'memberOf': 'HUB', 'name': 'INSIGHT'}, 'abstract': 'The University Hospitals Birmingham (UHB) glaucoma dataset is a longitudinal dataset consisting of routinely collected clinical metadata from patients receiving treatment for glaucoma at UHB, from 2007 to the present.', 'keywords': ['Primary Open-Angle', 'Primary Open-Angle Glaucoma', 'Primary Angle-Closure', 'Primary Angle-Closure Glaucoma', 'Secondary Open-Angle Glaucoma', 'Secondary Angle-Closure Glaucoma', 'Congenital Glaucoma', 'Secondary Glaucoma', 'Acute Glaucoma', 'Chronic Glaucoma', 'Pigmentary Glaucoma', 'Fuchs Heterochromic Iridocyclitis', 'Phacolytic Glaucoma', 'Phacomorphic Glaucoma', 'Pseudoexfoliative Glaucoma', 'Traumatic Glaucoma', 'Neovascular Glaucoma', 'Iridocorneal Endothelial Syndrome', 'Uveitic Glaucoma', 'Normal Tension', 'Normal Tension Glaucoma', 'Low Tension', 'Low Tension Glaucoma', 'Intraocular Pressure', 'Optic Nerve Head', 'Perimetric Mean Deviation', 'Mean Deviation', 'Tonopen', 'Goldman', 'Tonometry', 'Central Corneal Thickness', 'Drops', 'Anterior Chamber', 'Angle', 'Visual Field', 'Humphrey', 'Referral', 'Vision', 'Visual Acuity', 'Sight Loss', 'Sight Impairment', 'Surgery', 'Trabeculectomy', 'Laser', 'Selective Laser Trabeculoplasty', 'Trabecular Meshwork', 'Gonioscopy', 'Perimetry', 'Pachymetry', 'Nerve Fibre Layer', 'Prostaglandin Analogs', 'Betat-Adrenergic Receptors Antagonists', 'Alpha2-Adrenergic Agonists', 'Alpha Agonists', 'Miotic Agents', 'Carbonic Anhydrase Inhibitors', 'Antimetabolite', '5-Fluoruracil', 'Mitomycin- C', 'Argon Laser Trabeculoplasty', 'Nd:Yag Laser Peripheral Iridotomy', 'Peripheral Iridotomy', 'Diode Laser Cycloablation', 'Cyclodiode', 'Glaucoma Drainage Implants', 'Cataract'], 'contactPoint': 'enquiries@insight.hdrhub.org'}",48c44534-0184-471e-93b8-1385f92c6631,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': '> 10 YEARS', 'spatial': ['https://www.geonames.org/11591953/west-midlands.html'], 'pathway': 'The UHB glaucoma dataset is representative of the patient pathway for diagnosis and treatment of glaucoma, and longitudinal follow-up.', 'typicalAgeRange': '12-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '375dae92-2015-478b-b1bc-5de90b6d53a9'},"{'description': 'Background\nGlaucoma is a worldwide leading cause of irreversible sight loss. Worldwide, an estimated 60 million people have glaucoma. Glaucoma is a condition of increased intraocular pressure in the eye. Because it may be asymptomatic until a relatively late stage, diagnosis is frequently delayed. There are four general categories of glaucoma: primary open-angle and angle-closure, and secondary open and angle-closure glaucoma.\n\nThe UHB glaucoma dataset is a longitudinal dataset consisting of routinely collected clinical metadata from patients receiving treatment for glaucoma at UHB, from 2007 to the present. \n\nThis dataset encompasses all patients at UHB who have received a diagnosis of primary or secondary glaucoma or ocular hypertension. Clinical metadata includes demographic information, visual acuities, central corneal thickness, intraocular pressure, optic nerve head findings, and mean deviation of the Humphrey visual fields.\n\nThis dataset is continuously updating, however, as of 1st October 2021, it consisted of 5065 people This is a large single centre database from patients with glaucoma and covers more than a decade of follow-up for these patients.\n\nGeography\nThe Queen Elizabeth Hospital is one of the largest single-site hospitals in the United Kingdom, with 1,215 inpatient beds. Queen Elizabeth Hospital is part of one of the largest teaching trusts in England (University Hospitals Birmingham).  Set within the West Midlands and it has a catchment population of circa 5.9million.  The region includes a diverse ethnic, and socio-economic mix, with a higher than UK average of minority ethnic groups. It has a large number of elderly residents but is the youngest population in the UK. There are particularly high rates of diabetes, physical inactivity, obesity, and smoking.\n\nData source:  Ophthalmology department at Queen Elizabeth Hospital, University Hospitals Birmingham NHS Foundation Trust, Birmingham, United Kingdom.', 'associatedMedia': ['https://www.insight.hdrhub.org/about-us'], 'isPartOf': 'NOT APPLICABLE'}",375dae92-2015-478b-b1bc-5de90b6d53a9,https://web.www.healthdatagateway.org/dataset/375dae92-2015-478b-b1bc-5de90b6d53a9,"{'usage': {'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS'], 'resourceCreator': ['University Hospitals Birmingham NHS Foundation Trust'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'isReferencedBy': ['Not available']}, 'access': {'accessService': 'INSIGHT adheres to HDRUK data access principles including the five SAFES; anonymised data is provided into an agreed Trusted Research Environment such as the PIONEER Microsoft Azure TRE at University Hospitals Birmingham NHSFT or equivalent external safe environment, 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"{'title': 'Bristol Dental School Saliva Bank', 'contactPoint': 'anna.brooke@bristol.ac.uk', 'doiName': 'Not Available', 'abstract': 'Collection of samples and data across the following diseases: Fit and well', 'publisher': {'contactPoint': 'anna.brooke@bristol.ac.uk', 'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY'}, 'keywords': ['Bristol Dental School Saliva Bank', 'Saliva', 'Fit and well', 'UKCRC Tissue Directory']}",8d77f0ad-f376-4d61-a97d-5e996c2bbe72,"{'spatial': 'England', 'typicalAgeRange': '15-44', 'physicalSampleAvailability': ['SALIVA']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '4fe28461-f54b-4136-abe6-0316816348ce', '3.0.0': '37687806-bab2-4de8-87a7-844a0061e7f8', '1.0.0': '9b08bf3a-7780-4b60-a24c-ff810d02d348', '2.0.0': '7ca98657-037c-43a8-872a-65a0520695e5', 'latest': '37687806-bab2-4de8-87a7-844a0061e7f8'}","{'description': 'Whole human saliva is collected from donors at the Bristol Dental School at the University of Bristol.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",37687806-bab2-4de8-87a7-844a0061e7f8,https://web.www.healthdatagateway.org/dataset/37687806-bab2-4de8-87a7-844a0061e7f8,"{'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}, 'formatAndStandards': {'format': ['In Progress'], 'language': 'en'}, 'access': {'jurisdiction': 'GB-ENG', 'dataController': 'University of Bristol', 'accessRequestCost': 'Not specified', 'dataProcessor': 'Not Applicable', 'accessRights': ['Please contact the publisher using Contact Point details provided']}}","{'temporal': {'distributionReleaseDate': '2019-01-29', 'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2008-01-01'}}",2020-01-13T17:04:32Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T15:55:52Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'UK MND Collections', 'keywords': ['Motor neuron disease (disorder)', 'Collections', 'MND', 'UKCRC Tissue Directory', 'UK', 'DNA'], 'contactPoint': 'mndcollections@mndassociation.org', 'publisher': {'name': 'TISSUE DIRECTORY', 'contactPoint': 'mndcollections@mndassociation.org', 'memberOf': 'ALLIANCE'}, 'abstract': 'Collection of samples and data across the following diseases: Motor neuron disease (disorder)', 'doiName': 'Not Available'}",89e2d798-c488-4eaf-a50f-a93616093304,"{'physicalSampleAvailability': ['DNA', 'IMMORTALIZED CELL LINES'], 'spatial': 'England', 'typicalAgeRange': '15-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '7f55c499-abd9-4f61-ac7e-93a4d15c79a2', '3.0.0': '381413fe-8808-47f8-b8df-e65baa543ae4', '0.0.1': 'a485f954-f4ef-4546-92b0-b7b51c51245d', '1.0.0': 'fcb43353-820f-4804-91b9-5b573cd6700f', 'latest': '381413fe-8808-47f8-b8df-e65baa543ae4'}","{'description': 'The UK MND Collections (formerly known as the UK MND DNA Bank) was established to provide the international research community with a resource that would help to identify and understand the causative and disease modifying factors involved with motor neurone disease. These samples are available for research into MND and associated conditions such as fronto-temporal dementia only.\nThe UK MND Collections combines more than 3,000 biological samples and accompanying clinical information; as well as epidemiology data from 400 participants, including people with MND, controls and family members.\nThe DNA Bank was the original Collection of whole genome DNA from over 3,000 blood samples, which are stored at CIGMR (Centre for Integrated Genomic Medical Research) in Manchester, UK. The DNA Bank also has clinical information (divided into a minimum and extended dataset) which is available to researchers.\nThe Cell Lines Collection offers a sub set of the DNA Bank samples as EBV-transformed lymphoblastoid cell lines and peripheral blood lymphocytes. This was originally set up as an everlasting supply of DNA, with the lymphoblastoid cell lines now available to researchers to help them understand how the disease is developing.\nThe Epidemiology Collection has just over 200 patient and matched control blood samples with extensive environmental and lifestyle data (both from self-report questionnaires and telephone interviews) available to researchers.\nMore information on the DNA and cell bank is available in Smith et al BMC Genetics (2015) 16:84.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",381413fe-8808-47f8-b8df-e65baa543ae4,https://web.www.healthdatagateway.org/dataset/381413fe-8808-47f8-b8df-e65baa543ae4,"{'access': {'accessRights': 'Please contact the publisher using Contact Point details provided', 'accessRequestCost': 'Not specified', 'dataController': 'MND Association', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'dataProcessor': 'Not Applicable', 'jurisdiction': 'GB-ENG'}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}, 'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}}","{'temporal': {'distributionReleaseDate': '2019-01-11', 'startDate': '2003-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:14:18Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:16:25Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'North West London Pathology (NWL PATH)', 'keywords': ['Pathology', 'Discover-NOW', 'Integrated Care', 'COVID-19', 'COVID', 'Pathology', 'Pathway', 'Real World data', 'Linked longitudinal'], 'publisher': {'memberOf': 'HUB', 'contactPoint': 'researchers@registerfordiscover.org.uk', 'name': 'DISCOVER NOW'}, 'doiName': 'In Progress', 'contactPoint': 'researchers@registerfordiscover.org.uk', 'abstract': 'The NWL Pathology linked table is a direct feed from The Doctors Laboratory and North West London Pathology for patients registered within NWL. Some of the data items included are test dates and times, test codes and names and test results.'}",2c5f3ef6-53f8-42e6-a077-8718261df026,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150', 'spatial': 'NHS Brent CCG; NHS Central London CCG; NHS Ealing CCG; NHS Hammersmith &Fulham CCG; NHS Harrow CCG; NHS Hillingdon CCG; NHS Hounslow CCG; NHS West London CCG', 'pathway': 'This dataset contains all pathology data for patients in NWL. 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"{'title': 'Congenital Anomaly Register and Information Service', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'keywords': ['Congenital Anomaly', 'SAIL'], 'publisher': {'contactPoint': 'SAILDatabank@swansea.ac.uk', 'memberOf': 'ALLIANCE', 'name': 'SAIL'}, 'doiName': 'In Progress', 'abstract': 'Information about any fetus or baby who has or is suspected of having a congenital anomaly and whose mother is normally resident in Wales at time of birth.'}",6fe7e004-eb51-4c7b-9905-1ec9a4827dca,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'All pathways pertaining to congenital anomalies', 'typicalAgeRange': '0-4', 'followup': 'UNKNOWN', 'spatial': 'Wales'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'3.0.0': '3c430204-f632-4add-9fcb-f0ff88caea13', '4.0.0': '38468759-3351-4722-9eeb-4c6dc9fa44ce', '2.0.0': '8be27887-8bf7-47bb-81c0-44900f978ab8', '0.0.1': '88c2750a-05e2-4774-9071-b8bc05ed5ddd', '1.0.0': 'cba72cca-11db-4d7b-ad05-0bcb1e06f1a5', 'latest': '38468759-3351-4722-9eeb-4c6dc9fa44ce'}","{'description': 'CARIS aims to collect reliable data about congenital anomalies that can then be used to help:\n\n- build up and monitor the picture of congenital anomalies in Wales\n- assess interventions intended to help prevent or detect congenital anomalies\n- plan and co-ordinate provision of health services for affected babies and children\n- assess possible clusters of birth defects and their causes\n\nCARIS collects information about any fetus or baby who has or is suspected of having a congenital anomaly and whose mother is normally resident in Wales at time of birth. It includes babies in whom anomalies are diagnosed at any time from conception to the end of the first year of life. Data collection commenced on 1st January 1998 and includes any baby where pregnancy ended after this date.\n\nCARIS uses a multi-source data collection method using a wide range of sources within the NHS. This ranges from antenatal ultrasound, clinical letters, post-mortems and laboratory results. CARIS also accesses a number of databases including SHIRE (Medical Genetics database), PEDW, NCCHD, Paediatric Cardiology database. Medical records are accessed to confirm, validate and add further details to the information already collected.\n\nDue to the nature of this dataset linkage based on the babies is challenging. This is because many pregnancies (approximately 20% of the total) end in fetal loss or termination. However, linkage based on the mother can be performed.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/'], 'isPartOf': 'No Group'}",38468759-3351-4722-9eeb-4c6dc9fa44ce,https://web.www.healthdatagateway.org/dataset/38468759-3351-4722-9eeb-4c6dc9fa44ce,"{'usage': {'dataUseRequirements': 'PROJECT SPECIFIC RESTRICTIONS', 'isReferencedBy': ['Rolfe et al., (2017); Linking AWPS and CARIS data to estimate perinatal mortality in Wales due to congenital anomalies. https://doi.org/10.23889/ijpds.v1i1.238'], 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'resourceCreator': ['Public Health Wales NHS Trust'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'RESEARCH SPECIFIC RESTRICTIONS']}, 'access': {'accessRequestCost': 'Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.', 'deliveryLeadTime': '2-6 MONTHS', 'dataController': 'Public Health Wales NHS Trust', 'accessRights': ['https://saildatabank.com/application-process/'], 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). 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"{'title': 'National Exercise Referral Scheme (NERS)', 'keywords': ['exercise', 'referral', 'SAIL', 'core-res', 'NERS'], 'publisher': {'identifier': '5f3f98068af2ef61552e1d75', 'name': 'SAIL', 'memberOf': 'ALLIANCE'}, 'abstract': 'The National Exercise Referral Scheme (NERS) is a Public Health Wales (PHW) funded scheme which has been in development since 2007. The Scheme targets clients aged 16 and over who have, or are at risk of developing, a chronic disease.', 'contactPoint': 'SAILDatabank@swansea.ac.uk'}",131784c0-769d-4f7b-b7d0-b5f4b89886d4,"{'pathway': 'Pathways pertaining to exercise treatments and physical activity prescribed', 'spatial': ['https://www.geonames.org/2634895/wales.html'], 'typicalAgeRange': '16-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': '6 - 12 MONTHS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'6.0.0': '862c5ae8-8781-4226-91c6-e442806caaec', '8.0.0': '38b0da08-c889-4538-95f2-f2f2c1a86919', '7.0.0': 'edac1d8a-af24-43a6-82a7-e15028d5a5db', 'latest': '38b0da08-c889-4538-95f2-f2f2c1a86919'}","{'description': 'The National Exercise Referral Scheme (NERS) is a Public Health Wales (PHW) funded scheme which has been in development since 2007. The Scheme targets clients aged 16 and over who have, or are at risk of developing, a chronic disease. The scheme is centrally managed by the Welsh local Government Association.\n\nNERS is an evidence-based health intervention incorporating physical activity and behavioural change techniques to support referred clients to make lifestyle changes to improve their health and wellbeing.\n\nThe principal aims of the scheme:\n\nTo offer a high quality National Exercise Referral Scheme across Wales\nTo increase the long term adherence of clients to physical activity\nTo improve the physical and mental health of clients\nTo determine the effectiveness of the intervention in increasing clients’ activity levels and improving their health.', 'isPartOf': 'No Group', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/']}",38b0da08-c889-4538-95f2-f2f2c1a86919,https://web.www.healthdatagateway.org/dataset/38b0da08-c889-4538-95f2-f2f2c1a86919,"{'formatAndStandards': {'format': ['SQL database table'], 'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL']}, 'access': {'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'jurisdiction': ['GB'], 'accessRights': ['https://saildatabank.com/application-process/'], 'dataController': 'Welsh Government', 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'deliveryLeadTime': '2-6 MONTHS', 'dataProcessor': 'SAIL Databank'}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE', 'RESEARCH SPECIFIC RESTRICTIONS'], 'isReferencedBy': ['Not Available'], 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'resourceCreator': ['[""Public Health Wales NHS Trust""]'], 'dataUseRequirements': ['', 'PROJECT SPECIFIC RESTRICTIONS']}}","{'temporal': {'timeLag': '2-4 WEEKS', 'startDate': '2001-09-20', 'distributionReleaseDate': '2021-05-24', 'accrualPeriodicity': 'ANNUAL', 'endDate': '2021-05-14'}, 'origin': {'source': ['ELECTRONIC SURVEY'], 'purpose': ['STUDY'], 'collectionSituation': ['PRIMARY CARE', 'OTHER']}}",2021-09-13T14:57:05Z,"[{'measuredValue': '3000000', 'observedNode': 'FINDINGS', 'observationDate': '01/01/2021', 'measuredProperty': 'Count'}]",8.0.0,"{'tools': ['https://conceptlibrary.saildatabank.com/'], 'derivation': ['Not Available'], 'qualifiedRelation': ['Yes. 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This dataset was designed to have two roles, programme management and outcome reporting, and thus the data in this table in particular was NOT designed to collect research quality data, however care is taken to ensure quality data is collected. Similarly, not all data can or is collected at each stage of the NERS programme; only some fields are mandatory. 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"{'title': 'Clinical response thresholds (acuity) in acutely unwell patients: onset-outcome', 'abstract': 'Hospital patient acuity scores (2004 onwards). Granular condition, ethnicity, multi-morbidity.  Serial physiology, blood biomarkers, treatments, interventions, ITU spells, outcome, pre/post admission healthcare use. Deeply phenotyped, longitudinal.', 'keywords': ['acuity', 'nhs', 'acute', 'NEWS2', 'threshold', 'deterioration', 'alert', 'SEWS', 'inpatient', 'ethnicity', 'multi-morbidity', 'treatments', 'therapies', 'longitudinal', 'vital-signs', 'standards', 'national early warning score', 'patient', 'acute hospitals', 'blood ', 'biomarkers', 'physiology', 'demographics', 'treatments', 'therapies', 'interventions', 'outcomes', 'death'], 'publisher': {'memberOf': 'HUB', 'name': 'PIONEER', 'contactPoint': 'PIONEER@UHB.NHS.UK'}, 'doiName': 'https://web.www.healthdatagateway.org/dataset/a9018475-452b-4864-bbc3-80eda2067820', 'contactPoint': 'PIONEER@UHB.NHS.UK'}",a9018475-452b-4864-bbc3-80eda2067820,"{'followup': '0 - 6 MONTHS', 'pathway': 'Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.', 'spatial': 'West Midlands Region, UK', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-110'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'cce4a8d0-4110-4490-8ffa-485d059b7dcf', '2.0.0': '391ab58c-3412-4fa0-96f6-fdd5ae380b86', '1.0.0': '4437ddd4-71fc-4c06-b53e-c2df50af01d9', 'latest': '391ab58c-3412-4fa0-96f6-fdd5ae380b86'}","{'description': 'Clinical response thresholds (acuity) in acutely unwell patients: onset-outcome\n\nEarly warning systems (EWS) are bedside tools used to assess basic physiological parameters to identify patients with potential or established critical illness. Evidence suggests that they may predict risk of intensive care admission, death and length of hospital stay.  In 2017, the Royal College of Physicians (RCP) published an updated National Early Warning Score, referred to as NEWS2, based upon six physiological parameters. It is associated with specific clinical response recommendations in which a step change occurs at a threshold NEWS2 score ?5, requiring an urgent clinical response no matter what the presenting complaint or condition.\n\nPIONEER geography\nThe West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix. There is a higher than average percentage of minority ethnic groups. WM has a large number of elderly residents but is the youngest population in the UK.  Birmingham has the highest birth rate in England.  It also has the highest infant mortality rate. WM life expectancy is 1.8 years less than in London. There are particularly high rates of physical inactivity, obesity, smoking & diabetes.  Each day >100,000 people are treated in hospital, see their GP or are cared for by the NHS.\n\nEHR. University Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & 100 ITU beds. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”. \n\nScope: All hospitalised patients to UHB from 2000 – current day.  Updated monthly.  Longitudinal & individually linked, so that the preceding & subsequent health journey can be mapped & healthcare utilisation prior to & after acute admission interrogated.\nThe dataset includes all admission ICD-10 & SNOMED-CT codes including medical, surgical, paediatrics.  Serial, structured data pertaining to process of care (timings, staff grades, specialty review, wards), presenting complaint, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations), all blood results, microbiology, all prescribed & administered treatments (fluids, antibiotics, inotropes, vasopressors, organ support), all outcomes.  Linked images available (radiographs, CT, MRI, ultrasound). Includes but not limited to COVID-19 wave 1 and wave 2 data.\n\nAvailable supplementary data:\nMatched ‘elective’ controls; ambulance, 111, 999 data, synthetic data.\n\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen', 'associatedMedia': ['https://www.pioneerdatahub.co.uk/wp-content/uploads/Acuity-Infographic-V3.pdf'], 'isPartOf': 'NOT APPLICABLE'}",391ab58c-3412-4fa0-96f6-fdd5ae380b86,https://web.www.healthdatagateway.org/dataset/391ab58c-3412-4fa0-96f6-fdd5ae380b86,"{'usage': {'dataUseLimitation': 'GENERAL RESEARCH USE', 'resourceCreator': 'This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)', 'dataUseRequirements': 'PROJECT SPECIFIC RESTRICTIONS', 'isReferencedBy': ['""Are current NEWS2 clinical response thresholds optimised for a general in-patient population? Tanya Pankhurst, Elizabeth Sapey, Helen Gyves, Felicity Evison, Suzy Gallier, Georgios Gkoutos, Simon Ball medRxiv 2020.09.12.20136804; doi: https://doi.org/10.1101/2020.09.12.20136804.""']}, 'access': {'dataProcessor': 'NOT APPLICABLE', 'deliveryLeadTime': 'OTHER', 'accessRequestCost': 'www.pioneerdatahub.co.uk/data/data-services-costs/', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'jurisdiction': 'GB', 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/']}, 'formatAndStandards': {'format': ['SQL'], 'conformsTo': 'LOCAL', 'language': 'en', 'vocabularyEncodingScheme': ['SNOMED CT', 'ICD10']}}","{'origin': {'collectionSituation': ['OUTPATIENTS', 'IN-PATIENTS', 'COMMUNITY'], 'purpose': 'CARE', 'source': 'EPR'}, 'temporal': {'accrualPeriodicity': 'QUARTERLY', 'endDate': '2020-11-19', 'timeLag': 'LESS 1 WEEK', 'startDate': '2018-01-01', 'distributionReleaseDate': '2020-11-19'}}",2020-12-03T17:12:45Z,"[{'observedNode': 'Events', 'measuredValue': '366174 spells in the dataset as shown on infographic but data can be extended back to 2004 and will be refreshed monthly.', 'disambiguatingDescription': 'Not applicable', 'observationDate': '2020-11-19', 'measuredProperty': 'count'}]",2.0.0,,2021-02-25T15:01:46Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 4, 'structuralMetadata.tableName': 4, 'structuralMetadata.tableDescription': 4, 'structuralMetadata.dataElementsCount': 47, 'structuralMetadata.columnName': 47, 'structuralMetadata.columnDescription': 47, 'structuralMetadata.dataType': 47, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '26ac549d-ac27-4de8-913b-3db1a68110a3', 'description': 'Admission detail for each spell', 'name': 'AcuityAdmission', 'dataElementsCount': 13, 'dataElements': '80ad25cc-97ff-4586-891b-e3c1f9fd7bea, 2027a182-101c-4c65-a484-b70aecb10075, 00fb6529-0367-4f5a-b5bd-dc22ec150014, e0ffaf7d-378b-42ef-abaa-6216e6ba6877, 6085e278-699d-492a-aef7-1ee97dfae260, 767719e1-20a6-48fa-bf14-41f63b0da921, 3a70d8b4-2ecb-4b8b-81fe-7e36a2d074f9, e488b930-2334-46fb-8bc9-3a3a67b74cd1, 46b3ad84-c558-4f1b-ab96-f789da8053a1, e458c9e3-de57-4cd7-bbe0-b0da706de1c2, 0456f472-89f9-40c4-b523-6ff5fba81dc2, 88e19d0f-a98f-4374-8493-ba1afa592f39, 6c4824d0-ba8e-47f7-9366-e78c7dde8437'}, {'id': 'a866fca7-d252-4e88-8296-790326991ed2', 'description': 'Diagnosis detail for each spell', 'name': 'AcuityDiagnosis', 'dataElementsCount': 9, 'dataElements': '69108a3b-a22f-4920-a0fb-6da8187ef68b, 3e390611-0704-45be-94e8-b24445afd886, b98af8a5-1034-4570-858f-ffe4f9ebe41d, be4de0be-f7d7-42bb-8453-2ab8178cb491, f23b763b-5ea5-4bdc-9901-1af899e27db3, 197f189e-7184-4472-9bcc-c5c17d22c37d, 1c8f9814-cae8-4f34-93a1-897c2e98a981, b4681e1f-ef12-43bb-8eff-0cede77a988e, feee3fbd-3f1c-4983-9d94-887c4a3e5eba'}, {'id': 'a74f4488-f9a3-47c3-9fe8-febbe62b3f1e', 'description': 'Measurement detail for each spell', 'name': 'AcuityMeasurement', 'dataElementsCount': 16, 'dataElements': '65a56f55-0b0e-46d2-8145-3c4dd9533d6a, e8a3d63e-db3e-49bc-bb71-67dfb2bafbd0, 73e0f9c6-5e3f-4f60-9810-83c70a374469, f2f9121f-ddb9-4d1d-b49a-7900a7602807, 9e2f6e72-09de-49c7-b77a-9a010eff2f6d, 7bacf711-c4da-43fc-aee4-6ed7c46d6125, 99cbd7d4-523d-4869-8acd-d14faba94425, 237d28fc-e61e-471b-a4fe-705f720ce21d, c6929d91-9a95-43bd-a370-69080f3494d5, 334b60e9-52b6-44b6-8169-7c5be48b72d2, 70b1a938-6c5c-4eb0-a3ae-cca1591f7c89, 668b7910-e613-48df-b024-089351b525d9, 06d1efec-f93d-4a48-9bbd-e3cf19c2c822, ca6a07cb-26ad-43a1-b7d4-1204bc6ca828, 7939ef26-2dcf-4c28-8e42-979bddd76651, 925fd9a0-7275-43ec-b618-e67ebc6d186e'}, {'id': 'ed0ac326-67f9-47ea-8d6c-350a1487862a', 'description': 'Ward move detail for each spell', 'name': 'AcuityWardMove', 'dataElementsCount': 9, 'dataElements': 'a189a161-8389-4817-8f1d-d62a55ef0771, 57ab5ee5-39db-4b1e-a2f3-5b329374e3dd, b24c89f6-3265-44bd-b84f-2fb161e73ad6, 4c9f4d54-38c7-41c4-b9f4-a153578bc30c, 10b8fe21-16d0-44d4-9a77-696d1558e029, 62be73d3-fd10-4bd1-80de-c81c0eb882c7, 8b44d1eb-a58b-4b26-9687-488e41c81686, fdd4224b-c9f2-4548-bc80-58f1d8809761, a59a13a4-9e33-48c7-bafe-3e3eddcd58d4'}]}"
"{'title': 'Optimising the treatment of Bangladeshi adults with severe pneumonia or ARDS', 'publisher': {'memberOf': 'HUB', 'identifier': '607db9c2e1f9d3704d570ce6', 'name': 'BREATHE'}, 'abstract': 'Optimising the treatment of Bangladeshi adult patients with severe pneumonia and/or ARDS with hypoxemia using adaptive version of locally made Bubble CPAP: Feasibility study : treating adults (COVID-19 positive or negative) to design a RCT.', 'contactPoint': 'RESPIRE@ed.ac.uk', 'keywords': ['RESPIRE', 'Bangladesh', 'bubble continuous positive airway pressure', 'bcpap', 'treatment', 'Adult', 'Covid-19', 'severe', 'pneumonia', 'ARDS', 'hypoxemia']}",224b1065-340b-4c01-842f-d422911d9334,"{'spatial': ['https://www.geonames.org/1210997/bangladesh.html'], 'typicalAgeRange': '18-64', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '39445f3f-c05c-4967-81a9-77a34529ad8e'},"{'description': '""The number of COVID-19 patients hospitalised with severe breathing difficulty is increasing. Unfortunately, there is acute scarcity in the availability of mechanical ventilators to meet the increasing demand of hospitalised COVID-19 patients requiring assisted breathing. The situation is particularly alarming in countries with limited resources like Bangladesh. Low- and middle-income countries urgently need low-cost adaptive technologies to provide CPAP. A trial by the lead investigator demonstrated that a locally made low-cost bubble CPAP was effective in significantly reducing the mortality in children with severe pneumonia. Bubble CPAP device comprises (a) an interface; nasal seal, (b) oxygen delivery piping, connectors and nasal cannula, (c) appropriately sized transparent plastic bottles (containing sterilized water). The safety of the pediatric device and its use in children with acute respiratory disease has already been approved by the Directorate General of Drug Administration (DGDA), Government of Bangladesh. Adapting this technology, if safe and scaled up, could potentially reduce the need for mechanical ventilation and subsequently averting deaths among adult COVID-19 patients. \n\nOur adaptations have included ensuring adequate seal for the interface (mask for nose) when delivering oxygen at high pressure to meet the demand of hypoxaemia in adult lungs. To prevent nasal air leak around the mask, we developed and successfully tested a prototype in healthy individuals which is silicon-based and ergonomically designed considering the variations in size and direction of adult nasal cavities as well as the comfort of patients. This adaptive version of nasal canula was made with the help of Bangladesh University of Engineering and Technology (BUET).\n\nThe design phase has demonstrated that (a) using a collaborative approach we can consistently produce adult silicone nasal seals, (b) we can deliver effective PEEP with a mean pressure that is overall within +/-12% of target pressure, with most loss only at the highest pressure setting (15cmH2O), (c) the device is well tolerated by participants with no in-study adverse events of note and no skin injury or undue discomfort in relation to the cannula or flow.  \n\nThe safety phase initiated on 1st November 2020 and ended on 30th April 2021. We have enrolled twelve patients (ten RT-PCR negatives for COVID-19 and rest of the two RT-PCR positives for COVID-19) in this trial. One participant withdrew from the study by voluntary approach. The rest of the patients were successfully discharged. None of them developed any adverse event(s). \n\nThis study aims to evaluate the barriers and operational challenges related to the introduction of adult bubble CPAP oxygen therapy along with the acceptability and usability of introduction of adult bubble CPAP in tertiary level hospitals of Bangladesh\n""\n""CNN : The plastic bottle saving babies from pneumonia\n\nhttps://www.youtube.com/watch?v=IU-QzOVPEj4\n""', 'isPartOf': 'BREATHE', 'associatedMedia': ['https://www.youtube.com/watch?v=IU-QzOVPEj4']}",39445f3f-c05c-4967-81a9-77a34529ad8e,https://web.www.healthdatagateway.org/dataset/39445f3f-c05c-4967-81a9-77a34529ad8e,"{'usage': {'resourceCreator': ['Respire Collaboration']}, 'access': {'accessService': 'Access is managed on a project-by-project basis. Contact the RESPIRE Collaboration.', 'dataProcessor': 'International Centre for Diarrhoeal Disease Research, Bangladesh (icddr,b)', 'accessRights': ['https:www.ed.ac.uk/usher/respire/about/projects'], 'jurisdiction': ['BD', 'GB-EAW', 'GB-SCT'], 'dataController': 'Respire', 'deliveryLeadTime': 'NOT APPLICABLE'}, 'formatAndStandards': {'format': ['csv'], 'conformsTo': ['LOCAL'], 'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL']}}","{'temporal': {'accrualPeriodicity': 'STATIC', 'endDate': '2021-12-31', 'timeLag': 'NOT APPLICABLE', 'startDate': '2021-09-01'}, 'origin': {'purpose': ['STUDY']}}",2021-11-19T16:27:49Z,[{}],1.0.0,,2021-11-19T16:27:49Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Neuropathic Pain Profiling in Retroviral Infection Study (NIPPR)', 'abstract': 'The Neuropathic Pain Profiling in Retroviral Infection Study: NIPPR. This study contains pain related information reported by people living with Human T-lymphotrophic cell virus (HTLV-1) infection. It includes those with and without neuropathic pain.', 'publisher': {'identifier': '613b2174b8b58d157f531e7a', 'memberOf': 'HUBS', 'name': 'ALLEVIATE'}, 'contactPoint': 'h.kemp@imperial.ac.uk', 'keywords': ['Alleviate', 'Pain', 'Pain Hub', 'Neuropathy']}",41f5c96c-a27a-4015-be50-af967b6c4bac,"{'followup': 'UNKNOWN', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '396e55fb-9a71-4b8c-9e33-2e7179a87d1f'},"{'description': 'The neuropathic pain profiling in retroviral infection Study: The NIPPR Study. This study contains pain related information reported by people living with Human T-lymphotropic cell virus (HTLV-1) infection. It includes those with and without neuropathic pain. \nNIPPR is a cross sectional deep profiling study examining sensory profiles and patient reported outcome measures. It also includes skin biopsy data.  22/40 participants have currently been recruited.  It includes multiple measures including: \n•\tPatient reported pain outcome measures \n•\tSites of pain \n•\tPsychophysical pain measures (quantitative sensory testing and conditioned pain modulation) \n•\tIntra-epidermal nerve fibre density \n•\tPatient reported measures of mood, sleep, quality of life and function.'}",396e55fb-9a71-4b8c-9e33-2e7179a87d1f,https://web.www.healthdatagateway.org/dataset/396e55fb-9a71-4b8c-9e33-2e7179a87d1f,"{'access': {'accessRights': ['https://www.imperial.ac.uk/department-surgery-cancer/research/surgery/groups/pain-research-group/'], 'dataController': 'Imperial College London', 'jurisdiction': ['GB-ENG']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'conformsTo': ['LOCAL'], 'format': ['Spreadsheet']}}","{'temporal': {'accrualPeriodicity': 'STATIC', 'timeLag': 'NOT APPLICABLE', 'startDate': '2021-10-28'}, 'origin': {'purpose': ['STUDY'], 'source': ['OTHER'], 'collectionSituation': ['OTHER']}}",2021-11-01T11:17:43Z,"[{'observedNode': 'PERSONS', 'measuredValue': '40', 'disambiguatingDescription': 'The study aims to recruit 40 patients in total', 'observationDate': '28/10/2021', 'measuredProperty': 'Count'}]",1.0.0,,2021-11-01T11:17:43Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'BRIAN App - Patient data; treatments, PROMs, multi-modal data and demographics', 'publisher': {'identifier': '60a6313d7dd392a16e228a94', 'name': 'BRAIN TUMOUR CHARITY', 'memberOf': 'ALLIANCE'}, 'abstract': 'BRIAN is a patient support app created by The Brain Tumour Charity.  It currently has approx. 4,500 users who use it to record information about their condition, treatments and medications, track quality of life, and more.', 'keywords': ['brain tumour', 'The Brain Tumour Charity', 'BRIAN', 'PROMS', 'demographics', 'Quality of Life'], 'contactPoint': 'brian@thebraintumourcharity.org'}",37c82bb7-eaae-4f16-97b6-045373b7ba18,{'typicalAgeRange': '0-150'},"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '8598caf9-fb3a-45a9-b366-00409332f061', '3.0.0': '3a0a0acd-c549-41f4-8188-14235decf473', 'latest': '3a0a0acd-c549-41f4-8188-14235decf473'}","{'description': ""# Summary of data captured and available for analysis in BRIAN:\n\n## Tumour Log\n\nDetails of users' condition and how it changes over time.  \n\n*   Tumour Type, grade, location, status, date of diagnosis\n*   Historical view of changes over time\n\n## Demographics (primary)\n\nAll BRIAN users provide the following information when signing up to the app.\n\n*   Month / year of birth\n*   Month / year of death (where patient is deceased)\n*   Sex\n*   Country of residence\n*   UK County\n\n## Demographics (secondary)\n\nThese fields are non-mandatory so not as well populated as the primary demographics.\n\n*   Qualifications\n*   Job Status\n*   Income\n*   Marital Status\n\n## Treatments & Appointments\n\nUsers can use BRIAN to track all of their health visits.\n\n*   Health visit description\n*   Start / End dates\n*   Number of treatments\n*   Radiotherapy dosage info\n\n## Medications\n\nBRIAN allows its users to set up a medication schedule and uses mobile notifications to remind users to take them.\n\n*   Schedule: medication types, start/end dates, dosage, and the schedule for taking the medication\n*   Reminders: reminder times, and the times logged by users for when they actually took the medication\n\n## Wearables\n\nUsers can opt in to sharing wearable data with the app. N.B. the quantity data gathered varies by the users’ wearable device.\n\n*   Activity data: steps, distance travelled, active minutes, flights stairs climbed\n*   Sleep data: total sleep, light sleep, deep sleep, REM sleep, wake sleep, time in bed\n*   Heart data: average, min, max & resting heart rate\n*   Height & Weight data: height, weight, BMI\n\n## Challenges\n\nThese small games / activities were created to capture some unique data points that could be used for analysis.\n\n*   Stability Challenge: users have to hold device one-handed and try to keep a ball in a target using very fine motor movements. Scores over time can be shared.\n*   Memory Challenge: users are shown a series of images one after another and are required to indicated whether the current image was the same as the last image. Scores over time can be shared.\n*   Speech Challenge: users read aloud a passage of text & the audio is captured. Voice clips & Azure audio analysis data can be shared.\n*   Selfie challenge: users take a photo of their face each day. Azure Cognizant analysis can be shared.\n\n## Quality of Life\n\nThere are two means for users to track quality of life in BRIAN:\n\n*   QoL Check-ins; a regular check in where users record how they’re feeling physically, cognitively & emotionally, and track symptoms they’re experiencing.\n*   EORTC-QLQ-C30 + BN20 (Adults) and PEDSQL (Paediatrics)\n\n## Clinical Trial History\n\n*   Record of clinical trials attended, as entered by users\n\n## Benefits Claimed\n\n*   Record of state benefits patient is claiming, as entered by users\n\n## Diet Survey\n\n*   An internally authored survey that gathers information on dietary behaviours in patients."", 'associatedMedia': ['https://askbrian.org.uk/'], 'isPartOf': 'NOT APPLICABLE'}",3a0a0acd-c549-41f4-8188-14235decf473,https://web.www.healthdatagateway.org/dataset/3a0a0acd-c549-41f4-8188-14235decf473,"{'access': {'jurisdiction': ['GB-GB'], 'dataProcessor': 'The Brain Tumour Charity', 'dataController': 'The Brain Tumour Charity', 'accessRights': ['https://In-Progress']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['OTHER'], 'format': ['database', 'audio'], 'language': ['en'], 'conformsTo': ['OTHER']}, 'usage': {'resourceCreator': ['The Brain Tumour Charity'], 'dataUseRequirements': ['USER SPECIFIC RESTRICTION'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'RESEARCH SPECIFIC RESTRICTIONS']}}","{'temporal': {'accrualPeriodicity': 'CONTINUOUS', 'timeLag': 'VARIABLE', 'startDate': '2019-09-30'}, 'origin': {'source': ['OTHER INFORMATION SYSTEM'], 'collectionSituation': ['OTHER'], 'purpose': ['OTHER', 'DISEASE REGISTRY']}}",2021-06-16T09:09:58Z,"[{'observedNode': 'PERSONS', 'measuredValue': '4500', 'observationDate': '30/09/2019', 'measuredProperty': 'N/A'}]",3.0.0,,2021-06-24T12:02:10Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Congenital Anomaly Register and Information Service (CARS)', 'abstract': 'Information about any foetus or baby who has or is suspected of having a congenital anomaly and whose mother is normally resident in Wales at time of birth.', 'keywords': ['Congenital Anomaly', 'SAIL', 'core-res', 'CARS'], 'publisher': {'identifier': '5f3f98068af2ef61552e1d75', 'name': 'SAIL', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'SAILDatabank@swansea.ac.uk'}",6fe7e004-eb51-4c7b-9905-1ec9a4827dca,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-4', 'followup': 'UNKNOWN', 'spatial': ['https://www.geonames.org/2634895/wales.html'], 'pathway': 'All pathways pertaining to congenital anomalies'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '3a0d2dea-32c4-40bc-8ad8-be8cd20440b8'},"{'description': 'CARIS aims to collect reliable data about congenital anomalies that can then be used to help:\n\n- build up and monitor the picture of congenital anomalies in Wales\n- assess interventions intended to help prevent or detect congenital anomalies\n- plan and co-ordinate provision of health services for affected babies and children\n- assess possible clusters of birth defects and their causes\n\nCARIS collects information about any fetus or baby who has or is suspected of having a congenital anomaly and whose mother is normally resident in Wales at time of birth. It includes babies in whom anomalies are diagnosed at any time from conception to the end of the first year of life. Data collection commenced on 1st January 1998 and includes any baby where pregnancy ended after this date.\n\nCARIS uses a multi-source data collection method using a wide range of sources within the NHS. This ranges from antenatal ultrasound, clinical letters, post-mortems and laboratory results. CARIS also accesses a number of databases including SHIRE (Medical Genetics database), PEDW, NCCHD, Paediatric Cardiology database. Medical records are accessed to confirm, validate and add further details to the information already collected.\n\nDue to the nature of this dataset linkage based on the babies is challenging. This is because many pregnancies (approximately 20% of the total) end in fetal loss or termination. However, linkage based on the mother can be performed.', 'isPartOf': 'No Group', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/']}",3a0d2dea-32c4-40bc-8ad8-be8cd20440b8,https://web.www.healthdatagateway.org/dataset/3a0d2dea-32c4-40bc-8ad8-be8cd20440b8,"{'usage': {'resourceCreator': ['[""Public Health Wales NHS Trust""]'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'RESEARCH SPECIFIC RESTRICTIONS'], 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'isReferencedBy': ['Rolfe et al., (2017); Linking AWPS and CARIS data to estimate perinatal mortality in Wales due to congenital anomalies. https://doi.org/10.23889/ijpds.v1i1.238']}, 'access': {'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'dataProcessor': 'SAIL Databank', 'dataController': 'Public Health Wales NHS Trust', 'accessRights': ['https://saildatabank.com/application-process/'], 'jurisdiction': ['GB'], 'deliveryLeadTime': '2-6 MONTHS'}, 'formatAndStandards': {'language': ['en'], 'conformsTo': ['LOCAL'], 'format': ['SQL database table'], 'vocabularyEncodingScheme': ['LOCAL']}}","{'temporal': {'endDate': '2019-12-16', 'startDate': '1998-01-01', 'accrualPeriodicity': 'ANNUAL', 'distributionReleaseDate': '2019-11-12', 'timeLag': '1-2 MONTHS'}, 'origin': {'purpose': ['STUDY', 'DISEASE REGISTRY'], 'source': ['EPR'], 'collectionSituation': ['PRIMARY CARE', 'IN-PATIENTS']}}",2021-12-21T14:22:16Z,"[{'observedNode': 'EVENTS', 'measuredValue': '3000000', 'observationDate': '01/09/2021', 'measuredProperty': 'Count', 'disambiguatingDescription': 'Approx 70-80% coverage of Welsh population through GP registrations.'}]",7.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Yes. 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"{'title': 'Annual District Birth Extract', 'doiName': 'In Progress', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'keywords': ['Birth', 'SAIL'], 'publisher': {'memberOf': 'ALLIANCE', 'name': 'SAIL', 'contactPoint': 'SAILDatabank@swansea.ac.uk'}, 'abstract': 'Register of all births in Wales.'}",12a77014-4a77-4eb1-8b26-f49689352d1b,"{'typicalAgeRange': '0-4', 'followup': 'OTHER', 'spatial': 'Wales', 'pathway': 'Secondary', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'e2c66076-9a12-426c-9d55-692c5f88dc23', '5.0.0': '3ab70331-aa54-4f0d-aa95-ea2b95bed9d5', '0.0.1': '91abbc97-33ab-438c-9beb-92147615c605', '4.0.0': '63dfe292-6479-489f-a897-aa616acb0a10', '3.0.0': '12d06bda-1e60-441f-85a4-92cd29779b41', '2.0.0': '9366bf21-4862-4f86-bb2d-8370b1f6dfdc', 'latest': '3ab70331-aa54-4f0d-aa95-ea2b95bed9d5'}","{'description': 'Office for National Statistics (ONS) register of all births in Wales.\n\nThe data are collected from birth registrations.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://www.youtube.com/watch?v=ZK9-Jw3uVkw ', 'https://saildatabank.com/'], 'isPartOf': 'NOT APPLICABLE'}",3ab70331-aa54-4f0d-aa95-ea2b95bed9d5,https://web.www.healthdatagateway.org/dataset/3ab70331-aa54-4f0d-aa95-ea2b95bed9d5,"{'access': {'deliveryLeadTime': '2-6 MONTHS', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). 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Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.', 'deliveryLeadTime': '2-6 MONTHS', 'accessRights': ['https://saildatabank.com/application-process/'], 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'dataController': 'SAIL Databank'}, 'usage': {'dataUseLimitation': 'GENERAL RESEARCH USE', 'isReferencedBy': ['Griffiths et al., (2019); Are active children and young people at increased risk of injuries resulting in hospital admission or accident and emergency department attendance? Analysis of linked cohort and electronic hospital records in Wales and Scotland. https://doi.org/10.1371/journal.pone.0213435'], 'resourceCreator': 'NHS Wales’ Informatics Service (NWIS)', 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION']}, 'formatAndStandards': {'vocabularyEncodingScheme': 'LOCAL', 'conformsTo': 'LOCAL', 'language': 'en', 'format': ['SQL database table']}}","{'temporal': {'accrualPeriodicity': 'QUARTERLY', 'distributionReleaseDate': '2019-09-13', 'timeLag': 'LESS 1 WEEK', 'startDate': '2009-04-01', 'endDate': '2020-05-28'}, 'origin': {'purpose': ['STUDY', 'CARE', 'AUDIT', 'ADMINISTRATIVE', 'FINANCIAL'], 'source': 'EPR', 'collectionSituation': 'ACCIDENT AND EMERGENCY'}}",2020-01-13T14:47:29Z,,6.0.0,"{'derivation': ['Not Available'], 'tools': ['https://conceptlibrary.saildatabank.com/'], 'qualifiedRelation': ['Yes. To any SAIL dataset & reference data.']}",2021-04-09T18:33:19Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 66, 'structuralMetadata.columnName': 66, 'structuralMetadata.columnDescription': 66, 'structuralMetadata.dataType': 66, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'fc111b97-3e5d-4df1-ae91-c435e5b8bf1b', 'description': 'All data related to the Emergancy Department Data Set:\nThe Emergency Department Data Set (EDDS) captures attendances at Accident & Emergency departments and Minor Injury Units (MIUs) in Welsh hospitals.\nVelindre NHS Trust does not provide EDDS data as there are no A&E departments or MIUs in the Trust.\nWelsh residents who attended an emergency department in England are not included.\nThe submission is based on administrative end date.\nPlanned follow up patients are included.\nDefinitions that apply to SITREPS may differ from those associated to the EDDS.', 'name': 'EDDS', 'dataElementsCount': 66, 'dataElements': '54c81c27-7a9c-4353-8073-f17a87fa9393, d9786ea1-401a-4123-9b09-e1374bf3a397, e3400418-85bd-4f31-b601-f83fdde31df7, cff87a1b-44f7-4977-9289-5a207e4c7151, eb20e496-a55a-4ed3-b994-470629ff0f7d, 4c46a67e-e44e-4346-b004-f1488ad250f0, 6e913438-a282-404f-bc11-3741e7158f55, bd2dde0c-e43c-476b-8482-96549c9f3dfc, 652cd3a3-ad31-442b-9d53-5bc6ef1826f0, 3e765ba5-8178-457d-b267-317591d297dd, c0441a01-17f9-4dd7-8300-97c5252f19c1, a5bfa1a3-bd1a-46c5-bc78-ac11e4ebde13, b580c03d-aa49-41b6-b336-3ec6ffb3212d, 1272eb3a-ac0d-465a-9c23-fef502745693, 16b19004-b4c5-4ac6-9618-de4611b89081, 0e87d3b6-f7f2-4589-bb0b-a6986561efdc, 585c0a8d-9a78-4d6f-b3e1-ce2e0514a6f8, fa18be32-7683-4c4f-b6ca-d759ebd98400, 5e7cece8-2588-4ab1-b6af-b5f39874d557, b9fa5b0e-1efb-40df-932d-4b4cc0b46293, a7cc7d84-4415-42fb-b80a-a265fb322852, 2511304d-4759-41c7-bbda-07dd9e68db01, f33f9e3a-3727-4ca2-a925-8cb8adfd7f16, d7ff3d1e-f116-41ce-907c-783f93c21b63, 237ee0d9-0bf4-4a45-b60a-6a7855edfc0d, 5391b2d6-9df0-4b19-9144-e703c35d71b0, 9b9cdae3-08c2-4819-8aca-ed278dbd4a64, c6d671e4-96d4-48ee-8b34-760dbb181c5e, 19274b73-f8f3-4bf5-97dc-066dc6760f01, 98e6cafd-1855-440e-b624-625ea8c02487, 496f15ad-f04a-4ea8-97ac-065333af2204, ebcc1d25-789a-459c-824f-7dcaeb0bab75, d483f512-45cf-473c-b89a-01280ce6a0c5, 6d4ab9d3-5f5a-407c-b5aa-22da01b61366, 764ff9fb-710c-49c4-aa86-a1774dc56bfd, 2f8b30c1-2169-4470-815a-4b40d114370b, bd4c898b-caac-4c36-8dc2-c115e9a12ca3, c1530f38-566b-44c9-9565-756f7647652f, d8cc834f-9fd5-44d1-9927-517a264e037d, 371ea193-a552-4bb4-a04f-577e0276cf20, cdd2c59b-107c-4e3e-80db-31ae7fde6c0f, c485baa6-04e1-410c-9a32-37322acd48b0, 5be14a9d-edd6-42ce-9ac3-58bbfa1afa55, 752e341b-0133-40eb-8d37-6cb228c9d178, 97c36eb1-8ccf-4352-832d-d77ce7004211, 4cdfa378-531e-40c3-b402-d7c2fd21bf88, 86dd6bfe-6935-4ba9-a8d9-1ea476583430, 4f716a8e-5f79-471a-a58f-7656960e46d5, accde441-da91-43db-8787-ab93abe3e808, fad8a44a-6855-4006-ae41-bffce56c0e68, 85d8c5d7-6545-4135-b41e-af6471b92529, 5b2c5874-8136-4c90-b0f3-a52a0849b6c0, ff3580ff-19cb-41fd-a669-a3d710271db3, 6ce81965-daff-4b05-889b-014ce849778a, c0a1c558-2522-4b86-9d32-29ab6fec90a5, d9998188-8d63-4603-9c9c-84a049ffddf3, f8764201-0585-472f-b0fa-22e33d01b30e, 4454a0a6-38f5-409e-bf05-05b2fa9caac4, 24a043fc-59ee-427c-b63c-e6b4f9f8f5db, da434993-3af5-4eb4-9211-b63836f5e649, 13fbb9d3-faa8-4f4d-813a-c357ac4688b0, c9108cdf-02b1-4047-a68f-b3e9daadbde4, e41f7dea-8bed-48c8-ab68-d0c6d72fc755, c2b77442-594e-472e-9462-7f461df40533, 976518df-75ca-4652-83e3-8e5bf7abc2ad, 930146ad-8287-4469-b77d-5e9bf9339462'}]}"
"{'title': 'National Paediatric Diabetes Audit - Parent and Patient Experience measures', 'abstract': 'Patient and parent captured experience data on paediatric diabetes unit activity captured February to July 2019.', 'publisher': {'name': 'HQIP', 'identifier': '607db9c4e1f9d3704d570d23', 'memberOf': 'ALLIANCE'}, 'keywords': ['Audit', 'NPDA', 'Paediatric', 'Diabetes', 'PREM', 'Experience'], 'contactPoint': 'DataSharing@hqip.org.uk'}",b0979e07-3331-408f-853b-5eeba80ce8f9,"{'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'UNKNOWN', 'pathway': 'The dataset is representative of paediatric diabetes care, where participants were recruited from. Very few children or young people with diabetes would be managed outside of this setting.', 'typicalAgeRange': '4-19'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'4.0.0': 'f6827397-47e9-4487-ad5a-cad7b4c4d3d2', '5.0.0': '3adb43c7-cc13-423a-9625-8fd571bbcb26', 'latest': '3adb43c7-cc13-423a-9625-8fd571bbcb26'}","{'description': 'Patient and parent captured experience data on paediatric diabetes unit activity captured February to July 2019 throughout England and Wales. The dataset includes questions about both the health checks received and diabetes outcomes achieved. No personal identifiable information is collected, but the identity of the unit where the patient was treated is included in the dataset.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)', 'associatedMedia': ['https://www.hqip.org.uk/a-z-of-nca/national-paediatric-diabetes-audit/']}",3adb43c7-cc13-423a-9625-8fd571bbcb26,https://web.www.healthdatagateway.org/dataset/3adb43c7-cc13-423a-9625-8fd571bbcb26,"{'access': {'accessRequestCost': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data', 'https://www.rcpch.ac.uk/resources/national-paediatric-diabetes-audit-transparency-open-data#downloadBox'], 'accessRights': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data', 'https://www.rcpch.ac.uk/resources/national-paediatric-diabetes-audit-transparency-open-data#downloadBox'], 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England', 'dataProcessor': 'Royal College of Paediarics and Child Health', 'jurisdiction': ['GB-EAW'], 'deliveryLeadTime': 'VARIABLE'}, 'usage': {'dataUseLimitation': ['NO RESTRICTION'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'resourceCreator': ['Data has been provided by the Healthcare Quality Improvement Partnership from the National Paediatric Diabetes Audit Programme']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'format': ['CCSV', 'XLXS', 'STATA', 'SPSS'], 'conformsTo': ['LOCAL'], 'language': ['en']}}","{'origin': {'collectionSituation': ['CLINIC', 'HOME'], 'purpose': ['AUDIT'], 'source': ['ELECTRONIC SURVEY']}, 'temporal': {'startDate': '2019-02-01', 'distributionReleaseDate': '2020-11-12', 'accrualPeriodicity': 'STATIC', 'endDate': '2019-08-01', 'timeLag': 'MORE 6 MONTHS'}}",2021-11-09T12:48:18Z,"[{'observedNode': 'EVENTS', 'measuredValue': 14000, 'disambiguatingDescription': 'Number of surveys returned', 'observationDate': '31/07/2019', 'measuredProperty': 'Count'}]",5.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Data linked with that from other custodians may be available, but the release of linked data will be subject to the separate permission of all relevant data controllers']}",2022-01-05T14:43:54Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 85, 'structuralMetadata.columnName': 85, 'structuralMetadata.columnDescription': 85, 'structuralMetadata.dataType': 85, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'd1f1311e-b983-4346-9369-9163c9b50db2', 'description': 'Data fields- NPDA PREM questionnaire 2021 - 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"{'title': 'IBD NIHR BioResource: Consent records', 'contactPoint': 'nbr@bioresource.nihr.ac.uk', 'publisher': {'memberOf': 'HUB', 'name': 'GUT REACTION', 'contactPoint': 'nbr@bioresource.nihr.ac.uk'}, 'keywords': ['IBD', ""Crohn's"", 'colitis', 'recall', 'consent'], 'abstract': ""The NIHR BioResource records consent dates and versions for each and every participant consent event.  We also record use of opt-ins and opt-outs including pre-GDPR. This permits us to manage data releases in line with participants' expectations.""}",44ca2cf8-679e-447c-a9eb-55b32159679a,"{'spatial': 'United Kingdom (https://www.geonames.org/2635167/united-kingdom.html)', 'followup': '1 - 10 YEARS', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '18-85'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'3.0.0': 'd8f489a9-2e11-4c5b-974b-71d1beaae400', '4.0.0': '3b0a3b33-dbd5-4cb0-b863-0e1fd80c9a1e', '2.0.0': '89e57932-ac48-48ac-a6e5-29795bc38b94', '1.0.0': '3f1e8d9c-df81-4374-815c-621ab3013581', '0.0.1': '7233dada-17af-437a-bc40-d745c2a8a109', 'latest': '3b0a3b33-dbd5-4cb0-b863-0e1fd80c9a1e'}","{'description': 'The NIHR IBD Bioresource comprises ~30k participants with Inflammatory Bowel Disease (IBD), which include the members of the HDR UK IBD Hub. The NIHR BioResource records consent details – form, version and date - from participants at many points of recontact.  In addition, participants are empowered to contact the study directly to express their preferences. The primary use of consent records is as an exclusion criterion when participants are invited to take part in experimental medicine studies.  However, consent is also factored in to the release of samples and data for sample-only and data-only studies.  One implication, is that data releases have freezes that capture a snapshot of the current consent statuses.  How the withdrawal process is managed, and implications for whether data can be removed rapidly from already published datasets is described in our Participant Privacy Notice, online at https://bioresource.nihr.ac.uk/privacy/', 'isPartOf': 'Not Applicable'}",3b0a3b33-dbd5-4cb0-b863-0e1fd80c9a1e,https://web.www.healthdatagateway.org/dataset/3b0a3b33-dbd5-4cb0-b863-0e1fd80c9a1e,"{'usage': {'isReferencedBy': ['Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/'], 'dataUseLimitation': 'RESEARCH SPECIFIC RESTRICTIONS', 'resourceCreator': 'NIHR BioResource. Acknowledgement text: ""We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.""', 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION']}, 'access': {'accessRequestCost': 'Not Applicable', 'accessService': 'Not Applicable', 'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)', 'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)', 'jurisdiction': 'GB-GBN', 'deliveryLeadTime': 'NOT APPLICABLE', 'accessRights': ['https://bioresource.nihr.ac.uk/using-our-bioresource']}, 'formatAndStandards': {'vocabularyEncodingScheme': 'LOCAL', 'language': 'en', 'conformsTo': 'LOCAL', 'format': ['text/csv']}}","{'origin': {'collectionSituation': ['CLINIC', 'COMMUNITY', 'HOME'], 'source': ['ELECTRONIC SURVEY', 'PAPER BASED'], 'purpose': 'ADMINISTRATIVE'}, 'temporal': {'startDate': '2016-01-13', 'timeLag': 'NOT APPLICABLE', 'accrualPeriodicity': 'CONTINUOUS'}}",2020-01-13T15:06:57Z,"[{'observedNode': 'Persons', 'measuredValue': '33798', 'disambiguatingDescription': 'Participants who have consent information', 'observationDate': '2020-11-26', 'measuredProperty': 'COUNT'}]",4.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['ALL', 'COVID-19 SARI-Watch (formerly CHESS)', 'Civil Registration - Deaths', 'Covid-19 Second Generation Surveillance System', 'Emergency Care Data Set (ECDS)', 'Hospital Episode Statistics Accident and Emergency', 'Hospital Episode Statistics Admitted Patient Care', 'Hospital Episode Statistics Critical Care', 'Hospital Episode Statistics Outpatients', 'Intensive Care National Audit & Research Centre (ICNARC) Case Mix Programme (https://www.icnarc.org/Our-Audit/Audits/Cmp/About)']}",2021-02-21T18:28:03Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 5, 'structuralMetadata.columnName': 5, 'structuralMetadata.columnDescription': 5, 'structuralMetadata.dataType': 5, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '8a71fb30-3e41-4a2a-83bf-2dbb4ea0e13e', 'description': 'Consent events', 'name': 'Consent', 'dataElementsCount': 5, 'dataElements': '4e151b2c-cf10-4db2-af08-ca67092dafc3, a1e73eac-6b1f-473c-b6e6-6be5cb481c84, 46053ff0-41fe-46be-a6b2-2420c0030dc8, 43fcc977-dab7-44de-8f16-725bc05c9dba, be02ce03-11cb-49be-9dc0-15cc08948351'}]}"
"{'title': 'National Audit of Psychosis - Audit on Early Intervention in Psychosis services - case note audit', 'contactPoint': 'DataSharing@hqip.org.uk', 'publisher': {'name': 'HQIP', 'contactPoint': 'DataSharing@hqip.org.uk', 'memberOf': 'ALLIANCE'}, 'keywords': ['Case Note', 'Audit', 'Psychosis', 'NAP - EIP'], 'abstract': 'Contains information about patients attending EIP services, sampled over a one year period.\nIt includes whether people received interventions such as CBTp (Cognitive Behavioural Therapy for Psychosis) or physical health screening.'}",24b88d1a-4363-4619-870e-9ba9fc5d09e1,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '2ec90c59-e52a-456c-b0ec-41f303150dd0', '3.0.0': '3b6d2dbe-0241-4c38-9038-2d6ce1e280de', '1.0.0': '57d71e2d-46a2-42aa-a9c3-9e9ea0d2a8bf', '2.0.0': '18603ae7-a056-4fd6-a3e5-d32a2440dd26', 'latest': '3b6d2dbe-0241-4c38-9038-2d6ce1e280de'}","{'description': 'This dataset contains information about patients attending Early Intervention Psychosis (EIP) services, sampled over a one year period. It includes whether people received interventions such as Cognitive Behavioural Therapy for Psychosis (CBTp) or physical health screening.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",3b6d2dbe-0241-4c38-9038-2d6ce1e280de,https://web.www.healthdatagateway.org/dataset/3b6d2dbe-0241-4c38-9038-2d6ce1e280de,"{'access': {'deliveryLeadTime': 'OTHER', 'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data', 'jurisdiction': 'GB-GBN'}, 'formatAndStandards': {'language': ['en']}}",,2020-01-13T14:26:34Z,,3.0.0,,2021-04-14T08:11:40Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'CDE Surginet Documentation', 'publisher': {'contactPoint': 'surjeet.janjuha@nhs.net', 'memberOf': 'ALLIANCE', 'name': 'BARTS HEALTH'}, 'abstract': ""Locally defined dataset containing details of a patients peri-operative documentation recorded within the Trust's EHR system.   Items are coded using local Millennium internal codes."", 'contactPoint': 'surjeet.janjuha@nhs.net'}",4c4bc482-16f5-462f-8daf-51ec6492074d,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '0044f115-937e-44ff-8445-9ab4011a8884', '2.0.0': '3b752633-8274-4418-b15b-4502bab03935', '1.0.0': 'b41bb360-f2ed-49f0-a45b-b2fb05321975', 'latest': '3b752633-8274-4418-b15b-4502bab03935'}","{'description': None, 'isPartOf': 'CDE'}",3b752633-8274-4418-b15b-4502bab03935,https://web.www.healthdatagateway.org/dataset/3b752633-8274-4418-b15b-4502bab03935,"{'access': {'deliveryLeadTime': 'OTHER', 'accessRights': 'Available locally within Trust corporate Data Warehouse System and authorised access by Trust staff only.\nDataset is also available within Discovery.'}}",,2020-01-13T16:54:41Z,,2.0.0,,2021-02-21T15:18:27Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'IBD NIHR BioResource: Demographic', 'publisher': {'memberOf': 'HUB', 'name': 'GUT REACTION', 'identifier': '607db9c3e1f9d3704d570d0a'}, 'contactPoint': 'nbr@bioresource.nihr.ac.uk', 'abstract': 'The NIHR BioResource acquires broad demographics – e.g. age, sex, ethnicity - from participants at recruitment.  This is used to pre-screen or match participants when inviting them to take part in experimental medicine studies', 'keywords': [""Crohn's"", 'IBD', 'cohort', 'colitis', 'demographics', 'discover', 'feasibility', 'recall']}",b4121feb-f91b-4e20-a19b-fa49c7a5c1c1,"{'typicalAgeRange': '18-85', 'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM'], 'followup': '1 - 10 YEARS', 'spatial': 'https://www.geonames.org/2635167/united-kingdom.html'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'4.0.0': 'd711d67c-7f48-4f9c-b482-ac3ed83f7990', '5.0.0': '3b8357ac-bf06-44c4-9a43-8e772bec709c', '3.0.0': '6a0d0747-a8f9-4ceb-bed7-71b6f828c254', '2.0.0': '6ecc2cb0-3b9b-47fc-9c80-78da44f070ef', '0.0.1': '75499f5d-2ef7-49ee-aaaf-b490cac739f9', '1.0.0': 'e9b1ef97-ff63-4336-b3f8-2d5c5f5accce', 'latest': '3b8357ac-bf06-44c4-9a43-8e772bec709c'}","{'description': 'The NIHR IBD Bioresource comprises ~30k participants with Inflammatory Bowel Disease (IBD), which include the members of the HDR UK IBD Hub. The NIHR BioResource acquires demographic details – e.g. age, sex, ethnicity - from participants at recruitment. This is used to pre-screen or match participants when inviting them to take part in experimental medicine studies. De-identified versions of this data are available to researchers investigating the feasibility of future studies.', 'isPartOf': 'Not Applicable'}",3b8357ac-bf06-44c4-9a43-8e772bec709c,https://web.www.healthdatagateway.org/dataset/3b8357ac-bf06-44c4-9a43-8e772bec709c,"{'formatAndStandards': {'language': ['en'], 'conformsTo': ['I2B2'], 'vocabularyEncodingScheme': ['LOCAL', 'NHS NATIONAL CODES'], 'format': ['text', 'csv']}, 'usage': {'dataUseLimitation': ['RESEARCH USE ONLY'], 'resourceCreator': ['NIHR BioResource. Acknowledgement text: ""We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.""'], 'isReferencedBy': ['Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION']}, 'access': {'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)', 'accessRequestCost': ['https://bioresource.nihr.ac.uk/using-our-bioresource/industry-researchers/industry-bioresource-usage-costs/'], 'jurisdiction': ['GB-GBN'], 'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)', 'accessRights': ['https://bioresource.nihr.ac.uk/using-our-bioresource'], 'accessService': 'Some de-identified data may be released to researchers in a platform-independent filetype (e.g. CSV). However, access to any data acquired via NHS Digital is subject to strict restrictions governing where data may be accessed and from which locale - access is currently via an experimental safe haven built in Microsoft Azure.', 'deliveryLeadTime': '2-6 MONTHS'}}","{'origin': {'collectionSituation': ['CLINIC', 'COMMUNITY', 'HOME'], 'source': ['ELECTRONIC SURVEY', 'PAPER BASED'], 'purpose': ['STUDY']}, 'temporal': {'distributionReleaseDate': '2021-03-31', 'startDate': '2016-01-13', 'timeLag': '1-2 MONTHS', 'accrualPeriodicity': 'QUARTERLY'}}",2020-01-13T15:06:58Z,"[{'observedNode': 'PERSONS', 'measuredValue': '33795', 'disambiguatingDescription': 'Participants who have demographic information (age and gender as a minimum)', 'observationDate': '26/11/2020', 'measuredProperty': 'COUNT'}]",5.0.0,"{'qualifiedRelation': ['ALL', 'COVID-19 SARI-Watch (formerly CHESS)', 'Civil Registration - Deaths', 'Covid-19 Second Generation Surveillance System', 'Emergency Care Data Set (ECDS)', 'Hospital Episode Statistics Accident and Emergency', 'Hospital Episode Statistics Admitted Patient Care', 'Hospital Episode Statistics Critical Care', 'Hospital Episode Statistics Outpatients', 'Intensive Care National Audit & Research Centre (ICNARC) Case Mix Programme (https://www.icnarc.org/Our-Audit/Audits/Cmp/About)'], 'derivation': ['Not Available']}",2021-08-04T12:48:23Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 18, 'structuralMetadata.columnName': 18, 'structuralMetadata.columnDescription': 18, 'structuralMetadata.dataType': 18, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'beaf3137-b51b-459e-b017-9f20a7de67e1', 'description': 'DDI: Broad Demographics', 'name': 'IBD NIHR BioResource: Demographic', 'dataElementsCount': 18, 'dataElements': '1d36db0a-0625-4aa7-994a-a4470a522576, 5f6f6b7a-83ee-4d58-9f76-547a8828e5fe, 863deddc-58bd-49bf-bbce-53da6704bbb3, ce9f3990-78d5-4dd9-a6cd-3bf705a9f9e9, a454b427-69ef-49ff-8118-659e8789b490, 979f0630-7715-41ec-a9f7-b1fece575b9d, 88aeae20-39be-4c25-9456-b4ca09dde697, 6835bf5a-cea4-476e-9362-e566dffa0904, 718446f1-8132-450e-9abe-ae6a6ec7109b, 733686f4-23fa-4e3f-ae52-4adc51aa5850, 9163e9a0-483c-48e0-b9e9-92cecf3b3264, e4d0f144-26ab-4599-9eea-75443580a957, f2df3ff5-8e3b-44a9-ad68-1c460c5b5bea, 880c9e2e-e2f8-4ed9-bbce-c78a53ef8e9e, 5e67eb4b-3874-4de7-84d9-0a9152b38f66, d29de5f3-8ec1-486e-960b-39fb4ece4ed6, 298c81f5-31aa-47a9-8992-ec3c6aff0f6c, 44c4b026-a51e-4e86-89ef-ec50fbc28f04'}]}"
"{'title': 'Investigations, interventions, and outcomes for acute coronary syndrome', 'publisher': {'identifier': '607db9c5e1f9d3704d570d5f', 'name': 'PIONEER', 'memberOf': 'HUB'}, 'contactPoint': 'PIONEER@UHB.NHS.UK', 'abstract': 'A deeply phenotyped dataset of 61,000 patients being investigated or treated for acute coronary syndrome.  Longitudinal linked healthcare utilisation data. Serial physiology readings, lab analysis results, drug administrations and co-morbidities.', 'keywords': ['heart attacks', ' Acute Coronary Syndromes', 'Optimising pharmacology', 'Medications', 'Use of Guidelines', 'ACS', 'Cardiovascular', 'observations', 'Coronary Artery Disease', 'ACE Inhibitors', 'Percutaneous Coronary Intervention', 'Diabetes Inhibitors', 'Troponins', 'ProBNP', 'Coronary Syndrome', 'Beta blockers', 'Cardiovascular mortality', 'Chronic Coronary Syndromes']}",b8f2c611-21d0-424e-a1ed-6976b1c207ec,"{'typicalAgeRange': '17-110', 'pathway': 'Data is representative of the multi-ethnicity population within the West Midlands (42% non white). Data includes all patients admitted during this timeframe, with National data Opt Outs applied, and therefore is representative of admissions to secondary care. Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.', 'followup': '1 - 10 YEARS', 'spatial': ['https://www.geonames.org/2634343/west-midlands.html'], 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '3b84d205-2175-4c9a-bbe3-d0e24434e625'},"{'description': 'Background. Following an acute coronary syndrome (ACS), the annual risk of recurrent acute coronary syndrome or death is approximately 6-9% despite contemporary treatments (percutaneous coronary intervention, dual antiplatelet therapy and standard secondary prevention, including statins, beta blockers and ACE inhibitors). \n\nIn recent years, many new strategies have been shown to further reduce the risk of cardiovascular death in patients with coronary artery disease and these are recommended in the 2019 ESC guideline for chronic coronary syndromes. \n\nNovel medications for diabetes (SGLT2 inhibitors and GLP-1 agonists) and lipids (ezetimibe and PCSK-9 inhibitors) have demonstrated reductions in adverse cardiovascular events in patients with coronary artery disease. \n\nWith treatment regimens becoming increasingly complex, it can be unclear which drugs are being used for each patient. This highly granular dataset of >61,000 patients under investigation for or with confirmed ACS would enable projects to assess guideline compliance, drug related adverse events and modelling to identify responder and non-responder subgroups.   \n\nPIONEER geography: The West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix.  \n\nEHR: UHB is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & an expanded 100 ITU bed capacity including a dedicated cardiac HDU and ITU. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”. \n\nScope: ALL patients being investigated or treated for coronary artery disease and acute coronary syndromes focusing on myocardial infarction and unstable angina from 2019 onwards. Longitudinal & individually linked, so that the preceding & subsequent health journey can be mapped & healthcare utilisation prior to & after admission understood. The dataset includes highly granular patient demographics, co-morbidities taken from ICD-10 & SNOMED-CT codes. Serial, structured data pertaining to process of care (timings, admissions, wards), presenting complaint, physiology readings (blood pressure, respiratory rate, heart rate, height, weight), Lab analysis results (EGFR, cholesterol, lactate, platelets, white blood cells and others), drug allergies, drug administered and all outcomes.  \n\nAvailable supplementary data: Matched controls; ambulance, OMOP data, synthetic data. \n\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.'}",3b84d205-2175-4c9a-bbe3-d0e24434e625,https://web.www.healthdatagateway.org/dataset/3b84d205-2175-4c9a-bbe3-d0e24434e625,"{'usage': {'resourceCreator': ['This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}, 'formatAndStandards': {'format': ['SQL'], 'vocabularyEncodingScheme': ['SNOMED CT', 'ICD10'], 'conformsTo': ['LOCAL'], 'language': ['en']}, 'access': {'deliveryLeadTime': '1-2 MONTHS', 'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/'], 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'dataProcessor': 'NOT APPLICABLE', 'jurisdiction': ['GB-ENG'], 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust'}}","{'temporal': {'endDate': '2021-12-16', 'timeLag': 'OTHER', 'distributionReleaseDate': '2021-12-16', 'startDate': '2019-01-01', 'accrualPeriodicity': 'QUARTERLY'}, 'origin': {'purpose': ['CARE'], 'collectionSituation': ['IN-PATIENTS', 'OUTPATIENTS', 'ACCIDENT AND EMERGENCY'], 'source': ['EPR']}}",2022-02-02T12:47:45Z,"[{'measuredProperty': 'Count', 'observedNode': 'EVENTS', 'measuredValue': '61476', 'disambiguatingDescription': '61,476 admissions for patients with myocardial infarction and unstable angina', 'observationDate': '16/12/2021'}]",1.0.0,{'derivation': ['Not Available']},2022-02-02T12:47:45Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 7, 'structuralMetadata.tableName': 7, 'structuralMetadata.tableDescription': 7, 'structuralMetadata.dataElementsCount': 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"{'title': 'IBD NIHR BioResource: SNP imputation data', 'publisher': {'memberOf': 'HUB', 'contactPoint': 'nbr@bioresource.nihr.ac.uk', 'name': 'GUT REACTION'}, 'contactPoint': 'nbr@bioresource.nihr.ac.uk', 'abstract': 'SNP chip data can be used to impute many of the (non-rare) SNPs not included on the chips.  The NIHR BioResource is using a modified version of the UK Biobank protocol to improve the options for recall.', 'keywords': ['IBD', ""Crohn's"", 'colitis', 'recall', 'SNP', 'Imputation']}",7dee2bd6-733a-4b2e-a942-7f9eaf8ebbc2,"{'spatial': 'United Kingdom (https://www.geonames.org/2635167/united-kingdom.html)', 'typicalAgeRange': '18-85', 'followup': '1 - 10 YEARS', 'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '3bb25cba-b4dc-47f1-ab5e-b63f89500612'},"{'description': 'The NIHR IBD Bioresource comprises ~30k participants with Inflammatory Bowel Disease (IBD), which include the members of the HDR UK IBD Hub. SNP chip data can be used to impute many of the (non-rare) SNPs not included on the chips.  The NIHR BioResource is using a modified version of the UK Biobank protocol to improve the options for recall.', 'isPartOf': 'Not Applicable'}",3bb25cba-b4dc-47f1-ab5e-b63f89500612,https://web.www.healthdatagateway.org/dataset/3bb25cba-b4dc-47f1-ab5e-b63f89500612,"{'usage': {'isReferencedBy': ['Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': 'RESEARCH USE ONLY', 'resourceCreator': 'NIHR BioResource. Acknowledgement text: ""We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.""'}, 'formatAndStandards': {'conformsTo': 'LOCAL', 'language': 'en', 'vocabularyEncodingScheme': 'LOCAL', 'format': ['text/plink', 'text/vcf']}, 'access': {'accessRequestCost': 'https://bioresource.nihr.ac.uk/using-our-bioresource/industry-researchers/industry-bioresource-usage-costs/', 'accessRights': ['https://bioresource.nihr.ac.uk/using-our-bioresource'], 'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)', 'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)', 'jurisdiction': 'GB-GBN', 'accessService': ""Some de-identified data may be released to researchers in a platform-independent filetype (e.g. CSV). However, access to any data acquired via NHS Digital is subject to strict restrictions governing where data may be accessed and from which locale - access is currently via an experimental safe haven built in Microsoft Azure. It is also intended that SNP data be available from the European Genome-Phenome Archive (EBI's EGA) via managed access."", 'deliveryLeadTime': '2-6 MONTHS'}}","{'temporal': {'distributionReleaseDate': '2021-03-31', 'timeLag': '2-6 MONTHS', 'startDate': '2016-01-13', 'accrualPeriodicity': 'QUARTERLY'}, 'origin': {'source': 'MACHINE GENERATED', 'purpose': 'STUDY', 'collectionSituation': 'OTHER'}}",2021-02-21T16:36:23Z,,0.0.1,"{'derivation': ['Not Available'], 'qualifiedRelation': ['ALL', 'COVID-19 SARI-Watch (formerly CHESS)', 'Civil Registration - Deaths', 'Covid-19 Second Generation Surveillance System', 'Emergency Care Data Set (ECDS)', 'Hospital Episode Statistics Accident and Emergency', 'Hospital Episode Statistics Admitted Patient Care', 'Hospital Episode Statistics Critical Care', 'Hospital Episode Statistics Outpatients', 'Intensive Care National Audit & Research Centre (ICNARC) Case Mix Programme (https://www.icnarc.org/Our-Audit/Audits/Cmp/About)']}",2021-02-21T16:33:40Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Active Adult Survey Dataset (AASD)', 'keywords': ['Active', 'SAIL', 'core-res'], 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '5f3f98068af2ef61552e1d75', 'name': 'SAIL'}, 'abstract': 'Large scale survey of the adult population in Wales using CAPI.\xa0Replaced by National Survey for Wales Dataset (NSWD).', 'contactPoint': 'SAILDatabank@swansea.ac.uk'}",1eb67fd5-33f6-49dd-a43d-854fff9f25f5,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2634895/wales.html'], 'pathway': 'All pathways about prescribed adult physical activity', 'typicalAgeRange': '15-150', 'followup': '0 - 6 MONTHS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '3c14d319-4ff5-42ff-b440-400f099f9b13'},"{'description': 'Provides the basis from which to strategically monitor and track trends in sport in Wales, as well as forming a base from which to shape policy and practice.\n\nThe Active Adults Survey is a large scale survey of the adult population in Wales using CAPI. 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"{'title': 'Tissue Solutions Ltd', 'publisher': {'memberOf': 'ALLIANCE', 'contactPoint': 'enquiries@tissue-solutions.com', 'name': 'TISSUE DIRECTORY'}, 'contactPoint': 'enquiries@tissue-solutions.com', 'keywords': ['Fit and well', 'Tissue Solutions Ltd', 'UKCRC Tissue Directory'], 'doiName': 'Not Available', 'abstract': 'Collection of samples and data across the following diseases: Fit and well'}",bbcdc352-e0f7-4672-93a7-134bcf5001b1,"{'spatial': 'Scotland', 'typicalAgeRange': 'Not Known', 'physicalSampleAvailability': ['IN PROGRESS']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'b730442a-72f3-4b0d-8ad3-4bdba046df7a', '2.0.0': '3c23941a-42a7-4940-b32f-aea743c0dc2a', '0.0.1': 'eb01349c-0d63-4321-abe0-70bb9c182762', 'latest': '3c23941a-42a7-4940-b32f-aea743c0dc2a'}","{'description': 'Tissue Solutions specializes in sourcing biological material for academics, pharma & biotech companies and CROs and is working with clients worldwide (USA, UK, Europe and Japan). We are a virtual tissue bank, working with multiple sources to acquire samples on behalf of our clients for use mainly during the preclinical research phase. We never retain tissues ourselves for our own use. We provide access to banked human tissues and set up prospective collections in the UK and USA.  We specialise in sourcing ""tough"" tissues, e.g. fresh samples or those with specific inclusion and exclusion criteria. We provide both diseased and non-diseased samples, FFPE and fresh frozen and fresh samples.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",3c23941a-42a7-4940-b32f-aea743c0dc2a,https://web.www.healthdatagateway.org/dataset/3c23941a-42a7-4940-b32f-aea743c0dc2a,"{'formatAndStandards': {'format': ['In Progress'], 'vocabularyEncodingScheme': 'OTHER', 'language': 'en'}, 'access': {'jurisdiction': 'GB-SCT', 'dataProcessor': 'Not Applicable', 'accessRights': ['Please contact the publisher using Contact Point details provided'], 'accessRequestCost': 'Not specified', 'dataController': 'Tissue Solutions Ltd'}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}}",{'temporal': {'startDate': '2017-01-01'}},2020-01-13T17:14:15Z,,2.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T16:14:49Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Postponed Admitted Procedures (CAPD)', 'publisher': {'identifier': '5f3f98068af2ef61552e1d75', 'name': 'SAIL', 'memberOf': 'ALLIANCE'}, 'abstract': 'Reason for cancelled admitted procedures.', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'keywords': ['Admitted', 'Procedures', 'Postponed', 'SAIL', 'CAPD', 'core']}",bff94600-a254-4111-82f7-6167084d81ca,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'OTHER', 'typicalAgeRange': '0-150', 'pathway': 'All secondary care elective pathways', 'spatial': ['https://www.geonames.org/2634895/wales.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'6.0.0': 'c91cd47a-0a72-40f9-9d28-4e42f0c6ce6e', '7.0.0': '3c870bf2-acfb-44d1-8437-06ebb3c0993c', '5.0.0': '73edba9a-3799-47e4-9a6e-a52321c21367', 'latest': '3c870bf2-acfb-44d1-8437-06ebb3c0993c'}","{'description': 'Information on reason for cancelled and postponed admitted procedures. Covers elective inpatient and day case activity. Be aware of several exclusion criteria: LHBs are required to submit data for elective inpatient and day case activity only via the submission of the postponed intended admission. Cancelled Regular Day / Night Attendance procedures are excluded. Maternity activity (i.e. Admission Method ‘31’ and ‘32’) is excluded. Inpatient and day case patients who are admitted and discharged without having their elective procedure undertaken are included. Those procedures that are brought forward are excluded. Procedures that are postponed one or more times during the same admitted stay but are subsequently performed during that admitted stay are excluded. Procedures that are postponed one or more times during the same admitted stay and not performed during that stay should be reported as one postponement. Procedures that are postponed twice for the same intended admission date should be counted as one postponement. Procedures that are postponed but are subsequently rescheduled and performed during the same admitted stay are excluded. Patients whose procedures were scheduled to take place outside Wales are excluded. Local Health Boards are required to submit data on Welsh residents whose procedures are intended to take place in their Local Health Board. For example, if a patient is on a waiting list in Cardiff University Health Board but are sent to Cwm Taf to have their procedure (waiting list initiative). Cwm Taf schedule the intended admission date and subsequently postpone the procedure, the postponement should be submitted by Cwm Taf. Velindre NHS Trust are excluded.\n\nFormerly known as Cancelled Admitted Procedures Dataset.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/'], 'isPartOf': 'NOT APPLICABLE'}",3c870bf2-acfb-44d1-8437-06ebb3c0993c,https://web.www.healthdatagateway.org/dataset/3c870bf2-acfb-44d1-8437-06ebb3c0993c,"{'usage': {'resourceCreator': ['Digital Health and Care Wales'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}, 'access': {'dataProcessor': 'SAIL Databank', 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'accessRights': ['https://saildatabank.com/application-process/'], 'deliveryLeadTime': '2-6 MONTHS', 'jurisdiction': ['GB'], 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'dataController': 'SAIL Databank'}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'format': ['SQL database table'], 'conformsTo': ['LOCAL'], 'language': ['en']}}","{'temporal': {'endDate': '2021-09-30', 'distributionReleaseDate': '2021-12-08', 'timeLag': '1-2 MONTHS', 'startDate': '2013-01-01', 'accrualPeriodicity': 'MONTHLY'}, 'origin': {'purpose': ['CARE'], 'source': ['EPR'], 'collectionSituation': ['IN-PATIENTS']}}",2021-10-05T16:31:26Z,"[{'observedNode': 'EVENTS', 'measuredValue': '696566', 'observationDate': '27/09/2021', 'measuredProperty': 'Count'}]",7.0.0,"{'derivation': ['Not Available'], 'tools': ['https://conceptlibrary.saildatabank.com/'], 'qualifiedRelation': ['Yes. To any SAIL dataset & reference data']}",2022-01-04T09:18:06Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 53, 'structuralMetadata.columnName': 53, 'structuralMetadata.columnDescription': 53, 'structuralMetadata.dataType': 53, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '29e8e255-d4ba-4497-a955-12dade0d38b7', 'description': 'The scope of the new data set is as follows:\n•LHBs are required to submit data for elective inpatient and day case activity only via the submission of the postponed intended admission.\no  Cancelled Regular Day / Night Attendance procedures are excluded.\no  Maternity activity (i.e. Admission Method ‘31’ and ‘32’) is excluded.\n•Inpatient and day case patients who are admitted and discharged without having their elective procedure undertaken are included.\n•Those procedures that are brought forward are excluded.\n•Procedures that are postponed one or more times during the same admitted stay but are subsequently performed during that admitted stay are excluded.\n•Procedures that are postponed one or more times during the same admitted stay and not performed during that stay should be reported as one postponement. \n•Procedures that are postponed twice for the same intended admission date should be counted as one postponement.\n•Procedures that are postponed but are subsequently rescheduled and performed during the same admitted stay are excluded.\n•Patients whose procedures were scheduled to take place outside Wales are excluded.\n•Local Health Boards are required to submit data on Welsh residents whose procedures are intended to take place in their Local Health Board. For example, if a patient is on a waiting list in Cardiff University Health Board but are sent to Cwm Taf to have their procedure (waiting list initiative). Cwm Taf schedule the intended admission date and subsequently postpone the procedure, the postponement should be submitted by Cwm Taf.\n•Velindre NHS Trust are excluded.', 'name': 'CANCELLED_ADMITTED_PROCEDURE', 'dataElementsCount': 53, 'dataElements': 'a1d0076c-f3d7-423b-8631-3bcc0ee329cf, 8171ba55-2822-4e7f-ba73-d29d06335b19, 393e5119-1348-4885-bab6-a54182c3f4ca, 826e5277-bea7-46f2-9403-16557b3a75e3, ca1504b5-57a2-48bd-92ad-e9291621fbbf, e71d6075-09fa-4286-91bf-567140f0e55e, 88e3c822-033e-4da3-ab3f-31bf9ffcd72d, 95514e08-c4a6-4d4e-9f3a-ae862e523b14, 991fa0fc-78fe-4aea-a1cc-7e60c014e02a, e4d14ed8-0ffb-4187-a5dc-9b21e727ec4d, 79cba957-1822-46eb-b2aa-cee5c2ee6b9e, 46b6b998-ac7b-4530-a95f-5759170c82e8, e8aa3849-b005-4b92-a3d4-ec61b1eedd5a, 6f7e8040-98d7-4750-b10b-9ff089105a22, e5642c74-5fbd-4729-972a-351263c07e55, e838582d-641b-4672-9856-a86f6583fa99, 4e9f03e5-ef56-40e2-970b-e91a7204050c, 642f550c-8b7d-4848-aeae-356f0d387a5a, 730e91ee-7689-43c4-a86e-cfde54a1e364, 90df4183-5215-4895-80b6-927ad6296fbb, 944cd93c-6c31-44ca-a9c0-c3ea8291fcb2, 8e63ae79-8d04-4512-b5f0-a80dc7090bd1, 424fc4df-dfb7-4057-ba25-cc9f4d37612d, b6e452b4-348a-4b36-b98f-725a1a571a32, 3327184b-a8f2-4533-a49f-ab63d0a88631, 9447df75-269f-411e-9bca-d16b919e69e4, 8fabbc5a-5a80-4f5d-b1c3-66c57528a04e, 7c9d5447-c38c-4fea-b944-1b222eaedc1e, a611835e-6cd4-4611-bd28-9371da59acba, 37934db2-c910-47bd-8cc2-edb86fdbc862, 1072b9fd-42c1-4e78-bd7c-8c9c6d091e77, 9a14a0a4-45f1-493d-bcf6-f831e17a4d38, d3c792fc-a95e-459f-b425-75b15b533199, 89731527-f43e-4ecb-8f9f-6ecc86944fd8, 608320c5-58eb-4d41-8f8d-6f1ba1130b0a, a32f36e7-35cb-42d1-8cae-d1ebecc1122c, 98c77c9b-81f7-4004-9f3d-e98aff7eea33, 577add87-a42b-4742-b079-85f40f427327, 39b8f4ec-f692-4aca-ac47-dae06962bad0, 95b63cfa-dd68-4841-b6e4-2c9fed249e53, e472f220-b507-495f-a011-23d133c2665c, 4412f6e5-d149-42a2-aaf2-4e4a64343336, 1202d79d-d94d-45b2-a6f7-f74e303ab7d0, 5b1293b9-9543-4b0c-a7e2-88977aed7f7a, b408d672-3660-4daf-9700-d22964ac16cb, 9fb24d39-383d-45c1-bf31-768624aa9d91, 322c755a-9be6-473c-9f75-872d7fb9cc1c, d046fd05-2e32-4285-a2c8-f3c5d2a69040, 55de3a9b-b99e-4f72-9f00-baae486d9d29, 986977f5-2711-4bdd-9f7d-349c941b30cf, 3837ae58-8d74-4271-90e3-ef38ce061fdc, 0eb7edec-99b9-4427-8e92-c0a09dd07677, 23b24b78-e9ae-4596-8a90-0d0327139778'}]}"
"{'title': 'Vaccine Adverse Reactions data for QResearch', 'abstract': 'Adverse reactions occurring shortly after COVID_19 vaccination.', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '61ba059ac688870b12a4e05b', 'name': 'QResearch'}, 'keywords': ['COVID-19', 'Vaccination', 'National Core Study', 'NCS'], 'contactPoint': 'qresearch@phc.ox.ac.uk'}",9ad92ce4-7410-4edc-a5ac-2c0c64915f4c,"{'followup': '1 - 10 YEARS', 'pathway': 'COVID-19 vaccination centres and primary care', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-115', 'spatial': ['United Kingdom,England']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '2de14344-a145-4df2-a8f1-475ccf498f46', '2.0.0': '3c899660-32e3-4acc-9583-9d8251bd6f80', 'latest': '3c899660-32e3-4acc-9583-9d8251bd6f80'}",{'description': 'Adverse reactions occurring shortly after COVID_19 vaccination.'},3c899660-32e3-4acc-9583-9d8251bd6f80,https://web.www.healthdatagateway.org/dataset/3c899660-32e3-4acc-9583-9d8251bd6f80,"{'usage': {'investigations': ['https://www.qresearch.org/research/approved-research-programs-and-projects/'], 'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'dataUseRequirements': ['ETHICS APPROVAL REQUIRED', 'NOT FOR PROFIT USE'], 'resourceCreator': ['NHS Digital']}, 'formatAndStandards': {'language': ['en'], 'format': ['CSV', 'TSV', 'Stata', 'SQL Server Database'], 'conformsTo': ['NHS DATA DICTIONARY'], 'vocabularyEncodingScheme': ['SNOMED CT']}, 'access': {'dataProcessor': 'University of Oxford', 'deliveryLeadTime': '1-2 MONTHS', 'jurisdiction': ['GB-ENG'], 'accessService': 'Remote Desktop to dedicated Windows Server.\n\nStandard Server Spec:\n16GB RAM, 4 Logical Xeon Gold Processors, 200 GB HDD\n\nMax available Server Spec:\n512GB RAM, 72 Logical Xeon Gold Processors, 2TB HDD. Tesla V100 GPU', 'dataController': 'University of Oxford', 'accessRequestCost': ['https://www.qresearch.org/information/information-for-researchers/'], 'accessRights': ['https://www.qresearch.org/information/information-for-researchers/']}}","{'origin': {'collectionSituation': ['CLINIC', 'PRIMARY CARE', 'COMMUNITY'], 'source': ['EPR'], 'purpose': ['CARE']}, 'temporal': {'endDate': '2021-03-31', 'startDate': '1997-04-01', 'timeLag': 'MORE 6 MONTHS', 'accrualPeriodicity': 'MONTHLY', 'distributionReleaseDate': '2022-03-01'}}",2022-03-21T16:39:32Z,"[{'observationDate': '04/02/2022', 'measuredProperty': 'Count', 'measuredValue': '35047612', 'observedNode': 'EVENTS'}]",2.0.0,,2022-06-08T09:53:11Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 11, 'structuralMetadata.columnName': 11, 'structuralMetadata.columnDescription': 11, 'structuralMetadata.dataType': 11, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '5c3100af-511f-40df-bae2-d0bfe45e6d8c', 'description': 'vaccine adverse events', 'name': 'vaccine_adr', 'dataElementsCount': 11, 'dataElements': 'ccc2b83c-331b-4800-91c0-f2c43f58a7d8, f0e57160-0276-4c60-b009-8b51e1b3b626, f3ddc356-922b-466e-8a6d-a308030e2d60, c265ae4a-ae53-426d-8acc-510e457a2581, f888ba7c-27a5-4193-8adb-7a19bed00be4, 63eb3a7a-ce3a-43fe-8671-968e7f2039a2, b57b85fa-01fb-497e-a8c2-44468fbd760a, 531464b7-a666-4a27-a8d0-c8e6fbc8eaeb, f57f2c17-4da0-40a6-8cfa-1c5ba97fa438, ed50dd2d-7048-4ef9-a4f9-07b1346d1df3, e0ae7a20-5d4a-4c39-935e-bcf02a9cf056'}]}"
"{'title': 'North West London Outpatient Care Data (NWL OP)', 'publisher': {'name': 'DISCOVER NOW', 'contactPoint': 'researchers@registerfordiscover.org.uk', 'memberOf': 'HUB'}, 'contactPoint': 'researchers@registerfordiscover.org.uk', 'abstract': 'The NWL OP linked table is taken from the Secondary Users Service database which contains records of care administered in an OP setting within NWL. Some of the data items included are appointment dates, HRG codes, specialties and referral sources.', 'keywords': ['OP', 'Outpatient', 'Discover-NOW', 'Outpatient Care Data', 'Pathway', 'Real World data', 'Linked longitudinal'], 'doiName': 'In Progress'}",9f1df859-f1d0-4f1e-959e-affd05138a25,"{'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'NHS Brent CCG; NHS Central London CCG; NHS Ealing CCG; NHS Hammersmith &Fulham CCG; NHS Harrow CCG; NHS Hillingdon CCG; NHS Hounslow CCG; NHS West London CCG', 'pathway': 'This dataset contains all outpatient activity related to NWL patient population. Each patient would be identifiable using an unique patient key that can be used to link to other datasets, this will help track the patient pathway', 'followup': '> 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'4.0.0': '8cf1f0e9-10a6-4c59-824c-aca2f6dba670', '5.0.0': '3d51dc99-c44f-44ff-bdab-da205c5e394e', '3.0.0': '41a7adba-8771-46e2-8083-047d6a4cb877', '2.0.0': 'd8bb6401-dda6-409c-a655-dd76331650b7', '1.0.0': '02a8331a-7210-45b7-b4fe-b828d81a78c4', '0.0.1': '9a099fa2-1e6b-4491-aef5-81c8f6e17b8c', 'latest': '3d51dc99-c44f-44ff-bdab-da205c5e394e'}","{'description': ""When a patient or service user is treated or cared for, information is collected which supports their treatment. This information is also useful to commissioners and providers of NHS-funded care for 'secondary' purposes - purposes other than direct or 'primary' clinical care - such as:  Healthcare planning Commissioning of services National Tariff reimbursement Development of national policy SUS is a secure data warehouse that stores this patient-level information in line with national standards and applies complex derivations which support national tariff policy and secondary analysis.   Access to SUS is managed using Role-Based Access Control (RBAC) which grants appropriate access levels to identifiable or de-identified data based on the users job role.  The Secondary Users Service (SUS) database is made up of many data items relating to outpatient care delivered by NHS hospitals in England. Many of these items form part of the national Commissioning Data Set (CDS), and are generated by the patient administration systems within each hospital."", 'isPartOf': 'SUS', 'associatedMedia': ['https://imperialcollegehealthpartners.com/discover-now/north-west-london-covid-19-data-repository/', 'https://www.nwlondonccgs.nhs.uk/professionals/whole-systems-integrated-care-wsic-dashboards-and-information-sharing/information-de-identified-users']}",3d51dc99-c44f-44ff-bdab-da205c5e394e,https://web.www.healthdatagateway.org/dataset/3d51dc99-c44f-44ff-bdab-da205c5e394e,"{'formatAndStandards': {'vocabularyEncodingScheme': ['NHS NATIONAL CODES', 'ODS', 'ICD10'], 'language': 'en', 'format': ['Excel', 'SQL', 'Tableau', 'R'], 'conformsTo': 'LOCAL'}, 'usage': {'dataUseRequirements': ['COLLABORATION REQUIRED', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'isReferencedBy': ['Bottleet al. BMC Medical Informatics and Decision Making (2020) 20:71 https://doi.org/10.1186/s12911-020-1082-7'], 'resourceCreator': 'NHS Brent CCG\nDiscover-NOW', 'investigations': ['https://www.registerfordiscover.org.uk/researchers/discover-for-researchers-and-industry'], 'dataUseLimitation': 'NO RESTRICTION'}, 'access': {'deliveryLeadTime': '1-2 MONTHS', 'dataProcessor': 'NHS BRENT CCG', 'accessRights': ['https://imperialcollegehealthpartners.com/discover-now/nwl-covid-data-access/'], 'dataController': 'Joint data controller model across North West London', 'accessRequestCost': 'In Progress', 'accessService': ""Researchers will have access to a VDI environment with a specific username and password. The researchers will get access to the datasets that is present in the hub's catalogue and would be able to carry out their research within the safe haven. There are restrictions applied which prevents the researchers from taking data out of the safe haven, once the research/analysis is completed the admin team will need to be contacted for taking the analysis off the safe haven"", 'jurisdiction': 'GB'}}","{'temporal': {'accrualPeriodicity': 'MONTHLY', 'timeLag': '1-2 MONTHS', 'startDate': '2015-04-01', 'distributionReleaseDate': '2019-12-18'}, 'origin': {'purpose': ['CARE', 'ADMINISTRATIVE'], 'source': 'EPR', 'collectionSituation': 'OUTPATIENTS'}}",2020-01-10T17:02:14Z,"[{'observedNode': 'Persons', 'measuredValue': ' 1,667,778 ', 'disambiguatingDescription': '', 'observationDate': '2020-12-08', 'measuredProperty': 'Count'}]",5.0.0,"{'qualifiedRelation': ['Each patient will be identified by an unique patient key that can be used to link to all other datasets available within Discover-NOW hub'], 'derivation': ['Long Term Conditions Electronic Frailty Index Q-Admissions Patient Segments Risk 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"{'title': 'Ethical Tissue - University of Bradford', 'keywords': ['Dementia', 'Malignant prostate tumour', 'University of Bradford', 'Malignant oral cavity tumour', 'Malignant stomach tumour', 'Carcinoma in situ of liver', 'Malignant brain neoplasm', 'UKCRC Tissue Directory', 'Ethical Tissue', 'Malignant neoplasm of liver', 'Fit and well'], 'publisher': {'contactPoint': 'enquiries@ethicaltissue.org', 'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY'}, 'doiName': 'Not Available', 'contactPoint': 'enquiries@ethicaltissue.org', 'abstract': 'Samples & data for following: Carcinoma in situ of liver, Dementia ,Fit and well, Malignant brain neoplasm, Malignant neoplasm of liver, Malignant oral cavity tumour, Malignant prostate tumour, Malignant stomach tumour and others.\nFull list in Description'}",fdf9ac68-fc89-4adf-9a73-3a94a9974aef,"{'spatial': 'England', 'typicalAgeRange': '15-150', 'physicalSampleAvailability': ['PLASMA', 'PM TISSUE', 'TISSUE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '6e535e7c-0ceb-4666-9361-e75e9c4a97ca', '3.0.0': '3db58c78-fc8b-49b2-a847-b43fd0184500', '1.0.0': 'fceef436-80ff-4ba4-93d9-78b1d09861d0', '0.0.1': 'cd2badb7-6f80-4932-b3dc-c0ed4b00f71d', 'latest': '3db58c78-fc8b-49b2-a847-b43fd0184500'}","{'description': 'Ethical Tissue is a research tissue bank, licensed by the Human Tissue Authority (HTA); to collect, store and supply a wide range of human tissue, cells and fluids to biomedical research groups in academia and industry.  Also includes tissue donated after death.\nWe provide access to collection of samples and data across the following diseases: \n•\tCarcinoma in situ of liver\n•\tDementia (disorder)\n•\tFit and well\n•\tMalignant neoplasm of brain\n•\tMalignant neoplasm of liver\n•\tMalignant tumour of oral cavity (disorder)\n•\tMalignant tumour of prostate (disorder)\n•\tMalignant tumour of stomach (disorder)\n•\t,Malignant tumour of colon\n•\tMalignant tumour of lung\n•\tMalignant tumour of oesophagus', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",3db58c78-fc8b-49b2-a847-b43fd0184500,https://web.www.healthdatagateway.org/dataset/3db58c78-fc8b-49b2-a847-b43fd0184500,"{'access': {'dataController': 'University of Bradford', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'dataProcessor': 'Not Applicable', 'jurisdiction': 'GB-ENG', 'accessRequestCost': 'Not specified'}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2008-01-01'}}",2020-01-13T17:05:19Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T15:59:38Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Diagnostic Imaging Dataset', 'abstract': 'The Diagnostic Imaging Data Set (DID) collects data about diagnostic imaging tests carried out on NHS patients, \nextracted from local radiology information systems.', 'publisher': {'identifier': '5f86cd34980f41c6f02261f4', 'name': 'NHS DIGITAL', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'enquiries@nhsdigital.nhs.uk', 'keywords': ['Scan', 'Radiology', 'Diagnostic Image', 'X-Ray', 'Plain radiography', 'CAT', 'Computerized axial tomography', 'Fluoroscopy', 'MRI', 'Magnetic resonance imaging', 'NM', 'Nuclear medicine', 'US', 'Diagnostic ultrasonography', 'Ultrasound', 'Medical photography', 'PET scan', 'Positron emission tomography', 'SPECT', 'Single photon emission computerized tomography', 'Cone beam computed tomography', 'SNOMED', 'SNOMED CT', 'Systematized Nomenclature of Medicine Clinical Terms', 'NICIP', 'National Interim Clinical Imaging Procedure Code Set', 'RIS', 'radiology information system ', 'PACS', 'picture archiving and communication system', 'DIGITRIALS']}",86f46be3-bc29-4820-8363-de6530a94c6f,"{'followup': 'OTHER', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'DID data is submitted by secondary providers. It includes a number of fields indicating the patient pathway. For insurance, the Patient Source Setting field describes how a patient was referred to receive a diagnostic imaging test. Possible options are:\nAdmitted Patient Care - Inpatient (this Health Care Provider)\nAdmitted Patient Care - Day case (this Health Care Provider)\nOut-patient (this Health Care Provider)\nGP Direct Access\nAccident and Emergency Department (this Health Care Provider)\nOther Health Care Provider\nOther\nDID also includes fields indicating the individual and organisation that referred the patient. However, in some instances the latter is not always populated. Similarly, there are fields indicating the date a referral for diagnostic imaging was made and when it was received. As with the referring organisation, there are some instances when these are not populated.', 'spatial': 'http://www.geonames.org/6269131/england.html', 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'eb80104c-1292-49b7-9d18-58337353c4cc', '6.0.0': '3e4d27e2-baa8-4bb5-a711-d0b36f1f278c', '2.0.0': '7f841dc4-87ed-4048-b06b-1a1e9198b8c1', '4.0.0': '1a4a131d-a1aa-4de8-bebf-b755174cf525', '3.0.0': 'c2f15f59-8e0d-4e90-9277-342497a6d961', '5.0.0': '5d76d094-446d-4dcc-baa1-076095f30c23', 'latest': '3e4d27e2-baa8-4bb5-a711-d0b36f1f278c'}","{'description': 'The DID is a monthly collection of information about diagnostic imaging tests carried out on NHS patients in England which enables analysis of demographic and geographic variation in access to different test types and providers.\n\nThe dataset, collected at patient level, includes patient identifiers to enable linkage to other datasets, most notably cancer registration data.\n\nInformation from the DID may inform the accreditation processes for imaging departments through the UK Imaging Services Accreditation Scheme and the assessment of imaging services by the Care Quality Commission.\n\nThe dataset provides information on the utilisation of high value imaging equipment such as MRI scanners.\nInformation about diagnostic testing is being linked to cancer patient’s records held in Cancer Registries, expanding the understanding we have of their treatment pathway.\n\nFurther information can be found on the NHS Digital DID website.\n\nRelease Date - Aggregated data at Trust level is published the last Thursday of the month by NHS England on the DID webpage\n\niView - DID data is available to the DID user community and the DHSC via Community View in iView. \n\nThis data resource has been designed for professionals working with health and social care data on a regular basis.\n\nAccess to iView can be requested by contacting NHS Digital on 0300 303 5678 or enquiries@nhsdigital.nhs.uk', 'associatedMedia': ['https://did.hscic.gov.uk/', 'https://www.england.nhs.uk/statistics/statistical-work-areas/diagnostic-imaging-dataset/'], 'isPartOf': 'Diagnostic Imaging Dataset'}",3e4d27e2-baa8-4bb5-a711-d0b36f1f278c,https://web.www.healthdatagateway.org/dataset/3e4d27e2-baa8-4bb5-a711-d0b36f1f278c,"{'access': {'accessRights': ['https://digital.nhs.uk/services/data-access-request-service-dars', 'https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-sets/diagnostic-imaging-data-set', 'https://did.hscic.gov.uk/'], 'accessService': 'DID data are available via a range of services which can be applied for through the Data Access Request Service (DARS). \n\nPlease note we will only pause the elapsed time when we require further detail or approvals from an external provider are required.\n\niView\nDID data is also available to the DID user community and the Department of Health. via the Community View in iView. \n\nThis is a data resource has been designed for professionals working with health and social care data on a regular basis.\n\nAccess to iView can be requested by contacting NHS Digital on 0300 303 5678 or enquiries@nhsdigital.nhs.uk\nOnce a request has been received and approved and the invitation that is sent has been accepted, it usually takes 24 hours before iView is accessible.', 'accessRequestCost': ['https://digital.nhs.uk/services/data-access-request-service-dars/data-access-request-service-dars-charges'], 'jurisdiction': ['GB-ENG'], 'dataProcessor': 'Not Applicable', 'dataController': 'NHS Digital'}, 'usage': {'dataUseLimitation': ['NO RESTRICTION'], 'investigations': ['https://www.england.nhs.uk/statistics/statistical-work-areas/diagnostic-imaging-dataset/diagnostic-imaging-dataset-2019-20-data/'], 'resourceCreator': ['NHS Digital'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'NOT FOR PROFIT USE', 'USER SPECIFIC RESTRICTION']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['SNOMED CT', 'OTHER'], 'conformsTo': ['OTHER'], 'language': ['en'], 'format': ['text', 'csv', 'xml']}}","{'temporal': {'timeLag': '2-6 MONTHS', 'startDate': '2012-04-01', 'accrualPeriodicity': 'MONTHLY'}, 'origin': {'source': ['EPR', 'OTHER'], 'collectionSituation': ['CLINIC', 'OUTPATIENTS', 'IN-PATIENTS', 'COMMUNITY', 'PRIVATE', 'OTHER'], 'purpose': ['STUDY', 'DISEASE REGISTRY', 'CARE', 'AUDIT', 'ADMINISTRATIVE', 'FINANCIAL', 'OTHER']}}",2020-08-24T11:57:39Z,"[{'observedNode': 'PERSONS', 'measuredValue': '18479800', 'disambiguatingDescription': 'Diagnostic imaging events relating to the 6 month period April - Sept 2020', 'observationDate': '30/09/2020', 'measuredProperty': 'Count'}]",6.0.0,"{'qualifiedRelation': ['The data is linked to Hospital Episode Statistics, through the HES-DID linkage, on a monthly basis.  This enables users to analyse acute secondary care pathways for patients receiving diagnostic imaging tests in England. This analysis could help to identify trends and variation in patient outcomes and be used to improve services for patients. The linkage adheres to strict Information Governance procedures and customers have to make a formal application and sign a legally binding data sharing contract to access the data. The dataset contains the necessary information to make linkage to other datasets possible.  However there are no other datasets to which DID is currently routinely linked.'], 'tools': ['https://iview.hscic.gov.uk/'], 'derivation': ['Not Applicable']}",2021-05-10T13:39:34Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 29, 'structuralMetadata.tableName': 29, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 72, 'structuralMetadata.columnName': 72, 'structuralMetadata.columnDescription': 72, 'structuralMetadata.dataType': 72, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'bc9fb2ef-e88f-445e-a71b-b899cf83569f', 'name': 'Provider', 'dataElementsCount': 2, 'dataElements': 'd48bde0d-0bdd-46c5-bc41-15ad6e2ef5cc, cde6c5b7-b9cf-4ad5-8817-b55116970752'}, {'id': '0987db57-381c-47f8-a1e0-304d7a6771e8', 'name': 'Region', 'dataElementsCount': 2, 'dataElements': 'fe6eee25-e2d2-457d-9dac-c6d807b82607, 4cc2b910-762c-4161-8c08-2080cf0daf34'}, {'id': 'ccab15ff-93c9-437a-a321-e0aa8b10fb64', 'name': 'Diagnostic Test Dates', 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"{'title': 'CPRD GOLD ICNARC', 'keywords': ['Critical Care', 'Intensive Care', 'Patient', 'Care', 'COVID-19'], 'publisher': {'memberOf': 'ALLIANCE', 'name': 'CPRD', 'identifier': '607db9c2e1f9d3704d570cee'}, 'abstract': 'CPRD GOLD linked Intensive Care National Audit & Research Centre (ICNARC) COVID-19 dataset covers adult patients in general critical care units who had a laboratory confirmed COVID-19 case in England since 12th December 2019.', 'contactPoint': 'enquiries@cprd.com', 'doiName': 'https://doi.org/10.48329/9mhe-bm42'}",0e47bbf0-0d60-4c7c-85a5-543957635471,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Secondary care', 'spatial': ['https://www.geonames.org/6269131/england.html'], 'typicalAgeRange': '0-115', 'followup': '1 - 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '3e923281-bfde-48a8-86fd-73e429cce811'},"{'description': 'The Intensive Care National Audit & Research Centre (ICNARC) COVID-19 dataset covers adult patients (aged 18 years and over) in adult, general critical care units (intensive care and combined intensive care/high dependency units) who had a laboratory confirmed COVID-19 case in England since 12th December 2019.', 'isPartOf': 'CPRD GOLD', 'associatedMedia': ['https://www.cprd.com/linked-data']}",3e923281-bfde-48a8-86fd-73e429cce811,https://web.www.healthdatagateway.org/dataset/3e923281-bfde-48a8-86fd-73e429cce811,"{'formatAndStandards': {'format': ['Tab delimited text'], 'conformsTo': ['OTHER'], 'vocabularyEncodingScheme': ['OTHER'], 'language': ['en']}, 'access': {'jurisdiction': ['GB-ENG'], 'accessService': 'Access to CPRD data, including UK Primary Care Data, and linked data such as Hospital Episode Statistics, is subject to protocol approval via CPRD’s Research Data Governance (RDG) Process. Independent scientific and patient advice is provided by Expert Review Committees (ERCs) and the Central Advisory Committee (CAC): https://www.cprd.com/research-applications', 'dataProcessor': 'CPRD', 'accessRequestCost': ['https://www.cprd.com/pricing'], 'deliveryLeadTime': 'VARIABLE', 'accessRights': ['HTTPS://CPRD.COM/DATA-ACCESS'], 'dataController': 'Clinical Practice Research Datalink'}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE', 'NO LINKAGE', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'resourceCreator': ['ICNARC'], 'dataUseRequirements': ['GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'investigations': ['https://www.cprd.com/protocol-list']}}","{'origin': {'purpose': ['AUDIT'], 'collectionSituation': ['IN-PATIENTS'], 'source': ['EPR']}, 'temporal': {'timeLag': 'MORE 6 MONTHS', 'distributionReleaseDate': '2022-02-04', 'startDate': '2019-12-12', 'accrualPeriodicity': 'QUARTERLY', 'endDate': '2021-03-17'}}",2022-02-18T11:52:09Z,"[{'observedNode': 'PERSONS', 'measuredValue': 3149, 'disambiguatingDescription': 'Number of unique CPRD GOLD patients linked to ICNARC', 'observationDate': '04/02/2022', 'measuredProperty': 'Count'}]",1.0.0,"{'qualifiedRelation': ['CPRD GOLD', 'CPRD GOLD SGSS', 'CPRD GOLD CHESS', 'Death Registration data for CPRD GOLD', 'HES Admitted Patient Care data for CPRD GOLD', 'HES Outpatient data for CPRD GOLD', 'HES Accident and Emergency data for CPRD GOLD', 'HES Diagnostic Imaging Dataset for CPRD GOLD', 'Patient postcode linked deprivation measures for CPRD GOLD', 'Practice postcode linked deprivation measures for CPRD GOLD', 'Rural-Urban classification for CPRD GOLD', 'Cancer registration data for CPRD GOLD', 'National Radiotherapy Dataset (RTDS) for CPRD GOLD', 'Systemic Anti-Cancer Treatment (SACT) data for CPRD GOLD', 'Mental Health Dataset (MHDS) for CPRD GOLD', 'Mother-Baby Link for CPRD GOLD', 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"{'title': 'Higher Education Statistics Agency (HESA)', 'abstract': 'The Higher Education Statistics Agency (HESA) are the experts in UK higher education data and the designated data body for England.\n\nHESA collects, assures and disseminates data about higher education (HE) in the UK on behalf of our Statutory Customers.', 'publisher': {'identifier': '5f3f98068af2ef61552e1d75', 'memberOf': 'ALLIANCE', 'name': 'SAIL'}, 'doiName': 'http://doi.org/10.5255/UKDA-SN-8287-1', 'keywords': ['EDUCATION', 'HESA', 'core-res'], 'contactPoint': 'SAILDatabank@swansea.ac.uk'}",36f54a48-6f0a-4827-a86b-fd677a22a88f,"{'spatial': 'https://www.geonames.org/2634895/wales.html', 'typicalAgeRange': '0-150', 'pathway': 'Education', 'followup': '0 - 6 MONTHS', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '37f2fe47-6e36-4687-a16a-40b4f58a59de', '2.0.0': '3ed8d3fe-92a3-43bc-9fba-274fb34847af', 'latest': '3ed8d3fe-92a3-43bc-9fba-274fb34847af'}","{'description': 'HESA is the Designated Data Body (DDB) for higher education in England as defined by the Higher Education and Research Act 2017 (HERA). HESA was selected as the DDB by the Office for Students (OfS) following consultation with HE providers and sector bodies in 2018.\n\nHERA Sections 64 to 67 set out the duties of the DDB to compile, make available and publish higher education information, and the power of the DDB to charge fees. Schedule 6 sets out the process for designating a DDB and the arrangements for oversight by the OfS.', 'isPartOf': 'NOT APPLICABLE'}",3ed8d3fe-92a3-43bc-9fba-274fb34847af,https://web.www.healthdatagateway.org/dataset/3ed8d3fe-92a3-43bc-9fba-274fb34847af,"{'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['PROJECT SPECIFIC RESTRICTIONS'], 'resourceCreator': ['Higher Education Statistics Agency']}, 'access': {'dataProcessor': 'SAIL Databank', 'dataController': 'SAIL Databank', 'jurisdiction': ['GB-GB'], 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'deliveryLeadTime': '2-6 MONTHS', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'accessRights': ['https://saildatabank.com/application-process/']}, 'formatAndStandards': {'format': ['SQL Database'], 'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL']}}","{'temporal': {'timeLag': '2-6 MONTHS', 'accrualPeriodicity': 'ANNUAL', 'distributionReleaseDate': '2021-07-22', 'startDate': '2020-02-01', 'endDate': '2021-07-22'}, 'origin': {'purpose': ['STUDY'], 'source': ['EPR', 'OTHER INFORMATION SYSTEM'], 'collectionSituation': ['COMMUNITY']}}",2021-07-29T16:37:06Z,"[{'measuredValue': '3000000', 'measuredProperty': 'Count', 'observationDate': '22/07/2021', 'observedNode': 'PERSONS'}]",2.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Link to any SAIL dataset and reference data'], 'tools': ['https://conceptlibrary.saildatabank.com/']}",2021-10-05T16:27:59Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'mHealth for pneumonia prevention', 'publisher': {'memberOf': 'HUB', 'identifier': '607db9c2e1f9d3704d570ce6', 'name': 'BREATHE'}, 'abstract': 'We aimed to appraise the available literature on CHW based mHealth approaches for caregivers to improve knowledge and management about common childhood infections.', 'keywords': ['BREATHE', 'Pneumonia', 'mHealth', 'RESPIRE', 'Pakistan'], 'contactPoint': 'RESPIRE@ed.ac.uk'}",fc66381e-cc46-4bca-85fc-fc2ee09cc5dd,"{'typicalAgeRange': '0-5', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'https://www.geonames.org/1168579/islamic-republic-of-pakistan.html'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '8205cac7-44c9-4e1a-99e0-6987e44708e2', '2.0.0': '3ee4c2af-ff04-4dcf-830e-420e0a21a6d2', '0.0.1': '2542abf8-e50b-4962-9fa1-6dba1b7e8439', 'latest': '3ee4c2af-ff04-4dcf-830e-420e0a21a6d2'}","{'description': 'We aimed to appraise the available literature on CHW based mHealth approaches for caregivers to improve knowledge and management about common childhood infections and to develop a mobile application which lady health workers (LHWs) will use in their monthly visits to counsel caregivers on under five pneumonia.\n\nSouth Asian children are more at risk of dying due to infections attributed to highly prevalent deadly yet preventable childhood infections. Alongside concerns about the prevalence of these infections, there has been a renewed interest in involving community health workers (CHWs) in various public health programs. However, as CHWs are increasingly asked to take on different tasks there is a risk that their workload may become unmanageable. One approach to help reduce this burden is the use of mobile technology-based healthcare solutions (mHealth) in the community. We aimed to appraise the available literature on CHW based mHealth approaches for caregivers to improve knowledge and management about common childhood infections and to develop a mobile application which lady health workers (LHWs) will use in their monthly visits to counsel caregivers on inder five pneumonia.\n\nFor further information, see: https://www.ed.ac.uk/usher/respire/phd-studentships/hana-mahmood', 'isPartOf': 'BREATHE'}",3ee4c2af-ff04-4dcf-830e-420e0a21a6d2,https://web.www.healthdatagateway.org/dataset/3ee4c2af-ff04-4dcf-830e-420e0a21a6d2,"{'usage': {'resourceCreator': ['RESPIRE Collaboration'], 'isReferencedBy': ['Not Available']}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL'], 'format': ['text'], 'language': ['en']}, 'access': {'accessService': 'Access is managed on a project-by-project basis. Contact the RESPIRE team:', 'dataProcessor': 'RESPIRE', 'dataController': 'RESPIRE', 'jurisdiction': ['PK'], 'accessRights': ['https://www.ed.ac.uk/usher/respire/about/what-is-respire']}}","{'temporal': {'timeLag': 'NOT APPLICABLE', 'endDate': '2021-03-31', 'accrualPeriodicity': 'STATIC', 'startDate': '2018-04-01'}}",2020-08-05T18:30:36Z,"[{'observationDate': '31/03/2021', 'measuredProperty': 'Count', 'measuredValue': '1', 'observedNode': 'FINDINGS'}]",2.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-08-17T15:25:08Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
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"{'title': 'Outpatient Appointment Dataset', 'abstract': ""Nationaly defined dataset which ontaining administrative details on Outpatient appointments (attended, cancelled, DNA'ed) and some clinical coding of procedures using OPCS4"", 'contactPoint': 'surjeet.janjuha@nhs.net', 'publisher': {'name': 'BARTS HEALTH', 'identifier': '607db9c2e1f9d3704d570cde', 'memberOf': 'ALLIANCE'}}",1c27bfbf-c659-42ff-8afe-d58250b49c07,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '510e1782-1650-4342-9c20-185ca47f7b11', '4.0.0': '3f6962d8-1f4c-49b0-80a8-e491d5205827', '3.0.0': 'be0e737d-37a2-4af0-ac28-0bb7d3b49a52', 'latest': '3f6962d8-1f4c-49b0-80a8-e491d5205827'}","{'description': ""Nationaly defined dataset which ontaining administrative details on Outpatient appointments (attended, cancelled, DNA'ed) and some clinical coding of procedures using OPCS4"", 'isPartOf': 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"{'title': 'Barts Health NHS Trust COVID-19 EHR Extracted Dataset', 'publisher': {'name': 'BARTS HEALTH', 'contactPoint': 'BartsHealth.ResearchDataRequest@nhs.net', 'memberOf': 'ALLIANCE'}, 'keywords': ['COVID', 'COVID-19'], 'contactPoint': 'BartsHealth.ResearchDataRequest@nhs.net', 'abstract': 'The dataset is extracted from local EHR System containing demographics, administrative hospital encounter information, previous medical history (diagnoses and procedures), current symptoms and disease complications, clinical events.'}",d6e8163f-2ab8-4880-bbb6-a174b4a95632,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '1-120', 'spatial': 'https://www.geonames.org/2648110/greater-london.html', 'pathway': 'The dataset represents Hospital inpatient stays for COVID-19 infections but also includes data describing clinical contact in the Emergency Department and Outpatients.', 'followup': '6 - 12 MONTHS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '980580bb-9711-4c87-97f6-2c43c94e2728', '1.0.0': '3fbef1ac-fa6d-4c72-836d-3a8d8a0f7b08', 'latest': '3fbef1ac-fa6d-4c72-836d-3a8d8a0f7b08'}","{'description': 'The COVID-19 pandemic reached London in March 2020. Barts Health NHS Trust is a large academic health science centre based in east London and serving 2m people in 5 hospitals. As part of Barts Health’s response, we commenced enrolment of patients into 6 clinical trials prioritised by the National Institute for Health Research (NIHR) including ISARIC. The data collection for these trials has been primarily from electronic patient records (EPR), which vastly reduces manual data entry for the clinical trials teams.\n\nElectronic patient records are a rich source of administrative and clinical data. They contain patients’ laboratory results, vital signs, symptoms, procedures and diagnoses in a structured form, and further rich clinical and medication information in free text note form. We used Natural Language Processing (NLP) to identify medication and clinical terms then coded these in BNF and SNOMED CT respectively, for inclusion in analytics.', 'isPartOf': 'NOT APPLICABLE'}",3fbef1ac-fa6d-4c72-836d-3a8d8a0f7b08,https://web.www.healthdatagateway.org/dataset/3fbef1ac-fa6d-4c72-836d-3a8d8a0f7b08,"{'access': {'accessRequestCost': 'Cost Recovery Model', 'accessService': 'Access service for this dataset is currently being reviewed.', 'jurisdiction': 'GB', 'dataController': 'Barts Health NHS Trust', 'deliveryLeadTime': 'VARIABLE', 'dataProcessor': 'Not Applicable', 'accessRights': ['In Progress']}, 'formatAndStandards': {'language': 'en', 'format': ['CSV'], 'vocabularyEncodingScheme': ['LOCAL', 'ICD10', 'NHS NATIONAL CODES', 'OPCS4', 'SNOMED CT', 'OTHER'], 'conformsTo': 'NHS DATA DICTIONARY'}, 'usage': {'investigations': ['https://isaric.org/research/covid-19-clinical-research-resources/'], 'resourceCreator': 'Acknowledgements to Barts Health NHS for providing source datasets for curation of this dataset.', 'isReferencedBy': ['T. Crocker-Buque, S. Williams, A. R. Brentnall, et al. The Barts Health NHS Trust COVID-19 cohort: characteristics, outcomes and risk scoring of patients in East London. Int J Tuberc Lung Dis., 2021;May:in press.'], 'dataUseRequirements': ['ETHICS APPROVAL REQUIRED', 'GEOGRAPHICAL RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'PUBLICATION REQUIRED', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': 'GENERAL RESEARCH USE'}}","{'origin': {'purpose': ['AUDIT', 'CARE', 'DISEASE REGISTRY', 'STUDY', 'TRIAL'], 'collectionSituation': ['ACCIDENT AND EMERGENCY', 'CLINIC', 'IN-PATIENTS', 'OUTPATIENTS'], 'source': ['EPR', 'FREETEXT NLP']}, 'temporal': {'startDate': '2020-03-01', 'distributionReleaseDate': '2021-01-04', 'timeLag': 'NO TIMELAG', 'accrualPeriodicity': 'MONTHLY'}}",2021-04-06T16:27:45Z,,1.0.0,{'qualifiedRelation': ['Could be linked to other Barts Health Gateway Datasets Internally']},2021-04-09T12:33:26Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 15, 'structuralMetadata.tableName': 15, 'structuralMetadata.tableDescription': 15, 'structuralMetadata.dataElementsCount': 205, 'structuralMetadata.columnName': 205, 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"{'title': 'The impact of ethnicity and multi-morbidity on C19 hospitalised outcomes', 'abstract': 'A deeply phenotyped dataset of hospitalised COVID-19 patients in Birmingham; including granular ethnicity and multi-morbidity data confirmed in primary care; physiology, blood biomarkers, treatments, interventions, ITU admissions and outcomes.', 'publisher': {'contactPoint': 'Pioneer@UHB.NHS.UK', 'memberOf': 'HUB', 'name': 'PIONEER'}, 'contactPoint': 'Pioneer@UHB.NHS.UK', 'keywords': ['COVID', 'Ethnicity', 'Covid-19', 'Co-Morbidity', 'Co-Morbidities', 'Coronavirus', 'UHB', 'Birmingham', 'long term medical conditions', 'physiology', 'age', 'sex', 'vital signs', 'biomarkers', 'd-dimer', 'troponin', 'CRP', 'symptoms', 'severity', 'chest radiographs', 'pulmonary infiltrates', 'consolidation', 'computor tomography', 'outcomes', 'intensive care', 'ventilated', 'do not resusictate orders', 'primary care records', 'secondary care records', 'high flow nasal oxygen', 'treatments', 'antibiotics', 'secondary infections', 'outcomes', 'death', 'discharge', 'length of stay'], 'doiName': 'https://web.www.healthdatagateway.org/dataset/cfa1ef13-8ae0-4827-8a0f-9d2df5244725'}",cfa1ef13-8ae0-4827-8a0f-9d2df5244725,"{'pathway': 'Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.  A matched non-COVID control population can be generated upon request.', 'typicalAgeRange': '0-100', 'spatial': 'West Midlands Region, UK', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '527abefc-515f-491e-b01a-fe9485511647', '3.0.0': '3fc555e1-3e36-46dc-bef1-2d94d560bcb2', '0.0.1': '80165908-dcab-49a6-8e1c-31a10d4b4d2b', '1.0.0': '22e14c8d-9d92-4437-b39b-f69f7b033d13', 'latest': '3fc555e1-3e36-46dc-bef1-2d94d560bcb2'}","{'description': 'PIONEER:  The impact of ethnicity and multi-morbidity on COVID-related outcomes; a primary care supplemented hospitalised dataset\nDataset number 3.0\n\nCoronavirus disease 2019 (COVID-19) was identified in January 2020.  Currently, there have been more than 65million cases and more than 1.5 million deaths worldwide.  Some individuals experience severe manifestations of infection, including viral pneumonia, adult respiratory distress syndrome (ARDS) and death.  Evidence suggests that older patients, those from some ethnic minority groups and those with multiple long-term health conditions have worse outcomes.  This secondary care COVID dataset contains granular demographic and morbidity data, supplemented from primary care records, to add to the understanding of patient factors on disease outcomes. \n\nPIONEER geography\nThe West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix. There is a higher than average percentage of minority ethnic groups. WM has a large number of elderly residents but is the youngest population in the UK.  Each day >100,000 people are treated in hospital, see their GP or are cared for by the NHS. The West Midlands was one of the hardest hit regions for COVID admissions in both wave 1 and 2.\n\nEHR. University Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & 100 ITU beds. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.  UHB has cared for >5000 COVID admissions to date.  \n\nScope: All COVID swab confirmed hospitalised patients to UHB from January – May 2020.  The dataset includes highly granular patient demographics & co-morbidities taken from ICD-10 & SNOMED-CT codes but also primary care records and clinic letters.  Serial, structured data pertaining to care process (timings, staff grades, specialty review, wards), presenting complaint, acuity, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations), all blood results, microbiology, all prescribed & administered treatments (fluids, antibiotics, inotropes, vasopressors, organ support), all outcomes.  Linked images available (radiographs, CT, MRI, ultrasound). \n\nAvailable supplementary data:\nHealth data preceding and following admission event. Matched “non-COVID” controls; ambulance, 111, 999 data, synthetic data.\n\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.', 'associatedMedia': ['https://www.pioneerdatahub.co.uk/wp-content/uploads/COVID-ethnicity-and-multi-morbidity-Infographic.pdf'], 'isPartOf': 'NOT APPLICABLE'}",3fc555e1-3e36-46dc-bef1-2d94d560bcb2,https://web.www.healthdatagateway.org/dataset/3fc555e1-3e36-46dc-bef1-2d94d560bcb2,"{'usage': {'resourceCreator': 'This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)', 'dataUseRequirements': 'PROJECT SPECIFIC RESTRICTIONS', 'isReferencedBy': ['Sapey E, Gallier S, Mainey C All clinicians and students at University Hospitals Birmingham NHS Foundation Trust, et al  (2020) Ethnicity and risk of death in patients hospitalised for COVID-19 infection in the UK: an observational cohort study in an urban catchment area. doi: 10.1136/bmjresp-2020-000644. 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"{'title': 'Estimating Chronic Respiratory Disease burden in adults in Asian LMICs', 'publisher': {'name': 'BREATHE', 'memberOf': 'HUB', 'identifier': '607db9c2e1f9d3704d570ce6'}, 'abstract': 'Informed by a review of existing protocols used in Low and Middle-Income Countries to identify Chronic Respiratory Diseases, we will undertake a pilot survey to explore feasibility of using screening process in Bangladesh, India, Malaysia and Pakistan.', 'contactPoint': 'RESPIRE@ed.ac.uk', 'keywords': ['middle-income', 'Asia', 'COPD', 'asthma', 'Malaysia', 'RESPIRE', 'BREATHE', 'low-income']}",56130df6-1880-4600-a7a4-afa9a4bcc895,"{'spatial': ['https://www.geonames.org/1733045/malaysia.html'], 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'e6b66a6f-3f4a-4f88-9fdf-639220251693', '4.0.0': '3fd2760d-ab12-48ee-8b32-b229aead60a4', '2.0.0': '0150353c-d33d-4af0-b177-8ef0adf867f4', '3.0.0': 'b4519af8-7513-4695-9512-34f8e5c5dbc5', '0.0.1': '0f2acd6c-a774-46ec-9e73-bccc997073c5', 'latest': '3fd2760d-ab12-48ee-8b32-b229aead60a4'}","{'description': 'Informed by a scoping review of existing questionnaires and protocols used in Low- and Middle-Income Countries (LMICs) to identify Chronic Respiratory Diseasess, we will undertake a pilot survey to explore feasibility of using screening process in four countries (Bangladesh, India, Malaysia, and Pakistan). Our pilot findings will inform a future fully powered survey to determine the prevalence of asthma, COPD and other CRD in the community, using robust random sampling strategies, and quality assured spirometry undertaken by field workers.\n\nFor further details, see: https://www.ed.ac.uk/usher/respire/chronic-respiratory-disorders/estimating-chronic-respiratory-disease-burden', 'isPartOf': 'BREATHE'}",3fd2760d-ab12-48ee-8b32-b229aead60a4,https://web.www.healthdatagateway.org/dataset/3fd2760d-ab12-48ee-8b32-b229aead60a4,"{'usage': {'resourceCreator': ['RESPIRE Collaboration']}, 'access': {'jurisdiction': ['MY'], 'accessRights': ['https://www.ed.ac.uk/usher/respire/about/projects'], 'accessService': 'Access is managed on a project-by-project basis. Contact the RESPIRE team:', 'dataProcessor': 'RESPIRE', 'dataController': 'RESPIRE'}, 'formatAndStandards': {'format': ['text'], 'language': ['en'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL']}}","{'temporal': {'startDate': '2018-09-01', 'endDate': '2020-05-31', 'timeLag': 'NOT APPLICABLE', 'accrualPeriodicity': 'STATIC'}}",2020-09-22T09:48:54Z,[{}],4.0.0,,2021-08-27T10:38:17Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Domiciliary Social Care Worker [DSCW]', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'SAIL', 'contactPoint': 'SAILDatabank@swansea.ac.uk'}, 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'keywords': ['SAIL', 'care', 'social care', 'care worker'], 'abstract': 'Domiciliary care workers provide care and support for individuals in their own homes. 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"{'title': 'Care-seeking practices for childhood pneumonia in non/tribal areas of Pune India', 'publisher': {'memberOf': 'HUB', 'name': 'BREATHE', 'contactPoint': 'RESPIRE@ed.ac.uk'}, 'contactPoint': 'RESPIRE@ed.ac.uk', 'keywords': ['pneumonia', 'India', 'practices', 'care-seeking', 'RESPIRE', 'children', 'BREATHE'], 'abstract': 'The doctoral thesis aims to determine care-seeking practices and identify influencing factors of and barriers to care-seeking for pneumonia in children aged between 2-59 months residing in tribal and non-tribal rural areas in Pune district, India.'}",4346676d-6108-47de-b579-6cef74c6acef,"{'typicalAgeRange': '2-59 months', 'spatial': 'India', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '561b8a79-6bac-4ffc-91f4-0bbec4e90968', '1.0.0': '41ac5dfd-7b23-4f1b-a91e-03e8186e4ab8', 'latest': '41ac5dfd-7b23-4f1b-a91e-03e8186e4ab8'}","{'description': 'The doctoral thesis aims to determine care-seeking practices and identify influencing factors of and barriers to care-seeking for pneumonia in children aged between 2-59 months residing in tribal and non-tribal rural areas in Pune district, India.\n\nFor further information, see: https://www.ed.ac.uk/usher/respire/phd-studentships/sudipto-roy', 'isPartOf': 'BREATHE'}",41ac5dfd-7b23-4f1b-a91e-03e8186e4ab8,https://web.www.healthdatagateway.org/dataset/41ac5dfd-7b23-4f1b-a91e-03e8186e4ab8,"{'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'conformsTo': ['LOCAL']}, 'access': {'accessRights': 'Access is managed on a project-by-project basis. Contact the RESPIRE team: https://www.ed.ac.uk/usher/respire/about/projects', 'jurisdiction': 'IN', 'dataProcessor': 'RESPIRE', 'dataController': 'RESPIRE', 'deliveryLeadTime': 'OTHER'}, 'usage': {'resourceCreator': 'RESPIRE Collaboration'}}","{'temporal': {'startDate': '2018-04-01', 'endDate': '2021-03-31'}}",2020-08-25T15:25:55Z,,1.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-04-14T08:27:30Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Quality of Life of Colorectal Cancer Survivors: Patient Reported Outcomes (Aurum', 'keywords': ['Cancer Survivor', 'Quality of Life'], 'publisher': {'contactPoint': 'enquiries@cprd.com', 'name': 'CPRD', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'enquiries@cprd.com', 'abstract': 'CPRD Aurum linked Quality of Life of Colorectal Cancer Survivors in England survey (QOLC) data contain patient recorded outcomes from samples of cancer survivors with colorectal cancer diagnosed between 2010 and 2011.'}",bfb90d2b-746d-44a6-a896-4979d73d9276,"{'spatial': 'England', 'pathway': 'Cancer registration data are collected from a range of health care provider systems and other services.', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-115', 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'5.0.0': '02f0394f-eb36-46cf-a764-3663ca78e115', '6.0.0': '41ce265a-c252-45c4-9b80-d764b0737f38', '4.0.0': 'a772b8dd-cb93-4f27-a349-329992e0b212', '3.0.0': 'e01a2d99-a571-4792-bdc7-7708ea9863e5', '2.0.0': 'c1f1dfc7-60b6-484a-8536-063e5e7bcc3c', '1.0.0': 'e434140f-b5ec-4b77-a9fb-9ab57b778bc8', '0.0.1': '3c7395b9-823b-479b-85be-97de61f8a666', 'latest': '41ce265a-c252-45c4-9b80-d764b0737f38'}","{'description': 'CPRD Aurum linked Quality of Life of Colorectal Cancer Survivors in England: Patient Reported Outcome Measures (PROMs) survey, is a national survey that was commissioned by the Department of Health as a follow-on from the pilot study in July 2011 undertaken to confirm the value of collecting PROMs data on breast, prostate, colorectal and non-Hodgkin’s lymphoma. 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"{'title': 'National Asthma and COPD Audit (NACAP): secondary care  – CYP asthma (clinical)', 'contactPoint': 'DataSharing@hqip.org.uk', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'HQIP', 'identifier': '607db9c4e1f9d3704d570d23'}, 'keywords': ['Audit', 'NACAP', 'Asthma', 'COPD', 'Secondary Care workstream', 'Children and Young People', 'Asthma', 'Clinical'], 'abstract': 'A continuously ascertained, record level dataset of paediatric patients aged 1-18 years admitted to hospital in England, Wales and Scotland  since June 2019 with an asthma attack. \xa0'}",33b36393-3760-40d8-bb98-61806fea5398,"{'followup': '0 - 6 MONTHS', 'spatial': ['https://www.geonames.org/2634895/wales.html', 'https://www.geonames.org/6269131/england.html'], 'typicalAgeRange': '1-18', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'All children aged 1-18 years old who have been admitted to hospital (paediatric ward) with a primary diagnosis of asthma attack and coded with the following ICD-10 codes in the primary position of the first episode of care:\n\nJ45.0 – Predominantly allergic asthma\nJ45.1 – Nonallergic asthma\nJ45.8 – Mixed asthma\nJ45.9 – Asthma, unspecified\nJ46 – Status asthmaticus (includes  acute severe asthma'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '425e39b4-cc2b-4a15-851a-a0093ef1e1f8'},"{'description': 'A continuously ascertained, record level dataset of paediatric patients aged 1-18 years admitted to hospital in England, Wales and Scotland since June 2019 with an asthma attack.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)', 'associatedMedia': ['https://www.hqip.org.uk/a-z-of-nca/national-asthma-and-copd-audit-programme-nacap/']}",425e39b4-cc2b-4a15-851a-a0093ef1e1f8,https://web.www.healthdatagateway.org/dataset/425e39b4-cc2b-4a15-851a-a0093ef1e1f8,"{'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['ICD10', 'OTHER'], 'conformsTo': ['LOCAL'], 'format': ['Excel', 'CSV']}, 'access': {'deliveryLeadTime': 'VARIABLE', 'accessRequestCost': ['https://www.rcplondon.ac.uk/projects/outputs/national-asthma-and-copd-audit-programme-nacap-resources', 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'jurisdiction': ['GB-EAW'], 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England', 'accessRights': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data', 'https://www.rcplondon.ac.uk/projects/outputs/national-asthma-and-copd-audit-programme-nacap-resources'], 'dataProcessor': 'Crown Informatics Limited (patient identifiable information)\nRoyal College of Physicians (RCP), NACAP team (service level aggregated data only)\nImperial College London (service level aggregated dat only)'}, 'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'resourceCreator': ['Data has been provided by the Healthcare Quality Improvement Partnership from the National Asthma and COPD Audit Programme'], 'dataUseLimitation': ['NO RESTRICTION']}}","{'temporal': {'timeLag': 'VARIABLE', 'accrualPeriodicity': 'CONTINUOUS', 'startDate': '2019-06-01'}, 'origin': {'source': ['ELECTRONIC SURVEY'], 'collectionSituation': ['IN-PATIENTS', 'ACCIDENT AND EMERGENCY'], 'purpose': ['AUDIT']}}",2021-11-12T10:13:22Z,"[{'observedNode': 'PERSONS', 'measuredValue': 8506, 'disambiguatingDescription': 'CYP admitted and included in the dataset', 'observationDate': '24/06/2021', 'measuredProperty': 'count'}]",5.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Data linked with that from other custodians may be available, but the release of linked data will be subject to separate permission of all relevant data controllers']}",2021-11-12T10:13:22Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 31, 'structuralMetadata.columnName': 31, 'structuralMetadata.columnDescription': 31, 'structuralMetadata.dataType': 31, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '91e2ca72-da5f-4385-89ca-6c4488d4db9f', 'description': 'Data fields for children and young people asthma clinical audit dataset - 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"{'title': 'Cystic Fibrosis Patient Microbiology Cultures', 'doiName': '10.1093/ije/dyx196', 'keywords': ['Microbiology samples', 'CYSTIC FIBROSIS', 'Culture samples'], 'publisher': {'memberOf': 'ALLIANCE', 'name': 'CYSTIC FIBROSIS TRUST', 'contactPoint': 'registry@cysticfibrosis.org.uk'}, 'contactPoint': 'registry@cysticfibrosis.org.uk', 'abstract': 'The UK Cystic Fibrosis Registry Culture is made up of many data items relating to microbiology and cultures grown from samples taken during CF patient encounters at NHS hospitals in UK.'}",9c1727f6-2032-413f-bf60-470769b2616e,"{'spatial': 'UK', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'5.0.0': 'd0468470-a88f-4692-a19d-c9ac0b9868f3', '6.0.0': '42ac7c27-a37b-4081-8a33-51ac077e6a4e', '4.0.0': '52d42194-4e48-4c53-a7bb-fb7d484540f2', '3.0.0': '4d6c18fc-54c6-41f1-a7a9-76289c2f4194', '0.0.1': '945b2b4d-5445-4e4e-b73f-eb11ee0a182d', '1.0.0': '0eb6656f-4d67-4110-87fb-ecf371fd91c7', '2.0.0': '64344861-f1aa-4a65-8f2b-75dfc38facce', 'latest': '42ac7c27-a37b-4081-8a33-51ac077e6a4e'}","{'description': ""The UK CF Registry is a centralised database of all 60 CF centres across the UK. 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"{'title': 'Covid-19 Infection Survey linked with VOA and EPC data', 'abstract': 'The purpose of this dataset is to understand the prevalence of COVID-19 in the UK population, including swab results, antibody tests and demographic information.', 'publisher': {'name': 'OFFICE FOR NATIONAL STATISTICS', 'identifier': '5fc12be363eaab9e68dae76e', 'memberOf': 'NCS'}, 'contactPoint': 'srs.customer.support@ons.gov.uk', 'keywords': ['health', 'COVID-19', 'National Core Study', 'NCS', 'household']}",2193ad56-6671-4ecc-9ecf-6da84e23e9fd,"{'pathway': 'NOT APPLICABLE', 'followup': 'UNKNOWN', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '4330b6ee-f333-4cd8-90b9-0f43f7cb0b67'},"{'description': 'The purpose of this dataset is to understand the prevalence of COVID-19 in the UK population, including swab results, antibody tests and demographic information. 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Most datasets are available to access through remote access to the SRS. 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"{'title': 'Welsh Ambulance Services NHS Trust', 'abstract': 'The Welsh Ambulance Services NHS Trust data covers data pertaining to more than 250,000 emergency calls a year, over 50,000 urgent calls and transport over 1.3 million non-emergency patients to over 200 treatment centres throughout England and Wales.', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'SAIL', 'contactPoint': 'SAILDatabank@swansea.ac.uk'}, 'keywords': ['Emergency', 'Ambulance', 'SAIL', 'NCS', 'National Core Study', 'COVID-19'], 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'doiName': 'In Progress'}",d415a5c5-8432-4a81-937f-12135ade6de7,"{'pathway': 'All emergency services pathways', 'followup': 'OTHER', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150', 'spatial': 'Wales'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'b8e0b4a8-aab6-47fc-ac6f-76cd5cdc933d', '2.0.0': '45499ef9-daca-4a88-8493-c3c1a92960d0', '0.0.1': '3b3d9ab1-e896-4ccc-a679-2414ced68590', 'latest': '45499ef9-daca-4a88-8493-c3c1a92960d0'}","{'description': 'The ambulance services statistics show monthly data for Wales on the number of calls and the time taken to respond to an incident. Information is available by Local Health Board (LHB) and for Wales. The latest and past versions of the release are available on the ambulance services page. Since April 2014, Local Health Boards have been responsible for providing emergency ambulance services (999 calls) for their local residents; the Welsh Ambulance Services NHS Trust (WAST) is commissioned to deliver emergency ambulance services on their behalf.\n\nThere are two categories of ambulance service:\nEmergency Medical Services (EMS) - the Emergency Medical Service deals with emergency and\nurgent cases, and is accessed by dialling 999; and\nPatient Care Services (PCS) – provides transport for patients to a variety of planned hospital\nappointments and outpatient clinics.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/'], 'isPartOf': 'NOT APPLICABLE'}",45499ef9-daca-4a88-8493-c3c1a92960d0,https://web.www.healthdatagateway.org/dataset/45499ef9-daca-4a88-8493-c3c1a92960d0,"{'formatAndStandards': {'conformsTo': 'LOCAL', 'format': ['SQL database table'], 'vocabularyEncodingScheme': 'LOCAL', 'language': 'en'}, 'access': {'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'deliveryLeadTime': '2-6 MONTHS', 'dataController': 'Welsh Ambulance Services NHS Trust', 'dataProcessor': 'Welsh Ambulance Services NHS Trust', 'jurisdiction': 'GB', 'accessRequestCost': 'Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.', 'accessRights': ['https://saildatabank.com/application-process/']}, 'usage': {'dataUseRequirements': 'PROJECT SPECIFIC RESTRICTIONS', 'dataUseLimitation': ['GENERAL RESEARCH USE', 'RESEARCH SPECIFIC RESTRICTIONS'], 'resourceCreator': 'Welsh Ambulance Services NHS Trust', 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/']}}","{'origin': {'collectionSituation': ['PRIMARY CARE', 'ACCIDENT AND EMERGENCY', 'HOME'], 'purpose': ['STUDY', 'ADMINISTRATIVE'], 'source': 'ELECTRONIC SURVEY'}, 'temporal': {'startDate': '2013-04-01', 'distributionReleaseDate': '2013-04-01', 'accrualPeriodicity': 'QUARTERLY', 'timeLag': '1-2 MONTHS', 'endDate': '2019-08-29'}}",2020-09-10T12:22:54Z,,2.0.0,"{'qualifiedRelation': ['Yes. To any SAIL dataset & reference data.'], 'tools': ['https://conceptlibrary.saildatabank.com/'], 'derivation': ['Not Available']}",2021-04-09T18:33:32Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 5, 'structuralMetadata.tableName': 5, 'structuralMetadata.tableDescription': 5, 'structuralMetadata.dataElementsCount': 315, 'structuralMetadata.columnName': 315, 'structuralMetadata.columnDescription': 315, 'structuralMetadata.dataType': 315, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '3418c0f0-4684-446f-9a81-9c77b9921eeb', 'description': 'Non Clinical information pertaining to the transport time, and other conveyance metrics recorded during emergency response.', 'name': 'NONCONVY_CLINICAL', 'dataElementsCount': 30, 'dataElements': '0c056fd8-34b1-49a0-9af5-bbdb7d202964, b8b8f31a-77e3-41ee-9fb8-06d06e69da8a, 3e12dd84-0f24-4ed4-9c41-fc38e08a2e9c, 0cdb0924-cb9b-498f-8702-ee9e4892fdff, 0f107416-839e-45ac-bbe8-a1cff0b86722, 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"{'title': 'Asthma and COPD: practices and perceptions of GPs in rural India', 'abstract': 'This project aims to work with primary care doctors in the Pune district in India, to determine their thoughts on the diagnosis and management of lung conditions.', 'keywords': ['GP', 'primary care physicians', 'management', 'public', 'India', 'COPD', 'practices', 'general medical practitioners', 'perceptions', 'asthma', 'diagnosis', 'RESPIRE', 'rural', 'BREATHE', 'private'], 'publisher': {'memberOf': 'HUB', 'contactPoint': 'RESPIRE@ed.ac.uk', 'name': 'BREATHE'}, 'contactPoint': 'RESPIRE@ed.ac.uk'}",c15bc3ad-c053-496b-863f-1d54075d5bd4,"{'typicalAgeRange': '>18', 'spatial': 'India', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '184b973d-ac38-4fc5-8203-f2a244574b4f', '1.0.0': '458d7f2d-9ba8-4593-862c-14160692d494', 'latest': '458d7f2d-9ba8-4593-862c-14160692d494'}","{'description': 'This datasets contains quantitative and qualitative data. Quantitative data is collected from GPs practising in study area to understand their qualification and type of practice and their involvement in asthma & COPD diagnosis and management. Qualitative data is collected from few GPs (using in depth interview tools) in study area who has good experience about diagnosis and management of asthma & COPD. Their perceptions and practices about their clinical practice are documented.\n\nLong-term lung conditions, such as asthma and chronic obstructive pulmonary disease (COPD), are very common and can affect people’s well-being, and ability to work and care for their families.\n\nRespiratory symptoms are common but weak primary health care systems in resource-poor countries are often unable to diagnose the underlying disease condition, leading to inappropriate treatment. A lack of diagnosis also means the true burden of the disease is not appreciated.\n\nTo improve treatment of these conditions, we first need to understand how primary care doctors (who provide the majority of healthcare for rural populations in India) diagnose and treat people with chest symptoms, what makes it difficult for them to provide good care and how they think care can be improved.\n\nTo work with primary care doctors in the Pune district in India, to determine their thoughts on the diagnosis and management of lung conditions.\n\nFor further information, see: https://www.ed.ac.uk/usher/respire/respire-fellowships/dhiraj-agarwal', 'isPartOf': 'BREATHE'}",458d7f2d-9ba8-4593-862c-14160692d494,https://web.www.healthdatagateway.org/dataset/458d7f2d-9ba8-4593-862c-14160692d494,"{'access': {'dataProcessor': 'RESPIRE', 'accessRights': 'Access is managed on a project-by-project basis. Contact the RESPIRE team: https://www.ed.ac.uk/usher/respire/about/projects', 'dataController': 'RESPIRE', 'jurisdiction': 'IN', 'deliveryLeadTime': 'OTHER'}, 'usage': {'resourceCreator': 'RESPIRE Collaboration'}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'format': ['CSV/Word/Audio files']}}","{'temporal': {'startDate': '2019-10-01', 'endDate': '2021-03-01'}}",2020-09-02T12:50:59Z,,1.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-04-14T08:27:42Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Public Health Research Database (PHRD)', 'contactPoint': 'srs.customer.support@ons.gov.uk', 'publisher': {'memberOf': 'NCS', 'name': 'OFFICE FOR NATIONAL STATISTICS', 'identifier': '5fc12be363eaab9e68dae76e'}, 'abstract': '2011 Census data for England and Wales, linked to Mortality Data, Hospital Episode Statistics (HES) data, and GP Extraction Service (GPES) data for Pandemic Planning and Research Data.', 'keywords': ['NCS', 'COVID-19', 'Census', 'mortality', 'ethnicity', 'religion', 'disabilities', 'National Core Study']}",a325f33e-bac8-49af-896f-1e025941dae8,"{'pathway': 'NOT APPLICABLE', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/6269131', 'https://www.geonames.org/2634895'], 'typicalAgeRange': '0-150', 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.4': 'c425c244-3406-4914-acf5-b471b4891ced', '6.0.0': '459387f3-c484-441d-9abb-b6ee22df86d2', '2.0.0': 'd2166943-ba2c-479e-b400-4fe3291d67e9', '1.0.0': '11aa5ae7-fdde-440e-b9d9-833121d5f4c5', '5.0.0': '5de4bedb-32a9-4a66-9c92-5987453794f1', 'latest': '459387f3-c484-441d-9abb-b6ee22df86d2'}","{'description': 'The Public Health Research Database (PHRD) is a linked asset which currently includes Census 2011 data; Mortality Data; Hospital Episode Statistics (HES); GP Extraction Service (GPES) Data for Pandemic Planning and Research data. Researchers may apply for these datasets individually or any combination of the current 4 datasets.\n\nThe purpose of this dataset is to enable analysis of deaths involving COVID-19 by multiple factors such as ethnicity, religion, disability and known comorbidities as well as age, sex, socioeconomic and marital status at subnational levels. 2011 Census data for usual residents of England and Wales, who were not known to have died by 1 January 2020, linked to death registrations for deaths registered between 1 January 2020 and 8 March 2021 on NHS number. The data exclude individuals who entered the UK in the year before the Census took place (due to their high propensity to have left the UK prior to the study period), and those over 100 years of age at the time of the Census, even if their death was not linked. The dataset contains all individuals who died (any cause) during the study period, and a 5% simple random sample of those still alive at the end of the study period. For usual residents of England, the dataset also contains comorbidity flags derived from linked Hospital Episode Statistics data from April 2017 to December 2019 and GP Extraction Service Data from 2015-2019.'}",459387f3-c484-441d-9abb-b6ee22df86d2,https://web.www.healthdatagateway.org/dataset/459387f3-c484-441d-9abb-b6ee22df86d2,"{'usage': {'dataUseRequirements': ['ETHICS APPROVAL REQUIRED', 'NOT FOR PROFIT USE', 'PROJECT SPECIFIC RESTRICTIONS', 'PUBLICATION REQUIRED'], 'resourceCreator': ['Office for National Statistics'], 'dataUseLimitation': ['RESEARCH USE ONLY']}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'format': ['SQL'], 'vocabularyEncodingScheme': ['LOCAL']}, 'access': {'jurisdiction': ['GB-GB'], 'accessService': 'The Office for National Statistics Secure Research Service (SRS) gives accredited researchers secure access to de-identified, unpublished data in order to work on research projects for the public good.   Most datasets are available to access through remote access to the SRS. In some instances, the data can only be accessed from an approved safe setting. \n For more information,visit: https://www.ons.gov.uk/aboutus/whatwedo/statistics/requestingstatistics/approvedresearcherscheme', 'accessRights': ['https://www.ons.gov.uk/aboutus/whatwedo/statistics/requestingstatistics/approvedresearcherscheme'], 'accessRequestCost': ['Available at no cost at the point of use'], 'dataProcessor': 'Office for National Statistics', 'dataController': 'Office for National Statistics'}}","{'origin': {'purpose': ['ADMINISTRATIVE', 'OTHER'], 'collectionSituation': ['OTHER'], 'source': ['OTHER']}, 'temporal': {'timeLag': '2-6 MONTHS', 'startDate': '2020-01-01', 'distributionReleaseDate': '2021-02-01', 'accrualPeriodicity': 'IRREGULAR'}}",2021-04-08T14:55:28Z,"[{'observedNode': 'PERSONS', 'measuredValue': '7156861', 'observationDate': '07/05/2021', 'measuredProperty': 'Count', 'disambiguatingDescription': 'Finalised dataset – 4,045,162 observations (All deaths from 2011 – 2019)\nProvisional dataset – 3,111,699 observations (All death between 20200101 and 20210308, plus a 5% sample of the living population)'}]",6.0.0,,2022-01-26T14:39:46Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 4, 'structuralMetadata.tableName': 4, 'structuralMetadata.tableDescription': 4, 'structuralMetadata.dataElementsCount': 142, 'structuralMetadata.columnName': 142, 'structuralMetadata.columnDescription': 142, 'structuralMetadata.dataType': 142, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '7416a2de-f063-43f8-93c9-999250dcf723', 'description': 'Census 2011', 'name': 'Census 2011', 'dataElementsCount': 43, 'dataElements': '70322068-c725-40ae-838a-a2127aa64575, 43e7bd54-fe4f-4fea-8128-d5e898c9f66f, 879a9550-d154-46f5-9df7-674e6ea17a45, 11e938ab-7943-4c2e-845c-4b888e9ed09a, 1e5f8067-d850-45c9-8de9-942fd5fa3a02, 039682dd-1bfb-40ea-9d10-f34111fba6d7, d83f1492-d1eb-4f6e-8cc8-b7db168fffcd, b0c3c327-b348-4065-8cc6-89628a28ecfa, 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"{'title': 'Maternity Indicators Dataset', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'publisher': {'name': 'SAIL', 'memberOf': 'ALLIANCE', 'contactPoint': 'SAILDatabank@swansea.ac.uk'}, 'abstract': 'The Maternity Indicators Data Set captures data relating to the woman at initial assessment and to mother and baby (or babies) for all births. 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"{'title': 'Developing and Evaluating Interventions to Improve Asthma Care', 'publisher': {'name': 'BREATHE', 'memberOf': 'HUB', 'identifier': '607db9c2e1f9d3704d570ce6'}, 'keywords': ['practice', 'asthma', 'Malaysia', 'RESPIRE', 'patients', 'BREATHE'], 'abstract': 'This project aims to develop and evaluate interventions at patient and practice level to improve asthma care.', 'contactPoint': 'RESPIRE@ed.ac.uk'}",d57d7956-d13e-49c4-bb31-889b8e560596,"{'typicalAgeRange': '0-5', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/1733045/malaysia.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '0e8546e9-c841-4a99-a3f8-bb9020c6782c', '2.0.0': '46f6e0d3-412e-4799-8683-1ca649b99eec', '1.0.0': '29faeb72-2de1-4838-a7f7-d781d9af2e7e', 'latest': '46f6e0d3-412e-4799-8683-1ca649b99eec'}","{'description': 'Asthma is one the most prevalent non-communicable chronic disease among children and adults in Malaysia. It is, however, neglected. Most patients have poor knowledge about asthma and despite the availability of effective treatment, asthma control is reported to be unsatisfactory. Disease management and prevention is suboptimal and has an impact on the economic burden. As not much is known about what actually contributes to poor asthma control in our region, improving understanding on factors related to disease burden could contribute significantly to improved asthma morbidity. The aim of this project is to develop a cohort of adults and children with asthma in Klang district in Malaysia to enable epidemiology, disease management and economic burden of asthma to be studied and interventions directed at patients and health care practice level to be carried out to improve asthma care. \n\nFor further information, see: https://www.ed.ac.uk/usher/respire/chronic-respiratory-disorders/asthma-care', 'isPartOf': 'BREATHE', 'associatedMedia': ['https://www.ed.ac.uk/usher/respire/chronic-respiratory-disorders/asthma-care']}",46f6e0d3-412e-4799-8683-1ca649b99eec,https://web.www.healthdatagateway.org/dataset/46f6e0d3-412e-4799-8683-1ca649b99eec,"{'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'conformsTo': ['LOCAL'], 'format': ['text']}, 'access': {'dataController': 'RESPIRE', 'jurisdiction': ['MY'], 'dataProcessor': 'RESPIRE', 'accessRights': ['https://www.ed.ac.uk/usher/respire/about/projects'], 'accessService': 'Access is managed on a project-by-project basis. Contact the RESPIRE team:'}, 'usage': {'resourceCreator': ['RESPIRE Collaboration']}}","{'temporal': {'timeLag': 'NOT APPLICABLE', 'startDate': '2019-04-22', 'endDate': '2021-03-31', 'accrualPeriodicity': 'STATIC'}}",2020-09-22T09:51:42Z,[{}],2.0.0,,2021-08-27T09:52:21Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Sentinel Stroke National Audit Programme Acute Organisational survey dataset', 'contactPoint': 'DataSharing@hqip.org.uk', 'keywords': ['Acute Organisational Survey', 'Sentinel', 'SSNAP', 'Stroke', 'Audit'], 'publisher': {'contactPoint': 'DataSharing@hqip.org.uk', 'name': 'HQIP', 'memberOf': 'ALLIANCE'}, 'abstract': 'The acute organisational audit dataset includes the quality of stroke service organisation in acute settings, including staffing levels, acute care processes, TIA services, access to specialist support and communication with patients and carers.'}",fe6a4c83-f46f-4f61-8460-e120fdf8d864,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'fea3251c-3daa-4ac6-9974-81d9473c0454', '3.0.0': '4710222c-9830-4ae4-8be6-b25c723812e1', '1.0.0': '2468d92f-1931-4f7d-8e78-35fd73d9d661', '2.0.0': 'c3d84dfa-fe3a-4b86-a0f5-efbe45aa93ad', 'latest': '4710222c-9830-4ae4-8be6-b25c723812e1'}","{'description': 'The acute organisational audit dataset is refreshed biennially and includes the quality of stroke service organisation in acute settings by ascertaining staffing levels, acute care processes, TIA (mini stroke) services, access to specialist support and communication with patients and carers. Surveys were undertaken in England and Wales in 2012,2014, 2016 and 2019.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",4710222c-9830-4ae4-8be6-b25c723812e1,https://web.www.healthdatagateway.org/dataset/4710222c-9830-4ae4-8be6-b25c723812e1,"{'formatAndStandards': {'language': ['en']}, 'access': {'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data\nhttps://www.strokeaudit.org/Research/Data-requests.aspx', 'deliveryLeadTime': 'OTHER', 'jurisdiction': 'GB-GBN'}}",,2020-01-13T14:55:18Z,,3.0.0,,2021-04-14T08:14:21Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Tayside Biorepository', 'publisher': {'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE', 'contactPoint': 's.i.king@dundee.ac.uk'}, 'contactPoint': 's.i.king@dundee.ac.uk', 'keywords': ['Malignant liver neoplasm', 'Malignant neoplasm of endometrium of corpus uteri', 'Biorepository', 'UKCRC Tissue Directory', 'Tayside', 'Malignant skin neoplasm', 'Ischemic heart disease', 'Malignant kidney tumour', 'Fit and well'], 'doiName': 'Not Available', 'abstract': 'Samples & data for following diseases: Fit and well, Ischemic heart disease ,Malignant neoplasm of endometrium of corpus uteri ,Malignant liver neoplasm, Malignant skin neoplasm, Malignant kidney tumour  and others.\nFull list in Description…'}",6ac9b356-00f1-49da-825a-6eb04d18e49d,"{'spatial': 'Scotland', 'physicalSampleAvailability': ['TISSUE', 'WHOLE BLOOD'], 'typicalAgeRange': '15-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'c276b8ee-b07f-44ae-a87d-dd7090c2f1cd', '3.0.0': '47d22aea-cbe9-47d4-8f65-45861d9c5f6f', '2.0.0': '0a4f19cc-8565-410b-ac02-2751f5284a9b', '1.0.0': 'b3d8d430-8934-477a-afb8-066cf46fc757', 'latest': '47d22aea-cbe9-47d4-8f65-45861d9c5f6f'}","{'description': 'Tayside Biorepository is an established bio-resource responsible for the provision of a wide range of human tissue from consenting patients in addition to providing a large range services including staining and extraction methods.\nWe provide access to collection of samples and data across the following diseases: \n•\tFit and well\n•\tIschemic heart disease (disorder)\n•\tMalignant neoplasm of endometrium of corpus uteri (disorder)\n•\tMalignant neoplasm of liver\n•\tMalignant neoplasm of skin\n•\tMalignant tumour of kidney (disorder)\n•\tMalignant tumour of stomach (disorder)\n•\tMalignant tumour of urinary bladder (disorder)\n•\tMalignant tumour of breast\n•\tMalignant tumour of colon\n•\tMalignant tumour of oesophagus\n•\tMalignant tumour of ovary\n•\tMalignant tumour of pancreas\n•\tOsteoarthritis of knee (disorder))', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",47d22aea-cbe9-47d4-8f65-45861d9c5f6f,https://web.www.healthdatagateway.org/dataset/47d22aea-cbe9-47d4-8f65-45861d9c5f6f,"{'access': {'jurisdiction': 'GB-SCT', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'accessRequestCost': 'Not specified', 'dataProcessor': 'Not Applicable', 'dataController': 'University of Dundee', 'accessRights': 'Please contact the publisher using Contact Point details provided'}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}}","{'temporal': {'startDate': '2006-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:14:14Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:14:51Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'NIHR IBD BioResource: Consent records', 'keywords': ['IBD', ""Crohn's"", 'colitis', 'recall', 'consent'], 'abstract': ""The NIHR IBD BioResource records consent dates and versions for each and every participant consent event.  We also record use of opt-ins and opt-outs including pre-GDPR. This permits us to manage data releases in line with participants' expectations."", 'contactPoint': 'nbr@bioresource.nihr.ac.uk', 'publisher': {'identifier': '607db9c3e1f9d3704d570d0a', 'memberOf': 'HUB', 'name': 'GUT REACTION'}}",44ca2cf8-679e-447c-a9eb-55b32159679a,"{'followup': '1 - 10 YEARS', 'typicalAgeRange': '18-85', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2635167/united-kingdom.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '47e26b2b-8be1-4595-a327-a9f00e0d4712'},"{'description': 'The NIHR IBD Bioresource comprises ~34k participants with Inflammatory Bowel Disease (IBD). The NIHR IBD BioResource records consent details – form, version and date - from participants at many points of recontact.  In addition, participants are empowered to contact the study directly to express their preferences. The primary use of consent records is as an exclusion criterion when participants are invited to take part in experimental medicine studies.  However, consent is also factored in to the release of samples and data for sample-only and data-only studies.  One implication, is that data releases have freezes that capture a snapshot of the current consent statuses.  How the withdrawal process is managed, and implications for whether data can be removed rapidly from already published datasets is described in our Participant Privacy Notice, online at https://bioresource.nihr.ac.uk/about-us/governance-and-ethics/privacy-notice/', 'isPartOf': 'Not Applicable', 'associatedMedia': ['https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction-data-sources', 'https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction/', 'https://bioresource.nihr.ac.uk/about-us/governance-and-ethics/privacy-notice/', 'https://bioresource.nihr.ac.uk/about-us/governance-and-ethics/']}",47e26b2b-8be1-4595-a327-a9f00e0d4712,https://web.www.healthdatagateway.org/dataset/47e26b2b-8be1-4595-a327-a9f00e0d4712,"{'usage': {'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'isReferencedBy': ['Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/'], 'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS'], 'investigations': ['https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction-data-sources', 'https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction/', 'https://bioresource.nihr.ac.uk/about-us/governance-and-ethics/privacy-notice/', 'https://bioresource.nihr.ac.uk/about-us/governance-and-ethics/'], 'resourceCreator': ['NIHR BioResource. Acknowledgement text: ""We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.""']}, 'access': {'accessRights': ['https://bioresource.nihr.ac.uk/using-our-bioresource'], 'deliveryLeadTime': 'NOT APPLICABLE', 'accessRequestCost': ['Not Applicable'], 'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)', 'jurisdiction': ['GB-GB'], 'accessService': 'Not Applicable', 'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)'}, 'formatAndStandards': {'language': ['en'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL'], 'format': ['text', 'csv']}}","{'origin': {'collectionSituation': ['CLINIC', 'COMMUNITY', 'HOME'], 'source': ['ELECTRONIC SURVEY', 'PAPER BASED'], 'purpose': ['ADMINISTRATIVE']}, 'temporal': {'timeLag': 'NOT APPLICABLE', 'accrualPeriodicity': 'CONTINUOUS', 'startDate': '2016-01-13'}}",2021-09-13T15:57:15Z,"[{'observedNode': 'PERSONS', 'measuredValue': '34353', 'disambiguatingDescription': 'Participants who have consent information', 'observationDate': '01/09/2021', 'measuredProperty': 'COUNT'}]",5.0.0,"{'qualifiedRelation': ['ALL', 'COVID-19 SARI-Watch (formerly CHESS)', 'Civil Registration - Deaths', 'Covid-19 Second Generation Surveillance System', 'Emergency Care Data Set (ECDS)', 'Hospital Episode Statistics Accident and Emergency', 'Hospital Episode Statistics Admitted Patient Care', 'Hospital Episode Statistics Critical Care', 'Hospital Episode Statistics Outpatients', 'Intensive Care National Audit & Research Centre (ICNARC) Case Mix Programme (https://www.icnarc.org/Our-Audit/Audits/Cmp/About)'], 'derivation': ['Not Available']}",2021-09-13T15:57:15Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 5, 'structuralMetadata.columnName': 5, 'structuralMetadata.columnDescription': 5, 'structuralMetadata.dataType': 5, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '754aedf3-f1ec-4733-bcc0-b3858befab0e', 'description': 'Consent events', 'name': 'Consent', 'dataElementsCount': 5, 'dataElements': '48d97f07-c689-4d9a-a41f-b4623f160db3, fc39e68c-c731-44f6-aea7-ef71d870b558, 2dd4fcff-640d-4004-8e30-d1f02f568a34, 0e8f12df-8d7d-4f80-aa5e-266e5e0d57d7, 901a77d1-8d2c-41f4-b41b-d3bcdc11700c'}]}"
"{'title': ""St Thomas' Hospitals Plasma, serum & DNA Bio bank from patients with antiphospholipid antibodies"", 'doiName': 'Not Available', 'publisher': {'contactPoint': 'johanna.young@gstt.nhs.uk', 'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE'}, 'abstract': 'Collection of samples and data across the following diseases: Antiphospholipid syndrome (disorder)', 'keywords': ['Plasma', 'Antiphospholipid syndrome (disorder)', 'serum', 'APS', 'UKCRC Tissue Directory', 'DNA', 'Biobank', ""St Thomas' Hospitals""], 'contactPoint': 'johanna.young@gstt.nhs.uk'}",425f4534-51c4-4f75-8ca0-d7c731dbd903,"{'spatial': 'England', 'physicalSampleAvailability': ['IN PROGRESS'], 'typicalAgeRange': 'Not Known'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'b0d6f0c7-23c0-40b8-9976-fe37e887ba83', '3.0.0': '47f57de8-aa71-4df1-af4a-a81e37d4ae8c', '0.0.1': 'cf158de9-c0c6-4ca6-91b8-76bbc5a23b82', '2.0.0': 'f9f3af0d-ca1c-4e8f-b5e8-20962e1e7b4e', 'latest': '47f57de8-aa71-4df1-af4a-a81e37d4ae8c'}","{'description': 'A frozen biobank collection of plasma, serum, and DNA from APS patients. Each sample is anonymised blood sample collected from patients who consent for its use in future research into Antiphospholipid Syndrome.  APS is defined as the association of antiphospholipid antibodies (aPL) with arterial or venous thrombosis and /or pregnancy morbidly. Antiphospholipid syndrome is an autoimmune disorder in which aPL are involved in the development of venous and/or arterial thrombosis.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",47f57de8-aa71-4df1-af4a-a81e37d4ae8c,https://web.www.healthdatagateway.org/dataset/47f57de8-aa71-4df1-af4a-a81e37d4ae8c,"{'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}, 'access': {'accessRequestCost': 'Not specified', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'dataController': ""Guy's & St Thomas' Hospitals"", 'jurisdiction': 'GB-ENG', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'dataProcessor': 'Not Applicable'}, 'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}}","{'temporal': {'startDate': '2012-01-01', 'accrualPeriodicity': 'IN PROGRESS', 'distributionReleaseDate': '2019-08-14'}}",2020-01-13T17:16:40Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:13:13Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'North West London Primary Care Prescriptions Data (NWL PCP)', 'abstract': 'The NWL Primary Care Prescriptions covers all General Practices in NWL using EMIS or S1. This provides details of supply of prescriptions, issue date, primary care organisation that issued as well as whether it is a repeat or one-off prescription.', 'publisher': {'memberOf': 'HUB', 'name': 'DISCOVER NOW', 'contactPoint': 'researchers@registerfordiscover.org.uk'}, 'doiName': 'In Progress', 'contactPoint': 'researchers@registerfordiscover.org.uk', 'keywords': ['Primary care prescription', 'PCP', 'Discover-NOW', 'Integrated Care', 'Pathway', 'Real World data', 'Linked longitudinal']}",0fb33df6-ab36-4170-9fad-1eaf35a3a812,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': '> 10 YEARS', 'typicalAgeRange': '0-150', 'pathway': 'Primary Care Prescriptions covers all General Practices in NWL using EMIS or S1. This provides details of supply of prescriptions, issue date, primary care organisation that issued as well as whether it is a repeat or one-off prescription.', 'spatial': 'NHS Brent CCG; NHS Central London CCG; NHS Ealing CCG; NHS Hammersmith &Fulham CCG; NHS Harrow CCG; NHS Hillingdon CCG; NHS Hounslow CCG; NHS West London CCG'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': 'd1d8f462-514e-49bd-9c74-4b4314ef3275', '5.0.0': '48182af6-2ccd-44b2-92d5-69cc140e7d67', '4.0.0': 'b51be1a2-3d25-43ad-9acb-58d291332367', '3.0.0': 'c1f947c3-4956-4e0b-93ef-23ce9abda000', '1.0.0': '2bc12fa2-3285-4a8a-b3be-90805265ea82', '0.0.1': '9e4b0145-0f49-4073-ba4a-598ad5f391f0', 'latest': '48182af6-2ccd-44b2-92d5-69cc140e7d67'}","{'description': 'Organisations we collect information for include:\n\nNHS England - information is used to collect GP payments, based on achievements under the Quality and Outcomes Framework (QOF) and the delivery of quality services\nother government departments - for information about certain medical conditions and GP activity\nuniversities and other organisations - for academic research and services such as screening programmes\nThe systems that we use to collect data and information include:\n \n\nGeneral Practice Extraction Service (GPES) - used to collect information and data\nCalculating Quality Reporting Service (CQRS) - to record practice participation and to process and display information\nGP clinical systems - to record information at practice level\nWe are responsible for producing and maintaining the extract specification (business rules) to enable the extraction of these services.', 'isPartOf': 'PRIMARY CARE', 'associatedMedia': ['https://imperialcollegehealthpartners.com/discover-now/north-west-london-covid-19-data-repository/', 'https://www.nwlondonccgs.nhs.uk/professionals/whole-systems-integrated-care-wsic-dashboards-and-information-sharing/information-de-identified-users']}",48182af6-2ccd-44b2-92d5-69cc140e7d67,https://web.www.healthdatagateway.org/dataset/48182af6-2ccd-44b2-92d5-69cc140e7d67,"{'access': {'jurisdiction': 'GB', 'accessRequestCost': 'In Progress', 'deliveryLeadTime': '1-2 MONTHS', 'accessRights': ['https://imperialcollegehealthpartners.com/discover-now/nwl-covid-data-access/'], 'dataProcessor': 'NHS BRENT CCG', 'accessService': ""Researchers will have access to a VDI environment with a specific username and password. The researchers will get access to the datasets that is present in the hub's catalogue and would be able to carry out their research within the safe haven. There are restrictions applied which prevents the researchers from taking data out of the safe haven, once the research/analysis is completed the admin team will need to be contacted for taking the analysis off the safe haven"", 'dataController': 'Joint data controller model across North West London'}, 'usage': {'dataUseRequirements': ['COLLABORATION REQUIRED', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': 'NO RESTRICTION', 'isReferencedBy': ['Bottleet al. BMC Medical Informatics and Decision Making (2020) 20:71 https://doi.org/10.1186/s12911-020-1082-7'], 'resourceCreator': 'NHS Brent CCG\nDiscover-NOW', 'investigations': ['https://www.registerfordiscover.org.uk/researchers/discover-for-researchers-and-industry']}, 'formatAndStandards': {'format': ['Excel', 'SQL', 'Tableau', 'R'], 'language': 'en', 'vocabularyEncodingScheme': ['READ', 'SNOMED CT'], 'conformsTo': 'LOCAL'}}","{'temporal': {'accrualPeriodicity': 'MONTHLY', 'distributionReleaseDate': '2019-12-18', 'timeLag': '1-2 MONTHS', 'startDate': '2015-01-01'}, 'origin': {'purpose': ['CARE', 'ADMINISTRATIVE'], 'collectionSituation': 'PRIMARY CARE', 'source': 'EPR'}}",2020-01-10T17:02:21Z,"[{'observedNode': 'Persons', 'measuredValue': ' 1,865,802 ', 'disambiguatingDescription': '', 'observationDate': '2020-12-08', 'measuredProperty': 'Count'}]",5.0.0,"{'qualifiedRelation': ['This can be linked to: Accident and Emergency Admitted Patient Care Outpatient Care High Cost drugs Patient level data Primary care events  Adult social care  Mental Health  Community'], 'derivation': ['Predefined datasets are available for each long term conditions which brings activity and prescription data together. This dataset maps the patient pathway through the different care settings']}",2021-03-01T12:14:13Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 16, 'structuralMetadata.columnName': 16, 'structuralMetadata.columnDescription': 16, 'structuralMetadata.dataType': 16, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '56824268-88b4-42d6-958b-1ba0ea0a2960', 'description': 'Primary Care Prescriptions Activity', 'name': 'Primary Care Prescriptions', 'dataElementsCount': 16, 'dataElements': 'efab99b3-df4c-45c7-8835-f5dcf1936b7e, fe25ef0c-c11a-49a8-9481-168e82f5083f, f14bd871-8ccf-4f9b-af65-78783cbb340f, e73badb4-5950-492d-a52c-cabb871b8c95, ab0442ab-280f-4f58-8f4c-1177d6ec8185, 415a70d6-a02d-41e7-be17-1e9b3bd05b46, fa1ee6b9-4c56-439c-a4b0-13073eb9ca70, d8c3c3d2-6aff-446d-adc8-dc21a2f2f0c4, 5ebec31c-edfe-4a6d-8553-65e6ddcbaf0e, 1102b3d7-a6e3-4c87-8557-4dad531fe874, da5f75cf-5070-4719-a92d-6c0b02831983, d3d5d269-cde1-4f92-9b53-3aacafedf889, 77f8a861-f598-4523-bc5d-0436d1bb0a75, 5e6d9aa5-11d0-4a3d-9c1e-e9ccd685c500, d7237817-5b89-44f3-b33a-08122cdc7de5, 87bad22f-e785-40e2-9e5e-11883a8650f1'}]}"
"{'title': 'A granular assessment of the day-to-day variation in emergency presentations', 'abstract': 'A granular dataset of over 65,000 emergency admissions, with detailed patient flow through hospital detailing day-to-day variation in case mix.   Severity, demographics, multi-morbidity, completion of review, interventions, treatments and outcomes.', 'contactPoint': 'PIONEER@UHB.NHS.UK', 'publisher': {'memberOf': 'HUB', 'name': 'PIONEER', 'identifier': '607db9c5e1f9d3704d570d5f'}, 'keywords': ['Acute Care', 'Same Day Emergency Care', 'SDEC', 'Waiting Times', 'Emergency Department', 'Overcrowding', 'KPIs', 'Performance', 'Longitudinal data', ' ED', 'demography', 'age', 'Ethnicity', 'socioeconomic deprivation', 'frailty', 'multi-morbidity', 'Pathway', 'observations', 'pulse rate', 'respiratory rate', 'blood pressure', 'oxygenation', 'pulse oximetry', 'NEWS2', 'SEWS', 'investigations', 'Imaging', 'pathology', 'symptoms', 'diagnoses', 'outcomes medical review', 'Death', 'clinical speciality', 'biomarkers', 'bloods', 'acute hospitals', 'care escalation', 'Therapies', 'Patient', 'Longitudinal', 'readmissions']}",ef850406-2993-43ec-80b9-ef504734f2ac,"{'spatial': ['https://www.geonames.org/2634343/west-midlands.html'], 'followup': 'OTHER', 'typicalAgeRange': '16-105', 'pathway': 'Data is representative of the multi-ethnicity population within the West Midlands (42% non white). Data includes all patients admitted during this timeframe, with National data Opt Outs applied, and therefore is representative of admissions to secondary care. Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '483be944-b3ea-4037-b22b-4e9ffca3e613'},"{'description': 'The acute-care pathway (from the emergency department (ED) through acute medical units or ambulatory care and on to wards) is the most visible aspect of the hospital health-care system to most patients. Acute hospital admissions are increasing yearly and overcrowded emergency departments and high bed occupancy rates are associated with a range of adverse patient outcomes. Predicted growth in demand for acute care driven by an ageing population and increasing multimorbidity is likely to exacerbate these problems in the absence of innovation to improve the processes of care.   \n\nKey targets for Emergency Medicine services are changing, moving away from previous 4-hour targets. This will likely impact the assessment of patients admitted to hospital through Emergency Departments.  \n\nThis data set provides highly granular patient level information, showing the day-to-day variation in case mix and acuity.  The data includes detailed demography, co-morbidity, symptoms, longitudinal acuity scores, physiology and laboratory results, all investigations, prescriptions, diagnoses and outcomes.  It could be used to develop new pathways or understand the prevalence or severity of specific disease presentations.   \n\nPIONEER geography: The West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix.  \n\nElectronic Health Record: University Hospital Birmingham is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”. \n\nScope: All patients with a medical emergency admitted to hospital, flowing through the acute medical unit. Longitudinal & individually linked, so that the preceding & subsequent health journey can be mapped & healthcare utilisation prior to & after admission understood. The dataset includes patient demographics, co-morbidities taken from ICD-10 & SNOMED-CT codes. Serial, structured data pertaining to process of care (timings, admissions, wards and readmissions), physiology readings (NEWS2 score and clinical frailty scale), Charlson comorbidity index and time dimensions. \n\nAvailable supplementary data: Matched controls; ambulance data, OMOP data, synthetic data. \n\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.', 'isPartOf': 'NOT APPLICABLE'}",483be944-b3ea-4037-b22b-4e9ffca3e613,https://web.www.healthdatagateway.org/dataset/483be944-b3ea-4037-b22b-4e9ffca3e613,"{'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'format': ['SQL'], 'vocabularyEncodingScheme': ['SNOMED CT', 'ICD10']}, 'access': {'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/'], 'deliveryLeadTime': '1-2 MONTHS', 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'dataProcessor': 'NOT APPLICABLE', 'jurisdiction': ['GB-ENG'], 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'dataController': 'University Hospitals Birmingham NHS Foundation Trust'}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS']}}","{'origin': {'collectionSituation': ['ACCIDENT AND EMERGENCY'], 'purpose': ['CARE'], 'source': ['EPR']}, 'temporal': {'endDate': '2021-06-30', 'accrualPeriodicity': 'QUARTERLY', 'startDate': '2019-06-01', 'timeLag': 'OTHER', 'distributionReleaseDate': '2021-11-24'}}",2021-12-21T14:27:30Z,"[{'observedNode': 'EVENTS', 'measuredValue': '64833', 'disambiguatingDescription': '64,833 acute general medicine admissions from 01/06/2021 and 01/07/2021', 'observationDate': '24/11/2021', 'measuredProperty': 'Count'}]",1.0.0,{'derivation': ['NOT AVAILABLE']},2021-12-21T14:27:30Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 3, 'structuralMetadata.tableName': 3, 'structuralMetadata.tableDescription': 3, 'structuralMetadata.dataElementsCount': 53, 'structuralMetadata.columnName': 53, 'structuralMetadata.columnDescription': 53, 'structuralMetadata.dataType': 53, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'fbb9fe7c-cfb7-4ba9-98a0-85773a068588', 'description': 'spell admission details', 'name': 'PDR35Admission', 'dataElementsCount': 30, 'dataElements': '12fbf9b8-5bb9-472f-a68a-e04769ec8f5a, 80648040-d478-4c0a-8b5b-de7477981ab7, bd911673-d71d-4e9c-a5b1-d8607b9e60fe, 951b45bd-d5d0-4849-99b5-05a9ab39d608, cd94ead8-fe06-47a1-868c-f59ca1ca99fd, f2f084fd-8a86-4e18-9772-52f17b455596, 3d0adcd3-d2a3-47ab-ac12-89a34243c4d1, 8a39e91a-c8d9-4aa3-b97b-d272fcc03fc1, 6f3a175a-994b-4181-a254-e95d7b2f7f28, 5024bd2b-612c-4b59-aaab-dd1712dff946, 0331d1a7-2c6a-452b-8c0a-8ff92cab82dc, b8773412-534b-4ab3-ab5c-716f906049d0, 9ba9d279-378a-46b9-b739-c8055a6eaf4b, 48956c49-2990-4629-a39b-5c70cbc696b2, 1fbe3808-f3ca-4103-837a-bfad18fb82e8, c4cd0658-40f3-47c5-90f7-1aa664417f19, 58a78a70-d174-4bd7-b3c7-6feb0122f1dd, ad431bba-7040-4957-8843-968a11b61d1d, 1da62a79-db4c-43b4-a9cb-681cd66a8958, 49102c6d-ef1d-4bb3-ae3a-05153f40d63a, 9d93c524-d8c3-4069-91fb-372a88cf44b7, c4a3888d-39d6-48de-a65c-a04a3d5b6357, 916852cf-611a-4002-9d90-937d0499ef04, 5db7f87c-4fcf-44e7-b4c4-c07982195e71, fe50a736-4a84-4978-b106-09e7aa841af2, 42f861e2-1926-46a4-a2ed-bdd8b0426c96, 6fb47fb0-dc77-4613-a3d9-785577609af5, 2216a778-cea9-4eab-b2bc-f7559980b236, 77fcb685-49d6-4001-8499-4f00db783393, 6dc15c3d-9e5a-4c8e-ab61-904357bf6a56'}, {'id': '303471f1-1e30-4a94-b3ab-2bc040e67f66', 'description': 'diagnosis details for each spell', 'name': 'PDR35Diagnosis', 'dataElementsCount': 9, 'dataElements': 'afe1c11b-4938-4962-9e00-af7c79ff768f, 5dfbd131-3a7f-4312-9cac-e2f9ddfbe514, 83085c41-6e37-4166-866e-3de6fe046cfe, 6d05eab5-5c8b-4975-85c3-346e6ad3d60e, 6467b2ea-4b84-4538-b251-ced6c4c5d2fd, cffbe63b-758d-4078-959b-ec191ce392f7, 0f530301-8bd6-43f2-9755-18d9e5c48b0c, c7db1e7f-bbc5-4471-bdf3-941770fe3076, d167fabf-2433-4823-b77f-6cf3d8039679'}, {'id': 'bfc13285-42f1-403b-8609-b2c94052fe3a', 'description': 'time details for each spell', 'name': 'PDR35Time', 'dataElementsCount': 14, 'dataElements': 'b03a7df1-ec8e-4bc9-bbf8-7332ae7d9ecb, 4da4be1a-37e6-4a94-b068-2f0e3f51a570, b5247758-5572-4f38-bfd7-d47ce33db1f5, c3db61e8-7380-485e-b146-47c16555d2c6, 8dde2d5d-16ee-4c6d-8d1d-14b09cceb3d3, e192c8d5-6a9e-4e8b-bf96-920329be8d4f, a4af5fdb-c68c-429c-96fb-a7d014ae5222, 78ff3240-c847-4b23-9dfd-325b9a28d798, 4791da28-e3c0-4fd7-b987-0bf236892c62, 75ade7d1-ab3e-4173-b0f4-060c0102026b, c55a0778-d9b4-4f13-943a-0f8e9cb9e6c0, 0596821f-2eb5-4096-b94f-a8317a36c286, c1795d36-6238-463f-b892-31b37137c77e, 1cf04e50-f953-452b-a649-f9160e7db5c3'}]}"
"{'title': 'National Vascular Registry - Organisational Audit dataset', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d23', 'name': 'HQIP'}, 'keywords': ['NVR', 'Vascular', 'Registry', 'Organisational'], 'abstract': 'The NVR organisational audit dataset includes data collected between 9 July and 8 October 2018 on hospital vascular services in England, Wales, Scotland and Northern Ireland. It includes data on the availability of and access to arterial surgical services, personnel and facilities, as well as detailed information about the organisation and systems relating to specific vascular interventions, such as bypass surgery and angioplasty for lower limb ischaemia.', 'contactPoint': 'datasharing@hqip.org.uk'}",3c661240-e4d2-456c-a809-133c23f9c469,"{'pathway': 'Characteristics of hospitals in the UK that provided vascular surgical services in August 2018', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2638360/scotland.html', 'https://www.geonames.org/2634895/wales.html'], 'followup': 'UNKNOWN'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': 'eeb4e81b-3ef8-4fe8-b16e-744f925208d9', '6.0.0': '483f49ea-07b3-4efb-8bad-0d9af5ed5f0f', '3.0.0': '4678a81d-dfb6-478a-a373-d5510866b3d0', '4.0.0': 'd54de7e6-6c25-44f6-a24a-c86aa3a7ac68', '1.0.0': '7f669d1d-22b4-440d-a36c-5982ef6069e3', '0.0.1': '746a7620-9acd-46e1-93e8-e94096f6384e', '5.0.0': 'd977abd8-a966-4b4c-99f0-7a4c368f9934', 'latest': '483f49ea-07b3-4efb-8bad-0d9af5ed5f0f'}","{'description': 'The NVR organisational audit dataset includes data collected between 9 July and 8 October 2018 on hospital vascular services in England, Wales, Scotland and Northern Ireland. 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"{'title': 'Falls and Fragility Fracture Audit Programme National Audit of Inpatient Falls clinical dataset', 'publisher': {'contactPoint': 'DataSharing@hqip.org.uk', 'memberOf': 'ALLIANCE', 'name': 'HQIP'}, 'contactPoint': 'DataSharing@hqip.org.uk', 'abstract': 'The FFFAP NAIF is a continuously ascertained, record-level audit which evaluates both falls prevention activity prior to the hip fracture and post-falls care, when inpatients have fallen within acute, community and mental health hospital care.', 'keywords': ['Fall', 'Dataset', 'Clinical', 'Fragility', 'FFFAP', 'Audit', 'Inpatient Falls']}",3c19e2c9-96d5-45f3-9c55-fc3cec762cd7,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '05c554ca-d11f-4089-afe3-ad05cf9521d1', '3.0.0': '489cb34a-f20d-4fe0-849a-db85f00141f5', '1.0.0': '76d37f1d-ee80-4015-91cb-585886ee21f4', '2.0.0': '430331ef-fa66-485b-b090-e4e83def9136', 'latest': '489cb34a-f20d-4fe0-849a-db85f00141f5'}","{'description': 'The FFFAP NAIF is a continuously ascertained, record-level audit which evaluates both falls prevention activity prior to the hip fracture and post-falls care, when inpatients have fallen within acute, community and mental health hospital care in England and Wales. Data collection started in January 2019.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",489cb34a-f20d-4fe0-849a-db85f00141f5,https://web.www.healthdatagateway.org/dataset/489cb34a-f20d-4fe0-849a-db85f00141f5,"{'access': {'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data\nhttps://www.rcplondon.ac.uk/guidelines-policy/applying-work-falls-and-fragility-fracture-audit-programme-data', 'jurisdiction': 'GB-GBN', 'deliveryLeadTime': 'OTHER'}, 'formatAndStandards': {'language': ['en']}}",,2020-01-13T14:55:17Z,,3.0.0,,2021-04-14T08:14:15Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'NIHR BioResource: Sample holding', 'publisher': {'identifier': '607db9c4e1f9d3704d570d3f', 'memberOf': 'ALLIANCE', 'name': 'NIHR BIORESOURCE'}, 'contactPoint': 'nbr@bioresource.nihr.ac.uk', 'keywords': ['recall', 'samples', 'DNA', 'plasma', 'sera'], 'abstract': 'NIHR BioResource samples are held at the NIHR National Biosample Centre in Milton Keynes. Metadata on what is available should become available through the UK CRC Tissue Directory, as mandated by Research Tissue Bank status.'}",56993820-96e4-4a1f-9de1-bad53108c201,"{'typicalAgeRange': '18-85', 'followup': '1 - 10 YEARS', 'spatial': 'United Kingdom (https://www.geonames.org/2635167/united-kingdom.html)', 'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'dad781b9-43c2-4e8b-a377-e6c0f76d1c04', '1.0.0': '48deb24e-7a15-48d7-ba2c-c477ae61b55d', 'latest': '48deb24e-7a15-48d7-ba2c-c477ae61b55d'}","{'description': 'The NIHR Bioresource consists of several groups of participants: ~70k from the general population and blood donors (COMPARE, INTERVAL and STRIDES studies); ~19k with one of ~50 rare diseases (RD) including a ~5k pilot for GEL; ~30k with Inflammatory Bowel Disease (IBD) which include the members of Gut Reaction, the Health Data Research Hub for IBD; and ~20k with Anxiety or depression (GLAD study). It intends to extend recruitment in all areas, and to other rare and common disease groups, with a target of ~300k by 2022.  The NIHR BioResource acquires samples at recruitment for each participant recruited. With the exception of the GLAD study, which posts saliva kits direct to participants’ homes, the preferred sample collection is 3 blood tubes – see https://bioresourcesupport.org.uk/live-samples/ - from which DNA can be extracted, and plasma and sera stored. In many clinics, the NIHR BioResource blood draw follows immediately the blood collection for routine healthcare purposes. In the case of children, less blood will be taken, down to 1mL. The Technical Metadata describes the standard used by RD-Connect, the EU-wide Rare Disease biobank consortium - https://samples.rd-connect.eu/menu/main/home. During 2020, this will be replaced by an API from the UK CRC Tissue Directory, as using this discovery tool is a condition of running a Research Tissue Bank in the UK.', 'isPartOf': 'Not Applicable'}",48deb24e-7a15-48d7-ba2c-c477ae61b55d,https://web.www.healthdatagateway.org/dataset/48deb24e-7a15-48d7-ba2c-c477ae61b55d,"{'access': {'accessRights': ['https://bioresource.nihr.ac.uk/using-our-bioresource'], 'deliveryLeadTime': '2-6 MONTHS', 'accessService': 'Some de-identified data may be released to researchers in a platform-independent filetype (e.g. CSV). However, access to any data acquired via NHS Digital is subject to strict restrictions governing where data may be accessed and from which locale - access is currently via an experimental safe haven built in Microsoft Azure.', 'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)', 'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)', 'accessRequestCost': ['https://bioresource.nihr.ac.uk/using-our-bioresource/industry-researchers/industry-bioresource-usage-costs/'], 'jurisdiction': ['GB-GBN']}, 'usage': {'isReferencedBy': ['Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/'], 'dataUseLimitation': ['RESEARCH USE ONLY'], 'resourceCreator': ['NIHR BioResource. Acknowledgement text: ""We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.""'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION']}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'format': ['text/csv'], 'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL']}}","{'origin': {'source': ['LIMS'], 'collectionSituation': ['OTHER'], 'purpose': ['STUDY']}, 'temporal': {'startDate': '2002-05-20', 'timeLag': '1-2 MONTHS', 'distributionReleaseDate': '2021-03-31', 'accrualPeriodicity': 'QUARTERLY'}}",2021-02-21T18:15:03Z,"[{'observedNode': 'EVENTS', 'measuredValue': '225265', 'disambiguatingDescription': 'Sample tubes collected from participants', 'observationDate': '26/11/2020', 'measuredProperty': 'COUNT'}]",1.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['ALL', 'COVID-19 SARI-Watch (formerly CHESS)', 'Civil Registration - Deaths', 'Covid-19 Second Generation Surveillance System', 'Emergency Care Data Set (ECDS)', 'Hospital Episode Statistics Accident and Emergency', 'Hospital Episode Statistics Admitted Patient Care', 'Hospital Episode Statistics Critical Care', 'Hospital Episode Statistics Outpatients', 'Intensive Care National Audit & Research Centre (ICNARC) Case Mix Programme (https://www.icnarc.org/Our-Audit/Audits/Cmp/About)']}",2021-11-25T11:37:59Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 18, 'structuralMetadata.columnName': 18, 'structuralMetadata.columnDescription': 18, 'structuralMetadata.dataType': 18, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'dec69049-bf17-4818-b5e7-5cd33d5e5c23', 'description': 'Sample Manifest', 'name': 'Sample', 'dataElementsCount': 18, 'dataElements': 'ec6889dc-8aa6-4a16-88e3-920fdf85d42d, e088ea42-b8cf-482c-b660-d272dd7c7a12, 8dde90da-88ad-4b20-bf50-466471dd616d, eb8d3de7-bfd5-4d17-96cd-ed68eb7c6a0a, a4bcc32c-1d65-4c4a-89dd-7a48175a7b6a, b421beba-37e4-4a78-91b7-cbb60eea0bea, fc53a64c-b00e-4637-b4e2-7fc26d55c6d4, aacf6a64-84e5-4593-916f-389c24d2dd04, 36490f30-ffab-447d-a974-849b0995e195, 59eacb55-9a9f-438a-a8eb-8c69f276f25b, 27163df6-3c7c-4a69-bd9e-da300aaed596, 84477e04-230c-4b2f-b89c-899266178024, b61a8484-2eb7-4eb1-bf57-9a62d6908ef6, 0e582901-e127-44b5-8126-0419043f71d0, 8b87d6a4-c5ad-4d89-90e1-56d5ee1dc973, f7a7664a-a5fc-4738-983d-69700a65a8f3, 268d90a6-5139-45d6-b362-8295d06eb48a, a45fb676-b191-4ce0-9ae4-b11a73d735ab'}]}"
"{'title': 'National Audit of Dementia - spotlight audit on the prescription of psychotropic medication, 2019', 'publisher': {'contactPoint': 'DataSharing@hqip.org.uk', 'memberOf': 'ALLIANCE', 'name': 'HQIP'}, 'abstract': 'A time-limited data collection aiming to explore prescriptions of any psychotropic medication to people with dementia in hospital. Around 50 hospitals in England provided data.', 'contactPoint': 'DataSharing@hqip.org.uk', 'keywords': ['Dementia', 'Hospital', 'Spotlight', 'NAD', 'Audit']}",949d9d7a-a3f1-480a-8563-3fb024300561,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '8228dd13-6643-41a2-be1c-716447f7b0ff', '3.0.0': '491cc634-05e8-48fe-9018-ffb9e7eed84e', '1.0.0': '6f92e7c2-f6ad-4905-8895-308821f245be', '2.0.0': '7fab080b-6e2a-4c82-a5e5-daf99c70662a', 'latest': '491cc634-05e8-48fe-9018-ffb9e7eed84e'}","{'description': 'A time-limited data collection aiming to explore prescriptions of any psychotropic medication to people with dementia in hospital. Around 50 hospitals in England provided data.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",491cc634-05e8-48fe-9018-ffb9e7eed84e,https://web.www.healthdatagateway.org/dataset/491cc634-05e8-48fe-9018-ffb9e7eed84e,"{'access': {'jurisdiction': 'GB-GBN', 'deliveryLeadTime': 'OTHER', 'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'}, 'formatAndStandards': {'language': ['en']}}",,2020-01-13T10:40:44Z,,3.0.0,,2021-04-14T08:08:10Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Cancer registration data for CPRD Aurum', 'abstract': 'CPRD Aurum linked National Cancer Registration and Analysis Service (NCRAS) cancer registration data contain a record for each notified, registrable tumour, diagnosed or treated in England.', 'contactPoint': 'enquiries@cprd.com', 'publisher': {'name': 'CPRD', 'memberOf': 'ALLIANCE', 'identifier': '607db9c2e1f9d3704d570cee'}, 'doiName': 'https://doi.org/10.48329/5sm7-3209', 'keywords': ['Cancer Registration', 'NCRAS']}",3f3df3be-05a8-42b2-89d9-f731deb7ea66,"{'followup': '1 - 10 YEARS', 'pathway': 'Cancer registration data are collected from a range of health care provider systems and other services.', 'typicalAgeRange': '0-115', 'spatial': ['https://www.geonames.org/6269131/england.html'], 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': 'f85b2292-4e85-493b-ae3e-4e0305112c65', '6.0.0': '4a4f5d83-e8fb-4249-9275-2a42d9f76c53', '5.0.0': '484bff65-c47e-47ce-9eb5-5d381f961160', '4.0.0': '851bb11b-fa75-44ee-afe9-948dc7652555', '3.0.0': 'cac843be-683a-4c90-a306-12eeb76c016c', '1.0.0': '90efa8dc-70e6-4995-a419-b1c7a4892091', '0.0.1': '9f38b7d8-c84e-4885-8d34-2fb7eebfb5b0', 'latest': '4a4f5d83-e8fb-4249-9275-2a42d9f76c53'}","{'description': 'CPRD Aurum linked National Cancer Registration and Analysis Service (NCRAS) cancer registration data contain records for each registrable tumour diagnosed or treated in England, of which the NCRAS has been notified.', 'isPartOf': 'CPRD Aurum', 'associatedMedia': ['https://www.cprd.com/linked-data']}",4a4f5d83-e8fb-4249-9275-2a42d9f76c53,https://web.www.healthdatagateway.org/dataset/4a4f5d83-e8fb-4249-9275-2a42d9f76c53,"{'formatAndStandards': {'conformsTo': ['NHS DATA DICTIONARY'], 'vocabularyEncodingScheme': ['ICD10', 'ICDO3'], 'language': ['en'], 'format': ['Tab delimited text']}, 'usage': {'resourceCreator': ['Public Health England (PHE) via the National Cancer Registration and Analysis Service (NCRAS)'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'NO LINKAGE', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'investigations': ['https://www.cprd.com/protocol-list'], 'dataUseRequirements': ['GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'isReferencedBy': ['Henson KE,Elliss-Brookes L,Coupland VH,Payne E,Vernon S,Rous B,Rashbass J. 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"{'title': 'Epilepsy 12 - National organisational audit (service descriptor questionnaire) and Trust profile', 'publisher': {'contactPoint': 'DataSharing@hqip.org.uk', 'name': 'HQIP', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'DataSharing@hqip.org.uk', 'abstract': ""A dataset comprising a yearly survey of Trusts' paediatric epilepsy services."", 'keywords': ['Paediatric', 'Epilepsy 12', 'Audit', 'Survey', 'National organisational']}",2c737d63-69f4-4a02-8df9-54c1e65e845f,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '7bbd509a-aa6a-48fd-9b83-1879cee79150', '3.0.0': '4b2fbd88-71c7-4572-99ea-5987a72a0c1a', '2.0.0': '7f125091-12ba-464d-af7d-9a88179b0b95', '1.0.0': '7fa61997-dcac-460c-bdc3-50031981fddd', 'latest': '4b2fbd88-71c7-4572-99ea-5987a72a0c1a'}","{'description': ""A dataset comprising a yearly survey of Trusts' paediatric epilepsy services. The dataset covers England and Wales and includes information on 10 areas of the provision and organisation of services: Workforce, Epilepsy clinic configuration, Tertiary provision, Investigations, Service contact, Young people and transition, Mental health provision, Neurodevelopmental support, Care planning, and the use of a Patient database/register."", 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",4b2fbd88-71c7-4572-99ea-5987a72a0c1a,https://web.www.healthdatagateway.org/dataset/4b2fbd88-71c7-4572-99ea-5987a72a0c1a,"{'access': {'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data', 'deliveryLeadTime': 'OTHER', 'jurisdiction': 'GB-GBN'}, 'formatAndStandards': {'language': ['en']}}",,2020-01-13T14:11:57Z,,3.0.0,,2021-04-14T08:10:13Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
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"{'title': 'National Early Inflammatory Arthritis Audit - organisational survey dataset', 'abstract': 'Contains organisational survey data from specialist rheumatology units in England and Wales, refreshed on an annual basis', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'HQIP', 'identifier': '607db9c4e1f9d3704d570d23'}, 'contactPoint': 'DataSharing@hqip.org.uk', 'keywords': ['Audit', 'NEIAA', 'Early', 'Inflammatory', 'Arthritis', 'Organisational Survey']}",a9ac99fe-32be-40ef-9509-03e6b2713ddf,"{'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html'], 'typicalAgeRange': '16-150', 'followup': 'OTHER', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'patients with suspected or confirmed early inflammatory arthritis'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '4f9f3839-2a4f-4389-a4f5-f479ae3c2662', '5.0.0': '4b79bce2-6d1c-448b-969e-56b424f3d57a', '3.0.0': 'cbda5643-96b7-4914-b990-a872e693ff29', '4.0.0': '73bcc43a-e9ef-462a-9c32-be108d9020a0', '1.0.0': '223d7ba2-d14e-4746-8938-fdc719bbc25f', '0.0.1': 'b78b936e-949f-40a8-82e5-32a1ad187be1', 'latest': '4b79bce2-6d1c-448b-969e-56b424f3d57a'}","{'description': 'Contains organisational survey data from specialist rheumatology units in England and Wales, refreshed on an annual basis', 'associatedMedia': ['https://www.hqip.org.uk/a-z-of-nca/rheumatoid-early-inflammatory-arthritis-audit/#.YL8XN_lKiUk'], 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",4b79bce2-6d1c-448b-969e-56b424f3d57a,https://web.www.healthdatagateway.org/dataset/4b79bce2-6d1c-448b-969e-56b424f3d57a,"{'access': {'deliveryLeadTime': 'VARIABLE', 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England', 'accessRequestCost': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data', 'https://arthritisaudit.org.uk/filesuploaded/data%20access%20process%20-%20november%202018.pdf'], 'dataProcessor': 'Kings College London', 'jurisdiction': ['GB-EAW'], 'accessRights': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data', 'https://arthritisaudit.org.uk/filesuploaded/data%20access%20process%20-%20november%202018.pdf']}, 'usage': {'resourceCreator': ['Data has been provided by the Healthcare Quality Improvement Partnership from the National Early Inflammatory Arthritis Audit '], 'dataUseLimitation': ['NO RESTRICTION'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS']}, 'formatAndStandards': {'format': ['CSV'], 'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'conformsTo': ['LOCAL']}}","{'origin': {'purpose': ['AUDIT'], 'source': ['ELECTRONIC SURVEY'], 'collectionSituation': ['SERVICES']}, 'temporal': {'timeLag': 'VARIABLE', 'accrualPeriodicity': 'ANNUAL', 'startDate': '2014-02-01'}}",2020-01-13T14:54:27Z,"[{'observedNode': 'FINDINGS', 'measuredValue': 118, 'disambiguatingDescription': 'number of Trusts and Health Boards who submitted data', 'observationDate': '01/01/2021', 'measuredProperty': 'Count'}]",5.0.0,"{'qualifiedRelation': ['Not applicable'], 'derivation': ['Not Available']}",2021-10-28T13:18:03Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 17, 'structuralMetadata.columnName': 17, 'structuralMetadata.columnDescription': 17, 'structuralMetadata.dataType': 17, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '1861853f-54e2-4119-b9ad-b27a9ffbf27e', 'description': 'Data fields for NEIAA 2020- Hospital/ site data collection (organisational level audit)', 'name': 'NEIAA 2020 organisational form', 'dataElementsCount': 17, 'dataElements': '2b23b436-a989-46ba-bc24-6384f1df8505, 6f4557f4-4ad8-4adf-83cd-672b870fa853, 8a185553-a8c2-488a-8950-edf60db9558c, d821f763-2bd1-4469-b5d8-2a346b73f01f, c4e4a2d3-cdf3-47ca-8481-eee4940d48ec, efe686d5-b782-4354-8677-891c7e97abeb, 90d08740-75fc-4e56-bda1-71812a66bfb5, 461946c3-4666-44d7-a05f-f62a63ce4b3a, f105da60-9d64-4909-b6d0-7d315f1af760, 44a6b064-1ebf-4049-aa8a-a479b5fe7475, 46329b26-9692-470b-902c-0f6e1fda7396, 0e99961a-07bd-450e-9ba4-0713c7ede754, f9cfc62d-6ca4-43b4-96bb-fba476b6e25e, fb8d98c1-72a6-4f9a-a4af-11c94c9233a3, 63c11475-44f4-4e53-92b1-ce490ac670fe, 6a139c85-4371-4d54-be54-5f59b80bbb15, 360b455a-a3cc-4f08-9630-67f3627c8416'}]}"
"{'title': 'HES Outpatient data for CPRD Aurum', 'keywords': ['OP', 'Outpatient', 'HES'], 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c2e1f9d3704d570cee', 'name': 'CPRD'}, 'abstract': 'CPRD Aurum linked Hospital Episode Statistics Outpatient (HES OP) data contain records of NHS outpatient appointments occurring in England, including appointment dates, specialities and referral sources.', 'doiName': 'https://doi.org/10.48329/7hm3-gt75', 'contactPoint': 'enquiries@cprd.com'}",8d3f3e58-be79-4450-b2e3-f5ab8a25fb0e,"{'spatial': ['https://www.geonames.org/6269131/england.html'], 'typicalAgeRange': '0-115', 'pathway': 'Secondary care', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': '1 - 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '262773f6-9697-4a7a-9ffe-cae57e509d48', '5.0.0': '4bf36706-8176-4525-a3f4-3b96f68e48de', '4.0.0': '50925199-a35d-4327-87cd-7761d713a72b', '3.0.0': '6e1d8f50-f718-4964-9c88-2c80cbaa92b5', '1.0.0': 'aeace1de-43c9-4b3f-97ce-a71ce8d85d9c', '0.0.1': '202d55e1-bd98-4428-8fd1-201b64352ebf', 'latest': '4bf36706-8176-4525-a3f4-3b96f68e48de'}","{'description': 'CPRD Aurum linked Hospital Episode Statistics Outpatient (HES OP) data are a collection of individual records of outpatient appointments occurring in England. 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Pharmacoeconomics,34 (2),161-8,Feb 2016.'], 'resourceCreator': ['NHS Digital'], 'dataUseRequirements': ['GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'NO LINKAGE', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY']}, 'formatAndStandards': {'language': ['en'], 'format': ['Tab delimited text'], 'vocabularyEncodingScheme': ['ICD10', 'ODS', 'OPCS4', 'SNOMED CT'], 'conformsTo': ['NHS DATA DICTIONARY']}}","{'temporal': {'endDate': '2020-10-31', 'timeLag': 'MORE 6 MONTHS', 'startDate': '2004-03-20', 'distributionReleaseDate': '2021-09-06', 'accrualPeriodicity': 'QUARTERLY'}, 'origin': {'purpose': ['CARE'], 'source': ['EPR'], 'collectionSituation': ['OUTPATIENTS']}}",2020-01-10T18:12:19Z,"[{'observedNode': 'PERSONS', 'measuredValue': 34416869, 'disambiguatingDescription': 'Number of CPRD Aurum patients matched to single HES identifier ', 'observationDate': '06/09/2021', 'measuredProperty': 'Count'}]",5.0.0,"{'derivation': ['N/A'], 'qualifiedRelation': ['CPRD Aurum', 'CPRD Aurum SGSS', 'CPRD Aurum CHESS', 'CPRD Aurum ICNARC', 'Death Registration data for CPRD Aurum', 'HES Admitted Patient Care data for CPRD Aurum', 'HES Accident and Emergency data for CPRD Aurum', 'HES Diagnostic Imaging Dataset for CPRD Aurum', 'Patient postcode linked deprivation measures for CPRD Aurum', 'Practice postcode linked deprivation measures for CPRD Aurum', 'Rural-Urban classification for CPRD Aurum', 'Cancer registration data for CPRD Aurum', 'National Radiotherapy Dataset (RTDS) for CPRD Aurum,Systemic Anti-Cancer Treatment (SACT) data for CPRD Aurum', 'Mental Health Dataset (MHDS) for CPRD Aurum'], 'tools': ['[]']}",2022-02-18T12:02:04Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 4, 'structuralMetadata.tableName': 4, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 73, 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"{'title': 'Assessment of ASHA’s workload and its determinants', 'abstract': 'This study uses a mixed-methods approach to assess and explore ASHAs’ (Accredited Social Health Activists) perspectives of their workload alongside that of local healthcare colleagues in both rural and village contexts', 'publisher': {'identifier': '607db9c2e1f9d3704d570ce6', 'name': 'BREATHE', 'memberOf': 'HUB'}, 'contactPoint': 'RESPIRE@ed.ac.uk', 'keywords': ['BREATHE India', 'CHW', 'Community Health Worker', 'Accredited Social Health Activists', 'Workload', 'ASHA', 'RESPIRE', 'INDIA']}",1a02bc11-a378-4f9e-82f9-c52674b388bd,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '18-110'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'bab944af-e345-4893-8640-a88aaff97c72', '4.0.0': '4c171540-5caa-42f7-868d-1d4d7b969f11', '1.0.0': '72cdb39d-d438-4e1e-b6cb-8464f5a5909c', '2.0.0': '3d889aa6-aa28-4f3f-b220-e8bb40b38a6f', 'latest': '4c171540-5caa-42f7-868d-1d4d7b969f11'}","{'description': 'The ever evolving role of ASHA demands an up-to-date comprehensive assessment of the workload, incentives and understanding of the work profile from the perspectives of the health system, community and ASHA herself in order to guide successful future implementation as well as sustainability of the programme. This study had a broad interest in both the full range of tasks and the different situations in which ASHA work and the changing context in which their role is interpreted. This study therefore used a mixed-methods approach (MMA) to assess and explore ASHAs’ perspectives of their workload alongside that of local healthcare colleagues in both rural and village contexts.\n\nBackground: \nGlobally, Community Health Workers (CHWs) are integral contributors to many health systems. In India, Accredited Social Health Activists (ASHAs) have been deployed since 2005. Engaged in multiple health care activities, they are a key link between the health system and population. ASHAs are expected to participate in new health programmes, prompting interest in their current workload from the perspective of the health system, community and their family.   \n  \nMethods: \nThis MMA design  was conducted in rural and tribal Primary Health Centers (PHCs), in Pune district, Western Maharashtra, India. All ASHAs affiliated with these PHCs were invited to participate in the quantitative study, those agreeing to contribute in-depth interviews (IDI) were enrolled in an additional qualitative study. Key informants’ interviews  were conducted with the Auxiliary Nurse Midwife, Block Facilitators and Medical Officers of the same PHCs. Quantitative data were analysed using descriptive statistics. Qualitative data were analysed thematically.\n\nResults: \nWe recruited 67 ASHAs from the two PHCs.  ASHAs worked up to 20 hours/week in their village of residence, serving populations of  approximately 800-1200, embracing an increasing range of activities, despite a workload that contributed to feelings of being rushed and constant tiredness. They juggled household work, other paid  jobs and their ASHA activities. Practical problems with travel added to time involved, especially in tribal areas where transport is lacking. Their sense of benefiting the community and respect and recognition in village brought happiness and job satisfaction. They were willing to take on new tasks. ASHAs perceived themselves as voluntary community health workers rather than as ""health activists.""\n\nConclusions:\nASHAs were struggling to balance their significant ASHA workload, and domestic tasks. They were proud of their role as CHWs and willing to take on new activities. Strategies to recruit, train, enhance skills, incentivise, and retain ASHAs, need to be prioritised.\n\nfor more information, please see :\nhttps://www.ed.ac.uk/usher/respire/chronic-respiratory-disorders/asha-workload', 'isPartOf': 'BREATHE', 'associatedMedia': ['https://www.ed.ac.uk/usher/respire/chronic-respiratory-disorders/asha-workload']}",4c171540-5caa-42f7-868d-1d4d7b969f11,https://web.www.healthdatagateway.org/dataset/4c171540-5caa-42f7-868d-1d4d7b969f11,"{'usage': {'resourceCreator': ['RESPIRE Collaboration']}, 'formatAndStandards': {'format': ['text'], 'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'language': ['en']}, 'access': {'accessRights': ['https://www.ed.ac.uk/usher/respire/about'], 'jurisdiction': ['IN'], 'deliveryLeadTime': 'OTHER', 'dataController': 'RESPIRE', 'dataProcessor': 'RESPIRE'}}","{'temporal': {'timeLag': 'NOT APPLICABLE', 'endDate': '2019-06-30', 'accrualPeriodicity': 'STATIC', 'startDate': '2018-09-01'}, 'origin': {'collectionSituation': ['COMMUNITY']}}",2020-08-25T18:09:32Z,"[{'observedNode': 'PERSONS', 'measuredValue': '1', 'observationDate': '30/06/2019', 'measuredProperty': 'Count'}]",4.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-11-01T11:53:26Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Prevention, detection, treatment: adult lung disease/cancer in rural Tamil Nadu', 'keywords': ['adult', 'treatment', 'India', 'lung cancer', 'lung diseases', 'rural', 'Tamil Nadu', 'health worker', 'RESPIRE', 'prevention', 'BREATHE', 'low-income', 'detection'], 'contactPoint': 'RESPIRE@ed.ac.uk', 'abstract': 'Prevention, detection and treatment of adult lung diseases including lung cancer in a poor, rural population in Tamil Nadu: feasibility study', 'publisher': {'contactPoint': 'RESPIRE@ed.ac.uk', 'memberOf': 'HUB', 'name': 'BREATHE'}}",2581994d-5be2-4465-bb62-60c4c97e8e2b,"{'typicalAgeRange': '>18', 'spatial': 'India', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '736a9d09-83c7-4cfa-ae82-a10b2a69efc8', '1.0.0': '4cb9082f-619d-4be2-8d09-641f2c573d38', 'latest': '4cb9082f-619d-4be2-8d09-641f2c573d38'}","{'description': 'Chronic respiratory diseases (CRDs) in low resource settings are neglected and often poorly diagnosed, leading to missed opportunities for early initiation of treatment and poor patient pathways. For example, in India, lung cancer often emerges on a background of chronic respiratory symptoms and is often not diagnosed at all – or at a very late stage. Because of late presentation and a range of other factors, survival from lung cancer in India is very low. At present we know very little about how knowledge and attitudes relating to CRD in poor, rural populations in India might be influenced by health and behavioural interventions. Similarly, compliance with treatments offered is poorly understood. Psychological theory-based interventions must be culturally appropriate and grounded in the local context. As such, it’s vital we develop our understanding if we are to change behaviours and reduce exposure to common risk factors, such as smoking and indoor cooking smoke.                         \n\nThe project will determine the feasibility of an intervention study of Health Care Worker (HCW)-delivered respiratory package including health education drawing on psychological theory of planned behaviour in the intervention arm and Health Belief Model in control arm and delivery of treatment and follow-up. \n\nFor further information, see: https://www.ed.ac.uk/usher/respire/chronic-respiratory-disorders/adult-lung-disease', 'isPartOf': 'BREATHE'}",4cb9082f-619d-4be2-8d09-641f2c573d38,https://web.www.healthdatagateway.org/dataset/4cb9082f-619d-4be2-8d09-641f2c573d38,"{'usage': {'resourceCreator': 'RESPIRE Collaboration'}, 'access': {'deliveryLeadTime': 'OTHER', 'dataController': 'RESPIRE', 'dataProcessor': 'RESPIRE', 'accessRights': 'Access is managed on a project-by-project basis. Contact the RESPIRE team: https://www.ed.ac.uk/usher/respire/about/projects', 'jurisdiction': 'IN'}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'conformsTo': ['LOCAL']}}","{'temporal': {'endDate': '2020-09-30', 'startDate': '2018-10-01'}}",2020-09-01T10:12:06Z,,1.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-04-14T08:28:29Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Obesity Research Biobank Syndicate (ORBiS)', 'publisher': {'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE', 'contactPoint': 'r.zakeri@ucl.ac.uk'}, 'doiName': 'Not Available', 'keywords': ['Obesity', 'Research', 'ORBiS', 'UKCRC Tissue Directory', 'Syndicate', 'Biobank'], 'abstract': 'Collection of samples and data across the following diseases: Obesity (disorder).', 'contactPoint': 'r.zakeri@ucl.ac.uk'}",264a1987-a8cb-4a83-81e0-70b4c3893b7d,"{'spatial': 'England', 'physicalSampleAvailability': ['IN PROGRESS'], 'typicalAgeRange': '15-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '37fb4254-a440-4ecf-b797-2edbbc84fcb4', '3.0.0': '4cde083a-bf5a-4f57-97c6-38632e10050d', '1.0.0': 'f17c47cd-547e-4437-9325-7a9934a8c3a7', '2.0.0': '13a931c1-18cf-4d60-be79-a527acb0a36d', 'latest': '4cde083a-bf5a-4f57-97c6-38632e10050d'}","{'description': 'Bariatric surgery produces substantial, long-term weight loss with reduced morbidity and mortality. Genetics can strongly influence this response, as well as the initial propensity to obesity. Several genes have been implicated but more in-depth mechanistic studies are needed to understand how genes affect energy regulation and mediate the beneficial effects of bariatric surgery.\nThe Obesity Research Biobank Syndicate (ORBiS) aims to fulfil this need. It provides a comprehensive collection of high-quality biological samples and patient data to facilitate mechanistic research and help translate it to improved treatments for patients. \nPatients undergoing bariatric surgery are recruited from multiple centres in the UK. With informed consent, blood or saliva samples are collected pre-operatively and tissue collected during surgery. Samples include: adipose tissue (subcutaneous and visceral), muscle, liver, stomach and small intestine. Relevant clinical and demographic data are linked and stored pseudo anonymised in a secure database. Tissue collections are transported to and processed in the ORBiS laboratory at University College London, and stored at UCL-Royal Free Hospital Biobank for future use.\nResearch programmes will be supported within and beyond the contributing sites. External researchers will be required to obtain individual REC approval prior to submitting an application.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",4cde083a-bf5a-4f57-97c6-38632e10050d,https://web.www.healthdatagateway.org/dataset/4cde083a-bf5a-4f57-97c6-38632e10050d,"{'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}, 'access': {'accessRequestCost': 'Not specified', 'dataController': 'University College London', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'jurisdiction': 'GB-ENG', 'dataProcessor': 'Not Applicable', 'accessRights': 'Please contact the publisher using Contact Point details provided.'}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2017-01-01'}}",2020-01-13T17:16:35Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:09:22Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Oesophago-Gastric Cancer Audit - clinical dataset', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'HQIP', 'contactPoint': 'DataSharing@hqip.org.uk'}, 'abstract': 'The NOGCA data set includes continuously ascertained, record-level data on the diagnosis, investigation and management) received in hospitals in England and Wales for patients with invasive, epithelial cancer of the oesophagus, gastro-oesophageal junction', 'contactPoint': 'DataSharing@hqip.org.uk', 'keywords': ['NOGCA', 'Dataset', 'Clinical', 'Oesophago-Gastric', 'Cancer', 'Audit']}",306274ee-a098-43cc-b113-2df8116a8703,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'3.0.0': '436a0db6-4464-41d2-89ab-2795049b10b8', '5.0.0': '4d0c3779-9251-4a4a-9eff-41a47869157f', '4.0.0': 'e10660af-b420-4e25-8fc9-ea451da1dcfb', '2.0.0': 'ccae9df7-f40b-4bd6-8c9f-5677ff074c03', '1.0.0': '033686c6-871f-4460-8405-bf0eec966a47', '0.0.1': 'c2dbe82f-8707-4c56-86a8-dd8f71402d62', 'latest': '4d0c3779-9251-4a4a-9eff-41a47869157f'}","{'description': 'The NOGCA dataset includes continuously ascertained, record-level data on the diagnosis, investigation and management) received in hospitals in England and Wales for patients with invasive epithelial cancer of the oesophagus, gastro-oesophageal junction (GOJ) or stomach cancer.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",4d0c3779-9251-4a4a-9eff-41a47869157f,https://web.www.healthdatagateway.org/dataset/4d0c3779-9251-4a4a-9eff-41a47869157f,"{'access': {'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data', 'jurisdiction': 'GB-GBN', 'deliveryLeadTime': 'OTHER'}, 'formatAndStandards': {'language': ['en']}}",,2020-01-13T14:55:18Z,,5.0.0,,2021-04-14T08:15:15Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Paediatric Intensive Care Audit Network - core dataset (admission)', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'HQIP', 'contactPoint': 'DataSharing@hqip.org.uk'}, 'contactPoint': 'DataSharing@hqip.org.uk', 'keywords': ['Core', 'Paediatric', 'PICANet', 'PICU', 'Audit', 'Admission'], 'abstract': 'PICANet records treatment details of all critically ill children in paediatric intensive care units (PICUs). This dataset includes admission details, medical history, blood tests, diagnoses and procedures, interventions, discharge and 30 day survival.'}",4ca76471-6970-4ad4-87c7-fae77a98cbf5,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'b63ca8b7-f763-4185-82e1-9ebbdd12eb98', '3.0.0': '4d1271dd-b256-454b-9b13-be38bef73f15', '1.0.0': '79ccc583-45d9-4054-927c-9e6e3b3212c5', '2.0.0': '0217114b-6847-4aae-9d76-4d52acea2bcc', 'latest': '4d1271dd-b256-454b-9b13-be38bef73f15'}","{'description': 'Paediatric Intensive Care Audit Network (PICANet) is an audit database recording details of the treatment of all critically ill children in paediatric intensive care units (PICUs).  The admission dataset includes admission details, past medical history, blood tests, diagnoses and procedures, daily interventions, discharge and 30 day survival.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",4d1271dd-b256-454b-9b13-be38bef73f15,https://web.www.healthdatagateway.org/dataset/4d1271dd-b256-454b-9b13-be38bef73f15,"{'access': {'deliveryLeadTime': 'OTHER', 'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data\nhttps://www.picanet.org.uk/data-collection/data-requests/', 'jurisdiction': 'GB-GBN'}, 'formatAndStandards': {'language': ['en']}}",,2020-01-13T14:15:34Z,,3.0.0,,2021-04-14T08:09:34Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'NIHR BioResource: SNP chip data', 'publisher': {'identifier': '607db9c4e1f9d3704d570d3f', 'memberOf': 'ALLIANCE', 'name': 'NIHR BIORESOURCE'}, 'keywords': ['recall', 'SNP chip', 'microarray', 'biobank', 'Affymetrix', 'Thermofisher', 'feasibility', 'cohort discovery'], 'contactPoint': 'nbr@bioresource.nihr.ac.uk', 'abstract': 'In order to do recall by genotype, participants have their DNA tested using one the SNP chip arrays from eg. Illumina and Affymetrix (now Thermosfisher).  The current iteration is the UK Biobank v2.1 from Thermofisher, which measures ~820k markers.'}",c388676c-a5e5-419c-967c-239c1f0c3c5c,"{'typicalAgeRange': '18-85', 'spatial': ['United Kingdom (https://www.geonames.org/2635167/united-kingdom.html)'], 'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM'], 'followup': '1 - 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '52a467b0-5401-4818-9c16-2e41d68704c1', '1.0.0': '4d560a49-6ab2-460c-980f-94d76d1527f2', 'latest': '4d560a49-6ab2-460c-980f-94d76d1527f2'}","{'description': 'The NIHR Bioresource consists of several groups of participants: ~70k from the general population and blood donors (COMPARE, INTERVAL and STRIDES studies); ~19k with one of ~50 rare diseases (RD) including a ~5k pilot for GEL; ~30k with Inflammatory Bowel Disease (IBD) which include the members of Gut Reaction, the Health Data Research Hub for IBD; and ~20k with Anxiety or depression (GLAD study). It intends to extend recruitment in all areas, and to other rare and common disease groups, with a target of ~300k by 2022.  The NIHR BioResource extracts DNA from blood and saliva samples taken at recruitment, and measures a panel of SNPs on each DNA sample, using a commodity SNP genotyping array from e.g. Illumina or Affymetrix (now Thermofisher). This is used to pre-screen or match participants when inviting them to take part in experimental medicine studies. De-identified versions of this data is available to researchers investigating the feasibility of future studies. The Technical Metadata describes a SNP annotation file – i.e. what the chip is measuring. The file itself has as many rows as there are SNPs represented on the chip, and is proprietary to the manufacturer, although deeply familiar to researchers.', 'isPartOf': 'Not Applicable'}",4d560a49-6ab2-460c-980f-94d76d1527f2,https://web.www.healthdatagateway.org/dataset/4d560a49-6ab2-460c-980f-94d76d1527f2,"{'usage': {'resourceCreator': ['NIHR BioResource. Acknowledgement text: ""We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.""'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': ['RESEARCH USE ONLY'], 'isReferencedBy': ['Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/']}, 'access': {'deliveryLeadTime': '2-6 MONTHS', 'accessService': ""Some de-identified data may be released to researchers in a platform-independent filetype (e.g. CSV). However, access to any data acquired via NHS Digital is subject to strict restrictions governing where data may be accessed and from which locale - access is currently via an experimental safe haven built in Microsoft Azure. It is also intended that SNP data be available from the European Genome-Phenome Archive (EBI's EGA) via managed access - https://ega-archive.org/"", 'jurisdiction': ['GB-GBN'], 'accessRights': ['https://bioresource.nihr.ac.uk/using-our-bioresource'], 'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)', 'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)', 'accessRequestCost': ['https://bioresource.nihr.ac.uk/using-our-bioresource/industry-researchers/industry-bioresource-usage-costs/']}, 'formatAndStandards': {'format': ['text/plink', 'text/vcf'], 'vocabularyEncodingScheme': ['OTHER'], 'conformsTo': ['LOCAL'], 'language': ['en']}}","{'temporal': {'distributionReleaseDate': '2021-03-31', 'accrualPeriodicity': 'QUARTERLY', 'startDate': '2019-07-15', 'timeLag': '2-6 MONTHS'}, 'origin': {'source': ['MACHINE GENERATED'], 'collectionSituation': ['OTHER'], 'purpose': ['STUDY']}}",2021-02-21T17:00:39Z,[{}],1.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['ALL', 'COVID-19 SARI-Watch (formerly CHESS)', 'Civil Registration - Deaths', 'Covid-19 Second Generation Surveillance System', 'Emergency Care Data Set (ECDS)', 'Hospital Episode Statistics Accident and Emergency', 'Hospital Episode Statistics Admitted Patient Care', 'Hospital Episode Statistics Critical Care', 'Hospital Episode Statistics Outpatients', 'Intensive Care National Audit & Research Centre (ICNARC) Case Mix Programme (https://www.icnarc.org/Our-Audit/Audits/Cmp/About)']}",2021-11-25T12:01:08Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 33, 'structuralMetadata.columnName': 33, 'structuralMetadata.columnDescription': 33, 'structuralMetadata.dataType': 33, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '108bdb9c-bffd-44b1-8d23-feb5c929ce77', 'description': 'Axiom UKBB v2.r1', 'name': 'Axiom_UKBB_V2', 'dataElementsCount': 33, 'dataElements': 'f2aa2a84-f56f-4be7-89b5-6da9d360ab65, 3486d8d1-b7fc-4ba2-9b4c-6bb822e2987c, bbae5f0a-0f4b-4060-a6f3-77387026134e, 6fa2c10d-c9bd-4184-8446-7898fdc743e1, fb82b7b7-e5a0-4f28-9a20-786a0b4fc861, dd1c2a27-06aa-45de-8a8d-4c06421e9955, 632e9b77-40c0-485d-8b22-674a86204342, 169c0f4f-5039-4df6-8e8d-a41df66c35da, 4c93ee35-ef62-4f31-a626-3f4763b8ffa7, cd604415-db8d-4f8b-bf64-30482c3892eb, d11113d1-1c01-48c7-ae12-b88b1acf1057, 8610ca6b-0506-49bd-ab22-153f18d7ba3e, 274cc971-d660-4369-ac1b-b9ed590e3d12, a07e18ff-082d-4166-999c-1b37ef6409ee, 914cdd8f-fe7b-4162-b54c-22f18322b8e3, 855d1889-4b71-4c92-96a7-88ba3ec08f93, c619bb4a-8c24-4491-a113-f235e026afc3, 5122aa94-1c66-4903-8df8-10d8ac138e65, 2bb5ebc8-5646-4514-a2e1-0f7f6fc43945, 010e1e7f-c144-4b59-9ef0-eb0f3084b7e0, e8b98954-c692-4d24-9134-a436b0448585, 4e8c4295-ce5a-4083-8586-0e713fad4133, cb11d148-ee83-4a64-b06c-3c8a53cfa07b, 47ef4b6d-0a84-41f1-b5d0-3c743afe9120, 82718cd1-ef1a-4de3-b5d9-59ae47586952, ed1b8bf5-3c67-4494-b65d-27bb415cf9cd, 686f59bd-9cae-4b20-a807-c522e492aaa2, ca6223d3-86a7-4120-9e2c-65a26ae6442d, 5a2e88ca-8cd6-454b-afd5-0917d1bf090a, b2eaca07-c36f-4137-b626-228a94274910, 4dc76c1b-5d8d-4521-b1c6-7334aa485bac, ec89b987-e6b3-482d-b6e7-c26be941be69, f20929f4-a9ec-4229-8c81-9638b4d782de'}]}"
"{'title': 'POUT-T', 'keywords': ['Malignant tumour of urinary bladder (disorder)', 'POUT-T', 'UKCRC Tissue Directory', 'UTUC', 'Hematologic neoplasm (disorder)', 'Transitional cell carcinoma'], 'publisher': {'contactPoint': 'R.T.Bryan@bham.ac.uk', 'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE'}, 'doiName': 'Not Available', 'abstract': 'Collection of samples and data across the following diseases: Malignant tumour of urinary bladder (disorder), Transitional cell carcinoma.', 'contactPoint': 'R.T.Bryan@bham.ac.uk'}",c6e0e70e-7f23-4a44-a2cf-1d7d87be7808,"{'typicalAgeRange': '15-150', 'physicalSampleAvailability': ['PLASMA', 'URINE', 'WHOLE BLOOD'], 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '1787828b-cb77-4ec3-b273-e0943dcff9a9', '3.0.0': '4dd3f23c-44be-4126-aac5-ba655d07855c', '2.0.0': '9e8982cb-6e2b-4c6e-b9d5-80a3794eb1dc', '1.0.0': '00af6821-afef-4df9-9ee8-41b32fa83c02', 'latest': '4dd3f23c-44be-4126-aac5-ba655d07855c'}","{'description': 'POUT-T: The translational substudy of a phase III randomised trial of peri-operative chemotherapy versus surveillance in upper tract urothelial cancer.\nThe objectives of POUT-T are: to investigate the molecular pathogenesis of Upper Tract Urothelial Carcinoma (UTUC); to identify prognostic and predictive biomarkers of UTUC; and to identify diagnostic biomarkers of UTUC.\nPOUT-T participants are requested to provide the following specimens pre-operatively, post operatively, 6 months following surgery, and at disease recurrence: whole blood for germline DNA analysis; whole blood for cell-free DNA analysis; first morning urine for DNA, proteome and metabolome analyses. In addition, paraffin-embedded tumour tissue from nephro-ureterectomy is requested for immunohistochemistry and DNA/RNA analyses.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",4dd3f23c-44be-4126-aac5-ba655d07855c,https://web.www.healthdatagateway.org/dataset/4dd3f23c-44be-4126-aac5-ba655d07855c,"{'access': {'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED.', 'dataController': 'The Institute of Cancer Research', 'dataProcessor': 'Not Applicable', 'accessRights': 'Please contact the publisher using Contact Point details provided.', 'accessRequestCost': 'Not specified', 'jurisdiction': 'GB-ENG'}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}}","{'temporal': {'startDate': '2014-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:16:36Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:11:10Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Death Registration data for CPRD GOLD', 'contactPoint': 'enquiries@cprd.com', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c2e1f9d3704d570cee', 'name': 'CPRD'}, 'doiName': 'https://doi.org/10.48329/wq7v-x832', 'abstract': 'CPRD GOLD linked Death Registration data from the Office for National Statistics (ONS) include information on the official date and causes of death.', 'keywords': ['Deaths', 'Cause', 'Registration']}",1d35e229-13eb-4be1-9dae-4752b6c27c4a,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/6269131/england.html'], 'followup': 'OTHER', 'typicalAgeRange': '0-115'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'3.0.0': '87244819-4596-4e5d-baaa-f3fe4eb74b4b', '5.0.0': '4eb62568-e89c-4d85-af0e-095e1e5b8a36', '2.0.0': '90ab3276-5b49-4445-ade2-ab5cc3f473e1', '4.0.0': 'cf1feb84-837e-4f51-8320-6171f4970a5f', '1.0.0': '87d46263-5dbb-4364-afd7-54e15a407ca5', '0.0.1': 'f5b1a77f-9c01-43b5-a7b0-80cc37e076d1', 'latest': '4eb62568-e89c-4d85-af0e-095e1e5b8a36'}","{'description': 'CPRD GOLD linked Death Registration data from the Office for National Statistics (ONS) include information on the official date and causes of death.', 'isPartOf': 'CPRD GOLD', 'associatedMedia': ['https://www.cprd.com/linked-data']}",4eb62568-e89c-4d85-af0e-095e1e5b8a36,https://web.www.healthdatagateway.org/dataset/4eb62568-e89c-4d85-af0e-095e1e5b8a36,"{'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE', 'NO LINKAGE', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'dataUseRequirements': ['GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'resourceCreator': ['ONS'], 'isReferencedBy': ['Gallagher,AM et al. (2019). The accuracy of date of death recording in the Clinical Practice Research Datalink GOLD database in England compared with the Office for National Statistics death registrations. Pharmacoepidemiol Drug Saf. issn: 1053-8569. doi: 10.1002/pds.4747.'], 'investigations': ['https://www.cprd.com/protocol-list']}, 'access': {'accessRights': ['HTTPS://CPRD.COM/DATA-ACCESS'], 'deliveryLeadTime': 'VARIABLE', 'accessRequestCost': ['https://www.cprd.com/pricing'], 'jurisdiction': ['GB-ENG'], 'dataProcessor': 'CPRD', 'dataController': 'Clinical Practice Research Datalink (CPRD)', 'accessService': 'Access to CPRD data, including UK Primary Care Data, and linked data such as Hospital Episode Statistics, is subject to protocol approval via CPRD’s Research Data Governance (RDG) Process. Independent scientific and patient advice is provided by Expert Review Committees (ERCs) and the Central Advisory Committee (CAC): https://www.cprd.com/research-applications'}, 'formatAndStandards': {'language': ['en'], 'format': ['Tab delimited text'], 'vocabularyEncodingScheme': ['ICD10'], 'conformsTo': ['NHS DATA DICTIONARY']}}","{'temporal': {'accrualPeriodicity': 'QUARTERLY', 'startDate': '1998-01-02', 'timeLag': 'MORE 6 MONTHS', 'endDate': '2021-03-29', 'distributionReleaseDate': '2022-02-04'}, 'origin': {'purpose': ['ADMINISTRATIVE'], 'source': ['EPR'], 'collectionSituation': ['OTHER']}}",2020-01-10T18:12:16Z,"[{'observedNode': 'PERSONS', 'measuredValue': 1158177, 'disambiguatingDescription': 'Number of CPRD GOLD patients matched to single death identifier', 'observationDate': '04/02/2022', 'measuredProperty': 'Count'}]",5.0.0,"{'derivation': ['N/A'], 'tools': ['[]'], 'qualifiedRelation': ['CPRD GOLD', 'CPRD GOLD SGSS', 'CPRD GOLD CHESS', 'CPRD GOLD ICNARC', 'HES Admitted Patient Care data for CPRD GOLD', 'HES Outpatient data for CPRD GOLD', 'HES Accident and Emergency data for CPRD GOLD', 'HES Diagnostic Imaging Dataset for CPRD GOLD', 'Patient postcode linked deprivation measures for CPRD GOLD', 'Practice postcode linked deprivation measures for CPRD GOLD', 'Rural-Urban classification for CPRD GOLD', 'Cancer registration data for CPRD GOLD', 'National Radiotherapy Dataset (RTDS) for CPRD GOLD', 'Systemic Anti-Cancer Treatment (SACT) data for CPRD GOLD', 'Mental Health Dataset (MHDS) for CPRD GOLD', 'Mother-Baby Link for CPRD GOLD', 'Pregnancy Register for CPRD GOLD']}",2022-02-18T12:04:01Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 34, 'structuralMetadata.columnName': 34, 'structuralMetadata.columnDescription': 34, 'structuralMetadata.dataType': 34, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '792ca04f-8867-48e8-9ce6-629129bd168b', 'description': 'Information on the official date and causes of death (using ICD codes).', 'name': 'Death', 'dataElementsCount': 34, 'dataElements': '362e9348-cde3-4b5c-a605-f3041ccfe068, 4593fc24-7ca7-476e-998b-2dd00e6b18f8, 3067124f-d7b1-4307-bdb4-f87ad49167a4, 1bf3d1f4-dddd-4084-8a39-3f751a13d4e5, ad91bcea-89c0-4783-92b2-682049b3c833, 0a0dee69-d7a6-4188-8adc-f19702908dfb, e004f19f-603a-4001-b588-4fd41389e09c, 3cb54fd9-fc17-4ce4-955d-7fc0e8e1baec, 77c5ee09-7779-4892-ac53-1cbf31d0eb92, 5d0f9782-d7ee-4723-a3c9-3b1c325a0b3c, 6f6d76a3-efa3-42d2-8f15-fc539a07e2a8, e34d1335-81f0-47e5-bbf8-1be711c5dda7, 0ec449d2-e8cf-4724-b574-18ae4096038b, 44b673f4-da8b-4bf6-bda4-eb735e45b777, b5e61e61-d23d-4b29-9439-3a0597f9cf88, 51209481-7e52-41ca-b1d6-5daea1975519, 0c5f3335-a088-4846-a7d3-98f14749a6d0, d97f6068-8437-4005-8ce7-6127e64d361e, f20ab055-4dda-440b-a3bb-9a5ef9869ef3, 078b811d-d23e-4b07-867f-d19e04c6dc8a, 8805be6f-9a73-4c87-8819-a390acfd43d2, d3c0cbbb-414c-4c28-9118-77ff433dfcf9, fdcfc9ac-d36f-48f4-8933-68af6d59e369, fba03e51-62d2-43c7-ba6d-d11541bd79e0, f48443b7-8b89-4639-9820-f8da5077b212, 32af4097-d1a8-4260-91d0-c2b62ec69f2f, 31084066-7cb1-4ea1-916e-e1f123cbc0d3, 53aafc70-4f57-4307-9f64-819a1dfe2434, f85a3db3-99c9-4884-81d7-764dcdb47288, d4867e0e-3578-474f-9564-7c42d4159668, 6b467a25-662a-4404-8e11-ad54f72c528c, 6e1b0395-d39e-4081-ae3a-fddb01e858d6, d12a041a-97de-4cf0-8a5a-78f3ec3479dd, a3b92f8f-99e8-43bb-a279-959f6cfc621d'}]}"
"{'title': 'Longitudinal hospital prescribing data for >48,000 deeply phenotyped patients', 'keywords': ['Hospitalised patients', 'Acute Medicine', 'Emergency Departments', 'Medicines reconciliation', 'prescribing', 'administration', 'antibiotics', 'antivirals', 'angina', 'Myocardial Infarction', 'digoxin', 'Intravenous fluids', 'missed doses', 'medicines', 'tablets', 'infusions', 'nebulisers', 'subcutaneous', 'intramuscular', 'Longitudinal', 'individually linked', 'health journey', 'healthcare utilisation', 'Patient', 'demographics', 'co-morbidities', 'ICD-10', 'Serial', 'Structured', 'acute care process', 'time stamped', 'wards', 'presenting complaints', 'physiology readings', 'NEWS2', 'SEWS', 'drug history', 'medication history', 'pharmacy interventions', 'staff grades'], 'publisher': {'name': 'PIONEER', 'memberOf': 'HUB', 'identifier': '607db9c5e1f9d3704d570d5f'}, 'abstract': 'Deeply phenotyped dataset of longitudinal prescribing data for >48,000 patients from 2017 onwards. Investigation, intervention and treatment data. Granular co-morbidities, serial physiology readings, blood biomarkers with outcome data.', 'contactPoint': 'PIONEER@UHB.NHS.UK'}",6c8894f0-3675-4e65-baa8-88ce539b3fd1,"{'spatial': ['United Kingdom,England,West Midlands'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '18-110', 'followup': '1 - 10 YEARS', 'pathway': 'Data is representative of the multi-ethnicity population within the West Midlands (42% non white). Data includes all patients admitted during this timeframe, with National data Opt Outs applied, and therefore is representative of admissions to secondary care. Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '8257e52b-acfb-4dab-8552-756bc12da659', '2.0.0': '4f32f054-0183-4515-8c18-00cd7a5a63af', 'latest': '4f32f054-0183-4515-8c18-00cd7a5a63af'}","{'description': 'Background. The Healthcare Safety Investigation Branch (HSIB) published a report in 2020 reviewing the need to have a better method of identifying and preventing medication errors. 237 million medications errors occur in England per year. 5% of hospital admissions are related to medication errors, side effects or drug/drug interactions. Older patients, those with multiple long-term conditions and polypharmacy are most likely to experience the worse outcomes from medicine related harm. This dataset provides highly detailed medicine prescribing, indication, administration and patient outcome data, focusing on hospitalised patients in acute care.\n\nPIONEER geography. The West Midlands (WM) has a population of 5.9 million and includes a diverse ethnic and socio-economic mix.\n\nEHR. UHB is one of the largest NHS Trusts in England, providing direct acute services and specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds and an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary and secondary care record (Your Care Connected) and a patient portal “My Health”. \n\nScope: All hospitalised patients in UHB Acute Medicine (AMU) and Emergency Departments (ED) from November 2017 to October 2020, curated to focus on medicines reconciliation. Longitudinal and individually linked, so that the preceding and subsequent health journey can be mapped and healthcare utilisation prior to and after admission understood. The dataset includes highly granular patient demographics and co-morbidities taken from ICD-10. Serial, structured data pertaining to acute care process (timings and wards). Along with presenting complaints, physiology readings (NEWS 2 and SEWS score). Includes all prescribed treatments, drug history, medication history and pharmacy interventions.\n\nAvailable supplementary data: Matched controls; ambulance, OMOP data, synthetic data.\n\nAvailable supplementary support: Analytics, Model build, validation and refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.'}",4f32f054-0183-4515-8c18-00cd7a5a63af,https://web.www.healthdatagateway.org/dataset/4f32f054-0183-4515-8c18-00cd7a5a63af,"{'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'vocabularyEncodingScheme': ['ICD10'], 'format': ['SQL']}, 'usage': {'resourceCreator': ['This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)'], 'dataUseLimitation': ['RESEARCH USE ONLY'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS']}, 'access': {'dataProcessor': 'NOT APPLICABLE', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'jurisdiction': ['GB-ENG'], 'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/'], 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'deliveryLeadTime': '1-2 MONTHS'}}","{'origin': {'purpose': ['CARE'], 'collectionSituation': ['ACCIDENT AND EMERGENCY', 'IN-PATIENTS'], 'source': ['EPR']}, 'temporal': {'timeLag': 'OTHER', 'accrualPeriodicity': 'QUARTERLY', 'startDate': '2017-11-01', 'endDate': '2020-10-01', 'distributionReleaseDate': '2022-02-15'}}",2022-03-11T13:13:15Z,"[{'measuredProperty': 'Count', 'observedNode': 'EVENTS', 'measuredValue': '79287', 'disambiguatingDescription': '79,287 admissions from AMU and ED between 01-11-2017 and 01-10-2020', 'observationDate': '15/02/2022'}]",2.0.0,{'derivation': ['Not Available']},2022-04-12T08:50:52Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 2, 'structuralMetadata.tableName': 2, 'structuralMetadata.tableDescription': 2, 'structuralMetadata.dataElementsCount': 90, 'structuralMetadata.columnName': 90, 'structuralMetadata.columnDescription': 90, 'structuralMetadata.dataType': 90, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '4fe0a1f6-644d-4caf-a4e4-781f3775f842', 'description': 'Pharmacy Intervention details', 'name': 'PDR46Interventions', 'dataElementsCount': 4, 'dataElements': '31198711-07e6-47e8-ad95-9d60ea5493ca, ade51763-d97f-4d7a-afdb-aafc042a2c0c, 6d981f5b-f16a-4475-bc3b-9acb30e70269, d80629eb-17c5-4031-ae8c-46a4fe1bfcec'}, {'id': '98be24f8-ef27-4ea8-be28-9a83c910c435', 'description': 'Spell admission details', 'name': 'PDR46Admission', 'dataElementsCount': 86, 'dataElements': '6e9d8923-845c-4df6-9042-e8b78adf9872, 65c6f47e-e43a-4c10-9617-413d5450be8b, 1d2c133b-3bfc-4717-aaed-58622877fbf7, 2bbadf6b-2f06-4955-98a9-e7ca0ff623b1, dc186e39-4a49-453a-b6e4-38a7497ab796, 75fadebc-cb6b-4a8a-8f49-5b3d6104e968, ce0a4e08-5315-40ff-82ed-5325ed620ea5, 1d98f1ee-be2d-4347-8e2c-e9a18f71be21, 7bc8863e-2bf2-4800-85b4-e0d59f1c099f, b52abb43-4b84-443a-a563-6583f97c5692, 65db0407-dbe9-41b4-bcc7-a74bc9c022a9, c5bfd329-dba6-4375-a7d8-037a57aa5321, 2a1dd24e-deed-4a76-b552-29f4b2e74967, 4bb63804-0702-4681-81bb-297916dc8850, 1a0b8c2d-920e-4e97-9d20-ea39609f2b80, 2ddfcd2a-33a3-4930-a146-d4138a672a45, 725c00bb-99c7-47a3-a1e8-bfa55cf3e669, 6e353522-3022-4af6-a5cc-7f8c2232b702, 33972140-d851-4d64-92d4-fadf503faa47, 3eb2963c-ce02-4077-b3f7-b8785d8d1a44, 7604048f-eefc-4a53-9d17-736d44b0ab9e, 5b4c247b-9561-46b3-86e0-114dacce6aa6, 9cd6cff1-794a-4730-91f5-d98f5baa87c9, 6a455bfa-449a-45a5-a900-a425535af420, afb907c2-08a4-4b01-a7e6-28c28cfd28e4, 56836970-f1fc-40f2-82ba-6fa01ecbb7e2, b141f368-bd57-4406-8d8e-d4aa5265a05d, ffd3d10d-4383-46f8-8973-364724a157a0, b35bf74e-99ea-481a-91bd-b1862c351f83, 1ea2a8be-1bac-4e38-afce-afaef5bde1ea, 310a1e6c-2ec6-4d1c-9d0b-acdcc6cd987c, c5d944a8-90eb-4e69-93d3-a0ade6687ebf, eed7fe84-01d9-4a56-8bcf-85afa2d3e2f9, a181e8ba-da75-457c-a3e1-6b4de11fa9b1, 4b4a864e-927a-41be-bf9a-b690003e488d, 6e1a02d1-eb9b-4ad8-a484-493205525e2b, b8f159b6-a9b9-4ddb-8f04-91265645763a, 47ace43b-2e2e-462a-a84f-3aff7e2f93e3, 92b2cd52-661e-4c68-b55e-0b4b1911507b, 20310833-32f8-4a9a-9c5b-41ddf15f5c71, 6934089d-d7d7-4e97-8b05-b0f0861d9253, 4df83d35-eb8e-4ca9-9492-d4a37334fcf8, c68e0bf2-f21e-4bcd-93d7-2da9b28e1eb2, 3413a940-98ce-4de1-9157-e680c1856f3d, ca8a3d07-9f21-4e00-9ccd-3e3097c65e66, b555dc80-732f-49fb-b19e-dffbb0e70942, 9feca55c-b245-4f27-be65-cc67b393ae55, ecf06b1c-ec82-4d6a-85f0-a70220906bea, 841c50c3-e012-440c-bbdb-86564483a4fd, c66d3932-ef68-4ef5-a780-e5b82b94b0d8, 89b0dd77-e359-4d30-93ac-c18e0d78c147, 4e3e5b9b-90ba-477c-a4a2-27ab631e08a2, d46191a4-368d-4620-9c5e-105975e48fe3, 15494f39-31b4-43fc-996a-a7a8bd1333ea, bb870576-0fbd-49d6-a4ac-851539575f8b, db31865c-6251-41bd-9530-ce20f1626c45, 9c7b2e47-aaed-490f-a103-e4c0cfd7a8b4, 2c080ce9-ba5e-4e39-9219-df244bf31773, 964cc557-3240-4a3f-be56-8e4d12ccd3ce, 18d15a8f-a6bc-4a25-9a73-e58a0400fcf2, 305ce298-e677-42fb-9180-d2f5de77d74b, a9527984-b1ef-4384-a90b-5c310f685a76, 77b50690-3f05-4757-ab0c-8c6d5dbb5fdc, 9e1bf3fa-4bee-44dc-ba04-22e2e33f8109, 3b3eacc0-3104-4861-864e-a056c3f95c79, 985e5e7f-13a8-4347-a79a-aa8ca4e967c2, 28997121-60c0-4f77-b560-ef8ae12048f8, dafb6396-73c0-473a-958e-06b05f7b4d70, 15fbd8b8-593e-4a80-96ee-d7ffb67b7906, fed2df43-932b-4eeb-93b3-834ce587f3a8, 7ee761d9-f73c-4cfd-9807-84a56e809a7b, 6b5c6d3f-9cda-4609-9523-376c57065165, 3ccebb5b-2216-4db2-b67d-075913cf0661, 9a1695eb-b494-4f0e-a72d-690f183d07ac, 87232b4f-668d-41d6-93bc-8f2391d16635, 79e78877-4e3a-40e1-9290-939c2f1acac6, 69182856-faa0-468c-a0a6-4ffc7ed297a5, 6941e2c3-56dc-4569-b3c8-9b865a123a14, d9e1887d-e5ca-455f-8996-a00d66342e20, d48d3be6-8507-4831-87e3-da31946d1468, 14d1975a-9e83-4b78-9e51-2322ee23865e, a3362aab-40ff-4374-8f62-24ceaa9d8632, 6f3876f3-887b-49b9-821c-8cebb0d22700, 40cddc1d-d3c1-41b3-b6c4-b1da9b4fffff, 6c365edf-a8de-4283-b9b0-72cd326b71a0, ca5e8f46-9f27-4c23-be34-dd023a640d8e'}]}"
"{'title': 'QResearch®', 'publisher': {'name': 'QResearch', 'identifier': '61ba059ac688870b12a4e05b', 'memberOf': 'ALLIANCE'}, 'keywords': ['National Core Study', 'NCS'], 'contactPoint': 'qresearch@phc.ox.ac.uk', 'abstract': 'QResearch® contains anonymised primary care data contributed by GP practices using EMIS Web® including patient registration information and all coded care events that GPs have chosen to record as part of their usual medical practice.'}",777d6ac1-6879-4750-9a85-9e42d28bb8d4,"{'followup': '> 10 YEARS', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['United Kingdom,England'], 'typicalAgeRange': '0-115'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '92749128-f808-4891-9a16-c0a89e813b0b', '2.0.0': '4f385ff8-109c-4e7e-ad09-ee0021864989', 'latest': '4f385ff8-109c-4e7e-ad09-ee0021864989'}",{'description': 'QResearch® contains anonymised primary care data contributed by GP practices using EMIS Web® including patient registration information and all coded care events that GPs have chosen to record as part of their usual medical practice.'},4f385ff8-109c-4e7e-ad09-ee0021864989,https://web.www.healthdatagateway.org/dataset/4f385ff8-109c-4e7e-ad09-ee0021864989,"{'access': {'dataProcessor': 'University of Oxford', 'dataController': 'University of Oxford', 'accessRights': ['https://www.qresearch.org/information/information-for-researchers/'], 'deliveryLeadTime': '1-2 MONTHS', 'accessService': 'Remote Desktop to dedicated Windows Server.\n\nStandard Server Spec:\n16GB RAM, 4 Logical Xeon Gold Processors, 200 GB HDD\n\nMax available Server Spec:\n512GB RAM, 72 Logical Xeon Gold Processors, 2TB HDD. 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"{'title': 'Trusted Research Environments for CVD-COVID-UK / COVID-IMPACT', 'contactPoint': 'bhfdsc@hdruk.ac.uk', 'keywords': ['BHF', 'CVD-COVID-UK', 'BHF DSC', 'BHF Data Science Centre', 'TRE', 'Trusted Research Environment', 'CVD', 'COVID', 'COVID-19', 'Coronavirus', 'Linked', 'LINKABLE', 'Cardiovascular', 'England', 'Scotland', 'Wales', 'GDPPR', 'HES', 'SUS', 'Dataset', 'SGSS', 'SSNAP', 'Death register', 'EHR', 'CHESS', 'NHSD', 'NHS Digital', 'SAIL', 'Safe Haven', 'ICNARC', 'Heart', 'Heart disease', 'Myocardial', 'Stroke', 'Vascular', 'venous', 'Dispensing', 'Prescribing', 'Primary Care', 'Secondary Care', 'SARS-CoV-2', 'SICSAG', 'SICSAG', 'SMR00', 'SMR01', 'ECOSS', 'APC', 'Outpatients', 'MINAP', 'PCI', 'NICOR', 'PEDW', 'ADBE', 'ADDD', 'ADDE', 'CCDS', 'CENW', 'CTTP', 'CARE', 'CDDS', 'CVSP', 'CVVD', 'EDDD', 'EDDS', 'GPCD', 'HQIP', 'ICCD', 'ICNC', 'MIDS', 'NICO', 'NVR', 'NHFA', 'NACSA', 'NACRM', 'NCHDA', 'OPDW', 'OPRD', 'PATD', 'RTTD', 'SDEC', 'TAVI', 'WASD', 'WDDS', 'WDSD', 'WLGP', 'WRRS', 'LIMS', 'NIMS', 'PILLAR 1', 'PILLAR 2', 'PILLAR 3', 'VACCINATION', 'Vaccination', 'Vaccine', 'vaccine', 'A&E', 'Admitted Patient Care', 'COVID-19 Hospitalisation in England Surveillance System', 'Hospital episode statistics', 'ELECTRONIC HEALTH RECORDS', 'Cardiac', 'Cardiovascular Disease', 'co-morbidities', 'multi-morbidity', 'multimorbidity', 'Research', 'arterial', 'Ischaemia', 'Ischemic heart disease', 'COVID-IMPACT', 'National Core Study', 'NCS'], 'publisher': {'memberOf': 'OTHER', 'name': 'BHF Data Science Centre', 'identifier': '607db9c2e1f9d3704d570ce2'}, 'abstract': ""Linkable health datasets in respective TREs in England, Scotland and Wales, accessible to approved researchers who are members of the BHF Data Science Centre's CVD-COVID-UK consortium, and for COVID-IMPACT / National Core Studies projects (England only).""}",7e5f0247-f033-4f98-aed3-3d7422b9dc6d,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150', 'pathway': 'Primary care, secondary care, COVID testing and vaccinations, deaths, ITU/HDU admissions, prescribing/dispensing, cardiovascular audits (NICOR), stroke audits (SSNAP), maternity services, mental health', 'followup': 'OTHER', 'spatial': ['United Kingdom']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': 'e1138fc6-ff49-407d-aa86-e504e5c65b18', '5.0.0': '4f38a842-d30b-41db-9a6e-cd271f8a3392', '3.0.0': '83e177bb-5a05-4ec1-be22-272a0f985957', 'latest': '4f38a842-d30b-41db-9a6e-cd271f8a3392'}","{'description': 'CVD-COVID-UK, co-ordinated by the British Heart Foundation (BHF) Data Science Centre, is one of the NIHR-BHF Cardiovascular Partnership’s National Flagship Projects.\n\nIt aims to understand the relationship between COVID-19 and cardiovascular diseases through analyses of de-identified, pseudonymised, linked, nationally collated health datasets across the four nations of the UK.\n\nThe consortium has over 300 members across more than 50 institutions including data custodians, data scientists and clinicians, all of whom have signed up to an agreed set of principles with an inclusive, open and transparent ethos.\n\nApproved researchers access data within secure trusted research environments (TREs) provided by NHS Digital (England), the National Safe Haven (Scotland), the SAIL Databank (Wales) and the Honest Broker Service (Northern Ireland).\n\nLinkable datasets include those from primary and secondary care, COVID lab tests and vaccinations, deaths, critical care, prescribing/dispensing, cardiovascular and stroke audits, maternity services and mental health.\n\nThe centre has gained approval to broaden the scope of the programme to all COVID-related research (in NHS Digital’s TRE for England only). This is known as COVID-IMPACT and it will help to support research projects from the wider community, including for the National Core Studies.\n\nA dashboard of datasets available in each nation’s TRE can be found here: https://www.hdruk.ac.uk/projects/cvd-covid-uk-project/', 'associatedMedia': ['https://www.hdruk.ac.uk/projects/cvd-covid-uk-project/'], 'isPartOf': 'CVD-COVID-UK / COVID-IMPACT'}",4f38a842-d30b-41db-9a6e-cd271f8a3392,https://web.www.healthdatagateway.org/dataset/4f38a842-d30b-41db-9a6e-cd271f8a3392,"{'access': {'dataController': 'NHS Digital, Public Health Scotland/National Records Scotland, SAIL Databank', 'accessService': 'Data is accessed within the respective TREs under the arrangements in place with the BHF Data Science Centre for CVD-COVID-UK / COVID-IMPACT', 'dataProcessor': 'NHS Digital, Public Health Scotland, SAIL Databank', 'accessRights': ['https://www.hdruk.ac.uk/projects/cvd-covid-uk-project/'], 'jurisdiction': ['GB-ENG', 'GB-SCT', 'GB-WLS'], 'accessRequestCost': [''], 'deliveryLeadTime': 'LESS 1 WEEK'}, 'formatAndStandards': {'conformsTo': ['LOCAL', 'NHS SCOTLAND DATA DICTIONARY', 'OTHER', 'NHS DATA DICTIONARY'], 'language': ['en'], 'format': ['SQL database table'], 'vocabularyEncodingScheme': ['OPCS4', 'READ', 'SNOMED CT', 'DM+D', 'ICD10', 'OTHER', 'NHS NATIONAL CODES', 'NHS WALES NATIONAL CODES', 'LOCAL', 'ICD9', 'NHS SCOTLAND NATIONAL CODES', 'ODS']}, 'usage': {'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS'], 'isReferencedBy': ['Wood A, Denholm R, Hollings S, Cooper J, Ip S, Walker V et al. Linked electronic health records for research on a nationwide cohort of more than 54 million people in England: data resource. BMJ 2021; 373: n826 DOI: https://doi.org/10.1136/bmj.n826', 'Whiteley WN, Ip S, Cooper JA, Bolton T, Keene S, Walker V, et al. (2022) Association of COVID-19 vaccines ChAdOx1 and BNT162b2 with major venous, arterial, or thrombocytopenic events: A population-based cohort study of 46 million adults in England. PLoS Med 19(2): e1003926. DOI: https://doi.org/10.1371/journal.pmed.1003926', 'Handy A, Banerjee A, Wood AM on behalf of the CVD-COVID-UK Consortium, et al. Evaluation of antithrombotic use and COVID-19 outcomes in a nationwide atrial fibrillation cohort. Heart 2022;108:923-931. DOI: http://dx.doi.org/10.1136/heartjnl-2021-320325'], 'dataUseRequirements': ['COLLABORATION REQUIRED', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'PUBLICATION REQUIRED', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'resourceCreator': ['NHS Digital, SAIL Databank, Scottish National Safe Haven'], 'investigations': ['https://www.hdruk.ac.uk/projects/cvd-covid-uk-project/']}}","{'temporal': {'startDate': '1990-01-01', 'timeLag': 'VARIABLE', 'accrualPeriodicity': 'MONTHLY'}, 'origin': {'collectionSituation': ['CLINIC', 'PRIMARY CARE', 'ACCIDENT AND EMERGENCY', 'OUTPATIENTS', 'IN-PATIENTS', 'COMMUNITY', 'PHARMACY'], 'purpose': ['STUDY'], 'source': ['EPR', 'LIMS']}}",2021-08-23T16:22:47Z,"[{'measuredValue': '65000000', 'observedNode': 'PERSONS', 'measuredProperty': 'Count', 'disambiguatingDescription': ""Multiple datasets in each nation's TRE with a population size of up to 57M in England (NHSD), 5.5M in Scotland (Safe Haven) and 3.2M in Wales (SAIL).  Some datasets measure events and will have a significantly larger number of records."", 'observationDate': '01/01/1990'}]",5.0.0,"{'tools': ['https://github.com/BHFDSC'], 'qualifiedRelation': ['']}",2022-05-30T14:02:07Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Audit of Dementia Round 4 - carer experience survey', 'contactPoint': 'DataSharing@hqip.org.uk', 'abstract': 'Carer Questionnaire which produces two scores, the carer rating of the overall quality of care, and the carer rating of the quality of information and communication.  Data collected via questionnaires online and paper,  July- September 2018', 'publisher': {'name': 'HQIP', 'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d23'}, 'keywords': ['Audit', 'Dementia', 'NAD', 'Carer experience', 'Hospital']}",3b5907da-256d-49a3-b24b-00893afe8bdd,"{'typicalAgeRange': '18-105', 'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'dementia care in general hospitals', 'followup': 'UNKNOWN'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '11571357-b9fc-45ed-ab40-3bb3d7443245', '4.0.0': '4f3fff58-7c32-4879-8ac2-f3c7641fbb85', '3.0.0': 'c1b8c893-bda6-42f8-8f0e-05a3cba5d5a9', '0.0.1': 'd0ec4265-db50-4f3e-8b85-2270c5becfb8', '1.0.0': 'df22d298-ae47-4b46-a727-b868ea01d619', 'latest': '4f3fff58-7c32-4879-8ac2-f3c7641fbb85'}","{'description': 'The Carer Questionnaire was developed for the third round of the audit in conjunction with the Patient Experience Research Centre at Imperial College London. It was designed to assess carers’ perceptions of care received by the person they care for, in addition to their satisfaction with their own involvement during the patient’s admission. Repeated in fourth round of audit to allow for comparison between the rounds.\nThe questionnaire produces two scores, the carer rating of the overall quality of care, and the carer rating of the quality of information and communication.  Data collected via questionnaires online and paper,  July- September 2018\n\nhttps://www.rcpsych.ac.uk/docs/default-source/improving-care/ccqi/national-clinical-audits/national-audit-of-dementia/r4-resources/tools-guidance/cq-info-sheet-and-tool-combined.pdf?sfvrsn=d82136d0_6', 'associatedMedia': ['https://www.hqip.org.uk/a-z-of-nca/dementia-care-in-general-hospitals/'], 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",4f3fff58-7c32-4879-8ac2-f3c7641fbb85,https://web.www.healthdatagateway.org/dataset/4f3fff58-7c32-4879-8ac2-f3c7641fbb85,"{'access': {'dataProcessor': 'Royal College of Psychiatrists', 'accessRights': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'accessRequestCost': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England', 'deliveryLeadTime': 'VARIABLE', 'jurisdiction': ['GB-EAW']}, 'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'format': ['text']}, 'usage': {'resourceCreator': ['Data has been provided by the Healthcare Quality Improvement Partnership from the National Audit of Dementia'], 'dataUseLimitation': ['NO RESTRICTION'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS']}}","{'origin': {'purpose': ['AUDIT'], 'collectionSituation': ['IN-PATIENTS'], 'source': ['ELECTRONIC SURVEY', 'PAPER BASED']}, 'temporal': {'accrualPeriodicity': 'OTHER', 'endDate': '2018-10-01', 'timeLag': 'VARIABLE', 'startDate': '2018-06-01'}}",2020-01-13T10:40:44Z,"[{'observedNode': 'PERSONS', 'measuredValue': 4736, 'disambiguatingDescription': 'number of carers and key workers surveyed', 'observationDate': '01/04/2021', 'measuredProperty': 'Count'}]",4.0.0,{'derivation': ['Not Available']},2021-11-12T16:08:12Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Maternal, Newborn and Infant Clinical Outcome Review Programme - perinatal surveillance dataset', 'publisher': {'name': 'HQIP', 'contactPoint': 'DataSharing@hqip.org.uk', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'DataSharing@hqip.org.uk', 'keywords': ['Maternal', 'Review', 'Surveillance', 'Programme', 'Newborn', 'Perinatal', 'Clinical', 'MNI-CORP', 'Outcome', 'Infant'], 'abstract': 'Clinical continuous case record level dataset of all late fetal losses, stillbirths and neonatal deaths in the UK and Crown Dependencies.'}",11deee42-5876-4ebe-acca-e996702e1343,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '672716e5-e103-449a-8aec-12a929a48b48', '3.0.0': '501b0226-1cbf-4717-8dee-adf189dd0088', '1.0.0': '84e8708a-ec90-43ab-a8b6-bf57af0f288b', '2.0.0': 'f82b8ca5-5a52-4502-bf78-cfbb718cbe2f', 'latest': '501b0226-1cbf-4717-8dee-adf189dd0088'}","{'description': ""Clinical continuous case record level dataset of all late fetal losses, stillbirths and neonatal deaths in the UK and Crown Dependencies. Contains information about the mother's health, lifestyle, pregnancy history, antenatal care, labour and delivery, as well as the baby's outcomes, management and cause of death."", 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",501b0226-1cbf-4717-8dee-adf189dd0088,https://web.www.healthdatagateway.org/dataset/501b0226-1cbf-4717-8dee-adf189dd0088,"{'access': {'jurisdiction': 'GB-GBN', 'deliveryLeadTime': 'OTHER', 'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'}, 'formatAndStandards': {'language': ['en']}}",,2020-01-13T14:54:26Z,,3.0.0,,2021-04-14T08:11:54Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Cardiac Audit Programme - Myocardial Ischaemia National Audit Project (MINAP)', 'publisher': {'contactPoint': 'DataSharing@hqip.org.uk', 'memberOf': 'ALLIANCE', 'name': 'HQIP'}, 'contactPoint': 'DataSharing@hqip.org.uk', 'keywords': ['Cardiac', 'Ischaemia', 'NCAP', 'Audit', 'Myocardial'], 'abstract': 'The dataset contains continuously ascertained record-level information on the care provided to patients who are admitted to hospital with acute coronary syndromes (heart attack).'}",3558f8a1-6d52-4b59-b513-51c068095bc2,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'4.0.0': '04b1648d-eeb7-4072-8dd2-806c3ae4e20d', '5.0.0': '50609a73-30a0-46ca-847d-4a9c1bfec5fc', '3.0.0': 'e2e5cfd1-c5f8-4cf4-9788-99fe1a6cb184', '2.0.0': 'ee63af12-bf25-4627-89b8-df2144152044', '0.0.1': 'ab74df9c-06bd-4d84-8c42-fa6c572d36b6', '1.0.0': '73d7a4cd-1510-42ec-8cda-2b042381e8a1', 'latest': '50609a73-30a0-46ca-847d-4a9c1bfec5fc'}","{'description': 'The dataset contains continuously ascertained record-level information on the care provided to patients who are admitted to hospital with acute coronary syndromes (heart attack). Data covers the patient pathway from a call to the emergency services or their self-presentation at an Emergency Department, through diagnosis and treatment at hospital, to the prescription of preventive medications on discharge.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",50609a73-30a0-46ca-847d-4a9c1bfec5fc,https://web.www.healthdatagateway.org/dataset/50609a73-30a0-46ca-847d-4a9c1bfec5fc,"{'access': {'jurisdiction': 'GB-GBN', 'deliveryLeadTime': 'OTHER', 'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data\nhttps://www.nicor.org.uk/for-researchers/data-sharing-application-process/'}, 'formatAndStandards': {'language': ['en']}}",,2020-01-13T14:54:29Z,,5.0.0,,2021-04-14T08:17:14Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Audit of Dementia Round 4 - staff questionnaire', 'abstract': 'Questionnaire to  assess how well staff feel they are supported to provide good quality care/support to inpatients with dementia/possible dementia.   Data collected June - October 2018.', 'keywords': ['Audit', 'Dementia', 'NAD', 'Staff Questionnaire', 'Hospital'], 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d23', 'name': 'HQIP'}, 'contactPoint': 'DataSharing@hqip.org.uk'}",ef6e68d6-dcba-410c-943c-26ca21376a3a,"{'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html'], 'followup': 'UNKNOWN', 'pathway': 'dementia care in general hospitals', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'a67c6925-dadc-4693-83ef-dba15b1c1a97', '4.0.0': '51221591-a4d4-4b9f-a220-b72d860d99fd', '1.0.0': 'e5bf8fc6-5392-44e8-9592-7f73ecd8aecc', '2.0.0': '82665c1e-df7f-4136-a05f-0826533149e5', '3.0.0': '97edcc7e-ac9c-4ff6-8634-f19ccc18a44d', 'latest': '51221591-a4d4-4b9f-a220-b72d860d99fd'}","{'description': 'This was developed for Round 3 of the audit and repeated in Round 4 to  assess how well staff feel they are supported to provide good quality care/support to inpatients with dementia/possible dementia. All clinical staff and ward-based administrative staff working at the hospital in an inpatient-facing role involving contact with people with dementia, were eligible to complete the questionnaire.  Data collected June - October 2018.  Score produced on staff rating of the quality of communication between staff, patients, and carers.\n\nhttps://www.rcpsych.ac.uk/docs/default-source/improving-care/ccqi/national-clinical-audits/national-audit-of-dementia/r4-resources/tools-guidance/nad-r4-staff-questionnaire---paper-version-v1.pdf?sfvrsn=8b323d9e_6', 'associatedMedia': ['https://www.hqip.org.uk/a-z-of-nca/dementia-care-in-general-hospitals/'], 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",51221591-a4d4-4b9f-a220-b72d860d99fd,https://web.www.healthdatagateway.org/dataset/51221591-a4d4-4b9f-a220-b72d860d99fd,"{'usage': {'resourceCreator': ['Data has been provided by the Healthcare Quality Improvement Partnership from the National Audit of Dementia'], 'dataUseLimitation': ['NO RESTRICTION'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS']}, 'access': {'deliveryLeadTime': 'VARIABLE', 'accessRequestCost': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England', 'dataProcessor': 'Royal College of Psychiatrists', 'jurisdiction': ['GB-EAW'], 'accessRights': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data']}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'format': ['N/A'], 'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en']}}","{'temporal': {'startDate': '2018-06-01', 'endDate': '2018-10-01', 'accrualPeriodicity': 'OTHER', 'timeLag': 'VARIABLE'}, 'origin': {'collectionSituation': ['IN-PATIENTS'], 'purpose': ['AUDIT'], 'source': ['ELECTRONIC SURVEY', 'PAPER BASED']}}",2020-01-13T10:40:44Z,"[{'observedNode': 'PERSONS', 'measuredValue': 14154, 'disambiguatingDescription': 'number of clinical staff surveyed', 'observationDate': '01/04/2021', 'measuredProperty': 'Count'}]",4.0.0,{'derivation': ['Not Available']},2021-11-12T16:08:29Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Looked After Children Wales (LACW)', 'keywords': ['Children', 'Welsh', 'SAIL', 'core-res', 'LACW'], 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '5f3f98068af2ef61552e1d75', 'name': 'SAIL'}, 'abstract': 'Information about looked after children. Includes demographic and episode level information.', 'contactPoint': 'SAILDatabank@swansea.ac.uk'}",cfdafacb-48f0-4ad8-9f20-193a5eec2da4,"{'followup': 'OTHER', 'typicalAgeRange': '0-19', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Administrative. Linkable to health datasets across patient pathway.', 'spatial': ['https://www.geonames.org/2634895/wales.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'4.0.0': 'f2e14ee8-86ec-462e-81f0-7411ccf019eb', '6.0.0': '51ad73b3-dd3e-44ad-b941-0d5d12bcb0cd', '5.0.0': '28486729-6a76-4a03-8c28-3ea971071583', 'latest': '51ad73b3-dd3e-44ad-b941-0d5d12bcb0cd'}","{'description': 'Information about looked after children. Includes demographic and episode level information.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://saildatabank.com/about-us/overview/']}",51ad73b3-dd3e-44ad-b941-0d5d12bcb0cd,https://web.www.healthdatagateway.org/dataset/51ad73b3-dd3e-44ad-b941-0d5d12bcb0cd,"{'usage': {'resourceCreator': ['Welsh Goverment'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'isReferencedBy': ['Lyons, R.A., Jones, K.H., John, G. et al. The SAIL databank: linking multiple health and social care datasets. BMC Med Inform Decis Mak 9, 3 (2009). https://doi.org/10.1186/1472-6947-9-3'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}, 'access': {'deliveryLeadTime': '2-6 MONTHS', 'dataProcessor': 'SAIL Databank', 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'jurisdiction': ['GB-WLS'], 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'accessRights': ['https://saildatabank.com/application-process/'], 'dataController': 'SAIL Databank'}, 'formatAndStandards': {'language': ['en'], 'format': ['SQL database table'], 'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL']}}","{'temporal': {'startDate': '1999-06-21', 'distributionReleaseDate': '2021-09-23', 'timeLag': '2-6 MONTHS', 'endDate': '2021-05-31', 'accrualPeriodicity': 'ANNUAL'}, 'origin': {'collectionSituation': ['COMMUNITY'], 'purpose': ['ADMINISTRATIVE'], 'source': ['EPR']}}",2021-09-13T14:53:46Z,"[{'observedNode': 'EVENTS', 'measuredValue': '3000000', 'observationDate': '01/09/2021', 'measuredProperty': 'Count', 'disambiguatingDescription': 'Approx 70-80% coverage of Welsh population through GP registrations.'}]",6.0.0,"{'qualifiedRelation': ['Yes. 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"{'title': 'The Airwave Health Monitoring Study', 'doiName': '10.1016/j.envres.2014.07.025', 'keywords': ['Airwave', 'longitudinal', 'cohort', 'police', 'Imperial', 'Population'], 'publisher': {'identifier': '60d092bc99419879d0dfa485', 'memberOf': 'OTHER', 'name': 'AIRWAVE'}, 'contactPoint': 'airwave@imperial.ac.uk', 'abstract': 'The Airwave Health Monitoring Study (AHMS) is a long-term occupational observational cohort study and tissue bank following up the health of c. 53,000 police officers and staff across Great Britain.'}",98bfe17f-be12-47b1-943a-2d3a621b7618,"{'typicalAgeRange': '18-74', 'pathway': 'The Airwave Health Monitoring Study is a cohort study including c. 53,000 police officers and staff from Great Britain. Participants were recruited at baseline study between 2004-2015 and followed up through health screening visits, questionnaire and medical records.', 'followup': '1 - 10 YEARS', 'physicalSampleAvailability': ['PLASMA', 'SERUM', 'DNA', 'AVAILABILITY TO BE CONFIRMED'], 'spatial': ['United Kingdom']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'cf867e7f-51b9-4627-828d-dd4fd420b37e', '2.0.0': '51f9de9e-5fcd-4629-bdfc-7719359a7ec6', 'latest': '51f9de9e-5fcd-4629-bdfc-7719359a7ec6'}","{'description': 'Please refer to the study website for more information about the study documents available (https://police-health.org.uk/study-data-documentation)', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://police-health.org.uk/study-data-documentation']}",51f9de9e-5fcd-4629-bdfc-7719359a7ec6,https://web.www.healthdatagateway.org/dataset/51f9de9e-5fcd-4629-bdfc-7719359a7ec6,"{'formatAndStandards': {'format': ['text', 'tab-separted-values', 'csv'], 'conformsTo': ['LOCAL'], 'language': ['en'], 'vocabularyEncodingScheme': ['ICD9', 'ICD10']}, 'access': {'dataController': 'Imperial College London is the sole data controller for data collected from the Airwave Health Monitoring Study.', 'accessRights': ['https://police-health.org.uk/applying-access-resource'], 'accessService': ""Using Dementia Platform UK's data portal, any bona fide researcher can apply to access data from the Airwave Health Monitoring Study by completing an online application form including: information about the applicant(s), project details, technical specification, data categories requested, and scientific context."", 'accessRequestCost': ['https://police-health.org.uk/applying-access-resource'], 'jurisdiction': ['GB-ENG', 'GB-WLS', 'GB-SCT'], 'deliveryLeadTime': '2-6 MONTHS'}, 'usage': {'isReferencedBy': ['Elliott, P. et al. The Airwave Health Monitoring Study of police officers and staff in Great Britain: rationale, design and methods. Environ Res 134, 280-285, doi:10.1016/j.envres.2014.07.025 (2014).'], 'investigations': ['https://police-health.org.uk/approved-research'], 'resourceCreator': ['The Airwave Health Monitoring Study'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['USER SPECIFIC RESTRICTION']}}","{'temporal': {'distributionReleaseDate': '2018-08-01', 'timeLag': 'NOT APPLICABLE', 'endDate': '2015-03-31', 'accrualPeriodicity': 'STATIC', 'startDate': '2004-01-01'}, 'origin': {'collectionSituation': ['CLINIC'], 'source': ['ELECTRONIC SURVEY', 'PAPER BASED', 'MACHINE GENERATED', 'OTHER'], 'purpose': ['STUDY']}}",2021-11-01T11:58:06Z,"[{'observedNode': 'PERSONS', 'measuredValue': '53000', 'observationDate': '31/03/2015', 'measuredProperty': 'Questionnaire, clinical measurements, cognitive tests'}]",2.0.0,"{'qualifiedRelation': [''], 'tools': [''], 'derivation': ['']}",2022-06-07T10:57:15Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 1, 'structuralMetadata.columnName': 1, 'structuralMetadata.columnDescription': 1, 'structuralMetadata.dataType': 1, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '9c63a201-4fa4-4675-9fe7-9efa80a9a28f', 'description': 'https://police-health.org.uk/study-data-documentation', 'name': 'Please refer to the study website', 'dataElementsCount': 1, 'dataElements': 'b24b8be8-392b-48ad-ac18-dcd726732b41'}]}"
"{'title': 'ARIA Dataset', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'BARTS HEALTH', 'contactPoint': 'surjeet.janjuha@nhs.net'}, 'abstract': 'Clinical system used on St. Barts site as a chemotherapy prescribing system, sometimes also referred to as Varian.', 'contactPoint': 'surjeet.janjuha@nhs.net'}",621dd611-adcf-4434-b538-eecdbe5f72cf,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'cb3c7ac4-2a46-44c9-bf97-736e209e0139', '2.0.0': '5271131b-ba5b-452d-b230-077094a031c2', '1.0.0': '0cfe60cd-038d-4c03-9a95-894c52135922', 'latest': '5271131b-ba5b-452d-b230-077094a031c2'}","{'description': None, 'isPartOf': 'N/A'}",5271131b-ba5b-452d-b230-077094a031c2,https://web.www.healthdatagateway.org/dataset/5271131b-ba5b-452d-b230-077094a031c2,"{'access': {'accessRights': ['Available locally within Trust corporate Data Warehouse System and authorised access by Trust staff only.'], 'deliveryLeadTime': 'OTHER'}}",,2020-01-13T16:54:42Z,,2.0.0,,2021-02-21T15:18:35Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Respiratory rate counters in paediatric pneumonia diagnosis', 'publisher': {'identifier': '607db9c2e1f9d3704d570ce6', 'memberOf': 'HUB', 'name': 'BREATHE'}, 'contactPoint': 'RESPIRE@ed.ac.uk', 'keywords': ['pneumonary', 'video expert', 'respiratory rate counter', 'automated counter', 'children'], 'abstract': 'The study aims to develop a process of videography of child’s chest movements and interpretation of respiratory rate from video recording by a video expert panel to evaluate automated respiratory rate counters to diagnose paediatric pneumonia.'}",beeee4fb-55ab-41b0-9287-33f008e9d6bf,"{'spatial': ['https://www.geonames.org/1210997/bangladesh.html'], 'typicalAgeRange': '0-5', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '52db3903-e6c1-4f03-b6ee-909967fe3d16'},"{'description': 'Fast breathing is the most common sign of childhood pneumonia. It is identified by observing the child’s chest and counting respiratory rate (RR). However, manual count of RR is challenging for the health workers often resulting in misdiagnosis of pneumonia. The availability of novel RR counters (e.g., ChARM, Masimo Rad-G, uPM60) can support health workers by detecting fast breathing automatically. However, the absence of an appropriate reference standard to evaluate the performance of these devices is a challenge. The commonly used reference standard is manual RR counts by a human expert which might be biased. If good quality videos could be captured and RR interpretation from these videos could be systematically conducted, it could be an ideal and non-biased reference standard. This study is designed to develop a video expert panel (VEP) as a reference standard to evaluate automated RR counters to identify pneumonia in children. The study will assess the performance of ChARM device in terms of accuracy of counting RR, duration to take the count and any potential influence of the device on RR counts. The study will record the child’s chest movements, and the recorded videos will be interpreted by the VEP. A mechanism to interpret RR from the recorded videos and maintain ongoing quality control will be established. This study will be carried out in Bangladesh in two phases. Eligible children will be 0-2 months old presenting with any illness and 2-59 months old presenting with suspected pneumonia (cough and/or breathing difficulty). In Phase-I, we will develop a process of videography of the child’s chest movements and interpretation of RR by a VEP. We will establish the process of capturing good quality videos, making a set of reference videos and will train and standardise the VEP members using those reference videos. We will record videos from a hospital in Dhaka. We will take videos of child’s chest movements both with and without using of ChARM. In Phase-II, we will conduct a cross-sectional study in rural Sylhet for evaluation of the performance of ChARM device. We will enrol children presenting at first level health facilities and a sub-district hospital. This study will provide evidence to establish the videography of child’s chest movements and its interpretation by a VEP as an appropriate and non-biased reference standard to evaluate the performance of novel RR counters. For further information please visit https://www.ed.ac.uk/usher/respire/phd-studentships/ahad-mahmud-khan.', 'isPartOf': 'BREATHE'}",52db3903-e6c1-4f03-b6ee-909967fe3d16,https://web.www.healthdatagateway.org/dataset/52db3903-e6c1-4f03-b6ee-909967fe3d16,"{'access': {'accessRights': ['https://www.ed.ac.uk/usher/respire/about/projects '], 'dataProcessor': 'Projahnmo Research Foundation', 'dataController': 'University of Edinburgh', 'accessService': 'Datashare', 'deliveryLeadTime': 'OTHER', 'jurisdiction': ['BD', 'GB-GBN'], 'accessRequestCost': ['None']}, 'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'format': ['csv', 'mp4']}, 'usage': {'resourceCreator': ['RESPIRE Collaboration']}}","{'origin': {'source': ['PAPER BASED'], 'collectionSituation': ['PRIMARY CARE', 'OUTPATIENTS', 'IN-PATIENTS'], 'purpose': ['STUDY']}, 'temporal': {'accrualPeriodicity': 'STATIC', 'timeLag': 'NOT APPLICABLE', 'startDate': '2021-12-01'}}",2022-02-15T11:23:53Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '1', 'observationDate': '01/12/2021', 'measuredProperty': 'Count'}]",1.0.0,,2022-02-15T11:23:53Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Scarred Liver', 'abstract': 'Prospective, longitudinal cohort of patients with community liver disease. Patients selected by risk factors and followed for long term clinical outcomes.', 'contactPoint': 'neil.guha@nottingham.ac.uk', 'publisher': {'name': 'UNIVERSITY OF NOTTINGHAM', 'identifier': '607db9c6e1f9d3704d570d93', 'memberOf': 'ALLIANCE'}, 'keywords': ['biomarkers', 'Community', 'Chronic liver disease', 'fibrosis']}",17f80626-5adf-4777-9ccf-7f0cd107daa6,"{'followup': '> 10 YEARS', 'typicalAgeRange': '18-75', 'spatial': ['United Kingdom,England,East Midlands'], 'pathway': 'Primary and secondary care'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '53099fb6-18ff-4edc-b76d-225dade94db3'},"{'description': 'Prospective, longitudinal cohort of patients with community liver disease.', 'associatedMedia': ['https://www.scarredliverproject.org.uk/']}",53099fb6-18ff-4edc-b76d-225dade94db3,https://web.www.healthdatagateway.org/dataset/53099fb6-18ff-4edc-b76d-225dade94db3,"{'formatAndStandards': {'language': ['en'], 'conformsTo': ['HL7 FHIR'], 'vocabularyEncodingScheme': ['NHS NATIONAL CODES'], 'format': ['database']}, 'access': {'deliveryLeadTime': 'VARIABLE', 'dataProcessor': 'N/A', 'jurisdiction': ['GB-ENG'], 'dataController': 'Professor N Guha', 'accessRights': ['In progress']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['National Institute for Health Research and the National Health Service']}}","{'origin': {'source': ['OTHER'], 'purpose': ['TRIAL'], 'collectionSituation': ['OUTPATIENTS']}, 'temporal': {'endDate': '2032-12-31', 'startDate': '2012-01-02', 'accrualPeriodicity': 'IRREGULAR', 'timeLag': 'VARIABLE'}}",2022-03-11T13:07:20Z,"[{'observedNode': 'PERSONS', 'measuredValue': '4750', 'observationDate': '02/01/2012', 'measuredProperty': 'Count'}]",1.0.0,,2022-03-11T13:07:20Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'North West London Adult Social Care Data (NWL ASC)', 'publisher': {'memberOf': 'HUB', 'contactPoint': 'researchers@registerfordiscover.org.uk', 'name': 'DISCOVER NOW'}, 'keywords': ['ACS', 'Adult Social Care', 'Discover-NOW', 'Adult Social Care Outcomes Framework', 'ASCOF', 'Integrated Care', 'Real World data', 'Linked longitudinal'], 'abstract': 'The NWL ASC linked table holds care package data relating to patients registered with a NWL GP. A locally agreed data set between NWL boroughs and commissioners has defined data items such as start and end dates, allocated teams and service descriptions.', 'doiName': 'In Progress', 'contactPoint': 'researchers@registerfordiscover.org.uk'}",de9cf0f5-b26a-4363-9df8-3628a4aa6b6e,"{'followup': '> 10 YEARS', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Care package data relating to patients registered with a NWL GP. A locally agreed data set between NWL boroughs and commissioners has defined data items such as start and end dates, allocated teams and service descriptions.', 'spatial': 'NHS Brent CCG; NHS Central London CCG; NHS Ealing CCG; NHS Hammersmith &Fulham CCG; NHS Harrow CCG; NHS Hillingdon CCG; NHS Hounslow CCG; NHS West London CCG'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'4.0.0': '4b1202a7-aaf8-486d-86b0-d75a421a5e60', '5.0.0': '535a0983-6618-4211-a939-ae2edfe26f9a', '3.0.0': '6bcb3286-01a0-4332-b84c-35037759d6b1', '2.0.0': '805e2121-c04b-4b95-8e8d-c9a57439ba7b', '1.0.0': '398d947c-96af-4d3f-9d76-2806ebf60044', '0.0.1': '30036489-4bf2-4274-bba8-ff66638760e4', 'latest': '535a0983-6618-4211-a939-ae2edfe26f9a'}","{'description': ""The Adult Social Care Outcomes Framework (ASCOF) measures how well care and support services achieve the outcomes that matter most to people. The measures are grouped into four domains which are typically reviewed in terms of movement over time. These domains are:\n\nenhancing quality of life for people with care and support needs\ndelaying and reducing the need for care and support\nensuring that people have a positive experience of care and support\nsafeguarding adults whose circumstances make them vulnerable and protecting from avoidable harm\nThe ASCOF aims to give an indication of the strengths and weaknesses of social care in delivering better outcomes for people who use services. This report will be of interest to:\n\ncentral government - for policy development and monitoring, and for parliamentary questions and Prime Minister's Questions\nCouncils with Adult Social Services Responsibilities (CASSRs) - for measuring local performance and for benchmarking against other CASSRs\ncharities\nacademics\nthe general public."", 'associatedMedia': ['https://imperialcollegehealthpartners.com/discover-now/north-west-london-covid-19-data-repository/', 'https://www.nwlondonccgs.nhs.uk/professionals/whole-systems-integrated-care-wsic-dashboards-and-information-sharing/information-de-identified-users'], 'isPartOf': 'Social care'}",535a0983-6618-4211-a939-ae2edfe26f9a,https://web.www.healthdatagateway.org/dataset/535a0983-6618-4211-a939-ae2edfe26f9a,"{'usage': {'dataUseRequirements': ['COLLABORATION REQUIRED', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': 'NO RESTRICTION', 'isReferencedBy': ['Not Available'], 'resourceCreator': 'NHS Brent CCG\nDiscover-NOW', 'investigations': ['https://www.registerfordiscover.org.uk/researchers/discover-for-researchers-and-industry']}, 'access': {'jurisdiction': 'GB', 'accessService': ""Researchers will have access to a VDI environment with a specific username and password. The researchers will get access to the datasets that is present in the hub's catalogue and would be able to carry out their research within the safe haven. 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"{'title': 'National Records of Scotland (NRS) - Deaths Data', 'publisher': {'identifier': '5f8992a97150a1b050be0712', 'name': 'PUBLIC HEALTH SCOTLAND', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'phs.edris@phs.scot', 'abstract': 'All registrations to the National Records of Scotland of deaths', 'keywords': ['Scotland ', 'Deaths', 'NCS', 'CO-CONNECT', 'National Core Study', 'COVID-19']}",e600dae2-a83c-4b7a-8d23-af4ac31ca374,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'OTHER', 'typicalAgeRange': '0-150', 'pathway': 'NOT APPLICABLE', 'spatial': ['https://www.geonames.org/2638360/scotland.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'c702ffb3-b053-419f-af71-32387f4c9081', '6.0.0': '53846ac7-61b7-4403-8556-c319d04b546d', '1.0.0': 'df63bdd2-712d-478e-8aae-36d01158a440', '3.0.0': '6ab4e273-0799-4f67-929d-d1b07e68b1f4', '4.0.0': 'e61fce14-617d-4f7b-80aa-468d94c6d897', '5.0.0': 'd441348a-6121-4e77-b4fb-d14966dc7a3e', '2.0.0': 'ff0500de-acdf-4db6-b12f-263324696d47', 'latest': '53846ac7-61b7-4403-8556-c319d04b546d'}","{'description': 'All registrations to the National Records of Scotland of deaths', 'associatedMedia': ['https://www.nrscotland.gov.uk/statistics-and-data/statistics/statistics-by-theme/vital-events/deaths'], 'isPartOf': 'Vital Events'}",53846ac7-61b7-4403-8556-c319d04b546d,https://web.www.healthdatagateway.org/dataset/53846ac7-61b7-4403-8556-c319d04b546d,"{'access': {'deliveryLeadTime': 'VARIABLE', 'dataProcessor': 'National Services Scotland', 'accessService': 'Scottish National Data Safe Haven - 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"{'title': 'Ventilatory strategies and outcomes for patients with COVID: a dataset in OMOP', 'publisher': {'name': 'PIONEER', 'contactPoint': 'Pioneer@UHB.NHS.UK', 'memberOf': 'HUB'}, 'doiName': 'https://web.www.healthdatagateway.org/dataset/cacba424-6c2c-4b57-8f5b-64e92a78370a', 'keywords': ['NHS', 'acute', 'exacerbation', 'COVID', 'pneumonia', 'pneumonitis', 'NEWS2', 'deterioration', 'alert', 'SEWS', 'oxygen', 'non-invasive ventilation', ' high flow oxygen', 'CPAP', 'airway pressure', 'inspiratory pressure', 'tidal volume', 'patient', 'acute hospitals', 'inpatient', 'ethnicity', 'multi-morbidity', 'blood', 'biomarkers', 'physiology', 'demographics', 'treatments', 'therapies', 'interventions', 'outcomes', 'death', 'longitudinal', 'vital signs'], 'contactPoint': 'Pioneer@UHB.NHS.UK', 'abstract': 'Hospital patients admitted during the COVID pandemic requiring/at risk of requiring ventilatory support.  Granular condition,  multi-morbidity, interventions and treatments.  Serial physiology, blood biomarkers, ITU spells, outcome. Deeply phenotyped.'}",cacba424-6c2c-4b57-8f5b-64e92a78370a,"{'typicalAgeRange': '18-108', 'pathway': 'Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data. Data includes those with and without COVID admitted during the first wave of the COVID pandemic.', 'followup': '0 - 6 MONTHS', 'spatial': 'West Midlands', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '7c738c20-953f-4003-b972-4abc6e163efb', '1.0.0': '53b7c446-667b-409e-920e-67cb516de3ae', 'latest': '53b7c446-667b-409e-920e-67cb516de3ae'}","{'description': 'Background.\nCoronavirus disease 2019 (COVID-19) was identified in January 2020.  Currently, there have been more than 6 million cases & more than 1.5 million deaths worldwide.  Some individuals experience severe manifestations of infection, including viral pneumonitis, adult respiratory distress syndrome (ARDS) & death.  Many patients required ventilatory support including high flow oxygen, continuous positive airway pressure and intubated with or without tracheotomy.  Different centres took different approaches to care delivery depending on ITU bed availability. This secondary care COVID OMOP dataset contains granular ventilatory, demographic, morbidity, serial acuity and outcome data in COVID-19.\n\nPIONEER geography\nThe West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix. There is a higher than average percentage of minority ethnic groups. WM has a large number of elderly residents but is the youngest population in the UK.  Each day >100,000 people are treated in hospital, see their GP or are cared for by the NHS. The West Midlands was one of the hardest hit regions for COVID admissions in both wave 1 & 2.\n\nEHR. University Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & 100 ITU beds.  ITU capacity increased to 250 beds during the COVID pandemic. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.  UHB has cared for >5000 COVID admissions to date.  This data is in the OMOP format.\n\nScope: All COVID swab confirmed hospitalised patients to UHB from January – September 2020.  The dataset includes highly granular patient demographics & co-morbidities taken from ICD-10 & SNOMED-CT codes.  Serial, structured data pertaining to care process (timings, staff grades, specialty review, wards), severity, ventilatory requirements, acuity, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations), all blood results, microbiology, all prescribed & administered treatments (fluids, antibiotics, inotropes, vasopressors, organ support), all outcomes.  \n\nAvailable supplementary data:\nMore extensive data including wave 2 patients in non-OMOP form. Ambulance, 111, 999 data, synthetic data.\n\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.', 'associatedMedia': ['https://www.pioneerdatahub.co.uk/wp-content/uploads/Ventilation-OMOP-infographic-V1-ES.jpg']}",53b7c446-667b-409e-920e-67cb516de3ae,https://web.www.healthdatagateway.org/dataset/53b7c446-667b-409e-920e-67cb516de3ae,"{'formatAndStandards': {'vocabularyEncodingScheme': ['SNOMED CT', 'ICD10'], 'conformsTo': 'OMOP', 'language': 'en', 'format': ['SQL']}, 'access': {'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'accessService': 'Trusted Research Environment on Microsoft Azure cloud server (UK South).  Creating the environment will be subject to a charge following approval of data request. The PIONEER team will work with you to ensure the relevant compute power and tooling is available to support your analytical needs.', 'jurisdiction': 'GB', 'deliveryLeadTime': '1-2 WEEKS', 'dataProcessor': 'NOT APPLICABLE', 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'accessRequestCost': 'https://www.pioneerdatahub.co.uk/data/data-services-costs/'}, 'usage': {'investigations': ['https://www.decovid.org/'], 'resourceCreator': 'This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)', 'dataUseLimitation': 'RESEARCH USE ONLY'}}","{'origin': {'source': 'EPR', 'purpose': 'OTHER', 'collectionSituation': ['OUTPATIENTS', 'IN-PATIENTS', 'COMMUNITY']}, 'temporal': {'timeLag': 'LESS 1 WEEK', 'accrualPeriodicity': 'STATIC', 'startDate': '2020-01-01', 'distributionReleaseDate': '2020-12-08', 'endDate': '2020-09-09'}}",2020-12-29T19:01:28Z,"[{'observedNode': 'Events', 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"{'title': 'Epilepsy Society Brain and Tissue Bank', 'publisher': {'contactPoint': 'epilepsybrainbank@ucl.ac.uk', 'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY'}, 'doiName': 'Not Available', 'abstract': 'Collection of samples and data across the following diseases: Epilepsy (disorder)', 'keywords': ['Epilepsy (disorder)', 'Brain', 'Tissue', 'UKCRC Tissue Directory', 'Neurology'], 'contactPoint': 'epilepsybrainbank@ucl.ac.uk'}",f13258c3-f85a-4772-b42e-da8a84c5064a,"{'physicalSampleAvailability': ['PM TISSUE', 'PRIMARY CELLS'], 'typicalAgeRange': '15-44', 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'd0f87e1d-3a9f-4187-98ff-bf64037bb40c', '3.0.0': '54a7dd45-d6c7-4b4d-801d-2becd2b694f1', '1.0.0': '5ba8f193-0a40-4385-a658-220ac4a9db24', '2.0.0': '84616d8c-336a-485b-9148-af6788efb721', 'latest': '54a7dd45-d6c7-4b4d-801d-2becd2b694f1'}","{'description': 'The Epilepsy Society Brain and Tissue Bank is a recently established tissue bank at the Institute of Neurology, which has ethical approval and is supported by the Epilepsy Society. It is located within UCL Institute of Neurology in the Department of Neuropathology and is governed by a committee including members of the Department of Clinical and Experimental Epilepsy, the Epilepsy Society as well as SUDEP Action.\nThe collection comprises consented tissue samples from patients who have undergone epilepsy surgery, mainly at the National Hospital for Neurology and Neurosurgery. In addition the tissue bank archives whole brain samples from patients with epilepsy and particularly epilepsy-related deaths, such as sudden and unexpected death in epilepsy (SUDEP).\nWe have a donor registry for people who have epilepsy, seizures or who are healthy, without seizures, who wish to donate brain tissue following death.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",54a7dd45-d6c7-4b4d-801d-2becd2b694f1,https://web.www.healthdatagateway.org/dataset/54a7dd45-d6c7-4b4d-801d-2becd2b694f1,"{'access': {'dataProcessor': 'Not Applicable', 'jurisdiction': 'GB-ENG', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'accessRequestCost': 'Not specified', 'dataController': 'University College London', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED'}, 'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2014-01-01'}}",2020-01-13T17:05:19Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T15:59:35Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'HES Outpatients data for QResearch', 'contactPoint': 'qresearch@phc.ox.ac.uk', 'publisher': {'identifier': '61ba059ac688870b12a4e05b', 'name': 'QResearch', 'memberOf': 'ALLIANCE'}, 'abstract': 'A collection of individual records of outpatient appointments occurring in England only. It includes information on the type of outpatient consultation, appointment dates, the main specialty and treatment specialty.', 'keywords': ['Hospital', 'Critical Care', 'NCS', 'National Core Study']}",8321071e-88ef-4d7e-8cf8-ab826c00096c,"{'followup': '1 - 10 YEARS', 'spatial': ['United Kingdom,England'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-115', 'pathway': 'Secondary care'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'd9523986-eed1-4f04-b417-643c64365e37', '2.0.0': '555f609d-c48d-431a-98b4-fb4198b5ad79', 'latest': '555f609d-c48d-431a-98b4-fb4198b5ad79'}","{'description': 'Hospital Episode Statistics Outpatient (HES OP) data are a collection of individual records of outpatient appointments occurring in England. The data includes information on the type of outpatient consultation appointment dates, the main specialty and treatment specialty under which the patient was treated, referral source, waiting times, clinical diagnosis and procedures performed. HES OP data can be used to support health resource utilisation studies, clarify clinical health care pathways and enable variations in the uptake of services to be evaluated, for example by gender and age.'}",555f609d-c48d-431a-98b4-fb4198b5ad79,https://web.www.healthdatagateway.org/dataset/555f609d-c48d-431a-98b4-fb4198b5ad79,"{'access': {'deliveryLeadTime': '1-2 MONTHS', 'jurisdiction': ['GB-ENG'], 'accessRequestCost': ['https://www.qresearch.org/information/information-for-researchers/'], 'dataProcessor': 'University of Oxford', 'accessService': 'Remote Desktop to dedicated Windows Server.\n\nStandard Server Spec:\n16GB RAM, 4 Logical Xeon Gold Processors, 200 GB HDD\n\nMax available Server Spec:\n512GB RAM, 72 Logical Xeon Gold Processors, 2TB HDD. Tesla V100 GPU', 'accessRights': ['https://www.qresearch.org/information/information-for-researchers/'], 'dataController': 'University of Oxford'}, 'formatAndStandards': {'vocabularyEncodingScheme': ['ICD10', 'ODS', 'OPCS4'], 'format': ['CSV', 'Stata', 'SQL Server Database'], 'language': ['en'], 'conformsTo': ['NHS DATA DICTIONARY']}, 'usage': {'investigations': ['https://www.qresearch.org/research/approved-research-programs-and-projects/'], 'dataUseRequirements': ['ETHICS APPROVAL REQUIRED', 'NOT FOR PROFIT USE'], 'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'resourceCreator': ['NHS Digital']}}","{'temporal': {'startDate': '1997-04-01', 'timeLag': 'MORE 6 MONTHS', 'accrualPeriodicity': 'QUARTERLY', 'distributionReleaseDate': '2022-02-04', 'endDate': '2021-03-31'}, 'origin': {'collectionSituation': ['OUTPATIENTS'], 'purpose': ['CARE'], 'source': ['EPR']}}",2022-03-21T16:27:58Z,"[{'measuredValue': '35047612', 'observedNode': 'EVENTS', 'disambiguatingDescription': 'Number of patients matched to single HES identifier', 'observationDate': '04/02/2022', 'measuredProperty': 'Count'}]",2.0.0,,2022-06-08T09:51:43Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 31, 'structuralMetadata.columnName': 31, 'structuralMetadata.columnDescription': 31, 'structuralMetadata.dataType': 31, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'e52252d7-f21c-491d-84cc-9cc15c7a1c66', 'description': 'Admitted Patient Care (APC)', 'name': 'vwCore', 'dataElementsCount': 31, 'dataElements': 'd8572191-109d-431e-b5c4-e06420a6f444, b90f971b-bf73-455b-89f7-389ff333f409, c98a9784-4dc7-4496-94f4-849dd04f9a86, 708d4b2d-0a11-46fa-bec0-2bd48738d64e, 9bcd1932-d19b-48b8-b2c8-e53eee83f7d8, 73d95710-b684-4049-b4f1-13e5d3ffca55, 0c5b5e30-7948-4fb8-a73f-02e0447115c3, 09301ddf-24cb-4bd7-8e23-c6075f375b2b, e92b2c49-b9a9-4df1-8321-ed4cb5d2a1d6, 0c1ecda3-0133-4c64-bcbf-dcac3463aae0, 3ec85026-8972-48eb-a006-81ba4419fdd1, 2fcc98a7-1c8e-4548-a16d-643858fa9c69, 4c9ff0e9-585a-4b1a-a2db-615218d6405a, 73b1b20c-b59a-490f-83c6-04f22f57de68, 4463545e-30eb-445b-aecd-fef846f61d7a, 7cdcb2e2-158e-4fb0-bc05-2c7b2fbf3fbe, c2fbc836-4cde-4ac8-a9e9-646f0dadd4ad, 16b0441b-d32b-450a-90d8-6cb0766d74cf, 6dbe2afc-8dcd-4042-b14a-602d153cbd68, 48b6de33-ad77-4506-a402-70dcb66b2e67, 0a89de32-0b3e-455e-99b2-00a4f5745341, 47e748f9-0404-45bc-a1df-bc97541a8c4f, 7b0a5b31-2d8c-47e5-a475-3f78dbc1ce0e, 5259db96-565c-46f2-ab37-1c24aaa885bc, 5838a7aa-73e9-4832-9a7c-988f5979a207, 2f324c7b-8de8-40f8-a821-e3fa6e2a75cd, ede13a54-2309-4074-b575-c0a96a0c6350, ff67d7f2-85d0-4868-9331-7001434b3ce2, 6fa90f69-b1a6-4ed4-8d42-49a40d5038af, 24bdd43d-b10e-4519-8817-5429a7b24e2e, f59747a6-7f48-41f0-befc-4d2816a9e5df'}]}"
"{'title': 'RTDS - Radiotherapy treatment data set for QResearch', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '61ba059ac688870b12a4e05b', 'name': 'QResearch'}, 'keywords': ['NCS', 'National Core Study'], 'abstract': 'QResearch linked National Radiotherapy Dataset (RTDS) data contain records of radiotherapy services provided since April 2018, including teletherapy and brachytherapy. All radiotherapy delivered in England to cancer patients.', 'contactPoint': 'qresearch@phc.ox.ac.uk'}",3a65467a-61a1-4801-ba73-1e062de75c85,"{'typicalAgeRange': '0-115', 'spatial': ['United Kingdom,England'], 'pathway': 'Hospital', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'f6fd164d-0e46-401c-962f-5be66ac1d75b', '2.0.0': '5575bf81-2d52-40e3-b95a-7ba43d718965', 'latest': '5575bf81-2d52-40e3-b95a-7ba43d718965'}","{'description': 'QResearch linked National Radiotherapy Dataset (RTDS) data contain records of radiotherapy services provided since April 2018, including teletherapy and brachytherapy. All radiotherapy delivered in England to cancer patients in NHS facilities, or in private facilities where delivery was funded by the NHS, is included.'}",5575bf81-2d52-40e3-b95a-7ba43d718965,https://web.www.healthdatagateway.org/dataset/5575bf81-2d52-40e3-b95a-7ba43d718965,"{'access': {'accessRights': ['https://www.qresearch.org/information/information-for-researchers/'], 'dataProcessor': 'University of Oxford', 'accessRequestCost': ['https://www.qresearch.org/information/information-for-researchers/'], 'accessService': 'Remote Desktop to dedicated Windows Server.\n\nStandard Server Spec:\n16GB RAM, 4 Logical Xeon Gold Processors, 200 GB HDD\n\nMax available Server Spec:\n512GB RAM, 72 Logical Xeon Gold Processors, 2TB HDD. Tesla V100 GPU', 'deliveryLeadTime': '1-2 MONTHS', 'dataController': 'University of Oxford', 'jurisdiction': ['GB-ENG']}, 'usage': {'investigations': ['https://www.qresearch.org/research/approved-research-programs-and-projects/'], 'resourceCreator': ['Cancer Registry'], 'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'dataUseRequirements': ['ETHICS APPROVAL REQUIRED', 'NOT FOR PROFIT USE']}, 'formatAndStandards': {'language': ['en'], 'format': ['TSV', 'Stata', 'SQL Server Database', 'CSV'], 'vocabularyEncodingScheme': ['ICD10', 'SNOMED CT'], 'conformsTo': ['NHS DATA DICTIONARY']}}","{'temporal': {'accrualPeriodicity': 'ANNUAL', 'endDate': '2021-03-31', 'timeLag': 'MORE 6 MONTHS', 'startDate': '2018-04-01'}, 'origin': {'purpose': ['CARE', 'DISEASE REGISTRY', 'ADMINISTRATIVE'], 'source': [], 'collectionSituation': []}}",2022-03-21T16:32:27Z,"[{'observationDate': '04/02/2022', 'measuredProperty': 'Count', 'observedNode': 'EVENTS', 'measuredValue': '35047612'}]",2.0.0,,2022-06-08T09:52:21Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 10, 'structuralMetadata.columnName': 10, 'structuralMetadata.columnDescription': 10, 'structuralMetadata.dataType': 10, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'ac77a4c7-72be-43b0-b60e-e0cc706edfc8', 'description': 'RTDS', 'name': 'Radiotherapy treatment dataset', 'dataElementsCount': 10, 'dataElements': '00dcc77c-e267-444d-a818-27fc0e7f0c8a, c5fbdc76-232d-46ae-95fd-0886d1470176, b71d2fe1-8a16-4db7-af62-f910dc2ebe86, eea204fd-157d-43d5-b7ff-5ee0341549ad, 3d71a8f8-2f52-45c3-bef6-e199537ff513, d3f0f4ea-1c04-4174-b7e1-8ad3f9e42162, f7c2ebd4-0525-4b08-8ebc-7ffb7d8b2d66, bb973cb0-bd23-4638-95bd-68ca59ac1bc4, 92522c8f-75b7-4d53-b2ca-f10a4dc36026, 1713ec5c-76de-4be3-b308-7b71edb0a61c'}]}"
"{'title': 'IBD Registry COVID-19', 'abstract': 'A consented IBD dataset of 9,800 participants, with a further 30,000 ethically-permissioned records for research related to COVID-19 and IBD. Includes patient demographics, medications plus vaccinations, responses and care received April 2020-June 2021.', 'publisher': {'name': 'GUT REACTION', 'memberOf': 'HUB', 'identifier': '607db9c3e1f9d3704d570d0a'}, 'contactPoint': 'analysis@ibdregistry.org.uk', 'keywords': ['Inflammatory Bowel Disease', 'IBD', 'COVID-19', 'SARS-CoV-2 ', 'immune-mediated inflammatory diseases', 'biological therapies', 'immuno-suppressant', 'immune-modifying drugs', 'vulnerable patient groups', 'vaccine']}",ffdf167b-f3a3-4d78-a228-2865aea90509,"{'pathway': 'Dataset collected during the initial COVID-19 phase with first data collection phase primarily in April 2020 and second in June 2021.  Data collected by survey from people self-identifying as having a diagnosis of IBD and at risk from COVID-19 due to a combination of risk factors set out by the BSG', 'spatial': ['https://www.geonames.org/2635167/united-kingdom.html'], 'followup': 'OTHER', 'typicalAgeRange': '18-100', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '55b311a8-7162-410c-8cf7-eef1ac9ff544'},"{'description': ""The Registry has captured a consented research dataset from 9,800 patients with a further 30,000 ethically permissioned records for research related to IBD and COVID-19. This includes patient demographics, medications; plus vaccinations, responses and care received during COVID-19 period April 2020-June 2021.  The original source of the data was the IBD Registry's COVID-19 IBD Risk Tool, which was launched at the start of the pandemic (1 April 2020) to allow people with IBD to self-assess their risk.  It had a high uptake, with over 16,000 people completing it in the first week alone; by the first end of shielding in August 2020 ovr 37,000 people with IBD had completed it.  Ethical permission was sought and received to re-contact participants for use of this data in research relate to IBD and COVID-19, along with a follow-on survey to give a second timepoint about one year later, which was by June 2021. 9,800 people consented and completed the follow-on (second timepoint) survey, with the ethical permissions allowing the original dataset (first timepoint only) to also be used in research under more restricted permissions providing all requests for withdrawal fulfilled."", 'associatedMedia': ['https://ibdregistry.org.uk/covid-19/']}",55b311a8-7162-410c-8cf7-eef1ac9ff544,https://web.www.healthdatagateway.org/dataset/55b311a8-7162-410c-8cf7-eef1ac9ff544,"{'usage': {'investigations': ['https://ibdregistry.org.uk/analysis-research'], 'resourceCreator': ['IBD Registry Ltd'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'USER SPECIFIC RESTRICTION', 'TIME LIMIT ON USE'], 'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS']}, 'access': {'accessRequestCost': ['https://ibdregistry.org.uk/analysis-research'], 'deliveryLeadTime': '2-4 WEEKS', 'jurisdiction': ['GB'], 'dataController': 'IBD Registry Ltd', 'accessService': 'Data may only be accessed in a Trusted Research Environment (TRE) approved by the IBD Registry, preferably the IBD Registry’s own TRE.', 'dataProcessor': 'Data processor is AIMES (https://aimes.uk/) who manage the data platform where our health data is managed', 'accessRights': ['https://ibdregistry.org.uk/analysis-research']}, 'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['ICD10'], 'format': ['text', 'csv'], 'conformsTo': ['NHS DATA DICTIONARY']}}","{'temporal': {'endDate': '2021-06-30', 'startDate': '2020-04-01', 'timeLag': 'NOT APPLICABLE', 'accrualPeriodicity': 'STATIC', 'distributionReleaseDate': '2021-06-30'}, 'origin': {'purpose': ['STUDY', 'OTHER'], 'source': ['ELECTRONIC SURVEY'], 'collectionSituation': ['HOME']}}",2021-11-05T16:38:26Z,"[{'observedNode': 'PERSONS', 'disambiguatingDescription': ""Persons (patients) self-identifying as having a confirmed clinical diagnosis of IBD and being resident in the UK at the first timepoint (between April and August 2020) and consenting to take part in the Registry's ethically approved COVID-19 IBD study. )"", 'measuredValue': '9800', 'observationDate': '01/04/2020', 'measuredProperty': 'COUNT OF PATIENTS'}, {'observedNode': 'PERSONS', 'observationDate': '01/04/2020', 'measuredValue': '30000', 'disambiguatingDescription': 'Persons (patients) self-identifying as having a confirmed clinical diagnosis of IBD and being resident in the UK at the first timepoint (between April and August 2020) with ethical permission for data inclusion in an ethically approved COVID-19 IBD study', 'measuredProperty': 'COUNT OF PATIENTS'}, {'observedNode': 'EVENTS', 'measuredValue': '39800', 'observationDate': '01/04/2020', 'measuredProperty': 'COUNT OF MEDICATIONS', 'disambiguatingDescription': 'The medications reported by each participant as being taken at the first timepoint, plus other medications-related data specific to the medication type.  This survey was repeated at the second timepoint in June 2021'}, {'observedNode': 'FINDINGS', 'measuredValue': '9800', 'observationDate': '30/06/2021', 'measuredProperty': 'COUNT OF VACCINATIONS', 'disambiguatingDescription': 'The vaccination status reported by each participant as at the second timepoint'}, {'observedNode': 'FINDINGS', 'measuredValue': '9800', 'observationDate': '30/06/2021', 'measuredProperty': 'COUNT OF WORK', 'disambiguatingDescription': 'The work type reported by each participant at the second timepoint, particularly focused on healthcare profession work'}, {'observedNode': 'FINDINGS', 'measuredValue': '9800', 'observationDate': '30/06/2021', 'measuredProperty': 'COUNT OF ACTIVITY (DISEASE)', 'disambiguatingDescription': 'The disease activity measure of control reported by each participant at the second timepoint'}, {'observedNode': 'FINDINGS', 'measuredValue': '9800', 'observationDate': '30/06/2021', 'measuredProperty': 'COUNT OF PROMS', 'disambiguatingDescription': 'The disease measure of control reported by each participant at the second timepoint as captured by the ICHOM-validated IBD-Control 8 instrument'}, {'observedNode': 'FINDINGS', 'measuredValue': '9800', 'observationDate': '30/06/2021', 'measuredProperty': 'COUNT OF ABOUT 2020', 'disambiguatingDescription': 'The responses to questions related to 2021 experiences by the participant captured at the second timepoint '}, {'observedNode': 'PERSONS', 'measuredValue': '9800', 'observationDate': '30/06/2021', 'measuredProperty': 'COUNT'}, {'observedNode': 'PERSONS', 'measuredProperty': 'COUNT OF DEMOGRAPHICS', 'observationDate': '01/04/2020', 'disambiguatingDescription': 'Basic demographic information about the participant captured at the first timepoint.  Enhanced demographic information was captured at the second timepoint from the consented group (9,800)', 'measuredValue': '39800'}, {'observedNode': 'PERSONS', 'observationDate': '01/04/2020', 'measuredProperty': 'COUNT OF MEDICATIONS', 'measuredValue': '39800', 'disambiguatingDescription': 'Medications associated with the first timepoint'}, {'observedNode': 'PERSONS', 'measuredValue': '9800', 'observationDate': '30/06/2021', 'measuredProperty': 'VACCINATIONS'}, {'observedNode': 'PERSONS', 'measuredValue': '9800', 'observationDate': '30/06/2021', 'measuredProperty': 'WORK'}, {'observedNode': 'FINDINGS', 'measuredValue': '9800', 'observationDate': '30/06/2021', 'measuredProperty': 'COUNT OF HEALTHCARE EXPERIENCE', 'disambiguatingDescription': 'Experience of healthcare during 2020-21 as judged by the participant, captured at the second timepoint'}]",1.0.0,{'derivation': ['Not available']},2021-11-05T16:38:26Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'LBIH Biobank', 'doiName': 'Not Available', 'contactPoint': 'LBIH-Biobank@liverpool.ac.uk', 'publisher': {'contactPoint': 'LBIH-Biobank@liverpool.ac.uk', 'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE'}, 'keywords': ['Malignant liver neoplasm', 'Malignant neoplasm of endometrium of corpus uteri', 'Malignant melanoma of eye', 'LBIH', 'UKCRC Tissue Directory', 'Malignant cervix tumour', 'Malignant adrenal gland tumour', 'Biobank'], 'abstract': 'Samples & data for following disorders: Malignant melanoma of eye, Malignant neoplasm of endometrium of corpus uteri, Malignant liver neoplasm, Malignant adrenal gland tumour, Malignant cervix tumour and others.\nSee full list in Description.'}",c0318a31-a32c-4d3a-9591-dfe9352bf2b9,"{'typicalAgeRange': '40-150', 'physicalSampleAvailability': ['PLASMA', 'SERUM', 'TISSUE', 'URINE'], 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '32b5d90f-6bad-40f8-96d7-69b11df6d5ff', '3.0.0': '567b23fe-abf2-4e2e-88f7-505dfeaa3cde', '1.0.0': 'a2e17de9-de8b-4685-9dcb-3475d38131f2', '0.0.1': '1c280793-e50a-4300-b175-13f984c1c832', 'latest': '567b23fe-abf2-4e2e-88f7-505dfeaa3cde'}","{'description': ""The LBIH Biobank has been specifically created to provide SMEs and academic researchers with high quality biosamples, data, and analytical services. We house a vast array of biosamples, both cancerous and non-cancerous, and have the ability to collect bespoke samples and data to suit the needs of researchers. We have access to a wide variety of samples types including, but not limited to, frozen tissue, fresh tissue, blood products, urine and FFPE blocks. \n\nThe LBIH Biobank can further process these into a number of products such as DNA, frozen sections, and cryo-aliquots. In order to offer a 'one-stop shop' for research, we offer additional services such as IHC, next generation sequencing, TMA creation, and project management for studies and projects, to include storage of trial samples.\n\nWe provide access to collection of samples and data across the following diseases: \n•\tMalignant melanoma of eye (disorder)\n•\tMalignant neoplasm of endometrium of corpus uteri (disorder)\n•\tMalignant neoplasm of liver\n•\tMalignant tumour of adrenal gland (disorder)\n•\tMalignant tumour of cervix\n•\tMalignant tumour of kidney (disorder)\n•\tMalignant tumour of oral cavity (disorder)\n•\tMalignant tumour of prostate (disorder)\n•\tMalignant tumour of stomach (disorder)\n•\tMalignant tumour of thyroid gland (disorder)\n•\tMalignant tumour of urinary bladder (disorder)\n•\tMalignant tumour of vulva (disorder)\n•\tMalignant tumour of breast\n•\tMalignant tumour of colon\n•\tMalignant tumour of oesophagus\n•\tMalignant tumour of ovary\n•\tMalignant tumour of pancreas"", 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",567b23fe-abf2-4e2e-88f7-505dfeaa3cde,https://web.www.healthdatagateway.org/dataset/567b23fe-abf2-4e2e-88f7-505dfeaa3cde,"{'access': {'dataProcessor': 'Not Applicable', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED.', 'accessRequestCost': 'Not specified', 'dataController': 'University of Liverpool', 'accessRights': 'Please contact the publisher using Contact Point details provided.', 'jurisdiction': 'GB-ENG'}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '1993-01-01'}}",2020-01-13T17:05:23Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:03:10Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Assessing the feasibility and effectiveness of introducing pulse oximetry', 'publisher': {'memberOf': 'HUB', 'identifier': '607db9c2e1f9d3704d570ce6', 'name': 'BREATHE'}, 'keywords': ['RESPIRE', ' Bangladesh', ' pulse oximetry', ' integrated management of childhood illness', ' IMCI', ' health facilities'], 'contactPoint': 'RESPIRE@ed.ac.uk', 'abstract': 'The aim of the project is to assess the feasibility, acceptability and operational challenges of introducing PO in IMCI services through routine providers at first-level primary care health facilities in Bangladesh.'}",2f36b7b3-e50f-459f-a691-f62dde65e2bd,"{'spatial': 'https://www.geonames.org/1210997/bangladesh.html', 'typicalAgeRange': '18-64'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'b5c9f4c7-bf48-466f-a4e9-e9053225c0fe', '1.0.0': '567b5d24-07df-4430-8466-4444ecbe86c8', 'latest': '567b5d24-07df-4430-8466-4444ecbe86c8'}","{'description': ""Integrated Management of Childhood Illness (IMCI) is a global strategy, developed by WHO and UNICEF, for the management of common childhood illnesses, including pneumonia, in low-resource settings. IMCI guides a service provider to follow a step-by-step approach in history taking, clinical assessment, classification of the illness and treatment for a sick child. IMCI classifications depend on the clinical assessment skills of service providers and this subjectivity might lead to misclassification and inappropriate referral/treatment.\n\nHypoxemia (low levels of oxygen in the blood) is one of the strongest predictors of mortality due to pneumonia in children. Pulse oximetry (PO) is a non-invasive method for monitoring a person's blood oxygen level. The integration of PO in existing IMCI services could improve the accuracy of pneumonia diagnosis and treatment.\n\nThere are several health systems barriers and operational challenges associated with introducing a new technology, like PO, in developing country settings.\n\nThe aim of the project is to assess the feasibility, acceptability and operational challenges of introducing PO in IMCI services through routine providers at first-level primary care health facilities in Bangladesh.\n\nThe embedded PhD aims to assess the feasibility, acceptability and operational challenges of introducing PO in IMCI services at first-level primary care health facilities in Bangladesh, as well as evaluating its effectiveness and cost-effectiveness.\n\nFor further information, see associated media section.\n\nalso https://www.ed.ac.uk/usher/respire/phd-studentships/ahmed-ehsanur-rahman for further details"", 'associatedMedia': ['https://www.ed.ac.uk/usher/respire/acute-respiratory-disorders/pulse-oximetry-bangladesh'], 'isPartOf': 'RESPIRE'}",567b5d24-07df-4430-8466-4444ecbe86c8,https://web.www.healthdatagateway.org/dataset/567b5d24-07df-4430-8466-4444ecbe86c8,"{'access': {'accessService': 'Access service varies on a project-by-project basis. Contact the RESPIRE team for further in formation', 'dataController': 'BREATHE', 'dataProcessor': 'NOT APPLICABLE', 'accessRights': ['https://www.ed.ac.uk/usher/respire/contact-us'], 'jurisdiction': ['GB-ENG', 'GB-SCT', 'GB-WLS'], 'deliveryLeadTime': 'VARIABLE'}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'format': ['text'], 'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL']}, 'usage': {'resourceCreator': ['RESPIRE'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}}","{'temporal': {'startDate': '2018-01-01', 'accrualPeriodicity': 'STATIC', 'endDate': '2020-12-31', 'distributionReleaseDate': '2020-12-31', 'timeLag': 'NOT APPLICABLE'}, 'origin': {'purpose': ['STUDY'], 'collectionSituation': ['COMMUNITY']}}",2021-04-09T15:30:22Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '1', 'observationDate': '31/12/2020', 'measuredProperty': 'Count'}]",1.0.0,,2021-08-09T12:56:16Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'TNT: Triple Negative breast cancer Trial', 'abstract': 'Collection of samples and data across the following diseases: Malignant tumour of breast', 'publisher': {'contactPoint': 'tnt-icrctsu@icr.ac.uk', 'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE'}, 'keywords': ['Breast Cancer', 'Trial', 'UKCRC Tissue Directory', 'Malignant tumour of breast', 'Triple Negative', 'TNT'], 'contactPoint': 'tnt-icrctsu@icr.ac.uk', 'doiName': 'Not Available'}",5f4c825d-d6c3-453e-9667-8cdf2329b6e1,"{'physicalSampleAvailability': ['IN PROGRESS'], 'typicalAgeRange': 'Not Known', 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'a6cf77b2-4516-4e69-b880-518735a858c8', '3.0.0': '56f3e791-a204-4f67-a4d0-52803148d71a', '1.0.0': 'a289d376-2742-4a18-9204-b76d0cd60ad2', '2.0.0': '20c2a274-843c-43fa-9b76-38ef2f8a3d64', 'latest': '56f3e791-a204-4f67-a4d0-52803148d71a'}","{'description': 'TNT is a phase III, multi centre, randomised trial of carboplatin versus docetaxel in women with ER-, PgR- and HER2- metastatic or recurrent locally advanced breast cancer.  Patients will be randomised (1:1) to carboplatin or docetaxel and will cross over to the alternative treatment (docetaxel (if randomised to carboplatin) or carboplatin (if randomised to docetaxel)) on progression.  Trial Treatment: Group A:  Carboplatin AUC 6, q 3 weeks for 6 cycles (18 weeks) Group B:  Docetaxel 100mg/m2, q 3 weeks for 6 cycles (18 weeks) On evidence of disease progression, patients will cross over to the alternative treatment.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",56f3e791-a204-4f67-a4d0-52803148d71a,https://web.www.healthdatagateway.org/dataset/56f3e791-a204-4f67-a4d0-52803148d71a,"{'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}, 'access': {'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'accessRequestCost': 'Not specified', 'dataProcessor': 'Not Applicable', 'dataController': 'The Institute of Cancer Research', 'jurisdiction': 'GB-ENG'}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2007-01-01'}}",2020-01-13T17:14:15Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:14:57Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Wellcome Sanger Institute: Whole Exome Sequencing', 'abstract': 'There is a substantial overlap between the NIHR IBD BioResource and the IBD UK Genetics Consortium (IBDGC). The NIHR BioResource provides some DNA samples. IBDGC data is being provided by the Wellcome Sanger Institute, who are performing the sequencing.', 'publisher': {'memberOf': 'HUB', 'name': 'GUT REACTION', 'identifier': '607db9c3e1f9d3704d570d0a'}, 'keywords': ['IBD', ""Crohn's"", 'colitis', 'WES', 'Exome', 'Genome', 'Sequencing'], 'contactPoint': 'nbr@bioresource.nihr.ac.uk'}",cd20517c-2f75-40e9-9ee8-563d32624b55,"{'typicalAgeRange': '18-85', 'spatial': ['https://www.geonames.org/2635167/united-kingdom.html'], 'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM'], 'followup': '1 - 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'f88fa262-525a-4d8a-94bd-cb6f5e7efbf7', '1.0.0': '5727d014-0c5c-4dcb-89c9-ff33e1b680bb', 'latest': '5727d014-0c5c-4dcb-89c9-ff33e1b680bb'}","{'description': 'There is a substantial overlap between the participants in the NIHR IBD BioResource and the long-running IBD UK Genetics Consortium (IBDGC).  The Wellcome Sanger Institute performs the sequencing work for the IBDGC. The NIHR BioResource provides DNA samples to this initiative. For those samples, and where there is an additional overlap, e.g. because a participant has been seen before and therefore no new sample is required, this data is being provided to the Gut Reaction Hub by the Wellcome Sanger Institute.', 'associatedMedia': ['https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction-data-sources', 'https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction/'], 'isPartOf': 'Not Applicable'}",5727d014-0c5c-4dcb-89c9-ff33e1b680bb,https://web.www.healthdatagateway.org/dataset/5727d014-0c5c-4dcb-89c9-ff33e1b680bb,"{'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'format': ['text', 'vcf'], 'language': ['en']}, 'access': {'accessRequestCost': ['https://bioresource.nihr.ac.uk/using-our-bioresource/industry-researchers/industry-bioresource-usage-costs/'], 'accessRights': ['https://bioresource.nihr.ac.uk/using-our-bioresource'], 'jurisdiction': ['GB-GB'], 'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)', 'accessService': 'Data may only be accessed in an environment approved by the IBDGC UK.', 'deliveryLeadTime': '2-6 MONTHS', 'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)'}, 'usage': {'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'isReferencedBy': ['Publications (with DOIs) are listed at https://www.ibdresearch.co.uk/what-is-inflammatory-bowel-disease-ibd/publications-from-the-uk-ibd-genetics-consortium/'], 'dataUseLimitation': ['RESEARCH USE ONLY'], 'resourceCreator': ['IBD Genetics Consortium UK, Welcome Sanger Institute']}}","{'origin': {'collectionSituation': ['OTHER'], 'purpose': ['STUDY'], 'source': ['MACHINE GENERATED']}, 'temporal': {'startDate': '2016-01-13', 'timeLag': 'MORE 6 MONTHS', 'accrualPeriodicity': 'IRREGULAR'}}",2021-02-21T16:33:05Z,"[{'observedNode': 'EVENTS', 'measuredValue': '6996', 'disambiguatingDescription': 'Whole Exome Sequences - CRAM files', 'observationDate': '01/09/2021', 'measuredProperty': 'COUNT'}, {'observedNode': 'EVENTS', 'disambiguatingDescription': 'Whole Exome Sequences - VCF joint file', 'measuredValue': '6996', 'measuredProperty': 'COUNT', 'observationDate': '01/09/2021'}]",1.0.0,{'derivation': ['European Genome-phenome Archive datasets:  https://ega-archive.org/studies/phs000367']},2021-09-09T09:50:54Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'NIHR IBD BioResource: Health and Lifestyle Questionnaire', 'abstract': 'Most NIHR IBD BioResource participants complete a self-report form on recruitment. Typically this contains e.g. height, weight, smoking history and alcohol consumption, but also includes questions relating to disease history and current medications.', 'keywords': [""Crohn's"", 'IBD', 'colitis', 'health', 'lifestyle', 'feasibility', 'cohort discovery', 'recall', 'CO-CONNECT'], 'publisher': {'identifier': '607db9c3e1f9d3704d570d0a', 'name': 'GUT REACTION', 'memberOf': 'HUB'}, 'contactPoint': 'nbr@bioresource.nihr.ac.uk'}",18bfe765-5733-41f3-8114-0a1ec2524b5b,"{'followup': '1 - 10 YEARS', 'spatial': 'https://www.geonames.org/2635167/united-kingdom.html', 'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM'], 'typicalAgeRange': '18-85'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '57458394-945e-4e6a-abc7-91df0f44cb60'},"{'description': 'The NIHR IBD Bioresource comprises ~34k participants with Inflammatory Bowel Disease (IBD). The NIHR IBD BioResource requests a self-reported health and lifestyle questionnaire from all participants at recruitment. About 70% of participants complete the questionnaire. Typically variables include height, weight, smoking history and alcohol consumption, with addition of questions relating to disease history and current medications. This is used to pre-screen or match participants when inviting them to take part in experimental medicine studies. De-identified versions of this data are available to researchers investigating the feasibility of future studies.', 'isPartOf': 'Not Applicable', 'associatedMedia': ['https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction-data-sources', 'https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction/']}",57458394-945e-4e6a-abc7-91df0f44cb60,https://web.www.healthdatagateway.org/dataset/57458394-945e-4e6a-abc7-91df0f44cb60,"{'formatAndStandards': {'language': ['en'], 'conformsTo': ['I2B2'], 'vocabularyEncodingScheme': ['SNOMED CT'], 'format': ['text', 'csv']}, 'usage': {'dataUseLimitation': ['RESEARCH USE ONLY'], 'isReferencedBy': ['Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/'], 'resourceCreator': ['NIHR BioResource. Acknowledgement text: ""We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.""'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION']}, 'access': {'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)', 'accessRights': ['https://bioresource.nihr.ac.uk/using-our-bioresource'], 'deliveryLeadTime': '2-6 MONTHS', 'accessRequestCost': ['https://bioresource.nihr.ac.uk/using-our-bioresource/industry-researchers/industry-bioresource-usage-costs/'], 'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)', 'jurisdiction': ['GB-GB'], 'accessService': 'Some de-identified data may be released to researchers in a platform-independent filetype (e.g. CSV). However, access to any data acquired via NHS Digital is subject to strict restrictions governing where data may be accessed and from which locale - access in a Trustworthy Research Environment (TRE) at AIMES secure data centre (https://aimes.uk/).'}}","{'temporal': {'startDate': '2016-01-13', 'accrualPeriodicity': 'QUARTERLY', 'timeLag': '1-2 MONTHS', 'distributionReleaseDate': '2021-03-31'}, 'origin': {'purpose': ['STUDY'], 'collectionSituation': ['CLINIC', 'COMMUNITY', 'HOME'], 'source': ['ELECTRONIC SURVEY', 'PAPER BASED']}}",2021-09-09T17:31:28Z,"[{'observedNode': 'PERSONS', 'disambiguatingDescription': 'Participants who returned health and lifestyle questionnaires', 'observationDate': '01/09/2021', 'measuredProperty': 'COUNT', 'measuredValue': '22773'}]",6.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['ALL', 'COVID-19 SARI-Watch (formerly CHESS)', 'Civil Registration - Deaths', 'Covid-19 Second Generation Surveillance System', 'Emergency Care Data Set (ECDS)', 'Hospital Episode Statistics Accident and Emergency', 'Hospital Episode Statistics Admitted Patient Care', 'Hospital Episode Statistics Critical Care', 'Hospital Episode Statistics Outpatients', 'Intensive Care National Audit & Research Centre (ICNARC) Case Mix Programme (https://www.icnarc.org/Our-Audit/Audits/Cmp/About)']}",2021-09-09T17:31:28Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 154, 'structuralMetadata.columnName': 154, 'structuralMetadata.columnDescription': 154, 'structuralMetadata.dataType': 154, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '3088de22-0682-4a05-a04a-80539d3f6093', 'description': 'DDI: Medications and Conditions', 'name': 'IBD NIHR BioResource: Health and Lifestyle Questionnaire', 'dataElementsCount': 154, 'dataElements': '757799a2-8edb-4445-9499-548ac60344d4, 9718adf0-a459-4f44-bc91-2c51329c9910, 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"{'title': 'Exploration of Pneumonia Related Policy Formation and Implementation in Pakistan', 'contactPoint': 'RESPIRE@ed.ac.uk', 'publisher': {'name': 'BREATHE', 'memberOf': 'HUB', 'identifier': '607db9c2e1f9d3704d570ce6'}, 'keywords': ['Pneumonia', 'BREATHE', 'Policy', 'RESPIRE', 'Pakistan'], 'abstract': 'The objective of this study is to identify and analyze pneumonia related policies in Pakistan for children under five and identify key stakeholders who influence these policies and program financially and technically.'}",e0d00cb7-62e1-4a38-8df6-cf537b59228d,"{'spatial': 'https://Pakistan', 'typicalAgeRange': '18-150', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'd5446d68-2fb9-4f0f-962e-7b7ed484d534', '2.0.0': '590e7bb7-a6e3-4f87-af2f-e46943f98ce9', '1.0.0': 'a0d8d480-475f-41f6-811a-f6f5bdfa8fc3', 'latest': '590e7bb7-a6e3-4f87-af2f-e46943f98ce9'}","{'description': 'In Pakistan, numerous programs have been launched for management of acute respiratory infections.However, despite completion, state of pneumonia mortality remains unchanged as no sustainable solutions have been yielded by these programs. The objective of this study is to identify and analyze pneumonia related policies in Pakistan for children under five and identify key stakeholders who influence these policies and program financially and technically.The study is being conducted in two phases. The first was of content analysis of pneumonia related documents and IDI’s of policy stakeholders. The second phase consists of social network research conducted by studying actors linked together by social relations achieved through net mapping exercise. \n\nFor further information, see: https://www.ed.ac.uk/usher/respire/acute-respiratory-disorders/pneumonia-policy', 'associatedMedia': ['https://www.ed.ac.uk/usher/respire/acute-respiratory-disorders/pneumonia-policy'], 'isPartOf': 'BREATHE'}",590e7bb7-a6e3-4f87-af2f-e46943f98ce9,https://web.www.healthdatagateway.org/dataset/590e7bb7-a6e3-4f87-af2f-e46943f98ce9,"{'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': ['RESPIRE Collaboration']}, 'formatAndStandards': {'language': ['en'], 'format': ['text'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL']}, 'access': {'accessService': 'Access is managed on a project-by-project basis. Contact the RESPIRE team.', 'dataProcessor': 'RESPIRE', 'dataController': 'RESPIRE', 'jurisdiction': ['PK'], 'accessRights': ['https://www.ed.ac.uk/usher/respire/contact-us']}}","{'temporal': {'timeLag': 'NOT APPLICABLE', 'startDate': '2018-05-01', 'endDate': '2020-07-31', 'accrualPeriodicity': 'STATIC'}}",2020-07-30T14:07:44Z,"[{'observationDate': '31/07/2020', 'observedNode': 'FINDINGS', 'measuredValue': '1', 'measuredProperty': 'Count'}]",2.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-08-17T15:27:43Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Computational Framework to Interpret Chest X-rays and Diagnose Pneumonia', 'contactPoint': 'RESPIRE@ed.ac.uk', 'publisher': {'name': 'BREATHE', 'identifier': '607db9c2e1f9d3704d570ce6', 'memberOf': 'HUB'}, 'keywords': ['RESPIRE', ' Bangladesh', ' computational framework', ' automatic', ' interpret', ' chest', ' X-ray', ' pneumonia'], 'abstract': 'The aim of the project is to construct a computational framework to automatically and systematically interpret paediatric chest X-rays to diagnose pneumonia.'}",cf9bc775-1db7-44e4-9a16-317d5bb063a2,"{'spatial': 'https://www.geonames.org/countries/GB/united-kingdom.html', 'typicalAgeRange': '0-5'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'bbdb6bc3-bbf7-4b3e-805a-e16d73b899a7', '2.0.0': '598ab9d9-04a3-4628-be64-d8f026d266ac', '1.0.0': '43b99731-e1ac-4b44-b6a6-f589c294af63', 'latest': '598ab9d9-04a3-4628-be64-d8f026d266ac'}","{'description': 'It is estimated that 95% of the two million deaths due to pneumonia occur in developing countries. In Bangladesh alone, six million cases of pneumonia are diagnosed every year.  Unfortunately, diagnostic methods to date lack sensitivity or are difficult to fully standardized. The lack of a reliable diagnostic hampers the execution of evidence based interventions, impacting the monitoring of interventions, like vaccines.\n\nThe “gold standard” for defining pneumonia are chest X-rays. However, the interpretations are subjective, sometimes requiring multiple radiologists/clinicians to reach a conclusive diagnosis. As there are few well-trained radiologists/clinicians in resource-poor settings, having a tool to aid in the diagnosis of pneumonia would be invaluable in the impact monitoring of interventions.\n\nThe aim of the project is to construct a computational framework to automatically and systematically interpret paediatric chest X-rays to diagnose pneumonia.\n\nFor further information, see: https://www.ed.ac.uk/usher/respire/acute-respiratory-disorders/interpret-chest-x-rays', 'associatedMedia': ['https://www.ed.ac.uk/usher/respire'], 'isPartOf': 'RESPIRE'}",598ab9d9-04a3-4628-be64-d8f026d266ac,https://web.www.healthdatagateway.org/dataset/598ab9d9-04a3-4628-be64-d8f026d266ac,"{'access': {'accessService': 'Access service varies on a project-by-project basis. Contact the RESPIRE team for further in formation', 'dataController': 'BREATHE', 'jurisdiction': ['GB-ENG', 'GB-SCT', 'GB-WLS'], 'dataProcessor': 'NOT APPLICABLE', 'accessRights': ['https://www.ed.ac.uk/usher/respire'], 'deliveryLeadTime': 'VARIABLE'}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL'], 'format': ['text'], 'language': ['en']}, 'usage': {'resourceCreator': ['RESPIRE'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}}","{'origin': {'purpose': ['STUDY'], 'collectionSituation': ['COMMUNITY']}, 'temporal': {'startDate': '2018-07-01', 'endDate': '2020-12-31', 'distributionReleaseDate': '2020-12-31', 'timeLag': 'NOT APPLICABLE', 'accrualPeriodicity': 'STATIC'}}",2021-04-09T15:30:22Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '1', 'observationDate': '31/12/2020', 'measuredProperty': 'Count'}]",2.0.0,,2021-10-19T15:49:32Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Cardiac Audit Programme - Percutaneous Coronary Interventions (PCI)', 'publisher': {'name': 'HQIP', 'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d23'}, 'keywords': ['Percutaneous', 'Cardiac', 'PCI', 'Interventions', 'NCAP', 'Audit', 'Coronary'], 'abstract': 'Continuously ascertained record-level information on the types, timing, processes and outcomes of care for patients undergoing percutaneous coronary intervention (including stents and angioplasties) in all NHS and most private hospitals in the UK.', 'contactPoint': 'DataSharing@hqip.org.uk'}",ac7016ce-f7a9-4c71-bebb-6af6efa27844,"{'pathway': 'The NICOR datasets focus primarily on secondary care and therfore do not cover the whole patient pathway. The audit data may be linked with other primary cars datasets e.g, General Practice Extraction Services (GPES) to give a better undestanding of care pathways and how disease and treatments are manged over time.', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html'], 'followup': 'UNKNOWN', 'typicalAgeRange': '18-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '59f5b724-234f-401d-a8f5-df35ea9ecdc9'},"{'description': 'The dataset contains continuously ascertained record-level information on the types, timing, processes and outcomes of care provided to patients undergoing percutaneous coronary intervention procedures (including stents and angioplasties) performed all NHS hospitals and the majority of private hospitals in the UK.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)', 'associatedMedia': ['https://www.hqip.org.uk/a-z-of-nca/national-cardiac-audit-programme-ncap/#.YKPMaqhKiUk']}",59f5b724-234f-401d-a8f5-df35ea9ecdc9,https://web.www.healthdatagateway.org/dataset/59f5b724-234f-401d-a8f5-df35ea9ecdc9,"{'formatAndStandards': {'format': ['Excel'], 'language': ['en'], 'conformsTo': ['OTHER'], 'vocabularyEncodingScheme': ['OTHER']}, 'access': {'jurisdiction': ['GB-EAW'], 'accessRequestCost': ['https://www.nicor.org.uk/for-researchers/data-sharing-application-process/', 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'deliveryLeadTime': 'VARIABLE', 'accessRights': ['https://www.nicor.org.uk/for-researchers/data-sharing-application-process/', 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England', 'dataProcessor': 'Barts Health NHS Trust, host of the National Institute for Cardiovascular Outcomes Research (NICOR)'}, 'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE'], 'dataUseLimitation': ['NO RESTRICTION'], 'resourceCreator': ['Data has been provided by the Healthcare Quality Improvement Partnership from the National Cardiac Audit Programme']}}","{'origin': {'source': ['ELECTRONIC SURVEY', 'OTHER'], 'collectionSituation': ['IN-PATIENTS'], 'purpose': ['AUDIT']}, 'temporal': {'startDate': '2014-01-01', 'timeLag': 'VARIABLE', 'accrualPeriodicity': 'DAILY'}}",2021-11-29T21:30:57Z,"[{'observedNode': 'EVENTS', 'measuredValue': 100294, 'disambiguatingDescription': 'number of PCI procedures reported to the audit in 2018/19', 'observationDate': '01/01/2020', 'measuredProperty': 'Count'}]",5.0.0,"{'derivation': ['Not available'], 'qualifiedRelation': ['Data Linked with that from other custodians may be available, but the release of linked data will be subject to the separate permission of all relevant data controllers.']}",2021-11-29T21:30:57Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'HES Patient Reported Outcomes Measures (PROMs) data for CPRD GOLD', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c2e1f9d3704d570cee', 'name': 'CPRD'}, 'keywords': ['Reported', 'PROMS', 'Outcome', 'Patient', 'Measures'], 'abstract': 'CPRD GOLD linked HES Patient Reported Outcomes Measures (PROMs) data on quality of life before and after common NHS elective surgical procedures. Note, these data are no longer routinely available; contact enquiries@cprd.com to discuss.', 'contactPoint': 'enquiries@cprd.com'}",2439a88e-d961-4152-a7b5-042097946209,"{'followup': '1 - 10 YEARS', 'spatial': ['https://www.geonames.org/6269131/england.html'], 'typicalAgeRange': '0-115', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Secondary care'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'3.0.0': '9bc66d1b-68a2-4d4e-a54a-cc3842ff95c7', '5.0.0': '5a108169-4afd-4e02-908b-c65bddc3bd2e', '2.0.0': 'f0282745-d164-48c8-9862-0ce174b7c3de', '4.0.0': 'a1164dbd-4057-45a2-9860-cbb69696bd7c', '1.0.0': '15fe15d0-f7a2-4a29-8fb8-6bbd9f5e6ce6', '0.0.1': 'ae45dc38-d1f9-441b-a38b-367a3188c34d', 'latest': '5a108169-4afd-4e02-908b-c65bddc3bd2e'}","{'description': 'CPRD GOLD linked Hospital Episode Statistics Patient Reported Outcomes Measures (PROMs) data covers common elective surgical procedures performed in NHS England including groin hernia operations, hip replacements, knee replacements and varicose vein operations. 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"{'title': 'National Cardiac Audit Programme - National Adult Cardiac Surgery Audit (NACSA)', 'publisher': {'identifier': '607db9c4e1f9d3704d570d23', 'memberOf': 'ALLIANCE', 'name': 'HQIP'}, 'contactPoint': 'DataSharing@hqip.org.uk', 'abstract': 'Collects  consecutive, patient record-level operation data from all NHS hospitals in the UK that carry out adult heart surgery, including  CABG, valve and aortic surgery. Includes mortality and post-precedural complications. Began  in 2015', 'keywords': ['Cardiac', 'Surgery', 'NCAP', 'Audit', 'Adult']}",5f37e3c2-b5ac-43eb-8eba-ac94dbbff103,"{'pathway': 'The NICOR datasets focus primarily on secondary care and therfore do not cover the whole patient pathway. The audit data may be linked with other primary cars datasets e.g, General Practice Extraction Services (GPES) to give a better undestanding of care pathways and how disease and treatments are manged over time.', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html'], 'typicalAgeRange': '18-150', 'followup': 'UNKNOWN'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '88a353dd-f06e-445f-a96a-a8cb2fc45ea2', '4.0.0': '5a6009f8-c74a-4e72-b2a1-83be100f7841', '1.0.0': 'aba523f1-92fc-4502-a0a8-f95507ae5003', '2.0.0': 'faf7ec31-999a-4d87-9d6d-8837ff2fa486', '3.0.0': '3b7778c9-a8f5-4682-bb0a-b875dcc36cda', 'latest': '5a6009f8-c74a-4e72-b2a1-83be100f7841'}","{'description': 'The National Adult Cardiac Surgery Audit (NACSA) collects continuous, consecutive, patient record-level operation data from all NHS hospitals in the UK that carry out adult heart surgery, including coronary artery bypass grafts CABG), valve surgery and aortic surgery. The dataset includes activity and outcomes including mortality and post-procedural complications. Data is input by clinicians via the NICOR web portal. This dataset began collection in 2015.', 'associatedMedia': ['https://www.hqip.org.uk/a-z-of-nca/national-cardiac-audit-programme-ncap/#.YKPMaqhKiUk'], 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",5a6009f8-c74a-4e72-b2a1-83be100f7841,https://web.www.healthdatagateway.org/dataset/5a6009f8-c74a-4e72-b2a1-83be100f7841,"{'formatAndStandards': {'vocabularyEncodingScheme': ['OTHER'], 'format': ['Excel'], 'conformsTo': ['OTHER'], 'language': ['en']}, 'access': {'deliveryLeadTime': 'VARIABLE', 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England', 'accessRights': ['https://www.nicor.org.uk/for-researchers/data-sharing-application-process/', 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'jurisdiction': ['GB-EAW'], 'dataProcessor': 'Barts Health NHS Trust, host of the National Institute for Cardiovascular Outcomes Research (NICOR)', 'accessRequestCost': ['https://www.nicor.org.uk/for-researchers/data-sharing-application-process/', 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data']}, 'usage': {'dataUseLimitation': ['NO RESTRICTION'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE'], 'resourceCreator': ['Data has been provided by the Healthcare Quality Improvement Partnership from the National Cardiac Audit Programme']}}","{'temporal': {'accrualPeriodicity': 'DAILY', 'timeLag': 'VARIABLE', 'startDate': '2001-10-20'}, 'origin': {'source': ['ELECTRONIC SURVEY', 'OTHER'], 'purpose': ['AUDIT'], 'collectionSituation': ['IN-PATIENTS']}}",2020-01-13T14:54:28Z,"[{'observedNode': 'EVENTS', 'measuredValue': 34000, 'disambiguatingDescription': 'number of cardiac surgeries included in the three years 2016-2019', 'observationDate': '01/01/2020', 'measuredProperty': 'Count'}]",4.0.0,"{'derivation': ['Not available'], 'qualifiedRelation': ['Data Linked with that from other custodians may be available, but the release of linked data will be subject to the separate permission of all relevant data controllers.']}",2021-11-29T21:30:38Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Joint Registry - Primary Ankle Replacement dataset', 'abstract': 'The NJR datasets collect continuous, prospective data on patients undergoing primary and revision total joint replacement (hip, knee, shoulder, elbow and ankle). The dataset covers the period 2003 to present and covers the UK and beyond', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d23', 'name': 'HQIP'}, 'contactPoint': 'research@njr.org.uk', 'keywords': ['Replacement', 'Joint', 'NJR', 'Ankle', 'Primary', 'Registry']}",b8d009d0-0163-4aaf-8bd6-ad363c859862,"{'typicalAgeRange': '0-150', 'followup': 'UNKNOWN', 'pathway': 'Data is representative of the patient pathway. Readmissions for reasons other than revision surgery are not collected.', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/3042225/isle-of-man.html', 'https://www.geonames.org/3042363/guernsey.html', 'https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html', 'https://www.geonames.org/2641364/northern-ireland.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '798cf50f-bba6-431d-bc2f-c12110a40472', '4.0.0': '5ad2e0c9-f0ba-4947-90f7-b19431080f83', '2.0.0': 'e38c8d6c-8655-4432-b654-23f89c0bb495', '1.0.0': '2477b307-362c-4931-b46d-b06a4fb62645', '3.0.0': '3de5a3fe-a1bf-4075-883f-f076a460ae26', 'latest': '5ad2e0c9-f0ba-4947-90f7-b19431080f83'}","{'description': ""The National Joint Registry for England, Wales, Northern Ireland and the Isle of Man is a database containing details of all primary and revision total hip, knee, shoulder, elbow and ankle replacement procedures carried out in NHS and independent sector hospitals in England, Wales, Northern Ireland and the Isle of Man.  Primary hip replacement has its own specific dataset for procedures.\nInitially this data is collected during a patient's time at hospital as part of bespoke data collection to support the NJR . This is submitted to NEC Software Solutions (contracted to the NJR) for processing and is used to monitor the quality and safety of patient care and outcomes. \nThis same data can also be processed and used for non-clinical purposes, such as research and planning health services. Because these uses are not to do with direct patient care, they are called 'secondary uses'. This is the NJR research ready data set.\nNJR data covers all procedures carried out in NHS and independent sector hospitals  in England, Wales (from 2003), Northern Ireland )from 2013), the Isle of Man (from 2015) and the States of Guernsey (from 2019).\nEach NJR record contains a wide range of information about an individual patient treated at an NHS or independent sector hospital, including:\n• clinical information about surgical indications and operations\n• patient information, such as age group and gender\n• component information, such as the brand and size of prosthesis used\n• outcomes, such as whether a revision procedure has been undertaken\nNJR apply a strict statistical disclosure control in accordance with the NHS Digital protocol, to all published NJR data. This suppresses small numbers to stop people identifying themselves and others, to ensure that patient confidentiality is maintained.\nWho NJR data is for\nNJR can provide data for the purpose of healthcare analysis to the NHS, government and others including:\n• national bodies and regulators, such as the Department of Health, NHS England, Public Health England, NHS Improvement and the CQC\n• local Clinical Commissioning Groups (CCGs)\n• provider organisations\n• government departments\n• researchers and commercial healthcare bodies\n• National Institute for Clinical Excellence (NICE)\n• patients, service users and carers\n• the media\nUses of the statistics\nThe statistics are known to be used for:\n• national policy making\n• benchmarking performance against other hospital providers or CCGs  \n• academic research\n• analysing service usage and planning change\n• providing advice to ministers and answering a wide range of parliamentary questions\n• national and local press articles\n• international comparison\nMore information can be found at http://www.njrcentre.org.uk/njrcentre/"", 'isPartOf': 'NJR', 'associatedMedia': ['https://www.njrcentre.org.uk/njrcentre/Research/Research-requests']}",5ad2e0c9-f0ba-4947-90f7-b19431080f83,https://web.www.healthdatagateway.org/dataset/5ad2e0c9-f0ba-4947-90f7-b19431080f83,"{'access': {'accessRequestCost': ['http://www.njrcentre.org.uk/njrcentre/Portals/0/NJR%20cost%20recovery%20policy%20April%202019%20v1.0.pdf?ver=2019-04-04-105011-240'], 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England', 'dataProcessor': 'NEC Software Solutions', 'deliveryLeadTime': 'VARIABLE', 'accessRights': ['http://www.njrcentre.org.uk/njrcentre/Research/Research-requests', 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'jurisdiction': ['GB-EAW']}, 'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'resourceCreator': [""the study title should be followed by the suffix: ‘An analysis from the National Joint Registry'. 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"{'title': 'Longitudinal C-reactive protein concentrations in COVID-19: an OMOP dataset', 'publisher': {'memberOf': 'HUB', 'identifier': '607db9c5e1f9d3704d570d5f', 'name': 'PIONEER'}, 'contactPoint': 'PIONEER@UHB.NHS.UK', 'keywords': ['C-reactive proteins', 'CRP', 'Precision medicine', 'COVID-19', 'Acute', 'Prognosis', 'CRP Inhibition', 'Hospitalisation', 'Co-Morbidities', 'multimorbidity', 'age', 'Ethnicity', 'social deprivation', 'intensive care admission', 'ventilation', 'NEWS2', 'acuity', 'heart rate', 'blood pressure', 'temperature', 'medications', 'routes', 'ICD10 codes', 'OMOP', 'symptoms', 'severity', 'oxygenation', 'pulse oximetry', 'arterial blood gas', 'treatments', 'Mortality', 'DNR status', 'Outcomes'], 'abstract': 'CRP has been identified as a biomarker of importance in COVID. This OMOP dataset features highly granular health data from over 4500 patients with hospitalised COVID-19, including oxygen support and treatments given.'}",597524d4-038e-4fc2-aff9-1c9b87d3e16c,"{'pathway': 'Data is representative of the multi-ethnicity population within the West Midlands (42% non white). Data includes all patients admitted during this timeframe, with National data Opt Outs applied, and therefore is representative of admissions to secondary care. Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.', 'spatial': ['https://www.geonames.org/2634343/west-midlands.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'OTHER', 'typicalAgeRange': '18-105'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '5b456d15-cb68-4944-839c-c25a2986e572'},"{'description': 'C-reactive protein (CRP) is the classical acute-phase protein produced by the liver at rates regulated by pro-inflammatory cytokines, notably IL-6. Acute phase CRP production is non-specific but generally reflects the extent and severity of whatever infective, inflammatory, traumatic and neoplastic conditions have triggered it (Pepys, M. B. & Hirschfield, G. M. J. Clin. Invest. 111, 1805-1812 (2003). CRP binds specifically to dead or dying cells and then activates complement, leading to enhanced inflammation and exacerbation of pre-existing tissue damage (Griselli, M. et al. J. Exp. Med. 190, 1733-1739 (1999). Large amounts of CRP in the blood can also increase damage to tissues that are already injured.  CRP may thus contribute to disease severity and death in COVID-19.   \n\nCirculating CRP values in COVID-19 patients are closely associated with disease activity, severity and outcome (for example: L. Yan et al. (2020) https://doi.org/10.1038/s42256-020-0180-7). However, the published studies are of moderate size with only one or few CRP measurements per patient.  \n\nIn this OMOP dataset, we present longitudinal CRP measurements for a cohort of over 4500 hospitalised COVID-19 patients, from admission to discharge, including severity of disease, co-morbidities, treatments given, complications, ITU admissions and patient outcomes. \n\nPIONEER geography: The West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix. \n\nEHR. UHB is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.\n\nScope: All hospitalised patients admitted to Queen Elizabeth Hospital, Birmingham with positive SARS-Cov2 tests reported, transformed into an extended set of tables based on OMOP. The dataset includes highly granular patient demographics & co-morbidities taken from ICD-10 & SNOMED-CT codes. Serial, structured data pertaining to process of care including timings, admissions, escalation of care to ITU, discharge outcomes, physiology readings (heart rate, blood pressure, AVPU score and others), blood results (especially C-Reactive Protein (CRP) measurements) and drug prescribing and administration data.\n\nAvailable supplementary data: Matched controls; ambulance, synthetic data.\n\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.', 'isPartOf': 'NOT APPLICABLE'}",5b456d15-cb68-4944-839c-c25a2986e572,https://web.www.healthdatagateway.org/dataset/5b456d15-cb68-4944-839c-c25a2986e572,"{'formatAndStandards': {'format': ['SQL'], 'vocabularyEncodingScheme': ['SNOMED CT'], 'conformsTo': ['OMOP'], 'language': ['en']}, 'access': {'jurisdiction': ['GB-ENG'], 'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/'], 'deliveryLeadTime': '1-2 MONTHS', 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'dataProcessor': 'NOT APPLICABLE', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.'}, 'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'investigations': ['https://www.pioneerdatahub.co.uk/project-summaries/longitudinal-trends-of-circulating-c-reactive-protein-concentration-in-covid-19-monitoring-management-and-prognosis/'], 'resourceCreator': ['This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}}","{'temporal': {'accrualPeriodicity': 'QUARTERLY', 'startDate': '2019-12-23', 'distributionReleaseDate': '2021-12-09', 'endDate': '2021-07-29', 'timeLag': 'OTHER'}, 'origin': {'collectionSituation': ['IN-PATIENTS'], 'source': ['EPR'], 'purpose': ['CARE']}}",2021-12-20T13:03:34Z,"[{'observedNode': 'EVENTS', 'measuredValue': '4790', 'disambiguatingDescription': '4,790 distinct patients with CRP COVID visits between 23/12/2019 and 29/07/2021', 'observationDate': '09/12/2021', 'measuredProperty': 'Count'}]",1.0.0,{'derivation': ['Not Available']},2021-12-20T13:03:34Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 13, 'structuralMetadata.tableName': 13, 'structuralMetadata.tableDescription': 13, 'structuralMetadata.dataElementsCount': 164, 'structuralMetadata.columnName': 164, 'structuralMetadata.columnDescription': 164, 'structuralMetadata.dataType': 164, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '31bc221b-eabb-47b0-bb33-631c5461b190', 'description': 'Contains ventilation PICS and OMOP translations', 'name': 'CrpCovidVentilationTranslation', 'dataElementsCount': 4, 'dataElements': '976fde18-78ac-4794-9a76-3facf498956f, 6d49ede5-59aa-4e07-9ac5-d080b93dc753, 47050f49-fd0a-4634-b70d-d018cff7dbe2, 331a6504-07e8-4418-8b8d-41ca881c80d2'}, {'id': '04659479-2a30-4c48-955d-45994348cf5d', 'description': 'List and definitions of concepts used 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"{'title': 'North West London Accident and Emergency Data (NWL A&E)', 'contactPoint': 'researchers@registerfordiscover.org.uk', 'doiName': 'In Progress', 'publisher': {'name': 'DISCOVER NOW', 'contactPoint': 'researchers@registerfordiscover.org.uk', 'memberOf': 'HUB'}, 'keywords': ['A&E', 'Accident and Emergency', 'Discover-NOW', 'Integrated Care', 'Pathway', 'Real World data', 'Linked longitudinal'], 'abstract': 'The NWL A&E linked table is taken from the Secondary Users Service database which contains records of care administered in an A&E setting within NWL. Some of the data items included are dates, referral sources, diagnosis and treatments.'}",721db252-8069-433d-bb6d-4b44b243d364,"{'followup': '> 10 YEARS', 'typicalAgeRange': '0-150', 'pathway': 'This dataset contains all A&E attendances for NWL patients. Each patient will be identified using an unique patient key, this can be used to link to other Discover-NOW datasets that will help track the patient pathway', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'NHS Brent CCG; NHS Central London CCG; NHS Ealing CCG; NHS Hammersmith &Fulham CCG; NHS Harrow CCG; NHS Hillingdon CCG; NHS Hounslow CCG; NHS West London CCG'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'4.0.0': 'b9a2cd90-2724-4c7b-a26f-6f5b30a36a00', '5.0.0': '5b9b7964-615b-438a-b151-d2f884a24aee', '3.0.0': '0a524760-0efc-477e-8a3b-805e1a0f67ec', '2.0.0': 'eabb35af-76c8-44ac-a6d1-40a6b533f588', '1.0.0': '084d3291-d675-46e0-aa26-7a6b4c50a14d', '0.0.1': '41ec8b3c-d5bc-44c0-8c90-74c27981e0ca', 'latest': '5b9b7964-615b-438a-b151-d2f884a24aee'}","{'description': 'Initially this data is collected during a patient\'s time at hospital as part of the Commissioning Data Set (CDS). This is submitted to NHS Digital for processing and is returned to healthcare providers as the Secondary Uses Service (SUS) data set and includes information relating to payment for activity undertaken. It allows hospitals to be paid for the care they deliver. \nThis same data can also be processed and used for non-clinical purposes, such as research and planning health services. Because these uses are not to do with direct patient care, they are called \'secondary uses\'. This is the SUS data set.\nSUS data covers all NHS Clinical Commissioning Groups (CCGs) in England, including:\n•\tprivate patients treated in NHS hospitals\n•\tpatients resident outside of England\n•\tcare delivered by treatment centres (including those in the independent sector) funded by the NHS\nEach SUS record contains a wide range of information about an individual patient admitted to an NHS hospital, including:\n•\tclinical information about diagnoses and operations\n•\tpatient information, such as age group, gender and ethnicity\n•\tadministrative information, such as dates and methods of admission and discharge\n•\tgeographical information such as where patients are treated and the area where they live\nNHS Digital apply a strict statistical disclosure control in accordance with the NHS Digital protocol, to all published SUS data. This suppresses small numbers to stop people identifying themselves and others, to ensure that patient confidentiality is maintained.\n\nWho SUS is for\nSUS provides data for the purpose of healthcare analysis to the NHS, government and others including:\n\nThe Secondary Users Service (SUS) database is made up of many data items relating to A&E care\ndelivered by NHS hospitals in England. Many of these items form part of the national Commissioning Data\nSet (CDS), and are generated by the patient administration systems within each hospital.\n•\tnational bodies and regulators, such as the Department of Health, NHS England, Public Health England, NHS Improvement and the CQC\n•\tlocal Clinical Commissioning Groups (CCGs)\n•\tprovider organisations\n•\tgovernment departments\n•\tresearchers and commercial healthcare bodies\n•\tNational Institute for Clinical Excellence (NICE)\n•\tpatients, service users and carers\n•\tthe media\n\nUses of the statistics\nThe statistics are known to be used for:\n•\tnational policy making\n•\tbenchmarking performance against other hospital providers or CCGs  \n•\tacademic research\n•\tanalysing service usage and planning change\n•\tproviding advice to ministers and answering a wide range of parliamentary questions\n•\tnational and local press articles\n•\tinternational comparison\nMore information can be found at \nhttps://digital.nhs.uk/data-and-information/data-tools-and-services/data-services/hospital-episode-statistics\nhttps://digital.nhs.uk/data-and-information/publications/statistical/hospital-accident--emergency-activity""', 'isPartOf': 'SUS', 'associatedMedia': ['https://imperialcollegehealthpartners.com/discover-now/north-west-london-covid-19-data-repository/', 'https://www.nwlondonccgs.nhs.uk/professionals/whole-systems-integrated-care-wsic-dashboards-and-information-sharing/information-de-identified-users']}",5b9b7964-615b-438a-b151-d2f884a24aee,https://web.www.healthdatagateway.org/dataset/5b9b7964-615b-438a-b151-d2f884a24aee,"{'usage': {'resourceCreator': 'NHS Brent CCG\nDiscover-NOW', 'isReferencedBy': ['Bottleet al. BMC Medical Informatics and Decision Making (2020) 20:71 https://doi.org/10.1186/s12911-020-1082-7'], 'investigations': ['https://www.registerfordiscover.org.uk/researchers/discover-for-researchers-and-industry'], 'dataUseRequirements': ['COLLABORATION REQUIRED', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': 'NO RESTRICTION'}, 'access': {'deliveryLeadTime': '1-2 MONTHS', 'dataController': 'Joint data controller model across North West London', 'accessService': ""Researchers will have access to a VDI environment with a specific username and password. The researchers will get access to the datasets that is present in the hub's catalogue and would be able to carry out their research within the safe haven. There are restrictions applied which prevents the researchers from taking data out of the safe haven, once the research/analysis is completed the admin team will need to be contacted for taking the analysis off the safe haven"", 'accessRights': ['https://imperialcollegehealthpartners.com/discover-now/nwl-covid-data-access/'], 'jurisdiction': 'GB', 'dataProcessor': 'NHS BRENT CCG', 'accessRequestCost': 'In Progress'}, 'formatAndStandards': {'language': 'en', 'format': ['Excel', 'SQL', 'Tableau', 'R'], 'conformsTo': 'LOCAL', 'vocabularyEncodingScheme': ['NHS NATIONAL CODES', 'ODS', 'ICD10']}}","{'temporal': {'distributionReleaseDate': '2019-12-18', 'accrualPeriodicity': 'MONTHLY', 'startDate': '2015-04-01', 'timeLag': '1-2 MONTHS'}, 'origin': {'source': 'EPR', 'purpose': ['CARE', 'ADMINISTRATIVE'], 'collectionSituation': 'ACCIDENT AND EMERGENCY'}}",2020-01-10T17:02:04Z,"[{'observedNode': 'Persons', 'measuredValue': ' 1,643,175 ', 'disambiguatingDescription': '', 'observationDate': 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"{'title': 'Cancer registration data for CPRD GOLD', 'abstract': 'CPRD GOLD linked National Cancer Registration and Analysis Service (NCRAS) cancer registration data contain a record for each notified, registrable tumour, diagnosed or treated in England.', 'publisher': {'name': 'CPRD', 'identifier': '607db9c2e1f9d3704d570cee', 'memberOf': 'ALLIANCE'}, 'doiName': 'https://doi.org/10.48329/541y-nh70', 'keywords': ['Cancer Registration', 'NCRAS'], 'contactPoint': 'enquiries@cprd.com'}",e2f5d637-94b3-447b-b7eb-ea957ce449b6,"{'typicalAgeRange': '0-115', 'spatial': ['https://www.geonames.org/6269131/england.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': '1 - 10 YEARS', 'pathway': 'Cancer registration data are collected from a range of health care provider systems and other services.'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '5c009617-2ca6-48cd-bf03-509a83d00294', '6.0.0': '5c2cd37f-a930-4e92-85a4-76394838ce90', '4.0.0': 'a0dad23c-c02d-4347-92ef-0019fa59eb3e', '3.0.0': 'cc1a01fb-853d-4f00-8f74-53c592240687', '5.0.0': '88155e0d-a88f-4a72-ba3f-45d4e352439a', '1.0.0': 'a391df0b-a3fa-44a5-915e-f6c834e37c36', '0.0.1': '3d48a22f-bef8-43a2-acd8-a0ae9321bb59', 'latest': '5c2cd37f-a930-4e92-85a4-76394838ce90'}","{'description': 'CPRD GOLD linked National Cancer Registration and Analysis Service (NCRAS) cancer registration data contain records for each registrable tumour diagnosed or treated in England, of which the NCRAS has been notified.', 'associatedMedia': ['https://www.cprd.com/linked-data'], 'isPartOf': 'CPRD GOLD'}",5c2cd37f-a930-4e92-85a4-76394838ce90,https://web.www.healthdatagateway.org/dataset/5c2cd37f-a930-4e92-85a4-76394838ce90,"{'formatAndStandards': {'vocabularyEncodingScheme': ['ICD10', 'ICDO3'], 'format': ['Tab delimited text'], 'language': ['en'], 'conformsTo': ['NHS DATA DICTIONARY']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE', 'NO LINKAGE', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'investigations': ['https://www.cprd.com/protocol-list'], 'resourceCreator': ['Public Health England (PHE) via the National Cancer Registration and Analysis Service (NCRAS)'], 'dataUseRequirements': ['GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'isReferencedBy': ['Henson KE,Elliss-Brookes L,Coupland VH,Payne E,Vernon S,Rous B,Rashbass J. 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"{'title': 'Education Daily Attendance Dataset (EDAD)', 'publisher': {'name': 'SAIL', 'identifier': '5f3f98068af2ef61552e1d75', 'memberOf': 'ALLIANCE'}, 'abstract': 'This dataset provides information about educational activity within Wales.', 'keywords': ['Education', ' SAIL', 'EDAD', 'core-res'], 'contactPoint': 'SAILDatabank@swansea.ac.uk'}",17056e83-ee5a-4fe7-86e1-f09563256be1,"{'followup': '0 - 6 MONTHS', 'typicalAgeRange': '0-20', 'pathway': 'Education', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2634895/wales.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'4.0.0': 'bee18a99-5478-4857-8ce0-3baebb75174e', '6.0.0': '5cd5a6a1-f7a2-4d83-a3e3-423495c3a281', '3.0.0': 'e5b39c1e-b47d-4847-a3f0-cc993f9f43eb', '5.0.0': 'af829238-feb6-4fc4-933a-b06812a6c1b8', 'latest': '5cd5a6a1-f7a2-4d83-a3e3-423495c3a281'}","{'description': 'This dataset provides information about educational activity within Wales..', 'associatedMedia': ['https://saildatabank.com/about-us/overview/'], 'isPartOf': 'Not Applicable'}",5cd5a6a1-f7a2-4d83-a3e3-423495c3a281,https://web.www.healthdatagateway.org/dataset/5cd5a6a1-f7a2-4d83-a3e3-423495c3a281,"{'access': {'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'dataController': 'Welsh Government', 'jurisdiction': ['GB'], 'dataProcessor': 'SAIL Databank', 'deliveryLeadTime': '2-6 MONTHS', 'accessRights': ['https://saildatabank.com/application-process/']}, 'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['Welsh Government'], 'isReferencedBy': ['Littlecott HJ, Moore GF, Moore L, Lyons RA, Murphy S. Association between breakfast consumption and educational outcomes in 9-11-year-old children. Public Health Nutr. 2016 Jun;19(9):1575-82. doi: 10.1017/S1368980015002669. Epub 2015 Sep 28. Erratum in: Public Health Nutr. 2016 Jun;19(9):1583. PMID: 26411331; PMCID: PMC4873891. '], 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/']}, 'formatAndStandards': {'language': ['en'], 'format': ['SQL database table'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL']}}","{'temporal': {'startDate': '2020-09-01', 'endDate': '2021-04-30', 'timeLag': '2-6 MONTHS', 'accrualPeriodicity': 'MONTHLY', 'distributionReleaseDate': '2021-02-23'}, 'origin': {'collectionSituation': ['OTHER'], 'purpose': ['ADMINISTRATIVE'], 'source': ['OTHER']}}",2021-09-17T16:24:24Z,"[{'observedNode': 'EVENTS', 'measuredValue': '3000000', 'disambiguatingDescription': 'Approx 70-80% coverage of Welsh population through GP registrations.', 'observationDate': '01/09/2021', 'measuredProperty': 'Count'}]",6.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Yes. To any SAIL dataset & reference data.'], 'tools': ['https://conceptlibrary.saildatabank.com/']}",2022-02-03T14:39:26Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 11, 'structuralMetadata.columnName': 11, 'structuralMetadata.columnDescription': 11, 'structuralMetadata.dataType': 11, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'dd0c62e7-9d2b-4219-9cba-8f1464eb2859', 'description': 'Education Daily Activity Dataset table', 'name': 'EDAD', 'dataElementsCount': 11, 'dataElements': '1511f6c7-13f0-4f83-bd27-74f3a377abe2, 2d8cd92f-1ae4-44c0-99ea-92043961ad9f, da455cfe-932f-4e3b-9312-3518f8bf7331, 172746cd-67f8-4a14-bd5d-eafbc100d6a6, c0847a8f-ee9a-47ad-ad11-a3521b4ab67e, 6e55f37d-1520-4d7d-a95d-1bb93e08e6fd, d39fc5a3-b4a9-41b7-bd84-1f5effb4bdf1, 8c876085-b57c-4b75-a467-e83caa92c7eb, 7d31c736-bb7c-4a15-9e88-457625d09fb8, ccaac3e0-a8ca-4eb3-ae01-9410d2b9cc9e, dba3bb1f-dc93-4702-bfd5-684f0a4927c8'}]}"
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Developing a data quality improvement programme with providers.\n\nAll open (incomplete) and planned diagnostic waits for modalities in scope DM01 before 23:59 on Sunday of the reporting period.', 'associatedMedia': ['https://imperialcollegehealthpartners.com/discover-now/north-west-london-covid-19-data-repository/', 'https://www.nwlondonccgs.nhs.uk/professionals/whole-systems-integrated-care-wsic-dashboards-and-information-sharing/information-de-identified-users'], 'isPartOf': 'National Waiting List'}",5ce6905a-8b54-4d6c-9da6-e2d57ce45419,https://web.www.healthdatagateway.org/dataset/5ce6905a-8b54-4d6c-9da6-e2d57ce45419,"{'formatAndStandards': {'format': ['Excel', 'SQL', 'Tableau', 'R'], 'vocabularyEncodingScheme': ['NHS NATIONAL CODES'], 'language': ['en'], 'conformsTo': ['NHS DATA DICTIONARY', 'LOCAL']}, 'access': {'accessRights': ['https://imperialcollegehealthpartners.com/discover-now/nwl-covid-data-access/'], 'dataProcessor': 'North West London CCG\nNorth East London Commissioning Support Unit', 'dataController': 'Joint data controller model across North West London', 'accessRequestCost': ['In Progress'], 'accessService': ""Researchers will have access to a VDI environment with a specific username and password. The researchers will get access to the datasets that is present in the hub's catalogue and would be able to carry out their research within the safe haven. There are restrictions applied which prevents the researchers from taking data out of the safe haven, once the research/analysis is completed the admin team will need to be contacted for taking the analysis off the safe haven"", 'jurisdiction': ['GB'], 'deliveryLeadTime': '1-2 MONTHS'}, 'usage': {'dataUseLimitation': ['NO RESTRICTION'], 'resourceCreator': ['NHS NWL CCG', 'Discover-NOW'], 'dataUseRequirements': ['COLLABORATION REQUIRED', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION', 'PUBLICATION REQUIRED'], 'isReferencedBy': ['Bottleet al. BMC Medical Informatics and Decision Making (2020) 20:71 https://doi.org/10.1186/s12911-020-1082-7'], 'investigations': ['https://www.registerfordiscover.org.uk/researchers/discover-for-researchers-and-industry']}}","{'origin': {'collectionSituation': ['OUTPATIENTS', 'IN-PATIENTS'], 'source': ['EPR', 'OTHER INFORMATION SYSTEM'], 'purpose': ['CARE', 'ADMINISTRATIVE', 'STATUTORY']}, 'temporal': {'distributionReleaseDate': '2021-04-01', 'endDate': '2022-03-31', 'timeLag': '1-2 MONTHS', 'accrualPeriodicity': 'WEEKLY', 'startDate': '2021-04-01'}}",2021-09-22T10:54:47Z,"[{'observedNode': 'PERSONS', 'measuredValue': '29497', 'disambiguatingDescription': 'NHS National Codes', 'observationDate': '15/09/2021', 'measuredProperty': 'Count'}]",1.0.0,"{'qualifiedRelation': ['Each patient will be identified by an unique patient key that can be used to link to all other datasets available within Discover-NOW hub'], 'derivation': ['Long Term Conditions', 'Electronic Frailty Index', 'Q-Admissions', 'Patient Segments', 'Risk Segments'], 'tools': ['https://nww.analytics.southlondoncsu.nhs.uk/#/site/ICSAnalytics/views/WaitingListPTL/RTTPopulationHealth?:iid=1']}",2021-09-22T10:54:47Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 23, 'structuralMetadata.columnName': 23, 'structuralMetadata.columnDescription': 23, 'structuralMetadata.dataType': 23, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '3d03e0c2-c4af-421e-9b63-94f59bfebc93', 'description': 'Restoration of elective activity (Acute) - All open (incomplete) and planned diagnostic waits for modalities in scope DM01 before 23:59 on Sunday of the reporting period.', 'name': 'National_WL_Diagnostics', 'dataElementsCount': 23, 'dataElements': '31434004-1ea5-4d38-9584-937df68de043, 24d24122-0b25-4ec4-95d4-efbd92f36552, 1c36b4f2-a401-4721-9457-16dc38e5bdda, aa0fa4db-a79b-4a81-a7e5-7dd075cec433, 5a97dcd4-d2c8-4662-a9d8-744856d6d894, 4d639b87-7e0c-4f5e-aecb-64154732902a, 204a4185-8226-440e-accd-911f9e19a994, 1fc8cbc6-d61d-43b7-98ce-a7c516912d6a, 7eca7644-38c4-440d-8f5d-0b042a0255b7, fe4e6bfd-c996-49d0-b073-44d805b12781, b4a0c6e0-7d2b-48a3-9b73-b057a193e557, 3476910b-e7e9-4492-baf8-75f0daf528f2, 10e71c2d-d45d-4be5-8aea-48d5e7cb80e1, 25c5ff1c-c1b4-46cb-8c01-c66e7bf39b3a, 19ee265c-ef37-4b10-a01c-68abf3dacd53, c3394f20-7de0-40f2-a862-519c26240242, 0fe85b66-a236-4ae0-bb8f-19178a62b67f, 7c548cef-7b7d-4fea-a733-0e0592f9b4df, f26c97d6-454a-4f3c-ae5d-a0a23d400fe4, c9932b4f-49b8-4ce0-9717-c2f36cd89c04, 309a63dd-5abd-4045-85dc-17d222d8e50f, 1640234a-3a16-495a-9792-63eeca91ecea, a62d12f5-c601-499e-b5b2-81d734525655'}]}"
"{'title': 'Renal Register – ISD National dataset', 'keywords': ['Scotland', 'Renal', 'HIC', 'ISD'], 'publisher': {'identifier': '607db9c4e1f9d3704d570d1f', 'memberOf': 'ALLIANCE', 'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE'}, 'abstract': ""Extract from ISD's Renal register for Tayside and Fife."", 'contactPoint': 'hicsupport@dundee.ac.uk'}",32edd77d-533c-423f-b045-937507f8505d,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2636157/tayside-region.html'], 'typicalAgeRange': '0-150', 'followup': 'UNKNOWN'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '3d42b7e1-89b0-4bef-9e42-18edc328f28f', '3.0.0': '5cf49b5c-bb8d-4ab2-90ce-74d801f7c090', '0.0.1': '00589ec6-f42a-4f6e-af68-665cf7ec8dde', '2.0.0': '2ab363bf-3013-475b-8254-bd7740f70edb', 'latest': '5cf49b5c-bb8d-4ab2-90ce-74d801f7c090'}","{'description': ""Extract from ISD's Renal register for Tayside and Fife. Patients included are High Dependency, Peritoneal Dependent and transplant. Patients excluded would be any others. Eg Low Clearance, Renal Referrals - basically any patients who are not actually dialysing or transplanted."", 'isPartOf': 'University of Dundee Health Informatics Centre'}",5cf49b5c-bb8d-4ab2-90ce-74d801f7c090,https://web.www.healthdatagateway.org/dataset/5cf49b5c-bb8d-4ab2-90ce-74d801f7c090,"{'formatAndStandards': {'format': ['Database'], 'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'conformsTo': ['LOCAL']}, 'access': {'dataController': 'University of Dundee', 'accessRights': ['https://www.dundee.ac.uk/hic/governanceapprovalsupport/'], 'accessService': 'HIC has implemented a remote-access ""Safe Haven"" environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details are available via the following link:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/', 'jurisdiction': ['GB-SCT'], 'deliveryLeadTime': 'OTHER'}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['DISCLOSURE CONTROL']}}","{'origin': {'collectionSituation': ['PRIMARY CARE'], 'source': ['EPR', 'ELECTRONIC SURVEY'], 'purpose': ['DISEASE REGISTRY']}, 'temporal': {'accrualPeriodicity': 'IRREGULAR', 'startDate': '2002-01-01', 'distributionReleaseDate': '2021-09-09', 'endDate': '2019-09-04', 'timeLag': 'NOT APPLICABLE'}}",2020-06-03T12:57:21Z,"[{'observedNode': 'PERSONS', 'measuredValue': '2873', 'disambiguatingDescription': '2800 patients in the dataset', 'observationDate': '09/09/2021', 'measuredProperty': 'COUNT'}]",3.0.0,,2021-09-14T13:07:35Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 19, 'structuralMetadata.columnName': 19, 'structuralMetadata.columnDescription': 19, 'structuralMetadata.dataType': 19, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'fa664953-0c7e-4c49-9b91-44257dc1201c', 'description': ""Extract from ISD's Renal register for Tayside and Fife.  Patients included are High Dependancy, Peritonatal Dependant and transplant.   Patients excluded would be any others Eg Low Clearance, Renal Referrals - basically any patients who aren't actually dialysing or transplanted."", 'name': 'Renal Register - ISD', 'dataElementsCount': 19, 'dataElements': 'd4a9223c-3425-4876-a05f-538abeaae249, 7e273064-1417-4fc4-86f8-f1762e33e202, 97c0c5d2-223a-45af-af41-68ddf299f41e, e1497601-aa11-4e3c-bb80-7e4714706252, b503216c-afa3-428c-9e78-696dca336402, 9b6ba307-5408-423e-869b-bf80499e2c08, 5119abf2-7585-4391-bb1b-2b145626ba50, db205556-a020-413d-a1f8-37d5a69a2efe, 3f636e16-1c84-4a89-be48-4bf85b702f99, 2b0695e0-b9ad-4d4c-a746-06b75ae9271a, cd64cf00-eda7-4aff-8677-08b620d94838, a928c1f9-b3d5-4bfd-8a89-2984e644fbcb, 9d286b3e-c415-4abc-857c-06bb11d7986b, 4b561281-c84c-40b7-8df5-e731696fede9, b576641a-8efa-4890-a475-602be0fab122, 5162b8a5-c6a9-48fd-a59b-8f878016c8ee, a5ee822f-caf3-4d0f-9ccd-6daa21f74f18, 6be2b1b1-68e5-48b2-8090-d8c97990ab7d, 7084224f-5203-44f6-9c6a-9a0f1461d209'}]}"
"{'title': 'Moorfields Ophthalmic Prescription 004', 'contactPoint': 'enquiries@insight.hdrhub.org', 'publisher': {'name': 'INSIGHT', 'identifier': '5f8437a3b7dec2a83e8cceba', 'memberOf': 'HUB'}, 'abstract': 'The Ophthalmic Prescription Dataset at Moorfields Eye Hospital NHS Foundation Trust is a longitudinal dataset consisting routinely collected patient data from 2016 to the present. This dataset has in excess of 1.8M prescriptions.', 'keywords': ['AMD', 'Prescriptions', 'drugs', 'Glaucoma', 'Diabetes', 'diabetes', 'Diabetes Mellitus Type 1', 'Diabetes mellitus type 2', 'Cataract', 'Wet AMD', 'Dry AMD', 'Age Related Macular Degeneration', 'medication', 'pharmaceuticals', 'dose', 'Drops', 'Eye drop', 'Eye condition', 'Surgery', 'Visual Acuity', 'Vision', 'dry eye', 'steroids', 'antibiotics']}",2ec8d8e3-35bc-4304-83e8-3afed4438cd5,"{'physicalSampleAvailability': ['OTHER'], 'spatial': ['https://www.geonames.org/2648147/great-britain.html'], 'followup': '1 - 10 YEARS', 'typicalAgeRange': '0-103', 'pathway': 'The dataset is representative of the entire medical specialty of ophthalmology, encompassing the full range of subspecialties within this field.'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '1dfa9a06-55f3-4ed6-8b21-57b96b81366e', '2.0.0': '5d577e70-2b9b-4286-81f3-824978dc3069', 'latest': '5d577e70-2b9b-4286-81f3-824978dc3069'}","{'description': 'The Moorfields Ophthalmic Prescription Dataset is a longitudinal dataset consisting of routinely collected prescription data from patients who have received and are receiving treatment at Moorfields Eye Hospital NHS Foundation Trust, from 2016 to the present. \n\nThis dataset encompasses all patients at Moorfields Eye Hospital NHS Foundation Trust - a leading provider of eye health services in the UK and a world-class centre of excellence for ophthalmic research and education', 'associatedMedia': ['https://www.insight.hdrhub.org/about-us'], 'isPartOf': 'Not Applicable'}",5d577e70-2b9b-4286-81f3-824978dc3069,https://web.www.healthdatagateway.org/dataset/5d577e70-2b9b-4286-81f3-824978dc3069,"{'access': {'accessRights': ['https://www.insight.hdrhub.org/researcher-area'], 'dataProcessor': 'Not Applicable', 'accessRequestCost': ['https://www.insight.hdrhub.org/contact'], 'deliveryLeadTime': '2-6 MONTHS', 'dataController': 'Moorfields Eye Hospital NHS Foundation Trust', 'jurisdiction': ['GB-GBN'], 'accessService': 'INSIGHT is developing its data access environment for researchers. \nINSIGHT releases anonymised data, under strict data licence arrangements, to external secure environments, subject to appropriate due diligence and contracting.'}, 'formatAndStandards': {'format': ['CSV'], 'conformsTo': ['OTHER', 'NHS DATA DICTIONARY'], 'language': ['en'], 'vocabularyEncodingScheme': ['SNOMED CT', 'DM+D', 'NHS NATIONAL CODES']}, 'usage': {'resourceCreator': ['https://www.nature.com/articles/s41591-020-0867-7'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}}","{'temporal': {'accrualPeriodicity': 'CONTINUOUS', 'timeLag': '1-2 WEEKS', 'startDate': '2016-01-01'}, 'origin': {'source': ['EPR'], 'purpose': ['STUDY'], 'collectionSituation': ['CLINIC', 'ACCIDENT AND EMERGENCY', 'OUTPATIENTS', 'IN-PATIENTS']}}",2021-12-02T09:42:54Z,"[{'observedNode': 'PERSONS', 'measuredValue': '226958', 'disambiguatingDescription': '226,958 Patients with 1,862,897 Ophthalmic Prescriptions', 'observationDate': '01/11/2021', 'measuredProperty': 'Patients'}]",2.0.0,"{'derivation': ['Not Applicable'], 'qualifiedRelation': ['None']}",2021-12-14T12:19:07Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 4, 'structuralMetadata.tableName': 4, 'structuralMetadata.tableDescription': 4, 'structuralMetadata.dataElementsCount': 33, 'structuralMetadata.columnName': 33, 'structuralMetadata.columnDescription': 33, 'structuralMetadata.dataType': 33, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '8f5daa8b-f26a-46a8-aa93-dc88d4c4908e', 'description': 'This table contains the ophthalmic prescription data', 'name': 'prescription', 'dataElementsCount': 13, 'dataElements': '7c7d019b-f90b-431f-bcda-c4a9ffe608d0, 99b75f7f-4aa9-4e4b-b0ee-1599a2ae9242, afc335c9-ff35-4c39-8bd2-8e2ced025665, f9675bc1-8659-45c0-ac85-c1d9c5148b81, 5060abe2-48a2-4f54-8bed-14deb51af6f1, c229b0bc-5d57-46da-81be-71a2b1961b04, f434b947-c553-479c-99fb-770badaaf8d6, 430bce6d-edd3-49a0-a4e6-7a7d3966dcfe, dfb2aef5-b01b-49cb-85ea-9731e35d0a47, 1c250152-627d-475f-813a-f80423ba9f74, 724c2306-f861-4594-8df6-a3ab56d1e6fb, 6583825f-f967-4fe5-b8de-21e9f4c656aa, 574548b4-a6d8-45ef-8ad6-50c797124917'}, {'id': 'd868b5f2-e366-43c4-a83b-81306db88b24', 'description': 'This table contains the demographic data', 'name': 'demographic', 'dataElementsCount': 5, 'dataElements': '8ac66ec6-6b6d-47f7-84f6-dfa70baf031a, 53c1d998-babd-4da4-b874-3a0761eea96d, df8217d6-a18b-4568-9c8e-3b0a4287e82b, 01cb8611-ba6a-4b49-ac92-a3c7759d0ec9, 42a09fac-b089-433b-8453-6b83f1441afa'}, {'id': 'f9a9dc80-c721-433f-a1ad-00e1415ae932', 'description': 'This table contains the social history data', 'name': 'social_history', 'dataElementsCount': 8, 'dataElements': '49e9d46e-2554-4dbf-a9c0-de5166b45d38, ee526277-2b9c-4ae0-a7ea-e856271f0e2a, 7403e3bf-ea26-4a5e-bf22-8f97a7b66c86, 8f7b2ea4-e441-43b9-a39e-f4045e9a3c04, ddbf24b0-3369-4dd8-975b-3f8fdf771573, 9da9a3c2-3eba-469e-84d5-8fb19870108c, e15af363-63fb-41ae-b8ff-2932c85dcdfd, 686addb2-25a5-4693-8545-b50069552271'}, {'id': '751eb865-fdac-44a0-b2f6-ffe2dc08c1f3', 'description': 'This table contains the visual acuity data', 'name': 'visual_acuity', 'dataElementsCount': 7, 'dataElements': 'f2f46bed-6fd1-45e2-9561-a5291246e745, 2e0d81d8-0f46-40a3-9f04-ad7bb5c93db7, c330216d-bc4e-4b8b-8205-84c1466f65d1, f922aa7a-d0eb-4945-8117-0816b89b4c74, aa326efa-3e51-4e27-9f76-9d053cca71b1, 979a16f3-1307-420c-bf18-301a29f5303c, b4b534bd-8de9-4d86-8e06-5780ef92c01c'}]}"
"{'title': 'NIHR BioResource: Case report form', 'publisher': {'identifier': '607db9c4e1f9d3704d570d3f', 'memberOf': 'ALLIANCE', 'name': 'NIHR BIORESOURCE'}, 'abstract': 'Each participant recruited on the basis of their disease (rare or common) has a disease-specific CRF completed by their clinical care team. These are non-exhaustive-we have the chance to ask for more information-but form the basis of analysis and recall.', 'contactPoint': 'nbr@bioresource.nihr.ac.uk', 'keywords': ['recall', 'clinical', 'CRF', 'feasibility', 'cohort discovery']}",4b8675d3-dd87-4cca-804c-aaf0e4ff8140,"{'typicalAgeRange': '18-85', 'spatial': ['https://www.geonames.org/2635167/united-kingdom.html'], 'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM'], 'followup': '1 - 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'a182b27f-5000-40f0-8afd-f2f193a31b7d', '1.0.0': '5de9d313-fb9f-4dbf-a959-1329062eb1ef', 'latest': '5de9d313-fb9f-4dbf-a959-1329062eb1ef'}","{'description': 'The NIHR Bioresource consists of several groups of participants: ~70k from the general population and blood donors (COMPARE, INTERVAL and STRIDES studies); ~19k with one of ~50 rare diseases (RD) including a ~5k pilot for GEL; ~30k with Inflammatory Bowel Disease (IBD) which include the members of Gut Reaction, the Health Data Research Hub for IBD; and ~20k with Anxiety or depression (GLAD study). It intends to extend recruitment in all areas, and to other rare and common disease groups, with a target of ~300k by 2022.  The NIHR BioResource acquires a case report form at recruitment for each participant recruited on the basis of their disease. Typically variables include questions that may be used to partition or group patients by their disease course and severity, and include disease history and medication use. This is used to pre-screen or match participants when inviting them to take part in experimental medicine studies. De-identified versions of this data is available to researchers investigating the feasibility of future studies.', 'isPartOf': 'Not Applicable'}",5de9d313-fb9f-4dbf-a959-1329062eb1ef,https://web.www.healthdatagateway.org/dataset/5de9d313-fb9f-4dbf-a959-1329062eb1ef,"{'formatAndStandards': {'vocabularyEncodingScheme': ['SNOMED CT', 'HPO'], 'conformsTo': ['I2B2'], 'format': ['text/csv'], 'language': ['en']}, 'usage': {'dataUseLimitation': ['RESEARCH USE ONLY'], 'resourceCreator': ['NIHR BioResource. Acknowledgement text: ""We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.""'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'isReferencedBy': ['Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/']}, 'access': {'jurisdiction': ['GB-GBN'], 'accessRequestCost': ['https://bioresource.nihr.ac.uk/using-our-bioresource/industry-researchers/industry-bioresource-usage-costs/'], 'accessRights': ['https://bioresource.nihr.ac.uk/using-our-bioresource'], 'accessService': 'Some de-identified data may be released to researchers in a platform-independent filetype (e.g. CSV). However, access to any data acquired via NHS Digital is subject to strict restrictions governing where data may be accessed and from which locale - access is currently via an experimental safe haven built in Microsoft Azure.', 'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)', 'deliveryLeadTime': '2-6 MONTHS', 'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)'}}","{'origin': {'purpose': ['STUDY'], 'source': ['PAPER BASED'], 'collectionSituation': ['CLINIC']}, 'temporal': {'accrualPeriodicity': 'QUARTERLY', 'distributionReleaseDate': '2021-03-31', 'startDate': '2002-05-20', 'timeLag': '1-2 MONTHS'}}",2021-02-21T17:33:02Z,"[{'observedNode': 'PERSONS', 'measuredValue': '57559', 'disambiguatingDescription': 'Participants who have clinical data (disease and/or medication data collected at recruitment by a healthcare professional); this number excludes any healthy participants who have no current disease or medications', 'observationDate': '26/11/2020', 'measuredProperty': 'COUNT'}]",1.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['ALL', 'COVID-19 SARI-Watch (formerly CHESS)', 'Civil Registration - Deaths', 'Covid-19 Second Generation Surveillance System', 'Emergency Care Data Set (ECDS)', 'Hospital Episode Statistics Accident and Emergency', 'Hospital Episode Statistics Admitted Patient Care', 'Hospital Episode Statistics Critical Care', 'Hospital Episode Statistics Outpatients', 'Intensive Care National Audit & Research Centre (ICNARC) Case Mix Programme (https://www.icnarc.org/Our-Audit/Audits/Cmp/About)']}",2021-11-25T11:59:19Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 7, 'structuralMetadata.tableName': 7, 'structuralMetadata.tableDescription': 7, 'structuralMetadata.dataElementsCount': 125, 'structuralMetadata.columnName': 125, 'structuralMetadata.columnDescription': 125, 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Readmissions for reasons other than revision surgery are not collected.', 'followup': 'UNKNOWN', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/3042225/isle-of-man.html,', 'https://www.geonames.org/3042363/guernsey.html', 'https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html', 'https://www.geonames.org/2641364/northern-ireland.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'b1d06d94-187a-49ed-8641-f7724c96850e', '4.0.0': '5e044863-b792-4256-aa45-3235a6546e39', '2.0.0': '7038a67d-34ca-4754-a50f-41aa2849db69', '1.0.0': '04dc45da-97e4-484f-a7d0-174d12c74787', '3.0.0': 'a0c4719e-871b-450a-b977-689df35131dd', 'latest': '5e044863-b792-4256-aa45-3235a6546e39'}","{'description': ""The National Joint Registry for England, Wales, Northern Ireland and the Isle of Man is a database containing details of all primary and revision total hip, knee, shoulder, elbow and ankle replacement procedures carried out in NHS and independent sector hospitals in England, Wales, Northern Ireland and the Isle of Man.  Primary hip replacement has its own specific dataset for procedures.\nInitially this data is collected during a patient's time at hospital as part of bespoke data collection to support the NJR . This is submitted to NEC Software Solutions (contracted to the NJR) for processing and is used to monitor the quality and safety of patient care and outcomes. \nThis same data can also be processed and used for non-clinical purposes, such as research and planning health services. Because these uses are not to do with direct patient care, they are called 'secondary uses'. This is the NJR research ready data set.\nNJR data covers all procedures carried out in NHS and independent sector hospitals  in England, Wales (from 2003), Northern Ireland )from 2013), the Isle of Man (from 2015) and the States of Guernsey (from 2019).\nEach NJR record contains a wide range of information about an individual patient treated at an NHS or independent sector hospital, including:\n• clinical information about surgical indications and operations\n• patient information, such as age group and gender\n• component information, such as the brand and size of prosthesis used\n• outcomes, such as whether a revision procedure has been undertaken\nNJR apply a strict statistical disclosure control in accordance with the NHS Digital protocol, to all published NJR data. This suppresses small numbers to stop people identifying themselves and others, to ensure that patient confidentiality is maintained.\nWho NJR data is for\nNJR can provide data for the purpose of healthcare analysis to the NHS, government and others including:\n• national bodies and regulators, such as the Department of Health, NHS England, Public Health England, NHS Improvement and the CQC\n• local Clinical Commissioning Groups (CCGs)\n• provider organisations\n• government departments\n• researchers and commercial healthcare bodies\n• National Institute for Clinical Excellence (NICE)\n• patients, service users and carers\n• the media\nUses of the statistics\nThe statistics are known to be used for:\n• national policy making\n• benchmarking performance against other hospital providers or CCGs  \n• academic research\n• analysing service usage and planning change\n• providing advice to ministers and answering a wide range of parliamentary questions\n• national and local press articles\n• international comparison\nMore information can be found at http://www.njrcentre.org.uk/njrcentre/"", 'isPartOf': 'NJR', 'associatedMedia': ['https://www.njrcentre.org.uk/njrcentre/Research/Research-requests']}",5e044863-b792-4256-aa45-3235a6546e39,https://web.www.healthdatagateway.org/dataset/5e044863-b792-4256-aa45-3235a6546e39,"{'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'investigations': ['https://www.njrcentre.org.uk/njrcentre/Research/Research-Portfolio'], 'resourceCreator': ['""the study title should be followed by the suffix: ‘An analysis from the National Joint Registry\'. ""'], 'dataUseLimitation': ['NO RESTRICTION']}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL', 'SNOMED RT'], 'format': ['Tab delimited file made available via NJR Data Access Portal']}, 'access': {'dataProcessor': 'NEC Software Solutions', 'accessRights': ['http://www.njrcentre.org.uk/njrcentre/Research/Research-requests', 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'deliveryLeadTime': 'VARIABLE', 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England', 'accessRequestCost': ['http://www.njrcentre.org.uk/njrcentre/Portals/0/NJR%20cost%20recovery%20policy%20April%202019%20v1.0.pdf?ver=2019-04-04-105011-240', 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'jurisdiction': ['GB-EAW']}}","{'origin': {'purpose': ['AUDIT', 'DISEASE REGISTRY', 'OTHER'], 'collectionSituation': ['IN-PATIENTS', 'PRIVATE'], 'source': ['EPR', 'PAPER BASED', 'ELECTRONIC SURVEY']}, 'temporal': {'timeLag': 'VARIABLE', 'accrualPeriodicity': 'CONTINUOUS', 'startDate': '2003-04-01'}}",2020-01-13T14:55:21Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '1191253', 'disambiguatingDescription': 'number of primary hip replacements during 2019 in the dataset\n', 'observationDate': '01/09/2020', 'measuredProperty': 'Count'}]",4.0.0,"{'qualifiedRelation': [' HES - available subject to additional permissions', 'National PROMS - available subject to additional permissions', 'Civil Registration Data - available subject to additional permissions'], 'derivation': ['Not available']}",2022-01-04T15:56:25Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 159, 'structuralMetadata.columnName': 159, 'structuralMetadata.columnDescription': 159, 'structuralMetadata.dataType': 159, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 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"{'title': 'North West London Mental Health Data (NWL MH)', 'contactPoint': 'researchers@registerfordiscover.org.uk', 'abstract': 'The NWL MH linked table holds activity data from Mental health providers and contains the type and location of care received, episodes of care, diagnoses and questionnaire scores for individuals who have accessed adult mental health services within NWL.', 'publisher': {'memberOf': 'HUB', 'contactPoint': 'researchers@registerfordiscover.org.uk', 'name': 'DISCOVER NOW'}, 'doiName': 'In Progress', 'keywords': ['MH', 'Mental Health', 'Discover-NOW', 'Children and Young People Improving Access to Psychological Therapies', 'CYP-IAPT', 'MHSDS', 'Real World data', 'Linked longitudinal', 'Integrated Care']}",2d3ec99a-a087-4355-8539-5a22cef58910,"{'followup': '> 10 YEARS', 'spatial': 'NHS Brent CCG; NHS Central London CCG; NHS Ealing CCG; NHS Hammersmith &Fulham CCG; NHS Harrow CCG; NHS Hillingdon CCG; NHS Hounslow CCG; NHS West London CCG', 'pathway': 'The NWL MH linked table holds activity data from Mental health providers and contains the type and location of care received, episodes of care, diagnoses and questionnaire scores for individuals who have accessed adult mental health services within NWL.', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '0c41aafd-511b-4a4e-bb7f-9adc77cb2d38', '5.0.0': '5e19a471-64e3-4aa4-ac56-6901d5e39e28', '4.0.0': '07169a48-2e59-4ef6-ad77-f272d60b5a83', '3.0.0': '21d58202-15a2-4ec8-9f36-3080de3905a5', '1.0.0': 'd05ed484-4461-45e1-9085-e73706359688', '0.0.1': 'c3727ace-fffe-450a-bf05-90d4e3c796be', 'latest': '5e19a471-64e3-4aa4-ac56-6901d5e39e28'}","{'description': ""The MHSDS brings together information captured on clinical systems as part of patient care. It covers:\n\nadult and children's mental health\nlearning disabilities or autism spectrum disorder\nChildren and Young People Improving Access to Psychological Therapies (CYP-IAPT) services\nearly intervention care pathway\nThe MHSDS covers not only services provided in hospitals but also outpatient clinics and in the community, where the majority of people in contact with these services are treated."", 'associatedMedia': ['https://imperialcollegehealthpartners.com/discover-now/north-west-london-covid-19-data-repository/', 'https://www.nwlondonccgs.nhs.uk/professionals/whole-systems-integrated-care-wsic-dashboards-and-information-sharing/information-de-identified-users'], 'isPartOf': 'MENTAL HEALTH'}",5e19a471-64e3-4aa4-ac56-6901d5e39e28,https://web.www.healthdatagateway.org/dataset/5e19a471-64e3-4aa4-ac56-6901d5e39e28,"{'access': {'accessRequestCost': 'In Progress', 'dataController': 'Joint data controller model across North West London', 'deliveryLeadTime': '1-2 MONTHS', 'jurisdiction': 'GB', 'accessService': ""Researchers will have access to a VDI environment with a specific username and password. The researchers will get access to the datasets that is present in the hub's catalogue and would be able to carry out their research within the safe haven. There are restrictions applied which prevents the researchers from taking data out of the safe haven, once the research/analysis is completed the admin team will need to be contacted for taking the analysis off the safe haven"", 'dataProcessor': 'NHS BRENT CCG', 'accessRights': ['https://imperialcollegehealthpartners.com/discover-now/nwl-covid-data-access/']}, 'formatAndStandards': {'conformsTo': 'LOCAL', 'format': ['Excel', 'SQL', 'Tableau', 'R'], 'vocabularyEncodingScheme': 'LOCAL', 'language': 'en'}, 'usage': {'isReferencedBy': ['Bottleet al. BMC Medical Informatics and Decision Making (2020) 20:71 https://doi.org/10.1186/s12911-020-1082-7'], 'dataUseLimitation': 'NO RESTRICTION', 'investigations': ['https://www.registerfordiscover.org.uk/researchers/discover-for-researchers-and-industry'], 'resourceCreator': 'NHS Brent CCG\nDiscover-NOW', 'dataUseRequirements': ['COLLABORATION REQUIRED', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION']}}","{'temporal': {'distributionReleaseDate': '2019-12-18', 'timeLag': '1-2 MONTHS', 'accrualPeriodicity': 'MONTHLY', 'startDate': '2013-01-01'}, 'origin': {'collectionSituation': ['OUTPATIENTS', 'IN-PATIENTS'], 'purpose': ['CARE', 'ADMINISTRATIVE'], 'source': 'EPR'}}",2020-01-10T17:02:23Z,"[{'observedNode': 'Persons', 'measuredValue': ' 176,063', 'disambiguatingDescription': '', 'observationDate': '2020-12-08', 'measuredProperty': 'Count'}]",5.0.0,"{'qualifiedRelation': ['This can be linked to: Admitted Patient Care Outpatient Care High Cost drugs Patient level data Primary care events Primary care prescriptions  Adult social care  Accident and Emergency Community'], 'derivation': ['Not Available']}",2021-03-01T12:27:11Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 51, 'structuralMetadata.columnName': 51, 'structuralMetadata.columnDescription': 49, 'structuralMetadata.dataType': 51, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '23e6a300-d266-45c9-8dac-a7e6ae7d8a59', 'description': 'Mental Health Activity', 'name': 'Mental Health', 'dataElementsCount': 51, 'dataElements': '7665e544-866f-43d8-b0f9-efec5fa344a3, 806a7a88-0ba7-4537-a023-c09bda9d4588, 06b3f015-0ed6-4005-88e4-18fa797a2e84, a475c6f7-5af5-4348-b4d5-0775b545e90b, 68a6857b-1ff8-4bdb-b06c-395eb8c49a44, 1018881f-22ed-42dc-818f-72b89d76a7e9, a5bf1935-cbbb-4fe5-a7d6-2feb365b8909, 067234a7-fc3f-40f1-929d-5ebbe207080c, 06504bfe-72b2-4c99-a821-aed04a48308d, 824db489-9fab-43a2-81d7-79ec0199a6af, 1f4fcfaa-4e13-4426-8174-2a266147e04f, 934fb462-fbad-4718-aa1d-02529f6759dd, 2fae0c17-1b29-4f7b-a81a-ec44c35d6325, 26bb68ed-678d-41a4-9266-03a0057ddd27, 18c78978-733e-4b0a-805e-ceb0930ae03c, b96822a8-14be-428f-8b41-00706dcda459, 0a4051cb-9638-4438-ae9f-7cc8bbbab2d5, b0f42238-9a2d-4f5f-b607-6c4ab64999b9, 07ac6fe7-5f06-4664-8bd9-6f7326360c97, a6ac530d-47dc-49e4-bbd7-cf1da02b9452, 543ccd39-0395-45ec-87e4-d11ecf06c7dc, 4c80479a-fd45-4649-b573-a947d165c28f, f2e8b145-32a0-4df0-8c6c-00cc0fed35f0, 4ce02ab1-fa73-4c5b-bf5d-535fa38f1efa, 1576756a-572e-4b99-b6ef-3db980bb2b7d, 18e725dd-20fd-4044-8cc0-0e7f58535ba6, 1b365990-14c2-4557-a3a9-2721d77689ec, fb3fab1b-6b1d-458c-9fc2-73fc6aee62c9, 9999229d-159f-4e0e-bc3e-ef56a865061a, 51794479-ed99-4c1e-a76d-046202373658, fdf851ed-0d57-475f-92d3-198de7d39953, 743e0ef3-6223-4ac7-befb-febec6514556, 3c82e4a2-10cf-4925-8ebb-26e284bdcd24, 859a9948-e7dd-4220-9525-ad0e33774185, 33c0f9a2-4eac-40c6-8358-14d2403b5bae, d3aabd09-5348-4bf5-8091-ee00476214f6, e1c7930c-6efc-4455-9652-4b1eb00e7db2, a6d8e6d5-635f-43af-bb2c-6ba5e41199c0, 6077e977-8dd2-4d7b-a62b-f079d54ad617, 6a835565-f601-4ef4-8f64-111ef771f11b, 24c08f4a-299c-40ff-b0a2-2c21f57e5d72, cf419bc1-cd72-47cb-91f6-ada4907d60e7, 9870c727-ab77-4434-9273-9bbeaf0895eb, 0b5f6003-e1d4-45f5-b31d-f14be005835f, 84da4750-2e34-4dac-9809-4cfe48d594d5, adb11910-abc0-4907-86b8-4465699d6405, e4ef96c6-25bb-4f74-85dd-92ec5b762f2e, 3e7cc5c3-c050-4ab5-83cb-f9995abbe905, 0326743e-ae1a-4ebc-a520-dbb9148da7f7, e95b485f-9718-4787-ba6a-51829039ee16, d5937734-f17a-421f-89f0-0b7182c689b8'}]}"
"{'title': 'Emergency Department Dataset Daily', 'abstract': 'Daily version of Emergency Department Dataset.', 'doiName': 'In Progress', 'publisher': {'contactPoint': 'SAILDatabank@swansea.ac.uk', 'memberOf': 'ALLIANCE', 'name': 'SAIL'}, 'keywords': ['Emergency', 'A&E', 'SAIL', 'NCS'], 'contactPoint': 'SAILDatabank@swansea.ac.uk'}",fa257aa8-51fc-4eb7-a448-e473fa54686d,"{'typicalAgeRange': '0-150', 'pathway': 'Secondary care', 'followup': 'OTHER', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'Wales'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'3.0.0': 'efb03936-6904-44fc-9d73-c6794206a6db', '7.0.0': '5e2a7277-dc64-499a-b16d-51850d9ad00b', '2.0.0': '06a0f252-44f3-4c0e-a291-dd4ceb61f2e1', '1.0.0': '7ed951dc-6d9f-4c08-a41c-719ec3381503', '6.0.0': 'eebb647a-63eb-4e62-b052-26cb2eb4799d', '5.0.0': 'd92fd972-10b7-4163-bcd3-43c941202615', '4.0.0': '590a53fc-e3d9-4254-9839-e734044da4f2', '0.0.1': 'd8b14954-5507-45dc-8bb5-638dda8a121d', 'latest': '5e2a7277-dc64-499a-b16d-51850d9ad00b'}","{'description': 'Administrative and clinical information for all NHS Wales Accident and Emergency department attendances. Includes the All Wales Injury Surveillance Systems (AWISS) dataset.\n\nData recording practices may vary, especially in some of the minor A&E and Minor Injury Units which could account for some local differences.', 'isPartOf': 'No Group', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://www.youtube.com/watch?v=ZK9-Jw3uVkw', 'https://saildatabank.com/']}",5e2a7277-dc64-499a-b16d-51850d9ad00b,https://web.www.healthdatagateway.org/dataset/5e2a7277-dc64-499a-b16d-51850d9ad00b,"{'access': {'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'dataProcessor': 'SAIL Databank', 'accessRights': ['https://saildatabank.com/application-process/'], 'jurisdiction': 'GB-WLS', 'dataController': 'SAIL Databank', 'deliveryLeadTime': 'OTHER', 'accessRequestCost': '0 GBP'}, 'usage': {'dataUseLimitation': 'GENERAL RESEARCH USE', 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'isReferencedBy': ['Lyons, R.A., Jones, K.H., John, G. et al. The SAIL databank: linking multiple health and social care datasets. BMC Med Inform Decis Mak 9, 3 (2009). https://doi.org/10.1186/1472-6947-9-3'], 'resourceCreator': 'NHS Wales Informatics Service (NWIS)'}, 'formatAndStandards': {'conformsTo': 'LOCAL', 'vocabularyEncodingScheme': 'LOCAL', 'format': ['SQL table'], 'language': 'en'}}","{'temporal': {'distributionReleaseDate': '2020-06-05', 'endDate': '2020-07-28', 'timeLag': '1-2 WEEKS', 'startDate': '2010-07-22', 'accrualPeriodicity': 'DAILY'}, 'origin': {'source': 'EPR', 'collectionSituation': 'ACCIDENT AND EMERGENCY', 'purpose': ['STUDY', 'CARE', 'AUDIT', 'ADMINISTRATIVE', 'FINANCIAL']}}",2020-06-10T09:56:20Z,,7.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Linkable to any SAIL linked dataset'], 'tools': ['https://conceptlibrary.saildatabank.com/']}",2021-01-20T17:48:45Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 68, 'structuralMetadata.columnName': 68, 'structuralMetadata.columnDescription': 68, 'structuralMetadata.dataType': 68, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '20851cb6-5998-4604-be67-906bcacae5e9', 'description': 'Administrative and clinical information for all NHS Wales Accident and Emergency department attendances. 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"{'title': 'NHS Tayside and Fife Biochemistry (Lab Data Restructured)', 'abstract': 'NHS Tayside and NHS Fife laboratory data. Dec 1998 - current.', 'publisher': {'identifier': '607db9c4e1f9d3704d570d1f', 'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'hicsupport@dundee.ac.uk', 'keywords': ['Biochemistry', 'HIC', 'Labs']}",10ffac16-d0c2-4d53-ab6a-69a38e283223,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2636157/tayside-region.html'], 'typicalAgeRange': '0-150', 'followup': 'UNKNOWN'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '5e442584-9acd-4e8d-9448-5f8f2b937d56'},"{'description': 'Tayside and Fife labs biochemistry data. This data is provided in a format based upon the SCI-Store system.  Data prior to 2007 for Tayside has been transformed to fit this new structure. There is no legacy data for Fife as this data starts in 2005/6 and all comes from SCI-Store. \n \nData is complete in later years, but for older Tayside data (particularly pre-98), there may be missing patches in Ninewells data.\n\nPerth data incomplete as early computer systems were simply turned off and data was lost.\nStracathro data became computerised much later than the other labs.\n\nThis is a complex dataset which is supplied in a hierarchical form, this extract is a flattening of that hierarchy by HIC.', 'isPartOf': 'University of Dundee Health Informatics Centre'}",5e442584-9acd-4e8d-9448-5f8f2b937d56,https://web.www.healthdatagateway.org/dataset/5e442584-9acd-4e8d-9448-5f8f2b937d56,"{'access': {'jurisdiction': ['GB-SCT'], 'accessRights': ['https://www.dundee.ac.uk/hic/governanceapprovalsupport/'], 'deliveryLeadTime': 'OTHER', 'accessService': 'HIC has implemented a remote-access ""Safe Haven"" environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details are available via the following link:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/', 'dataController': 'University of Dundee'}, 'formatAndStandards': {'format': ['database'], 'conformsTo': ['LOCAL'], 'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE', 'NO RESTRICTION'], 'dataUseRequirements': ['DISCLOSURE CONTROL']}}","{'temporal': {'timeLag': '2-4 WEEKS', 'accrualPeriodicity': 'CONTINUOUS', 'distributionReleaseDate': '2021-09-23', 'startDate': '1986-01-01'}, 'origin': {'purpose': ['CARE'], 'source': ['ELECTRONIC SURVEY'], 'collectionSituation': ['PRIMARY CARE']}}",2021-09-23T16:44:14Z,"[{'observedNode': 'PERSONS', 'measuredValue': '240000000', 'disambiguatingDescription': '240000000 patients in dataset', 'observationDate': '23/09/2021', 'measuredProperty': 'COUNT'}]",3.0.0,,2021-09-23T16:44:14Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 33, 'structuralMetadata.columnName': 33, 'structuralMetadata.columnDescription': 33, 'structuralMetadata.dataType': 33, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'b4348ed3-6082-4415-a6e2-eb3df4be6872', 'description': 'Tayside and Fife labs biochemistry data. This data is provided in a format based upon the SCI-Store system.  Data prior to 2007 for Tayside has been transformed to fit this new structure. There is no legacy data for Fife as this data starts in 2005/6 and all comes from SCI-Store.      Data is complete in later years, but for older Tayside data (particularly pre-98), there may be missing patches in Ninewells data.    Perth data incomplete as early computer systems were simply turned off and data was lost.  Stracathro data became computerised much later than the other labs.    This is a complex dataset which is supplied in a hierarchical form, this extract is a flattening of that hierarchy by HIC.     The HIC recommended approach to using this data is to use the lookup file z_LocalClinicalCodeValue. Use the HICDescription column to find the codes you require. Next identify the records in 2 ways: Use the identified ReadCodeValue OR Use the identified ClinicalCodeValue along with the hb_extract.', 'name': 'Biochemistry (Lab Data Restructured)', 'dataElementsCount': 33, 'dataElements': '334cb836-8e46-46de-bdf6-5ac4beb57de6, a4c83299-2727-4f15-aa54-c5e5444078a1, fc2b6523-19b4-404d-8bf6-2fd514600689, 75e96e16-ca51-4653-b247-ebca3855c55f, 7bcb3fb9-476c-4b9f-b6b0-4f4227722755, 76674638-dbd4-4cc0-a389-d3f0c604e621, 2efeb6b9-2bd5-4c1f-960d-8c4b673ccb82, 9a16c175-087b-4a26-b1da-5efca6857b31, f9b890e1-47d0-40ea-acb0-da949990e768, b6617135-4e50-4e00-89db-2f7004c0fdcb, 6859a331-24c0-4c6f-ae60-cf89a98c96ba, ae701c4b-ac5b-41f1-a63e-69525d9eea34, a9cf067f-c7d8-488f-b0dd-bbb7c6dd7531, 8544aabe-4821-47ce-b126-c462412c1217, 4c1a714c-da4e-4ba3-b73d-20ab8050b422, 70823f10-339c-45f7-9991-c6e8d5aaeb46, 2cf55371-e6be-456f-b494-486f4572ae23, fa554110-0a30-4645-8721-eb2ecb160395, fcbdb08b-b0fe-4376-9db2-39783a87136a, afaa2106-3dd7-4606-800e-683945f98fd8, a226e540-510b-433b-b4de-0fef940e86ca, 3846e60a-2aa1-458e-9a0c-3262b265b114, 1560a5b1-8795-4bbe-baf5-a3d788daa2c8, 9eef5ffd-6f57-4d1b-923c-eab6441971f6, 3e046ff1-c6eb-4b36-af79-9bfdabc55c8b, 573f0d59-5120-4838-9963-13763e9808c2, 9968ea19-401d-4b36-858c-ff594bfccf21, 8720a0a8-db79-4e72-8c5c-e6bbda678ba0, f5310b20-3976-4d75-96a3-436aa1451d9b, 8dece871-1312-4d82-9c7d-663eed8bd322, 2bc1cb0d-8340-42c5-bd7b-82114e14babc, 1e6de1b6-b37b-4c0b-b741-c9265b5866f3, 9cee723e-4f13-4b42-99d6-a1105e584bd2'}]}"
"{'title': 'Moorfields AMD Dataset Release 002', 'publisher': {'name': 'INSIGHT', 'memberOf': 'HUB', 'identifier': '5f8437a3b7dec2a83e8cceba'}, 'abstract': 'The Moorfields AMD Dataset is a longitudinal dataset consisting of routinely collected imaging and clinical metadata from patients receiving treatment for age-related macular degeneration (AMD) at Moorfields, from 2004 to the present.', 'keywords': ['AMD, Wet AMD, Wet, Eye, MEH, Left, Right, Injection, Diagnosis, Eye condition, ', 'Laterality, Test, Ophthalmology, Dry AMD, image, Scan, Topcon, OCT,', 'Colour photo, Age-related macular degeneration, Surgery, Modality, ', 'Heidelberg, Macular, Protocol, Cataract, Glaucoma, Diabetes, DMO, DR, ', 'Ocular, Optic, Lucentis, Eye drop, IVT, Treatment, VA, Visual Acuity,', 'Eylea', 'Ophthalmology', 'Referral', 'Vision', 'Topcon', 'ranibizumab', 'aflibercept'], 'contactPoint': 'enquiries@insight.hdrhub.org'}",bf392537-82b4-4d71-ace0-e7bea3b167fb,"{'pathway': 'The dataset is representative of the entire pathway for patients receiving treatment for age-related macular degeneration (AMD) in the Medical Retina service at Moorfields Eye Hospital.', 'followup': '> 10 YEARS', 'physicalSampleAvailability': ['OTHER'], 'typicalAgeRange': '0-150', 'spatial': ['https://www.geonames.org/2648147/great-britain.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '7aab11a7-6fff-4e4a-a480-b48ccc6bad87', '1.0.0': '5e9d4a4b-544c-4739-b079-62f353086fde', 'latest': '5e9d4a4b-544c-4739-b079-62f353086fde'}","{'description': 'The Moorfields AMD Dataset is a longitudinal dataset consisting of routinely collected imaging and clinical metadata from patients receiving treatment for age-related macular degeneration (AMD) at Moorfields, from 2004 to the present. \n\nThis dataset encompasses all patients at Moorfields Eye Hospital - the large eye hospital in either Europe or North America - who have received at least one injection of either Lucentis (ranibizumab) or Eylea (aflibercept). These therapies began at Moorfields in 2007, however, the dataset will include any imaging or clinical metadata that is available for these patients prior to that time (for example in patients who were initially monitored for the early or intermediate forms of this disease prior to receiving treatment). Also of note, this dataset will include data from both eyes in each case - for example, it will include data from fellow eyes that are not receiving injections. For these reasons, the dataset will include longitudinal data from a mixture of eyes with both “dry” and “wet” AMD. \n\nClinical metadata includes demographic information, visual acuities (predominantly measured with Early Treatment Diabetic Retinopathy Study (ETDRS) charts), diabetic retinopathy grading, and information regarding intravitreal therapies and ocular surgeries. \n\nImaging metadata includes colour fundus photographs, optical coherence tomography (OCT) scans (Topcon, Heidelberg), fundus autofluorescence (Heidelberg), fluorescein and indocyanine green angiography (Heidelberg). \n\nThis dataset is continuously updating, however, as of February 2021, it consisted of 10,966 eyes receiving Lucentis or Eylea for AMD, 175,657 injection episodes, and 1,883,796 ophthalmic images. This is the largest single centre database from patients with AMD and covers more than a decade of follow-up for these patients.', 'isPartOf': 'Not Applicable', 'associatedMedia': ['https://www.insight.hdrhub.org/about-us']}",5e9d4a4b-544c-4739-b079-62f353086fde,https://web.www.healthdatagateway.org/dataset/5e9d4a4b-544c-4739-b079-62f353086fde,"{'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'isReferencedBy': ['https://www.nature.com/articles/s41433-020-0764-9', 'https://bmjopen.bmj.com/content/9/6/e027441.long', 'https://bjo.bmj.com/content/104/5/684.long', 'https://www.nature.com/articles/s41591-020-0867-7', 'https://www.aaojournal.org/article/S0161-6420(20)30930-1/fulltext', 'https://bjo.bmj.com/content/early/2020/10/02/bjophthalmol-2020-317161.long', 'https://jamanetwork.com/journals/jamaophthalmology/article-abstract/2772986', 'https://www.sciencedirect.com/science/article/abs/pii/S2468653021000312?via%3Dihub'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'resourceCreator': ['https://bjo.bmj.com/content/early/2020/10/02/bjophthalmol-2020-317161.long']}, 'access': {'accessService': 'INSIGHT is developing its data access environment for researchers. Until such time INSIGHT releases anonymised data, under data licence, into external secure environments.', 'dataController': 'Moorfields Eye Hospital', 'deliveryLeadTime': '2-6 MONTHS', 'dataProcessor': 'Google', 'jurisdiction': ['GB-GBN'], 'accessRights': ['https://www.insight.hdrhub.org/researcher-area'], 'accessRequestCost': ['https://www.insight.hdrhub.org/contact']}, 'formatAndStandards': {'conformsTo': ['NHS DATA DICTIONARY', 'OTHER'], 'vocabularyEncodingScheme': ['SNOMED CT', 'DM+D', 'NHS NATIONAL CODES'], 'language': ['en'], 'format': ['CSV', 'Image']}}","{'temporal': {'accrualPeriodicity': 'CONTINUOUS', 'timeLag': 'LESS 1 WEEK', 'startDate': '2003-04-20'}, 'origin': {'source': ['EPR', 'MACHINE GENERATED', 'OTHER'], 'purpose': ['STUDY'], 'collectionSituation': ['CLINIC', 'ACCIDENT AND EMERGENCY', 'OUTPATIENTS', 'IN-PATIENTS']}}",2021-02-26T15:08:07Z,"[{'observedNode': 'PERSONS', 'measuredValue': '8668', 'observationDate': '23/09/2021', 'measuredProperty': '8668', 'disambiguatingDescription': '8668 Patients\n16,659 eyes with 1,883,796 images\n10,966 eyes with 175,657 injections (Lucentis/Eylea)\n17,331 eyes with 510.564 visual acuity readings'}]",1.0.0,"{'derivation': ['Not Applicable'], 'qualifiedRelation': ['None']}",2021-09-27T09:28:35Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 6, 'structuralMetadata.tableName': 6, 'structuralMetadata.tableDescription': 6, 'structuralMetadata.dataElementsCount': 59, 'structuralMetadata.columnName': 59, 'structuralMetadata.columnDescription': 59, 'structuralMetadata.dataType': 59, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '528a992e-87d5-4e53-b497-5722de2902ef', 'description': 'This table contains the ocular surgery data', 'name': 'operation_procedure', 'dataElementsCount': 6, 'dataElements': 'a0c0ad56-aa4a-4196-928e-f0f76b4fc824, d0c3b26e-0432-47f2-b1a8-d89288380f15, fb018223-beae-4de3-ba91-9ab8abbecc8a, e59321fa-1162-4bef-88be-3570f985526f, cb48d969-d177-4a19-a273-9bd828fc67cd, 73dc43a0-e747-46ac-a5e6-c71fa896dca4'}, {'id': '8c58347d-e7c9-4f1b-b53b-8b517f129b96', 'description': 'This table contains the OCT reading data', 'name': 'oct_readings', 'dataElementsCount': 10, 'dataElements': '490798de-571f-44ac-906e-bd1ca2c51882, b1d4ed4a-f92c-4bb2-9cc1-ccca7d71d2cf, 5756d70c-5c24-4d2e-9ccc-803ab866e257, 5c8eec44-af15-46cd-9335-a21f6c3ed114, 1265b973-bd41-4571-9b94-076766a9b97b, 7221e0df-3015-4c11-98a6-d3b99faf165c, 21b50405-28ae-4748-ab80-9e1f235d4287, 93564525-8b82-4362-9cc1-ff5b7b26d1e1, 20f7ef31-3e9b-4e4f-960b-399918f00b24, 0943f3ff-fec4-471b-8b4b-d57c4678b0b4'}, {'id': '087e6943-ade5-4b3e-be55-67e0483acc3a', 'description': 'This table contains the visual acuity data', 'name': 'visual_acuity', 'dataElementsCount': 7, 'dataElements': '59d62232-f060-4066-9076-d6b39b258566, 89b7539d-c214-4d5f-abc9-54926117c1b6, af96739a-3b03-4b33-820a-93ad3df2af74, b7c5534f-115d-49e9-a4e0-a213c376d3a9, 1dedb6fa-f15c-4e9d-b436-6be378e023fc, 9ccdf9aa-837e-4185-97a6-711cf4defca7, 65b8cabe-5c92-402b-bc21-983d21947d8a'}, {'id': '388de223-f96c-4819-af92-c640bed7f2de', 'description': 'This table contains the image metadata', 'name': 'images', 'dataElementsCount': 23, 'dataElements': 'e7948820-243f-4a0b-992f-3a13bf314e1f, 93082274-63c9-466d-8090-87401c1c8a97, 62f6faf3-afab-44f7-a55c-8a8d9b10f6e3, 97447f02-28b7-4f4e-94a3-5c7e75a15e13, f3be1939-f985-4d20-9621-0d771fbad2cd, 20f15902-245e-4deb-93c1-b6bd7921674d, 25a2a07f-4d6f-4579-8d24-a24c9bec8bf7, 6458d1c0-69a0-4673-b03c-7c58d4c3bd14, f521d6a1-c1eb-485a-b700-481e457c9b5c, 80a6eb59-8ed7-45a0-99ff-8e751e1161f3, a32aa840-aab6-466f-aa67-73ca5b9edd4b, 90c47b64-f6aa-41f6-8342-cca361cb2d05, 64e8fc5d-470f-4e17-ba62-2ce200d228ec, b5102b78-e32e-4978-b768-fe048661bd25, 26fb2cdf-19be-4b7b-bae7-c186bb9ea625, 7ba2c913-ec90-438c-be2a-2d9d7c11ec24, 1841c6b5-91b3-4918-8ea5-5179112c8948, 3cc80893-8d85-4992-8084-392e12fa963e, 43369b89-3be8-42b4-9b88-8549f14bc11a, 1166a8d7-ce4d-4aa5-a4a2-9eece1ebe2a1, 53c0aa6b-170e-4e61-acab-8f2ff27f2f67, 3cab9f6f-2043-49f6-9d8a-54305c43787d, c099242f-75ec-4c32-86c3-b9e83659c78b'}, {'id': '3f684375-1b4f-43ff-a586-deb693f46aa2', 'description': 'This table contains the injection data', 'name': 'injections', 'dataElementsCount': 7, 'dataElements': '03f948f3-60c5-4aee-8cfa-053c6e53d46a, 2a05c13d-d6d1-4eb1-b98d-f14ef70fd0ba, 41a87a2c-36e8-4696-b793-c49a50736c54, 76d55477-3239-4a81-86fd-2ad5a2cb3601, 5ddeeae9-71d7-482c-bf47-56fb2fe9f540, e03f8672-c7b9-4f48-950a-944d47344f5f, ee4c0c9e-75db-48e7-8a85-96e6fdb8a424'}, {'id': '6a5c1133-3d15-49f6-8daa-88491f541f4e', 'description': 'This table contains the demographic data', 'name': 'demographic', 'dataElementsCount': 6, 'dataElements': '77aad9ad-412b-4684-a38f-af000fc36b6c, 167615dd-cc40-4aeb-a9cf-3d88cd1c8925, face234a-4472-496a-b69e-22fdb02dac9b, a030cfcf-c8dd-47b9-b35d-244d0b72bc21, 60ff4bb4-aecd-4b20-b961-c371ce68f8f3, 58f2af47-371a-4dc9-81dd-863ec8c4fb38'}]}"
"{'title': 'National Cancer Registration and Analysis Service', 'contactPoint': 'ODR@phe.gov.uk', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c5e1f9d3704d570d63', 'name': 'PUBLIC HEALTH ENGLAND'}, 'keywords': ['neoplasia', 'cancer registry', 'tumour', 'neoplasm', 'Cancer', 'cancer registration'], 'abstract': 'Population-based cancer registration data for all patients diagnosed with a primary tumour (ICD 10 C00-97x, D00-48x) in England. Linked chemotherapy, radiotherapy, hospital admission, diagnostic imaging, primary care diagnosis, and patient experience data'}",0a852454-ee67-443b-a091-d13499a71b41,"{'typicalAgeRange': '0-150', 'spatial': 'https://www.geonames.org/6269131/england.html', 'followup': '> 10 YEARS', 'pathway': 'Integrated care record covering the whole cancer patient pathway.', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '79a7ad18-6941-4543-924a-787f2381f5e0', '4.0.0': '5ef3573a-274a-41e1-8f64-9330109d59d1', '1.0.0': '825fefd4-7529-47be-9d63-4ef0307d681f', '0.0.3': '4f210cfb-8d0a-4fc9-9ce0-91ba1ee0dc79', '3.0.0': 'f67ffcad-ebf0-4d76-a5f6-728f1f01d94f', 'latest': '5ef3573a-274a-41e1-8f64-9330109d59d1'}","{'description': 'The National Cancer Registration and Analysis Service (NCRAS), one of the largest, most advanced and complex cancer data curation service anywhere in the world, collects data on all cases of cancer that occur in people living in England. NCRAS routinely collects patient and tumour level information to build a picture of the cancer patient pathway, through the Cancer Outcomes and Services Dataset (COSD). NCRAS merges data from multiple datasets to create the National Cancer Registration Dataset, which is then enhanced with data from other sources.\n\nNational Cancer Registration Dataset: Patient, tumour and treatment information linked by NHS number, including a subset of COSD. Data Resource Profile: National Cancer Registration Dataset https://academic.oup.com/ije/article/49/1/16/5476570 \n\nRapid Cancer Registration Dataset: Proxy tumour registrations and some associated events on the cancer patient pathway (eg surgery, radiotherapy and chemotherapy) from January 2018 to the most recently available data (approximately 4 months after clinical activity). http://www.ncin.org.uk/collecting_and_using_data/rcrd\n\nSystemic Anti Cancer Therapy (SACT) dataset: Data on SACT activities, which includes chemotherapy, from all NHS England chemotherapy providers since April 2021. Data Resource Profile: The Systemic Anti-Cancer Therapy (SACT) dataset https://academic.oup.com/ije/article/49/1/15/5538002 \n\nRadiotherapy dataset (RTDS): The national data standard for collecting information about radiotherapy treatment since 2009; data from all NHS Acute Trust providers of radiotherapy services in England\n\nNational Cancer Diagnosis Audit (NCDA): Participating GPs securely submit information about the primary care part of the pathway for their patients who were diagnosed with cancer during the audit timeframe\n\nHospital Episodes Statistics (HES): Administrative data on hospital admissions linked to cancer registrations, including inpatient, outpatient and A&E attendances and appointments\n\nDiagnostic Imaging Dataset (DID): Information on diagnostic imaging tests linked to cancer registrations, including the type of test used, where on the body it was conducted, and the source of referral\n\nNational Cancer Waiting Times (CWT) Monitoring data: Data on the time between referral, diagnosis and treatment for cancer patients\n\nNational Cancer Patient Experience Survey (CPES): Data based on surveys sent to patients asking about their cancer journey from symptoms, diagnosis and treatment to aftercare.\n\nPatient Reported Outcome Measures (PROMs) datasets: Data from patient surveys about their experience of their journey from diagnosis to aftercare, for bladder, breast, colorectal, gynaecological, Non-Hodgkin Lymphoma and prostate cancer.\n\nFor details on the coverage and availability of each of these individual datasets, see https://www.gov.uk/guidance/national-cancer-registration-and-analysis-service-ncras#guides-to-cancer-data-and-working-with-us and on the “Technical details” tab.', 'associatedMedia': ['https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/884776/A_guide_to_NCRAS_data_and_its_availability__1_.pdf'], 'isPartOf': 'NOT APPLICABLE'}",5ef3573a-274a-41e1-8f64-9330109d59d1,https://web.www.healthdatagateway.org/dataset/5ef3573a-274a-41e1-8f64-9330109d59d1,"{'access': {'dataProcessor': 'Not Applicable', 'accessService': 'The Office for Data Release (ODR) is responsible for providing a common governance framework for responding to requests to access cancer registration data. Requests are reviewed in line with the confidentiality and data protection provisions in: the common law duty of confidentiality, data protection legislation (including the General Data Protection Regulation), 8 Caldicott principles, the Information Commissioner’s statutory data sharing code of practice, the national data opt-out programme.', 'accessRequestCost': ['PHE applies charges on a full economic cost recovery basis for any work to prepare and release data through the ODR. All requests are charged on a project by project basis to reflect that the amount of work required to facilitate access to the data will differ. For the 2020/21 financial year, the unit cost per hour for ODR services is set at £415.80 (excluding VAT). Please note that unless a valid exemption applies, VAT will be charged at the prevailing rate at time of invoicing. Service charges are either ‘variable’ or ‘fixed’ as detailed: Service Costs: ODR review, contract execution and ongoing administration = £831.60 (fixed). Amendments to existing extant contracts (inclusive of ODR review and management of contract variations) = £415.80 (fixed). Data preparation, extraction and quality assurance of the data (applicable to new applications and amendments) or bespoke data linkage = charges will be quoted based on the complexity of the request and the frequency at which the data will be disseminated and/or bespoke linkage will be applied (variable).'], 'jurisdiction': ['GB-ENG'], 'accessRights': ['https://www.gov.uk/government/publications/accessing-public-health-england-data'], 'dataController': 'Public Health England'}, 'formatAndStandards': {'language': ['en'], 'conformsTo': ['OTHER'], 'vocabularyEncodingScheme': ['LOCAL', 'OPCS4', 'READ', 'SNOMED CT', 'SNOMED RT', 'DM+D', 'NHS NATIONAL CODES', 'ODS', 'ICD10', 'ICD9', 'ICDO3'], 'format': ['csv', 'dta']}, 'usage': {'resourceCreator': ['This work uses data that has been provided by patients and collected by the NHS as part of their care and support. The data are collated, maintained and quality assured by the National Cancer Registration and Analysis Service, which is part of Public Health England (PHE). Access to the data was facilitated by the PHE Office for Data Release.'], 'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS'], 'investigations': ['https://www.gov.uk/government/publications/phe-data-release-register', ''], 'isReferencedBy': ['Data Resource Profile: National Cancer Registration Dataset: https://academic.oup.com/ije/article/49/1/16/5476570 ', 'Data Resource Profile: The Systemic Anti-Cancer Therapy (SACT) dataset: https://academic.oup.com/ije/article/49/1/15/5538002 ']}}","{'origin': {'purpose': ['DISEASE REGISTRY'], 'collectionSituation': ['CLINIC', 'PRIMARY CARE', 'OUTPATIENTS', 'IN-PATIENTS', 'SERVICES', 'COMMUNITY', 'HOME', 'OTHER'], 'source': ['EPR', 'ELECTRONIC SURVEY', 'LIMS', 'PAPER BASED', 'FREETEXT NLP', 'MACHINE GENERATED', 'OTHER']}, 'temporal': {'timeLag': 'VARIABLE', 'accrualPeriodicity': 'IRREGULAR', 'startDate': '1985-01-01'}}",2020-11-05T16:40:46Z,"[{'observedNode': 'PERSONS', 'measuredValue': '300000', 'observationDate': '01/01/2020', 'measuredProperty': 'Count', 'disambiguatingDescription': '300,000 patients per year and associated events'}]",4.0.0,"{'tools': ['https://cancerdata.nhs.uk/simulacrum'], 'qualifiedRelation': ['CPRD (GOLD & ARUM)', 'NHS Business Services Authority Prescribing Data', 'HES', 'ONS Civil Registration', 'Molecular Data', 'MINAP', 'NICOR', 'a number of standing cohorts including UK Biobank.'], 'derivation': ['There are approximately 200 derived fields across the NCRAS data tables that support privacy conserving methods to be implemented (e.g. age at diagnosis in 5 year age bands or full dates truncated to month and year or year alone). In addition fields such as STAGE_BEST ROUTE_CODE FINAL_ROUTE and Charlson Scores are derived based on published methodologies.']}",2021-08-09T12:33:08Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 2, 'structuralMetadata.tableName': 2, 'structuralMetadata.tableDescription': 2, 'structuralMetadata.dataElementsCount': 229, 'structuralMetadata.columnName': 229, 'structuralMetadata.columnDescription': 229, 'structuralMetadata.dataType': 229, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '78c8d0bc-89eb-45c4-846c-326d23c77280', 'description': 'The Quality of Life of Colorectal Cancer Survivors in England: Patient Reported Outcome Measures includes responses from respondents to a questionnaire distributed to colorectal cancer patients in January 2013, who were alive 12-36 months after a diagnosis of colorectal cancer. Respondents (n=34,467) described different parts of their journey from a diagnosis of colorectal cancer to treatment and through to their experiences of aftercare. The outcome questions in the survey are made up of three instruments: the EQ-5D (Euroqol 5 level), FACT items (Functional Assessment of Cancer Therapy) and SDI (Social Difficulties Inventory). \n\nAs NHS number is not contained in this dataset, it is not possible at this time to link this dataset either to other datasets held by NCRAS or to an identifiable cohort provided by requestors - the data can only be provided as a discrete dataset.', 'name': 'PROMs Colorectal 2013', 'dataElementsCount': 121, 'dataElements': '66356cde-9f06-43b6-b24f-f92b693d6f77, db9c98cf-9724-4487-b790-1435df8db287, 579b3de3-97a5-48f1-82ab-c39d2849da5f, c0941822-703b-4583-81c8-2700a4812882, c0da92b8-ab8c-44f5-8bcd-0d82f29e7f2f, d7ccbd5c-1b3c-4378-837b-2ec9dbb90dbf, 3d5bce75-bd3e-46d8-8a46-673ceadbd7b2, d88d4b59-8319-4b31-a6e5-8d8ec28382d3, c5802ece-e2da-4a30-8960-fa709fca4ad3, c0b7b4ad-2a24-43ab-bf63-d1b20d5716b9, 825842db-e383-480a-832f-b692129a9fe2, 2ed1f374-daac-4b49-b4cc-9ec884616fe2, 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Data were collected on 17,042 cancer cases in England and 2,014 cases in Scotland. \n\nTwo datasets are available: 1. English only data which can be linked to the cancer registry (n=17,042) and 2. a standalone dataset containing English and Scottish data (n=19,056).\n\nThe NCDA cohort was created by selecting all malignant cancer cases (excluding non-melanoma skin cancer) diagnosed in 2014, as registered by NCRAS (England) or ISD Scotland. Participation on the NCDA was optional and verified GPs entered primary care information on patients registered at their practice whilst diagnosed with cancer. For the English NCDA, data were not entered on patients whose cancer was detected through screening but the data has been retained in the dataset for completeness. Information on screen-detected cancers was collected in the Scottish NCDA.\n\nThe audit in England was conducted between Sept 2016 and Feb 2017 and 439 practices (about 5% of all practices) submitted data. Of the practices that participated, 365 practices entered data on ?95% of patients from the audit list. The NCDA represents 6% of the total cancers registered in 2014 and the distribution of age and cancer types were similar to the total cohort of cancers registered in 2014. The participating practices were similar to non-participating practices, with respect to age, urban/rural location and practice -based patient experience measures, however practices participating in the NCDA were somewhat larger and had slightly fewer patients per GP (Swann et al. BJGP 2018 68(666):e63-e66 doi:10.3399/bjgp17X694169).\n\nFor the Scottish NCDA, 73 practices participated (about 8% of all practices in Scotland) and entered data between Jan 2017 and May 2017 (Murchie et al. Eur J Cancer Care 2020 29(3):e13234. doi: 10.1111/ecc.13234).\n\nWhere NCDA data are requested, NCRAS will, by default, mask the GP practice name, unless the data are requested from the GP practice itself.', 'name': 'National Cancer Diagnosis Audit (NCDA)', 'dataElementsCount': 108, 'dataElements': '9b157fe8-1b10-4348-8082-bb8e03a40fc7, 6cdb0136-3ad6-4fd6-a289-e0da749d9570, ff6aa579-2ef8-4894-831d-14368d3cb829, 714271af-5eb9-4a60-9f3a-1407f105e079, 9d2db63e-8e3b-498a-803a-fe065bc76f29, bc96cfe4-30f1-4230-bb39-9cd78837774e, 038b751f-6b33-41e2-b7e8-a55374a61c20, 2ed36b0e-c7b2-41ee-b1b3-2456a3d8c424, e385962e-0ea3-4fc4-bc75-b2565d4d194f, 480ea0d5-4e55-4315-8272-f63bd8ec8b9e, b54b98eb-3fcc-416a-bf0c-94bab2f0e7db, 75d652a6-5fcf-4e66-9ed8-1c1d2b87a6b5, 14de1f8b-7a10-4b4a-8158-f804819e9822, f83bf576-2e32-4137-9870-41fe2eff73d2, 61147743-0e78-41e7-bb37-0098f0bbf6c0, 93bdd6aa-b4af-4b73-8491-fa831edd3a76, 8e6ad4f1-b1db-4513-b1e8-c6d28efa9685, 41509b10-4770-4c22-83af-a67d8aae1266, 3cf2b335-1137-41dc-9f71-24c139079609, 8eb7a740-fd3e-4063-bf18-a46953b4d978, 4a791419-4c2e-4f46-9bee-756def2afcb7, 03e395c1-e6cf-469a-959a-6b760d1c7914, b964529f-fc6b-458c-8fb9-a331c1f0b153, b85cf9a6-bdf9-4e5f-92ae-37b9149cd364, 6358518d-f3cc-4e5e-925e-e48e87b64fcb, 7500fddd-c743-453d-a89a-361b49cc8f9e, eeb923b7-1fbc-4cdd-a1a7-6de3f6fd31bf, a7fa286c-bb45-4624-97bf-4c0ff2df26d8, ea5e87f5-d057-4dd1-926b-daa72d2902ed, 7e80c823-6194-42eb-9161-62a362f62825, fce006d8-9ed3-4bdf-b291-508201a2a394, c5010d85-f82c-417b-af14-d345057ef192, c79f73da-7756-4275-9ae9-c2799817e426, a6a69504-fc26-41d2-b61f-b76b57a1db06, db4c6127-32bb-4885-bc68-4819bc2f6eec, 552cc061-2df8-4aea-ba1c-48bbaa704de1, 6f1dcb87-a4d2-418e-856f-65ad4bfb0a4b, 9e068cfc-8362-438d-9906-a92d0d76b7c8, 5955509f-80f8-44f3-8798-d6efd41ae1e8, faf8f770-e2a7-4ed3-9829-98cd25f80e96, a49cc84b-97d6-4be8-8ce5-5b0374ebc8d7, a1bd5934-508d-463c-8773-da16def92659, 756f882b-39d2-4efa-8d73-20251f0cb662, 75454d52-8354-4db0-af34-340681321dfa, 936be11e-e418-450c-bf84-8d17b192f691, eefe9fff-2e86-45b9-88e7-bd9ebfaf7b6d, 5b15c5db-3568-4bdf-8fa8-db40e80c6053, e892e64a-0a94-42fd-ba5e-c74f7c32191e, 8cdc1b15-226c-41ad-b2d5-bfad66b44762, 7980cd29-e9ff-4850-a646-5e96ea2c93ed, 8ae54e62-a84c-44f8-a838-506466e344eb, 4df6c0dc-9385-4da2-8cea-89b7353041f6, 78419cf2-5107-4969-9bed-e2dd7b20bd5d, 196102c6-3c75-408b-85b2-c143880a6cfb, f8827fff-5bf8-419a-9f74-a704b4ecaf6f, ae9a0263-904f-4f6b-bc8d-a41a3de8db24, 12254427-6c69-4ee4-9226-3e866d4bf439, 566b185f-25a1-460b-94dc-a6dca4281d9a, c655ca81-81d0-461e-9b18-3560c48de768, ebbf9e4e-c29f-4180-afce-fab447d4a97f, 0f2f886d-f09f-44bc-897e-777bace6537e, 51e1abf0-8448-4c9a-8b09-dac7ea7b7e44, df313511-607f-4006-9d41-157cf2c70a58, 1c5dd922-ca95-4cbc-bba8-c020b9eddf6b, 01f618fc-2acf-4fa8-baaf-85ca682578ea, 88e94112-5962-4fc1-8539-ffd7c5481f98, 3b36f50c-6ef0-420b-9e8f-99f806eba832, 9a372ada-e602-47d9-ad53-721b4dee9ec5, 3ef2329d-9ebe-42fd-b70f-e0dcf2f89902, a1084648-0dd5-416d-bbea-4ff2593cb241, 6e19ebc9-0211-4803-858a-6fa1e3417c5f, 91c88e9d-4ea6-4ec2-9077-4dfcce30446f, 8f732520-6436-402e-8926-013e61461b93, 79ec78b9-364b-4201-88e2-b204f3b64181, c30fb5ea-6e1b-48c5-8367-874e38144e5f, 27542554-d91f-44b6-b67b-81e8fa494ecc, 9893f9e3-486b-4fb9-98ee-2b2cabeb4395, 3e639da2-76df-4e7f-b4f4-a584ca9037d5, 477e6390-152f-43de-8f20-c212fc6321a8, ba47a1cd-c3c8-4b9b-8fe0-d40b9b8f5504, 4a5a88ca-fa28-44ca-bfd7-b218d75df81c, fe125396-2474-4367-9430-368c7373e768, e93c67b7-af98-4dbb-ae40-a297eae839ba, 8dab9132-a1fc-455d-ae16-d224bb868c51, 19530e75-bff9-4325-ae1e-3097976795ea, 72bab843-666e-48d1-a5ca-1a69f8255853, 8b679281-38d9-4c94-b582-7a7b0d60ae72, 5ed30375-2758-4199-9b4d-0c4c7f53887f, 4dc60385-22e1-493f-944d-721a8ce303b7, 20422fee-679e-427c-8b4d-d2fa70c208a7, 9ac8e971-7092-4d34-a85d-46d7e20b85c0, b6c2338f-7a2b-48d7-b492-c32bea1c2b01, a8fde3e6-be93-4a37-b1c9-9f72f98dd96d, 34a7e4f7-3ac2-43b2-af62-e292dd4d325e, e6a728d0-a740-46d0-ab73-567507dca6d9, c4404b07-5ca1-470d-89aa-3db4ccfb27a4, e8998d0d-7b70-41f4-b698-0ea1c37e0886, 6741b484-1fce-42be-b0e2-77e59d563310, ef27bfd2-0a03-4208-b9f6-37141da2a3bf, 00666c31-816a-406b-8d17-8257a4ea83c7, d20c4176-dc38-4159-bb09-212ccf8b3283, 363a71a9-d75b-408a-b3cb-e815eadad1ad, d2d6ac13-35bd-4373-b8cd-435f63749ee0, 8c1549bc-e6c9-41ed-95ff-3608d9f14312, 7984eb72-7dad-49bb-87ba-edee0a5cae43, 0d36970d-1ce6-4518-a072-794689f56bd7, 22f67768-3e53-4420-bc28-ca47a312431d, 8f196a49-66cc-4723-bdce-20f842e91fa7'}]}"
"{'title': 'HES Admitted Patient Care data for QResearch', 'publisher': {'name': 'QResearch', 'memberOf': 'ALLIANCE', 'identifier': '61ba059ac688870b12a4e05b'}, 'abstract': 'Linked Hospital Episode Statistics Admitted Patient Care (HES APC) data contain details of admissions to, and attendances at, English NHS providers, including admission and discharge dates, diagnoses, procedures and specialists seen under.', 'keywords': ['Hospital Admissions', 'NCS', 'National Core Study'], 'contactPoint': 'qresearch@phc.ox.ac.uk'}",69996d55-ead8-4c8a-a2b6-eb5cdc0e7d75,"{'pathway': 'Secondary care', 'followup': '1 - 10 YEARS', 'spatial': ['United Kingdom,England'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-115'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'fede8251-d56f-4b23-9ceb-ba572a36062c', '2.0.0': '5fbc74c1-e305-4697-bb02-1de6585d6113', 'latest': '5fbc74c1-e305-4697-bb02-1de6585d6113'}","{'description': 'Linked Hospital Episode Statistics Admitted Patient Care (HES APC) data contains details of all admissions to, or attendances at English NHS healthcare providers. This includes private patients treated in NHS hospitals, patients resident outside of England and care delivered by treatment centres (including those in the independent sector) funded by the NHS. All NHS healthcare providers in England, including acute hospital trusts, primary care trusts and mental health trusts provide data. HES APC data includes the complete set of hospital episode information (admission and discharge dates, diagnoses (identifying primary diagnosis), specialists seen under and procedures undertaken) for each linked patient with a hospitalisation record. In addition, Augmented care data (intensive and/or high dependency levels of care) and Maternity data are available.', 'isPartOf': 'Hospital Episode Statistics'}",5fbc74c1-e305-4697-bb02-1de6585d6113,https://web.www.healthdatagateway.org/dataset/5fbc74c1-e305-4697-bb02-1de6585d6113,"{'usage': {'dataUseRequirements': ['ETHICS APPROVAL REQUIRED', 'NOT FOR PROFIT USE'], 'resourceCreator': ['NHS Digital'], 'investigations': ['https://www.qresearch.org/research/approved-research-programs-and-projects/'], 'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['ICD10', 'ICD9', 'ODS', 'OPCS4'], 'conformsTo': ['NHS DATA DICTIONARY'], 'format': ['CSV', 'TSV', 'Stata', 'SQL Server Database'], 'language': ['en']}, 'access': {'dataProcessor': 'University of Oxford', 'accessRights': ['https://www.qresearch.org/information/information-for-researchers/'], 'accessRequestCost': ['https://www.qresearch.org/information/information-for-researchers/'], 'jurisdiction': ['GB-ENG'], 'deliveryLeadTime': '1-2 MONTHS', 'accessService': 'Remote Desktop to dedicated Windows Server.\n\nStandard Server Spec:\n16GB RAM, 4 Logical Xeon Gold Processors, 200 GB HDD\n\nMax available Server Spec:\n512GB RAM, 72 Logical Xeon Gold Processors, 2TB HDD. Tesla V100 GPU', 'dataController': 'University of Oxford'}}","{'temporal': {'timeLag': '1-2 MONTHS', 'startDate': '1997-04-01', 'endDate': '2021-03-31', 'distributionReleaseDate': '2022-03-01', 'accrualPeriodicity': 'QUARTERLY'}, 'origin': {'source': ['EPR'], 'purpose': ['CARE', 'ADMINISTRATIVE'], 'collectionSituation': ['IN-PATIENTS']}}",2022-03-21T16:45:54Z,"[{'measuredValue': '35047612', 'observedNode': 'PERSONS', 'disambiguatingDescription': 'Number of patients matched to single HES identifier', 'observationDate': '04/02/2022', 'measuredProperty': 'Count'}]",2.0.0,,2022-06-08T09:53:38Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 109, 'structuralMetadata.columnName': 109, 'structuralMetadata.columnDescription': 109, 'structuralMetadata.dataType': 109, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 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Most datasets are available to access through remote access to the SRS. 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"{'title': 'North West London population data (NWL POP)', 'contactPoint': 'researchers@registerfordiscover.org.uk', 'abstract': 'The NWL POP table holds the NWL registered patients and key demographic information about them i.e. age, gender, ethinicity etc.', 'publisher': {'name': 'DISCOVER NOW', 'memberOf': 'HUB', 'contactPoint': 'researchers@registerfordiscover.org.uk'}, 'doiName': 'In Progress', 'keywords': ['NHAIS', 'Discover-NOW', 'Integrated Care', 'Pathway', 'Real World data', 'Linked longitudinal']}",1032850f-7631-4d9e-a760-b0532bffd21a,"{'spatial': 'NHS Brent CCG; NHS Central London CCG; NHS Ealing CCG; NHS Hammersmith &Fulham CCG; NHS Harrow CCG; NHS Hillingdon CCG; NHS Hounslow CCG; NHS West London CCG', 'typicalAgeRange': '0-150', 'followup': '> 10 YEARS', 'pathway': 'This dataset provides the full NWL population which identifies every patient through an unique patient key. This can be used to link to all other datasets to get a better understanding of the patient pathways', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '278b91aa-7ad1-4b89-86aa-10e9e013f0cf', '2.0.0': '601f1504-2706-405b-94cb-8cd14231f434', '0.0.1': '5546a711-109e-440c-815c-1d27a596a625', 'latest': '601f1504-2706-405b-94cb-8cd14231f434'}","{'description': 'NHAIS is responsible for providing critical national systems and providing a large range of products and services underpinning vital operations in the NHS.\n\nThese data-intense services include payments to GPs and managing Patient Registration records.', 'associatedMedia': ['https://imperialcollegehealthpartners.com/discover-now/north-west-london-covid-19-data-repository/', 'https://www.nwlondonccgs.nhs.uk/professionals/whole-systems-integrated-care-wsic-dashboards-and-information-sharing/information-de-identified-users'], 'isPartOf': 'NHAIS'}",601f1504-2706-405b-94cb-8cd14231f434,https://web.www.healthdatagateway.org/dataset/601f1504-2706-405b-94cb-8cd14231f434,"{'access': {'dataProcessor': 'NHS BRENT CCG', 'deliveryLeadTime': '1-2 MONTHS', 'jurisdiction': 'GB', 'accessRequestCost': 'In Progress', 'accessService': ""Researchers will have access to a VDI environment with a specific username and password. The researchers will get access to the datasets that is present in the hub's catalogue and would be able to carry out their research within the safe haven. There are restrictions applied which prevents the researchers from taking data out of the safe haven, once the research/analysis is completed the admin team will need to be contacted for taking the analysis off the safe haven"", 'dataController': 'Joint data controller model across North West London', 'accessRights': ['https://imperialcollegehealthpartners.com/discover-now/nwl-covid-data-access/']}, 'usage': {'dataUseRequirements': ['COLLABORATION REQUIRED', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'investigations': ['https://www.registerfordiscover.org.uk/researchers/discover-for-researchers-and-industryect-tracker/'], 'isReferencedBy': ['Not Available'], 'dataUseLimitation': 'NO RESTRICTION', 'resourceCreator': 'NHS Brent CCG\nDiscover-NOW'}, 'formatAndStandards': {'language': 'en', 'conformsTo': 'LOCAL', 'format': ['Excel', 'SQL', 'Tableau', 'R'], 'vocabularyEncodingScheme': ['LOCAL', 'NHS NATIONAL CODES', 'ODS']}}","{'temporal': {'timeLag': '1-2 MONTHS', 'accrualPeriodicity': 'MONTHLY', 'distributionReleaseDate': '2020-05-06', 'startDate': '2020-04-01'}, 'origin': {'purpose': ['CARE', 'ADMINISTRATIVE'], 'collectionSituation': 'OTHER', 'source': 'EPR'}}",2020-06-12T14:08:46Z,"[{'observedNode': 'Persons', 'measuredValue': ' 2,640,926 ', 'disambiguatingDescription': '', 'observationDate': '2020-12-08', 'measuredProperty': 'Count'}]",2.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Long Term Conditions Electronic Frailty Index Q-Admissions Patient Segments Risk Segments']}",2021-03-01T10:25:11Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 16, 'structuralMetadata.columnName': 16, 'structuralMetadata.columnDescription': 16, 'structuralMetadata.dataType': 16, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '8a0f2083-93fd-4629-a9e3-36f9c7776609', 'description': 'NHAIS Patient List', 'name': 'NHAIS Data', 'dataElementsCount': 16, 'dataElements': '3e3d4dfb-3d19-4831-9e8c-95b16c40dbf2, 061d8aee-f36c-4c19-a9b1-9701e2f2d022, 185b737d-0fed-4b77-a1f3-093b456b22bb, 661317ac-2c16-48fa-8429-12b450112439, dc540ac0-4179-4950-995d-b828c8cea86a, d5f2d643-4a0a-40f4-b5f9-9d058d918947, d67ff3c4-b779-480f-9d8b-20b36971b856, ece3781f-6004-403d-93c6-4d985e199fec, 38c1f311-25b0-4d86-86dc-fa9e10ad6233, ab9be926-a5b9-4a22-8d21-0971540028ff, 08d6e4e1-cf11-4386-b6e6-f103e605e4f2, 2120a159-450f-4ef8-80bb-0581daa2e9eb, 7173f9e3-2fa2-44c1-8b82-bf4a830bc5d3, abe13056-9b3c-4e00-a184-aa3badb69690, dca802ef-ce1f-47f5-b7de-a7d458720a7c, c4cfd5e8-6bbd-4b0d-9361-76a68e661f2c'}]}"
"{'title': 'Investigating the impact of frailty, age and illness severity during COVID-19', 'publisher': {'memberOf': 'HUB', 'identifier': '607db9c5e1f9d3704d570d5f', 'name': 'PIONEER'}, 'abstract': 'Longitudinal data to investigate interactions of frailty, age and illness severity on outcomes in adults admitted during the COVID-19 pandemic. Clinicians’ frailty scoring versus electronic frailty scoring. Highly granular structured serial data.', 'contactPoint': 'PIONEER@UHB.NHS.UK', 'keywords': ['Frailty index', 'Clinical Frailty Scale', 'COVID-19', 'Hospital outcomes', 'Interventions', 'Elder Care', 'SARS-CoV-2', 'Acute medical care', 'age', 'Illness', 'morbidity', 'symptoms', 'Admissions', 'Acute', 'Sepsis']}",108ba1b0-994d-449c-b192-2331698e477d,"{'pathway': 'Data is representative of the multi-ethnicity population within the West Midlands (42% non white).  Data includes all patients admitted during this timeframe, with National data Opt Outs applied, and therefore is representative of admissions to secondary care.  Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2634343/west-midlands.html'], 'typicalAgeRange': '18-110', 'followup': '1 - 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '729c527a-7946-43d6-86f6-510ea9b3bc80', '2.0.0': '602dc3ef-8c76-4ad4-941b-0a39e50481e7', 'latest': '602dc3ef-8c76-4ad4-941b-0a39e50481e7'}","{'description': 'Frailty is a syndrome of increased vulnerability to incomplete resolution of homeostasis (healing or return to baseline function) following a stressor event (such as an infection or fall) and it is associated with poor outcomes including increased mortality and reduced quality of life. Prevalence increases with age, but it should not be considered an inevitable consequence of ageing.\n\nThe pathophysiology of frailty is poorly understood but the immune and endocrine systems appear to be involved in its development or response. Age and frailty have been proven to be independently predictive of outcomes in patients admitted with an acute illness. \n\nIn COVID-19, routine frailty identification has been used to inform decision making about high level of treatment. This is because frailty usually moderates the effect of age on mortality. Anecdotally, this effect has not been recognised by clinicians looking after older COVID-19 patients. Four papers have been published so far on the effect of frailty on COVID-19 with differing results.  However, all papers show the independent predictive value of age when controlling for frailty, which is not usually seen in studies of age and frailty in other acute illnesses.\n\nPIONEER geography\nThe West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix. \n\nEHR: UHB is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.\n\nScope: All patients aged 18 years and above admitted for an acute illness in hospitals within University Hospitals Birmingham NHS trust during the COVID-19 pandemic. The dataset includes highly granular patient demographics & co-morbidities taken from ICD-10 & SNOMED-CT codes. Serial, structured data pertaining to acute care process (timings, staff grades, specialty review, wards), presenting complaint, acuity, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations), all blood results, imaging reports, all prescribed & administered treatments (fluids, blood products, procedures), all outcomes.\n\nAvailable supplementary data: Matched controls; ambulance, synthetic data.\n\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://www.pioneerdatahub.co.uk/wp-content/uploads/Frailty-COVID-Infographic-V2-page-001.jpg']}",602dc3ef-8c76-4ad4-941b-0a39e50481e7,https://web.www.healthdatagateway.org/dataset/602dc3ef-8c76-4ad4-941b-0a39e50481e7,"{'formatAndStandards': {'language': ['en'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['SNOMED CT'], 'format': ['SQL']}, 'access': {'jurisdiction': ['GB-ENG'], 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'deliveryLeadTime': '1-2 MONTHS', 'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/'], 'dataProcessor': 'NOT APPLICABLE', 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/']}, 'usage': {'resourceCreator': ['This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)'], 'investigations': [''], 'isReferencedBy': ['NOT APPLICABLE'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}}","{'temporal': {'accrualPeriodicity': 'QUARTERLY', 'startDate': '2020-03-05', 'distributionReleaseDate': '2021-05-26', 'timeLag': 'OTHER', 'endDate': '2020-11-05'}, 'origin': {'purpose': ['CARE'], 'source': ['EPR'], 'collectionSituation': ['ACCIDENT AND EMERGENCY', 'IN-PATIENTS', 'OUTPATIENTS']}}",2021-12-20T13:01:48Z,"[{'observedNode': 'EVENTS', 'measuredValue': '73204', 'disambiguatingDescription': '73,204 Acute Hospital Admissions between 05-March-2020 and 05-Nov-2020.', 'observationDate': '26/05/2021', 'measuredProperty': 'Count'}]",2.0.0,{'derivation': ['NOT AVAILABLE']},2022-01-14T10:11:00Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 3, 'structuralMetadata.tableName': 3, 'structuralMetadata.tableDescription': 3, 'structuralMetadata.dataElementsCount': 69, 'structuralMetadata.columnName': 69, 'structuralMetadata.columnDescription': 69, 'structuralMetadata.dataType': 69, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '2a77e5d6-35ac-4e1e-afd5-a08481e561d6', 'description': 'Spell admission details', 'name': 'KamwaAdmission', 'dataElementsCount': 46, 'dataElements': 'be696d88-e374-4495-8252-e47302c03867, 182a45d2-ba2f-4974-a7b0-a0a7774be052, 100d0b76-942c-412b-9413-b261d151c9d9, 8b6756e1-e9a9-418b-a5be-74b18484cf12, cddeb820-5ddd-4619-9b02-c7288dd80c54, aa7af8ac-d33b-470b-9c28-404ea4c941bf, c9df2dc1-53e2-480a-95fa-7859dbbea405, bca10fad-52d6-43b3-b0e4-11fcfa63177b, b1bdcfab-0b2f-443c-8542-cc6e573e1f12, 6cec4485-b99e-4f5a-8303-c6d07885781a, 19491df9-1d97-4458-879f-dd7228805b09, 2b805ddb-9140-4237-98b2-c78cc7c6ea86, 04d86995-c13f-41b8-99ff-a3c90d51f056, b40ce63e-38fe-4686-94dd-6380a15c279f, f16a387e-9454-4ca3-99b8-fa981a62bd4a, 0b84b43e-3fd1-4f04-9175-7373991c6028, 42347e17-aa5c-477d-8d72-2452bffe28ec, d88fdffc-decd-4d86-adc5-4ba0cab7bb53, 52e9282d-1988-4d9c-99be-5aaa0b82f026, 762dbf9a-68e1-4658-b39a-4226f6eab1bc, a0aa81e1-f286-4bc5-8404-09ca2732695c, 5c505740-bd69-4909-afa5-bbd7927d1e88, a9fbb42a-8ceb-4f81-b64b-18a6b448cb7b, d5faad96-5e23-40d5-a150-b16d54aafa08, 8ca17df0-0166-4d1d-bc1c-6301b37da18b, 8ed64753-d972-4a44-93ed-536a42a35a42, 993472d7-4aba-4a88-a362-a8ca32774ba0, 904493dc-9c79-4fca-859f-b1d42fdb5995, 4d28e3cf-77c5-4294-a50c-75129fd56c55, 1c46fbda-dfdb-4731-a980-080d097745ab, ab982f2f-aa49-4a73-93b7-e89d1ae02499, 01e3020d-c223-41a0-a84a-12d1d5a03ef0, 2239fbb2-ea04-45a7-8643-80a523479570, ad7da4f1-78e2-4eb6-9ba1-f8bbdfdc17ec, df8d53be-80f0-4687-a963-9be4f0d74424, b40a0e40-158c-460d-b1cb-8e77c3867fac, 255f6297-5add-4e85-b842-6013b51140d4, d49889c9-e9f0-40f2-b702-44661914d962, 5be488ee-371b-45a4-8bd5-e6947df8cdd0, 6fb83287-99ec-41ec-8af9-cd6ad3348170, f0c464b8-35e5-46e6-866b-d6d178111c29, 5acadbe4-4020-4469-ba51-24bb91969ab6, a111abfb-837b-4411-9ecc-0ae12b679f74, 073e2950-2a7c-4841-acf7-2398bbdf52e8, 60f431d8-c482-4afe-9061-e7d34c598ae2, 9b11b743-fb17-4f17-80d9-6af9b197cacf'}, {'id': 'ace7cb7c-323a-4f80-a409-8db6217777ab', 'description': 'Diagnosis details for each spell', 'name': 'KamwaDiagnosis', 'dataElementsCount': 12, 'dataElements': 'f6dc5307-5a90-4880-9aad-3227917c70b8, 3673a13e-3949-4f11-bdc4-8f35bbc8dbc5, ebf9f863-fb05-47fe-aa43-559fa56717e4, c6b461c9-835f-487b-8845-91b043d09790, a72cc194-c44e-4f91-af1e-0bb14134fa4b, 8dda1db7-a3ad-43dc-b570-ea23689e9f3c, 7fe92854-6865-45f2-aee0-4b9731d64158, c1ba8a15-a720-4d28-b221-e2079309be2c, 9f20c78e-50a1-4e91-97f4-e762fe357802, ceb0db62-5f0d-4826-abbe-1b8553010537, 3c498382-acb2-493a-a965-148b92607c31, f781d82a-c3fb-418f-a935-8ccd7c254cd5'}, {'id': '002edc7e-1e16-4c8f-ac89-d3b8c25fb19e', 'description': 'Observation detail for each spell', 'name': 'KamwaObservation', 'dataElementsCount': 11, 'dataElements': 'd6e4ae6c-175c-476c-8c61-23500dfc54ac, 8410e343-52bc-4c22-b39e-602a33e9f005, 0ae53120-749e-42a6-97ea-100185c4acb8, 6c7ac9f3-34cb-4a5a-b6dc-5509a85c7fc3, 55dd3b16-24c2-4d89-a20d-911f75756638, 11984f46-7caf-46fe-a577-cc68346ef052, 2c5be88c-deb2-4ef1-88d1-1c95b2ac0795, 74d633ba-c4cb-48e9-b305-4bbe113b6844, 08d3a668-d990-4ffc-8983-dbac675aafa0, 10b8bc35-0448-4a1e-ab69-b85c086c6a7f, 76fc16a3-3df8-407c-be40-339bf671c94a'}]}"
"{'title': 'STAMPEDE', 'doiName': 'Not Available', 'abstract': 'Collection of samples and data across the following diseases: Malignant tumour of prostate (disorder)', 'publisher': {'contactPoint': 'mrcctu.stampede@ucl.ac.uk', 'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY'}, 'keywords': ['STAMPEDE', 'Malignant tumour of prostate (disorder)', 'UKCRC Tissue Directory'], 'contactPoint': 'mrcctu.stampede@ucl.ac.uk'}",71eb0192-1124-4b27-86e4-1139e0047a02,"{'spatial': 'England', 'typicalAgeRange': '40-150', 'physicalSampleAvailability': ['TISSUE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'f0cbbada-288b-4103-9ac0-0172102f8a5d', '3.0.0': '60b148f7-b48c-49c4-9286-b83691cfc7b2', '1.0.0': '761fd9a8-439a-40f3-a984-f21186b93110', '2.0.0': 'c182a3b6-8eea-43ef-be18-6cd444f150dc', 'latest': '60b148f7-b48c-49c4-9286-b83691cfc7b2'}","{'description': 'In Progress', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",60b148f7-b48c-49c4-9286-b83691cfc7b2,https://web.www.healthdatagateway.org/dataset/60b148f7-b48c-49c4-9286-b83691cfc7b2,"{'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}, 'access': {'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'accessRequestCost': 'Not specified', 'jurisdiction': 'GB-ENG', 'dataController': 'MRC CTU at UCL', 'dataProcessor': 'Not Applicable'}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2006-01-01'}}",2020-01-13T17:16:40Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T16:13:15Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Weekly SUS Inpatient Dataset', 'publisher': {'name': 'DISCOVER NOW', 'memberOf': 'HUB', 'identifier': '607db9c3e1f9d3704d570cfa'}, 'abstract': 'The NWL weekly SUS IP linked table is a weekly submission from our 4 main providers (Imperial College Healthcare Trust, Hillingdon Hospital, Chelsea & Westminister Hospital and London North West Hospital) and contains Inpatient records of care within NWL.', 'keywords': ['hospital admissions', 'Admission', 'Discover-NOW', 'Integrated Care', 'Integrated Care Record', 'Pathway', 'Real World data', 'Linked longitudinal', 'Discover'], 'contactPoint': 'researchers@registerfordiscover.org.uk'}",3858647c-5161-45dc-ba49-66a4fc4499c2,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2646895/hillingdon.html', 'https://www.geonames.org/2634341/city-of-westminster.html', 'https://www.geonames.org/3333157/royal-kensington-and-chelsea.html', 'https://www.geonames.org/3333151/harrow.html', 'https://www.geonames.org/3333132/brent.html', 'https://www.geonames.org/2650567/ealing.html', 'https://www.geonames.org/3333155/hounslow.html', 'https://www.geonames.org/3333149/hammersmith-and-fulham.html'], 'typicalAgeRange': '0-150', 'followup': '> 10 YEARS', 'pathway': 'This dataset contains all Inpatient admissions for NWL patients. Each patient will be identified using an unique patient key, this can be used to link to other Discover-NOW datasets that will help track the patient pathway'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '61b34cfb-041b-46a3-801d-1932b92795b9'},"{'description': 'Initially this data is collected during a patient\'s time at hospital as part of the Commissioning Data Set (CDS). This is submitted to NHS Digital for processing and is returned to healthcare providers as the Secondary Uses Service (SUS) data set and includes information relating to payment for activity undertaken. It allows hospitals to be paid for the care they deliver. \nThis same data can also be processed and used for non-clinical purposes, such as research and planning health services. Because these uses are not to do with direct patient care, they are called \'secondary uses\'. This is the SUS data set.\nSUS data covers all NHS Clinical Commissioning Groups (CCGs) in England, including:\n1. private patients treated in NHS hospitals\n2. patients resident outside of England\n3. care delivered by treatment centres (including those in the independent sector) funded by the NHS\n\nEach SUS record contains a wide range of information about an individual patient admitted to an NHS hospital, including:\n1. clinical information about diagnoses and operations\n2. patient information, such as age group, gender and ethnicity\n3. administrative information, such as dates and methods of admission and discharge\n4. geographical information such as where patients are treated and the area where they live\n\nNHS Digital apply a strict statistical disclosure control in accordance with the NHS Digital protocol, to all published SUS data. This suppresses small numbers to stop people identifying themselves and others, to ensure that patient confidentiality is maintained.\n\nWho SUS is for\nSUS provides data for the purpose of healthcare analysis to the NHS, government and others including:\n\nThe Secondary Users Service (SUS) database is made up of many data items relating to A&E care\ndelivered by NHS hospitals in England. Many of these items form part of the national Commissioning Data Set (CDS), and are generated by the patient administration systems within each hospital.\n1. national bodies and regulators, such as the Department of Health, NHS England, Public Health England, NHS Improvement and the CQC\n2. local Clinical Commissioning Groups (CCGs)\n3. provider organisations\n4. government departments\n5. researchers and commercial healthcare bodies\n6. National Institute for Clinical Excellence (NICE)\n7. patients, service users and carers\n8. the media\n\nUses of the statistics\nThe statistics are known to be used for:\n1. national policy making\n2. benchmarking performance against other hospital providers or CCGs  \n3. academic research\n4. analysing service usage and planning change\n5. providing advice to ministers and answering a wide range of parliamentary questions\n6. national and local press articles\n7. international comparison\n\nMore information can be found at \nhttps://digital.nhs.uk/data-and-information/data-tools-and-services/data-services/hospital-episode-statistics\nhttps://digital.nhs.uk/data-and-information/publications/statistical/hospital-accident--emergency-activity""', 'associatedMedia': ['https://imperialcollegehealthpartners.com/discover-now/north-west-london-covid-19-data-repository/', 'https://www.nwlondonccgs.nhs.uk/professionals/whole-systems-integrated-care-wsic-dashboards-and-information-sharing/information-de-identified-users'], 'isPartOf': 'SUS'}",61b34cfb-041b-46a3-801d-1932b92795b9,https://web.www.healthdatagateway.org/dataset/61b34cfb-041b-46a3-801d-1932b92795b9,"{'formatAndStandards': {'vocabularyEncodingScheme': ['NHS NATIONAL CODES', 'LOCAL', 'ICD10'], 'language': ['en'], 'conformsTo': ['LOCAL'], 'format': ['Excel', 'SQL', 'Tableau', 'R']}, 'usage': {'dataUseRequirements': ['COLLABORATION REQUIRED', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'resourceCreator': ['NHS Brent CCG', 'NHS NWL CCG', 'Discover-NOW'], 'dataUseLimitation': ['NO RESTRICTION'], 'isReferencedBy': ['Bottleet al. BMC Medical Informatics and Decision Making (2020) 20:71 https://doi.org/10.1186/s12911-020-1082-7'], 'investigations': ['https://www.registerfordiscover.org.uk/researchers/discover-for-researchers-and-industry']}, 'access': {'deliveryLeadTime': '1-2 MONTHS', 'jurisdiction': ['GB'], 'dataController': 'Joint data controller model across North West London', 'dataProcessor': 'North West London CCG\nNorth East London Commissioning Support Unit', 'accessRights': ['https://imperialcollegehealthpartners.com/discover-now/nwl-covid-data-access/'], 'accessService': ""Researchers will have access to a VDI environment with a specific username and password. The researchers will get access to the datasets that is present in the hub's catalogue and would be able to carry out their research within the safe haven. There are restrictions applied which prevents the researchers from taking data out of the safe haven, once the research/analysis is completed the admin team will need to be contacted for taking the analysis off the safe haven""}}","{'origin': {'collectionSituation': ['IN-PATIENTS'], 'purpose': ['CARE', 'ADMINISTRATIVE'], 'source': ['EPR']}, 'temporal': {'timeLag': '1-2 WEEKS', 'startDate': '2021-04-01', 'distributionReleaseDate': '2021-04-01', 'accrualPeriodicity': 'WEEKLY'}}",2022-01-17T10:22:34Z,"[{'observedNode': 'PERSONS', 'disambiguatingDescription': 'Distinct Patients', 'observationDate': '29/11/2021', 'measuredProperty': 'Count', 'measuredValue': '171510'}]",1.0.0,"{'qualifiedRelation': ['Each patient will be identified by an unique patient key that can be used to link to all other datasets available within Discover-NOW hub'], 'tools': ['https://nww.analytics.southlondoncsu.nhs.uk/#/site/ICSAnalytics/views/WaitingListPTL/RTTPopulationHealth?:iid=1'], 'derivation': ['Long Term Conditions', 'Electronic Frailty Index', 'Q-Admissions', 'Patient Segments', 'Risk Segments']}",2022-01-17T10:22:34Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 36, 'structuralMetadata.columnName': 36, 'structuralMetadata.columnDescription': 36, 'structuralMetadata.dataType': 36, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'f6f976b6-6dda-4c3b-92be-9e6833c4a7f8', 'description': 'The NWL weekly SUS Inpatiens linked table is a weekly submission from our 4 main providers (Imperial College Healthcare Trust, Hillingdon Hospital, Chelsea & Westminister Hospital and London North West Hospital) and contains Inpatient records of care within NWL.', 'name': 'sus_cds_weekly_Inpatients', 'dataElementsCount': 36, 'dataElements': '51ac96f0-b848-449e-8b73-88cc61eeaeb1, 2678e72a-e6fd-4ddc-8fdd-eec5fa5000e5, d7a792b9-cf3e-4da6-9228-941c03bfecff, 4928fa46-63cf-40ec-9e89-5911154b4ade, 721fe912-fc0c-4814-85b5-a0ed3904604d, 0316a215-5591-49a6-9e5d-0f549732397b, e7681dc9-9eed-4ef9-bda2-b12f2521f840, 7c9fbe82-5942-4dfc-9ec0-48a033730936, 3dbd4cd2-a92d-4f62-91f7-3e42c8c8f546, 809cdcdc-b5c8-4524-82cb-e50b7be79dc9, e14ddabb-b508-4af9-a695-2631c1b4c60a, 399eb537-d68e-40c6-a12f-a7c513b1cbaa, c3e764bb-2c96-48ae-829f-fb541b57ce90, 8cc586cd-5193-4b7c-87b4-2f14b19e7cc7, c445a876-314f-4890-80c9-04e3fb3b8d16, 5c8cec72-487a-47a8-845a-85ac804dda42, 309e7fe2-9b9e-4526-b1b0-1c49f45763e6, 7e807037-35c8-436a-ac6b-536b50edd41c, 31810b40-2263-4849-9d4b-4c1ff61afb6f, 2d211469-68e7-4130-8918-46b7673ab5a4, 6f3a8e1d-bcaa-4181-bd1a-9de2f7d57370, 2ee2dc99-1f0b-4f24-a93f-b40cca4031be, 3441e445-0b00-4296-9b76-982bd1d7cb39, 4fc3c51f-70b9-497d-8c46-e7c58a1acc47, a53607c0-0720-4ac8-87e7-21f3108ace8a, 7c4ad932-4d38-4120-8cfb-ee29c9cc58a6, 8fd614b0-c4f9-441c-bade-718ecb9fd706, 035c3f64-7609-4560-98e7-1409d17dd172, 8ca6d1e0-5f38-4941-a2b7-76f4f15f4147, deb012f1-8ad4-4e53-af19-54290a188413, dc817561-5f1c-4480-86e0-59aa42aa5271, b14fe769-7677-48e1-913e-c1a14177ce16, ecdfdfc0-1057-44b2-9b2a-e6aeaa780133, 0274d426-3af6-4280-8015-1ce978b69bba, 1eec755f-50f6-4a12-866c-3d746b895353, 6a35a3bf-8d8e-4fa4-8b53-f3900939af9a'}]}"
"{'title': 'COVID-19 Wastewater data', 'publisher': {'memberOf': 'NCS', 'identifier': '5fc12be363eaab9e68dae76e', 'name': 'OFFICE FOR NATIONAL STATISTICS'}, 'keywords': ['Environment', 'COVID-19', ' Health', 'National Core Study', 'NCS'], 'abstract': 'Samples of wastewater are collected 7 days a week from sewage treatment plants across England. Samples are analysed to determine the number of gene copies of SARS-CoV-2 per litre using quantitative Polymerase Chain Reaction (PCR).', 'contactPoint': 'srs.customer.support@ons.gov.uk'}",fa9c25eb-1ce0-4f44-b6a6-46ec8caeef40,"{'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Not applicable', 'followup': 'UNKNOWN', 'spatial': ['https://www.geonames.org/6269131/england.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '9eb84308-a685-4189-9a75-f32fed5b2c4f', '3.0.0': '61df41f6-6d91-4144-b29d-489dd73c48a1', '2.0.0': 'a95be055-c758-45e7-9010-80337239c5e8', 'latest': '61df41f6-6d91-4144-b29d-489dd73c48a1'}","{'description': 'Samples of wastewater are collected 7 days a week from wastewater treatment plants across England. Samples are analysed to determine the number of gene copies of SARS-CoV-2 per litre using quantitative PCR. The N1 abundance is reported as gene copies per litre of wastewater sample collected. No adjustments for analytical efficiency has been applied.\n\nThe dataset captures quality assured data: checked and quality assured molecular and inorganic outputs. The lag from sample collection to sample reported is around 48 hours.', 'isPartOf': 'ONS, COVID'}",61df41f6-6d91-4144-b29d-489dd73c48a1,https://web.www.healthdatagateway.org/dataset/61df41f6-6d91-4144-b29d-489dd73c48a1,"{'access': {'dataController': 'Office for National Statistics', 'accessService': 'The Office for National Statistics Secure Research Service (SRS) gives accredited researchers secure access to de-identified, unpublished data in order to work on research projects for the public good.   Most datasets are available to access through remote access to the SRS. 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"{'title': 'HES Admitted Patient Care data for CPRD Aurum', 'contactPoint': 'enquiries@cprd.com', 'publisher': {'identifier': '607db9c2e1f9d3704d570cee', 'name': 'CPRD', 'memberOf': 'ALLIANCE'}, 'doiName': 'https://doi.org/10.48329/vagx-9d96', 'keywords': ['APC', 'Inpatient', 'Patient', 'Care', 'Admitted', 'HES'], 'abstract': 'CPRD Aurum linked Hospital Episode Statistics Admitted Patient Care (HES APC) data contain details of admissions to, and attendances at, English NHS providers, including admission and discharge dates, diagnoses, procedures and specialists seen under.'}",ed2de8fe-a204-4a4e-bcfa-9e3ad85e2fee,"{'pathway': 'Secondary care', 'spatial': ['https://www.geonames.org/6269131/england.html'], 'typicalAgeRange': '0-115', 'followup': '1 - 10 YEARS', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'4.0.0': '1c942123-845d-4c31-9f04-8e044be00e58', '5.0.0': '62663e36-f8cb-4ca0-9fdf-bca1023726d3', '3.0.0': 'cc3e20da-aca5-471d-a4bb-38e13f350f10', '2.0.0': '12a7f2cb-6c24-48c3-a65b-d7b5ea3a3dea', '1.0.0': 'd2aef3cb-1fec-4270-bb1d-1f7cbbf6ca00', '0.0.1': '1af2e64a-9a21-4bde-a610-e45b9620a072', 'latest': '62663e36-f8cb-4ca0-9fdf-bca1023726d3'}","{'description': 'CPRD Aurum linked Hospital Episode Statistics Admitted Patient Care (HES APC) data contains details of all admissions to, or attendances at English NHS healthcare providers. 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In addition, Augmented care data (intensive and/or high dependency levels of care) and Maternity data are available.', 'associatedMedia': ['https://www.cprd.com/linked-data'], 'isPartOf': 'CPRD Aurum'}",62663e36-f8cb-4ca0-9fdf-bca1023726d3,https://web.www.healthdatagateway.org/dataset/62663e36-f8cb-4ca0-9fdf-bca1023726d3,"{'access': {'jurisdiction': ['GB-ENG'], 'dataProcessor': 'CPRD', 'accessService': 'Access to CPRD data, including UK Primary Care Data, and linked data such as Hospital Episode Statistics, is subject to protocol approval via CPRD’s Research Data Governance (RDG) Process. Independent scientific and patient advice is provided by Expert Review Committees (ERCs) and the Central Advisory Committee (CAC): https://www.cprd.com/research-applications', 'accessRequestCost': ['https://www.cprd.com/pricing'], 'dataController': 'Clinical Practice Research Datalink (CPRD)', 'deliveryLeadTime': 'VARIABLE', 'accessRights': ['HTTPS://CPRD.COM/DATA-ACCESS']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE', 'NO LINKAGE', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'resourceCreator': ['NHS Digital'], 'isReferencedBy': ['Herbert A,Wijlaars L,Zylbersztejn A,Cromwell D,Hardelid P. Data Resource Profile: Hospital Episode Statistics Admitted Patient Care (HES APC). International Journal of Epidemiology,Volume 46,Issue 4,August 2017,Pages 1093 -1093i.'], 'dataUseRequirements': ['GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'investigations': ['https://www.cprd.com/protocol-list']}, 'formatAndStandards': {'conformsTo': ['NHS DATA DICTIONARY'], 'vocabularyEncodingScheme': ['ICD10', 'ICD9', 'ODS', 'OPCS4'], 'language': ['en'], 'format': ['Tab delimited text']}}","{'temporal': {'accrualPeriodicity': 'QUARTERLY', 'distributionReleaseDate': '2022-02-04', 'timeLag': 'MORE 6 MONTHS', 'startDate': '1997-04-01', 'endDate': '2021-03-31'}, 'origin': {'source': ['EPR'], 'collectionSituation': ['IN-PATIENTS'], 'purpose': ['CARE']}}",2020-01-10T18:12:18Z,"[{'observedNode': 'PERSONS', 'measuredValue': 35047612, 'disambiguatingDescription': 'Number of CPRD Aurum patients matched to single HES identifier ', 'observationDate': '04/02/2022', 'measuredProperty': 'Count'}]",5.0.0,"{'qualifiedRelation': ['CPRD Aurum', 'CPRD Aurum SGSS', 'CPRD Aurum CHESS', 'CPRD Aurum ICNARC', 'Death Registration data for CPRD Aurum', 'HES Outpatient data for CPRD Aurum', 'HES Accident and Emergency data for CPRD Aurum', 'HES Diagnostic Imaging Dataset for CPRD Aurum', 'Patient postcode linked deprivation measures for CPRD Aurum', 'Practice postcode linked deprivation measures for CPRD Aurum', 'Rural-Urban classification for CPRD Aurum', 'Cancer registration data for CPRD Aurum', 'National Radiotherapy Dataset (RTDS) for CPRD Aurum,Systemic Anti-Cancer Treatment (SACT) data for CPRD Aurum', 'Mental Health Dataset (MHDS) for CPRD Aurum'], 'tools': ['[]'], 'derivation': ['N/A']}",2022-02-18T12:04:11Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 11, 'structuralMetadata.tableName': 11, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 170, 'structuralMetadata.columnName': 170, 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"{'title': 'GENOMICS ENGLAND 100K PHE LINKED DATA', 'publisher': {'name': 'GENOMICS ENGLAND', 'contactPoint': 'gecip-help@genomicsengland.co.uk', 'memberOf': 'ALLIANCE'}, 'keywords': ['genome', 'genomics', 'data', 'DNA', 'Public Health England', 'DATA-CAN'], 'contactPoint': 'gecip-help@genomicsengland.co.uk', 'abstract': 'This dataset brings together data from more than 500 local and regional datasets to build a picture of an individual’s treatment from diagnosis. Available for patients diagnosed with Cancer (ICD10 C00-97, D00-48) from 1 January 1995 -31 December 2017.', 'doiName': 'Not Available'}",ea748742-568a-46e2-b603-2fada49024e1,"{'physicalSampleAvailability': ['DNA'], 'followup': '> 10 YEARS', 'pathway': 'Secondary care cancer pathways.', 'typicalAgeRange': '0-150', 'spatial': 'England, UK'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '5bbf533f-23f8-4b61-8a8f-bd1692bfa04c', '2.0.0': '62c01293-83a5-4d4d-9d36-9d7aa2bf120f', '1.0.0': 'e0c871f9-b63c-43a5-9fd6-e5731dae2343', 'latest': '62c01293-83a5-4d4d-9d36-9d7aa2bf120f'}","{'description': ""Available for patients diagnosed with Cancer (ICD10 C00-97, D00-48) from 1 January 1995 - 31 December 2017\n        \n        This dataset brings together data from more than 500 local and regional datasets to build a picture of an individual’s treatment from diagnosis. Please note that pseudo_tumour_ids in AV tables and in SACT are assigned to participants by NCRAS and do not link to the tumour_ids assigned by GeL for sequencing and clinical data. Whilst (particularly in the case of single tumour) this may refer to the same cancer, caution should be applied prior to any analysis.\n        \n        av_patient\t\n        \n        Patient information - demographics and death details.\n        av_tumour\t\n        \n        Tumour catalogue and characterisation for all patients with registerable tumour. Table's <pseudo_tumour_id> is used to link treatment tables also available in NCRAS. One row per tumour (av* table specific pseudo_tumour_id), per participant at the point of registration of that cancer/tumour with NCRAS.  \n        \n        av_treatment\t\n        \n        Tumour linked catalogue of treatments and sites that provided them for all patients with registerable tumour. \n        \n        av_imd\t\n        The Income Deprivation Domain (IMD table) measures the proportion of the population experiencing deprivation relating to low income. The definition of low income used includes both those people that are out-of-work and those that are in work but who have low earnings.\n        \n        av_rtd\t\n        Routes to Diagnosis: cancer registration data are combined with Administrative Hospital Episode Statistics data, Cancer Waiting Times data and data from the cancer screening programmes. Using these datasets cancers registered in England which were diagnosed in 2006 to 2016 are categorised into one of eight Routes to Diagnosis. The methodology is described in detail in the British Journal of Cancer article 'Routes to Diagnosis for cancer - Determining the patient journey using multiple routine datasets'.\n        cwt\n        \n        The National Cancer Waiting Times Monitoring Data Set supports the continued management and monitoring of waiting times\n        \n        sact\n        \n        Systemic Anti-Cancer Therapy (chemotherapy detail) data for cancer participants from PHE covering regimens between 03/2015 and 12/2017. One row per chemotherapy cycle, per tumour (SACT-specific pseudo_tumour_id), per participant.  \n        \n        rtds\n        \n        The Radiotherapy Data Set (RTDS) standard (SCCI0111) is an existing standard that has required all NHS Acute Trust providers of radiotherapy services in England to collect and submit standardised data monthly against a nationally defined data set since 2009. The purpose of the standard is to collect consistent and comparable data across all NHS Acute Trust providers of radiotherapy services in England in order to provide intelligence for service planning, commissioning, clinical practice and research and the operational provision of radiotherapy services across England.\n        \n        Data is available from 01/04/2009. The data is linked at a patient level and can be linked to the latest available av_patient table.\n        \n        ncras_did\n        \n        The Diagnostic Imaging Dataset (DID) is a central collection of detailed information about diagnostic imaging tests carried out on NHS patients, extracted from local radiology information systems and submitted monthly. The DID captures information about referral source, details of the test (type of test and body site), demographic information such as GP registered practice, patient postcode, ethnicity, gender and date of birth, plus data items about different events (date of imaging request, date of imaging, date of reporting, which allows calculation of time intervals.\n        \n        Data is available for patients diagnosed between 1 January 2013 and 31 December 2015.\n        \n        lucada_2013\tThe National Lung Cancer Audit (LUCADA) looks at the care delivered during referral, diagnosis, treatment and outcomes for people diagnosed with lung cancer and mesothelioma. The data items in the LUCADA dataset have been compiled to meet the requirements of audit, and are not to be confused with the data items identified as Lung Cancer in the National Cancer dataset. The audit focuses on measuring the care given to lung cancer patients from diagnosis to the primary treatment package, assessing against standards and bringing about necessary improvements. The project supports the Calman Hine recommendations, the National Cancer Plan and other national guidance (e.g. NICE guidance) as it emerges.\n        lucada_2014\tAs above. Different schema to lucada_2013."", 'isPartOf': '100k Secondary Linked Medical History Data', 'associatedMedia': ['https://cnfl.extge.co.uk/display/GERE/Genomics+England+Research+Environment', 'https://cb.extge.co.uk/labkey/CohortBrowser/project-begin.view?pageId=Introduction', 'https://youtu.be/Kie3HY8y6AU', 'https://youtu.be/EAjPVcAlGpM', 'https://youtu.be/5QhNjE_hdsQ']}",62c01293-83a5-4d4d-9d36-9d7aa2bf120f,https://web.www.healthdatagateway.org/dataset/62c01293-83a5-4d4d-9d36-9d7aa2bf120f,"{'usage': {'resourceCreator': 'The 100,000 Genomes Project Protocol v3, Genomics England. doi:10.6084/m9.figshare.4530893.v3. 2017.\nPublications that use the Genomics England Database should include an author as: Genomics England Research Consortium. Please see publication policy.', 'isReferencedBy': ['https://www.genomicsengland.co.uk/about-gecip/publications/'], 'dataUseLimitation': 'GENERAL RESEARCH USE', 'dataUseRequirements': ['ETHICS APPROVAL REQUIRED', 'PROJECT SPECIFIC RESTRICTIONS', 'PUBLICATION MORATORIUM'], 'investigations': ['https://research.genomicsengland.co.uk/research-registry/browse/']}, 'access': {'accessService': 'More information about the Genomics England Research Environment can be found here:\nhttps://www.genomicsengland.co.uk/about-genomics-england/research-environment/\nhttps://research-help.genomicsengland.co.uk/display/GERE/1.+The+Genomics+England+Research+Environment\nGenomics England 100k participants have consented to longitudinal lifetime followup and recontact safely through our clinical network.\nBRST (Bioinformatics Research Services) are a team of bioinformatics who know the dataset inside out and provide consultancy projects on a case by case basis.  \nOur network of clinical and medical experts can be made available on case by case basis.\nResearchers have the opportunity to work with our and access the GeCIP network who are a community of world-leading experts in specific cancers and rare diseases.', 'dataController': 'PUBLIC HEALTH ENGLAND', 'dataProcessor': 'GENOMICS ENGLAND', 'jurisdiction': 'GB', 'accessRights': ['https://www.genomicsengland.co.uk/about-gecip/joining-research-community/'], 'deliveryLeadTime': '1-2 MONTHS', 'accessRequestCost': 'Fees will be dependent on the type of access that is necessary. Raw data is not eligible for export. Summary-level data may be exported provided that it is approved through the Genomics England Airlock Process'}, 'formatAndStandards': {'conformsTo': ['LOCAL', 'NHS DATA DICTIONARY'], 'vocabularyEncodingScheme': ['OPCS4', 'READ', 'SNOMED CT', 'NHS NATIONAL CODES', 'ODS', 'ICD10'], 'format': ['Multiple Formats Available'], 'language': 'en'}}","{'temporal': {'startDate': '1995-12-01', 'timeLag': 'VARIABLE', 'endDate': '2017-12-31', 'distributionReleaseDate': '2020-09-03', 'accrualPeriodicity': 'QUARTERLY'}, 'origin': {'purpose': ['DISEASE REGISTRY'], 'collectionSituation': ['CLINIC', 'PRIMARY CARE', 'ACCIDENT AN EMERGENCY', 'OUTPATIENTS', 'IN-PATIENTS', 'SERVICES', 'COMMUNITY', 'HOME', 'OTHER'], 'source': ['EPR', 'ELECTRONIC SURVEY', 'LIMS', 'PAPER BASED', 'FREETEXT NLP', 'MACHINE GENERATED', 'OTHER']}}",2020-04-07T11:38:52Z,"[{'observedNode': 'Persons', 'measuredValue': '71,800', 'disambiguatingDescription': 'Rare Disease Participants', 'observationDate': '2020-09-03', 'measuredProperty': 'Count'}, {'observedNode': 'Persons', 'measuredValue': '17,339', 'disambiguatingDescription': 'Cancer Participants', 'observationDate': '2020-09-03', 'measuredProperty': 'Count'}, {'observedNode': 'Findings', 'measuredValue': '17,891', 'disambiguatingDescription': 'Cancer Germline - Number of genomes', 'observationDate': '2020-09-03', 'measuredProperty': 'Count'}, {'observedNode': 'Findings', 'measuredValue': '19,333', 'disambiguatingDescription': 'Cancer Tumour - Number of genomes', 'observationDate': '2020-09-03', 'measuredProperty': 'Count'}, {'observedNode': 'Findings', 'measuredValue': '74,008', 'disambiguatingDescription': 'Rare Disease - Number of genomes', 'observationDate': '2020-09-03', 'measuredProperty': 'Count'}]",2.0.0,"{'tools': ['https://github.com/genomicsengland'], 'derivation': ['Multiple'], 'qualifiedRelation': ['Not Applicable']}",2021-01-15T10:06:51Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 16, 'structuralMetadata.tableName': 16, 'structuralMetadata.tableDescription': 16, 'structuralMetadata.dataElementsCount': 737, 'structuralMetadata.columnName': 737, 'structuralMetadata.columnDescription': 241, 'structuralMetadata.dataType': 737, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '2ae5ccb6-540d-45ca-ba2a-4dda7fa7bea9', 'description': 'Patient information - demographics and death details.', 'name': 'av_patient', 'dataElementsCount': 22, 'dataElements': 'e3f81f46-5be1-4602-9b17-e3336c3736fc, c28e679d-7d3b-40bc-a4fe-0a415d8badbd, b354540b-a265-48ac-89b2-f420d2ff0d96, 46703700-0e56-4b7f-8002-5c2afde4448e, 2e734627-d7e7-4c17-90f1-6efe2e82afac, c8cbf629-2be5-4db3-80f4-9f5c0b5348b2, 700966b7-ec36-4b71-be1e-0b6d5077af7c, 851b7acc-c076-4f9b-8b1a-b3f5c5a31399, c5dd5b3f-6acc-4b81-a931-eb481b52806c, 472a2c90-5aa0-43a7-b4f8-c6a66b3a5ae8, 5fda4c82-983a-41b4-b9f9-f5c783378041, df458511-9470-4af9-8eac-20ebe607ce6f, 1cd4ea35-dce5-48f7-9efc-16e3aae70d13, a5de1eb8-58e1-40ee-b22e-e3dc9569e1c5, 15ecec4c-84c9-496d-9e16-6866d22c0f3c, 01748244-7d51-4519-a00a-3df2e86237d8, 15534210-d024-4038-a389-702aeb0446e9, bc8f3a4a-48a6-403b-b8f7-b703777e9c43, afe3d82f-f062-4294-ae3b-91b944d118ba, 7c93c4be-6751-4a40-a010-b032ffc650f9, c7efa481-892a-427b-bc63-dee38601ec65, 973245d3-94e0-440c-aa52-5f0fd076d874'}, {'id': '5bbf3f59-75a8-423d-93cd-b8b41f692087', 'description': ""This class was created from the White Rabbit profile data in 'nbocap_patient_stage.tsv'"", 'name': 'nbocap_patient_stage', 'dataElementsCount': 12, 'dataElements': 'cc96629e-abe3-430a-9420-58f2293e37b8, 3d975ff5-83c4-4af9-ba88-e966c8c321d0, f0dba32f-5380-4630-aee3-2a91451bbf3f, bf2e2155-3f0a-47e7-a875-f555a99160d5, 933c957c-1deb-43d6-b9cd-f4ffc3e26730, 538275dc-c8e7-4d20-befe-48fbce4af12f, 72f6160e-5f70-4cff-97ed-7c932431e955, e5a8ecc0-5f64-4997-8342-4248cfc3bf61, 80bd6a8f-c6be-4949-926d-f64d2e48e075, ebf82302-ef51-4986-bbe5-e3c4ab82e6f4, 48ce9753-b4b0-445b-bf34-f20d9fcef37e, 41b5dcfc-5139-4ee5-803a-1cf4f065ac7f'}, {'id': 'fe3aea39-c28d-417e-b36c-f4535f40f30f', 'description': 'The National Lung Cancer Audit (LUCADA) looks at the care delivered during referral, diagnosis, treatment and outcomes for people diagnosed with lung cancer and mesothelioma. 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b47c056d-d5bc-46fb-b035-e7049539d5cc'}, {'id': 'fabec323-8660-4f1c-bf59-741d15bb5f00', 'description': 'The Radiotherapy Data Set (RTDS) standard (SCCI0111) is an existing standard that has required all NHS Acute Trust providers of radiotherapy services in England to collect and submit standardised data monthly against a nationally defined data set since 2009. The purpose of the standard is to collect consistent and comparable data across all NHS Acute Trust providers of radiotherapy services in England in order to provide intelligence for service planning, commissioning, clinical practice and research and the operational provision of radiotherapy services across England.\n\nData is available from 01/04/2009. The data is linked at a patient level and can be linked to the latest available av_patient table.', 'name': 'rtds', 'dataElementsCount': 28, 'dataElements': 'e8f390f6-abd8-4dac-bd54-3e19bd45499c, 9705ee55-ec77-4dd2-9936-5fbd7ad0c2d8, d0bbd47e-1ca6-4402-8fc9-b24d5836d6a6, 2525d780-668c-4090-8d52-381d7fde8426, 482a04ea-ede3-415c-9b4c-f34030fe91e4, b07dc5ed-7dcc-48b5-9045-7513e658e8bc, 3c5c07e7-366e-41e8-94dd-989502d64772, 3cd9003d-15c9-4103-b469-6c8d28dc7545, 430455b7-96b6-4afc-ac9b-180d4ab6a252, 72055f13-73ee-41b1-a68a-071824b2ca2b, 5d77c102-283d-483b-a860-d0f27a030d9b, 23e0b7fa-0e4f-4f71-b7b6-d3e06c79ffde, 59b73b93-701e-4623-a4b0-8a4dcc2c0d3b, 8e01fd00-05bb-41b0-8782-3e1dd0d49ce4, b08cbb5d-6ffc-491f-ad0e-591ea3353c2b, f4e1b5b9-ed07-4a86-a166-0cce23418b8f, 144c266a-9479-45b9-af4b-acc976fd37ef, 1b10cc21-a07d-40e5-b755-3c1416b9ac92, 03f08dea-c84a-4418-8947-c47ce6d94793, 820ddd69-02c6-476c-a5e2-60e1909945fa, 6d1017ea-5b05-4a2e-89de-51c05aa795cb, 29a38b1d-e7af-447f-9d2b-7042b87625b6, 29c11002-a164-4ea5-8985-e862d1212575, 9a9704e8-0adc-49cc-92d4-32630a588cee, 900fa4aa-d501-4fcb-92b3-04c050761208, 01bb3a4b-813c-4550-9f91-17c7039de9e4, a281ed35-bcfe-4a33-bcef-946675c832b7, 6f857e49-8d36-4b73-a7f4-f68f8c99ff0c'}, {'id': '17a0c823-af4d-4e61-801f-86ff00236e07', 'description': 'Introduction\nThe Income Deprivation Domain measures the proportion of the population experiencing deprivation relating to low income. The definition of low income used includes both those people that are out-of-work, and those that are in work but who have low earnings (and who satisfy the respective means tests).\n\nNote: only one deprivation quintile per tumour will be provided to lessen the risk of deductive disclosure created by low level geographies, where there have been unique changes to the Income Deprivation Domain overtime. Where the diagnostic period extends across multiple measurement periods (i.e. 2009-2016), a summary variable will be provided describing this measure at the time the tumour was diagnosed.', 'name': 'av_imd', 'dataElementsCount': 6, 'dataElements': '546ee184-9d98-4642-85f9-bd125ec2fed4, ddf3d2ff-3f68-4000-8c87-f3d831566dfc, 78140dd4-a612-4790-9784-66835a313579, 10695835-6bee-4669-9a00-c47d02e78cd8, 581bd314-a7df-460c-99d1-824c5f73edaa, 353db2dc-58cb-4651-bffa-d7943a7cb50e'}, {'id': 'b97ef03f-c0e1-48a4-b926-f0c3eb432559', 'description': 'The Diagnostic Imaging Dataset (DID) is a central collection of detailed information about diagnostic imaging tests carried out on NHS patients, extracted from local radiology information systems and submitted monthly. 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The data items in the LUCADA dataset have been compiled to meet the requirements of audit, and are not to be confused with the data items identified as Lung Cancer in the National Cancer dataset. The audit focuses on measuring the care given to lung cancer patients from diagnosis to the primary treatment package, assessing against standards and bringing about necessary improvements. The project supports the Calman Hine recommendations, the National Cancer Plan and other national guidance (e.g. NICE guidance) as it emerges.\nAs above. 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"{'title': 'Suspected Cancer Pathway Monthly (SPCM)', 'publisher': {'identifier': '5f3f98068af2ef61552e1d75', 'name': 'SAIL', 'memberOf': 'ALLIANCE'}, 'keywords': ['Anti-Cancer, Cancer, Treatment'], 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'abstract': 'This dataset covers all patients informed they do not have cancer, or patients who started their first definitive treatment.'}",fcf5a844-f48d-428e-aa06-abe64e66185e,"{'spatial': 'https://www.geonames.org/2634895/wales.html', 'followup': 'OTHER', 'pathway': 'Cancer', 'typicalAgeRange': '18-120', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '645168a0-21b1-4e13-85d8-266ad9040af8'},"{'description': 'This dataset covers all patients informed they do not have cancer, or patients who started their first definitive treatment.  Dataset provides context to cancer performance measures included in the NHS activity and performance release, and contains measures about the suspected cancer pathway.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://www.youtube.com/watch?v=ZK9-Jw3uVkw']}",645168a0-21b1-4e13-85d8-266ad9040af8,https://web.www.healthdatagateway.org/dataset/645168a0-21b1-4e13-85d8-266ad9040af8,"{'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'format': ['SQL Database Table'], 'conformsTo': ['LOCAL'], 'language': ['en']}, 'access': {'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'accessRequestCost': ['Data provision is free from SAIL. 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"{'title': 'Intensive Care National Audit and Research Centre (ICCD)', 'publisher': {'identifier': '5f3f98068af2ef61552e1d75', 'name': 'SAIL', 'memberOf': 'ALLIANCE'}, 'abstract': 'Intensive care case mix and activity', 'keywords': ['Intensive Care', 'ICNARC', 'core-res', 'project-specific'], 'contactPoint': 'SAILDatabank@swansea.ac.uk'}",fa8bf269-4769-491b-b398-fa63137d14ab,"{'pathway': 'Intensive Care', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'OTHER', 'typicalAgeRange': '0-150', 'spatial': ['https://www.geonames.org/2634895/wales.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '3c87fdb6-c58a-4827-93c1-d50cfb708761', '2.0.0': '6456c509-aa71-45de-b4f4-251448e45cbc', 'latest': '6456c509-aa71-45de-b4f4-251448e45cbc'}","{'description': 'Intensive care case mix and activity. 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Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.']}}","{'origin': {'source': ['EPR'], 'purpose': ['DISEASE REGISTRY'], 'collectionSituation': ['IN-PATIENTS']}, 'temporal': {'startDate': '2020-03-12', 'distributionReleaseDate': '2022-01-06', 'timeLag': 'LESS 1 WEEK', 'accrualPeriodicity': 'QUARTERLY', 'endDate': '2022-01-03'}}",2021-09-13T14:06:41Z,"[{'observedNode': 'EVENTS', 'measuredValue': '3000000', 'observationDate': '01/09/2021', 'measuredProperty': 'Count', 'disambiguatingDescription': 'Approx 70-80% coverage of Welsh population through GP registrations.'}]",2.0.0,"{'tools': ['https://conceptlibrary.saildatabank.com/'], 'derivation': ['Not Available'], 'qualifiedRelation': ['To any SAIL dataset & reference 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"{'title': 'Trusted Research Environments for CVD-COVID-UK in England, Scotland, and Wales', 'publisher': {'name': 'BHF Data Science Centre', 'memberOf': 'OTHER', 'identifier': '607db9c2e1f9d3704d570ce2'}, 'contactPoint': 'bhfdsc@hdruk.ac.uk', 'keywords': ['BHF', 'CVD-COVID-UK', 'BHF DSC', 'BHF Data Science Centre', 'TRE', 'Trusted Research Environment', 'CVD', 'COVID', 'COVID-19', 'Coronavirus', 'Linked', 'LINKABLE', 'Cardiovascular', 'England', 'Scotland', 'Wales', 'GDPPR', 'HES', 'SUS', 'Dataset', 'SGSS', 'SSNAP', 'Death register', 'EHR', 'CHESS', 'NHSD', 'NHS Digital', 'SAIL', 'Safe Haven', 'ICNARC', 'Heart', 'Heart disease', 'Myocardial', 'Stroke', 'Vascular', 'venous', 'Dispensing', 'Prescribing', 'Primary Care', 'Secondary Care', 'SARS-CoV-2', 'SICSAG', 'SICSAG', 'SMR00', 'SMR01', 'ECOSS', 'APC', 'Outpatients', 'MINAP', 'PCI', 'NICOR', 'PEDW', 'ADBE', 'ADDD', 'ADDE', 'CCDS', 'CENW', 'CTTP', 'CARE', 'CDDS', 'CVSP', 'CVVD', 'EDDD', 'EDDS', 'GPCD', 'HQIP', 'ICCD', 'ICNC', 'MIDS', 'NICO', 'NVR', 'NHFA', 'NACSA', 'NACRM', 'NCHDA', 'OPDW', 'OPRD', 'PATD', 'RTTD', 'SDEC', 'TAVI', 'WASD', 'WDDS', 'WDSD', 'WLGP', 'WRRS', 'LIMS', 'NIMS', 'PILLAR 1', 'PILLAR 2', 'PILLAR 3', 'VACCINATION', 'Vaccination', 'Vaccine', 'vaccine', 'A&E', 'Admitted Patient Care', 'COVID-19 Hospitalisation in England Surveillance System', 'Hospital episode statistics', 'ELECTRONIC HEALTH RECORDS', 'Cardiac', 'Cardiovascular Disease', 'co-morbidities', 'multi-morbidity', 'multimorbidity', 'Research', 'arterial', 'Ischaemia', 'Ischemic heart disease'], 'abstract': ""Linkable health datasets in respective TREs in England, Scotland and Wales, accessible to approved researchers who are members of the BHF Data Science Centre's CVD-COVID-UK consortium.""}",7e5f0247-f033-4f98-aed3-3d7422b9dc6d,"{'pathway': 'Primary care, secondary care, COVID testing, COVID vaccinations, deaths, ITU/HDU admissions, prescribing/dispensing, cardiovascular audits (NICOR), stroke audits (SSNAP), national vascular registry', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150', 'followup': 'OTHER', 'spatial': 'https://www.geonames.org/countries/GB/united-kingdom.html'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '6ec3a47b-447a-4b22-9b7a-43acae5d408f', '1.0.0': '646d65df-fc4c-4680-b949-79ec8f40b406', 'latest': '646d65df-fc4c-4680-b949-79ec8f40b406'}","{'description': 'CVD-COVID-UK, co-ordinated by the British Heart Foundation (BHF) Data Science Centre, is one of the NIHR-BHF Cardiovascular Partnership’s National Flagship Projects.\n\nIt aims to understand the relationship between COVID-19 and cardiovascular diseases such as heart attack, heart failure, stroke, and blood clots in the lungs through analyses of de-identified, pseudonymised, linked, nationally collated health datasets across the four nations of the UK.\n\nThe consortium has over 170 members across more than 40 institutions including data custodians, data scientists with methodological and analytical expertise and clinicians, all of whom have signed up to an agreed set of principles with an inclusive, open and transparent ethos.\n\nApproved researchers access data within secure trusted research environments (TREs) provided by NHS Digital in England, the National Data Safe Haven in Scotland, the SAIL Databank in Wales and the Honest Broker Service in Northern Ireland.\n\nLinked datasets include those from primary and secondary care, COVID lab tests and vaccinations, deaths, critical care, prescribing/dispensing, cardiovascular, stroke and vascular surgical audits.\n\nA list of datasets currently available in each nation’s TRE can be found on associated BHF Data Science Centre webpages (URL as below).', 'associatedMedia': ['https://www.hdruk.ac.uk/projects/cvd-covid-uk-project/'], 'isPartOf': 'CVD-COVID-UK'}",646d65df-fc4c-4680-b949-79ec8f40b406,https://web.www.healthdatagateway.org/dataset/646d65df-fc4c-4680-b949-79ec8f40b406,"{'formatAndStandards': {'conformsTo': ['LOCAL', 'NHS SCOTLAND DATA DICTIONARY', 'OTHER', 'NHS DATA DICTIONARY'], 'vocabularyEncodingScheme': ['OPCS4', 'READ', 'SNOMED CT', 'DM+D', 'ICD10', 'OTHER', 'NHS NATIONAL CODES', 'NHS WALES NATIONAL CODES', 'LOCAL', 'ICD9', 'NHS SCOTLAND NATIONAL CODES', 'ODS'], 'language': ['en'], 'format': ['SQL database table']}, 'usage': {'dataUseRequirements': ['COLLABORATION REQUIRED', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'PUBLICATION REQUIRED', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'resourceCreator': ['NHS Digital, SAIL Databank, Scottish National Data Safe Haven'], 'investigations': ['https://www.hdruk.ac.uk/projects/cvd-covid-uk-project/'], 'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS'], 'isReferencedBy': ['Wood A, Denholm R, Hollings S, Cooper JA, Ip S, Walker V, Denaxas S, Akbari A, Banerjee A, Whiteley W, Lai A, Sterne J, Sudlow C, CVD-COVID-UK Consortium. 2021. Linked electronic health records for research on a nationwide cohort of more than 54 million people in England: data resource. BMJ 2021;373:n826. DOI: https://doi.org/10.1136/bmj.n826']}, 'access': {'accessRequestCost': [''], 'deliveryLeadTime': 'LESS 1 WEEK', 'accessRights': ['https://www.hdruk.ac.uk/projects/cvd-covid-uk-project/'], 'dataController': 'NHS Digital, Public Health Scotland/National Records Scotland, SAIL Databank', 'jurisdiction': ['GB-ENG', 'GB-SCT', 'GB-WLS'], 'accessService': 'Data is accessed within the respective TREs under the arrangements in place with the BHF Data Science Centre for CVD-COVID-UK', 'dataProcessor': 'NHS Digital, Public Health Scotland, SAIL Databank'}}","{'temporal': {'timeLag': 'VARIABLE', 'startDate': '1990-01-01', 'accrualPeriodicity': 'MONTHLY'}, 'origin': {'collectionSituation': ['CLINIC', 'PRIMARY CARE', 'ACCIDENT AND EMERGENCY', 'OUTPATIENTS', 'IN-PATIENTS', 'COMMUNITY', 'PHARMACY'], 'source': ['EPR', 'LIMS'], 'purpose': ['STUDY']}}",2021-02-17T17:53:10Z,"[{'measuredValue': '65000000', 'observedNode': 'PERSONS', 'measuredProperty': 'Count', 'disambiguatingDescription': ""Multiple datasets in each nation's TRE with a population size of up to 57M in England (NHSD), 5.5M in Scotland (Safe Haven) and 3.2M in Wales (SAIL).  Some datasets measure events and will have a significantly larger number of records."", 'observationDate': '01/01/1990'}]",1.0.0,"{'tools': ['https://github.com/BHFDSC'], 'qualifiedRelation': ['']}",2021-06-04T09:43:28Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Civil Registration - Deaths', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '5f86cd34980f41c6f02261f4', 'name': 'NHS DIGITAL'}, 'contactPoint': 'enquiries@nhsdigital.nhs.uk', 'abstract': 'Deaths registration data (all deaths in England and Wales) collected from The Registrar General for England and Wales. Record-level person data set, where a record represents one death registration.', 'keywords': ['Wales Deaths', 'Welsh Deaths', 'Deaths', 'GRO', 'Deceased', 'English Deaths', 'Registered Deaths', 'England Deaths', 'ONS', 'DIGITRIALS', 'NCS', 'National Core Study', 'COVID-19']}",050163dc-1728-4ac5-a7d9-4dd3ca0ca12a,"{'followup': 'OTHER', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'NOT APPLICABLE', 'typicalAgeRange': '0-150', 'spatial': 'https://www.geonames.org/6269131/england.html'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'3.0.0': '059a221b-8452-426a-8bd3-4dcdc880469f', '9.0.0': '649261ce-833f-459e-908c-2ef93c5fed41', '2.0.0': 'd83cc514-3e36-41a8-b9bc-c288265e66cf', '7.0.0': '384176d1-8c17-46e5-8771-7e27fe3b184e', '8.0.0': '4a0668a8-391e-4cfa-aa99-0ab9ba9321ea', '1.0.0': 'bfbf7741-65d1-47e3-92e2-bcf50e8c0c20', '4.0.0': 'd796a1b6-8769-433c-a2cf-6a7b161db1fb', '5.0.0': 'e09ddabc-b0b9-4f9d-af32-97293e0e6cb7', '6.0.0': '54671cc2-614c-487d-89eb-52d94475b24a', 'latest': '649261ce-833f-459e-908c-2ef93c5fed41'}","{'description': 'Deaths registration data (all deaths in England and Wales) collected from The Registrar General for England and Wales. 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Records cover all deaths registered in England & Wales.\nICD coding is 9th and 10th.\n\nhttps://digital.nhs.uk/services/data-access-request-service-dars', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths', 'https://digital.nhs.uk/coronavirus/coronavirus-data-services-updates/mortality-data-review']}",649261ce-833f-459e-908c-2ef93c5fed41,https://web.www.healthdatagateway.org/dataset/649261ce-833f-459e-908c-2ef93c5fed41,"{'access': {'accessRights': ['https://digital.nhs.uk/services/data-access-request-service-dars'], 'jurisdiction': ['GB-GB', 'GB-EA'], 'accessRequestCost': ['https://digital.nhs.uk/services/data-access-request-service-dars/data-access-request-service-dars-charges'], 'dataProcessor': 'NOT APPLICABLE', 'accessService': 'Once your DARS application has been approved, data will be made available either by secure file transfer or through the Data Access Environment (DAE).\n\nSecure file 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"{'title': 'Welsh Cancer Intelligence and Surveillance Unit (WCSU)', 'publisher': {'identifier': '5f3f98068af2ef61552e1d75', 'memberOf': 'ALLIANCE', 'name': 'SAIL'}, 'abstract': 'The Welsh Cancer Intelligence & Surveillance Unit (WCISU) is the National Cancer Registry for Wales and its primary role is to record, store and report on all incidence of cancer for the resident population of Wales wherever they are treated.', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'keywords': ['CANCER', 'SAIL', 'WCSU', 'core-res', 'WCISU']}",368ad790-3ad8-4f93-9a7c-0bfb64dc6015,"{'pathway': 'All pathways about cancer', 'followup': 'UNKNOWN', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150', 'spatial': 'https://www.geonames.org/2634895/wales.html'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '658c4030-3a6d-4e67-abea-25601a478861'},"{'description': 'The Welsh Cancer Intelligence & Surveillance Unit (WCISU) is the National Cancer Registry for Wales and its primary role is to record, store and report on all incidence of cancer for the resident population of Wales wherever they are treated. Cancer registration in Wales began almost five decades ago and today’s electronic database which holds records going back to 1972 contains in the region of 686,000 records.\n\nWCISU collects data about occurrences of cancer in Welsh residents via direct or indirect submissions from Welsh Hospitals.\n\nStaging of malignant melanoma (ICD 10 code C43), breast (C50), colorectal (C18-C20) and cervix (C53) started in 2001 since this was when we started receiving pathological information. Staging for all other cancers started in 2010.\n\nTreatment information started in 1995.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/'], 'isPartOf': 'NOT APPLICABLE'}",658c4030-3a6d-4e67-abea-25601a478861,https://web.www.healthdatagateway.org/dataset/658c4030-3a6d-4e67-abea-25601a478861,"{'access': {'accessRights': ['https://saildatabank.com/application-process/'], 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'deliveryLeadTime': 'OTHER', 'jurisdiction': ['GB'], 'dataProcessor': 'SAIL Databank', 'dataController': 'NHS Wales’ Informatics Service (NWIS)', 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.']}, 'usage': {'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'RESEARCH SPECIFIC RESTRICTIONS'], 'isReferencedBy': ['Boyce et al., (2019); Inequalities in health? An update on the effect of social deprivation for patients with breast cancer in South East Wales. https://doi.org/10.1016/j.surge.2018.05.004'], 'resourceCreator': ['Welsh Cancer Intelligence & Surveillance Unit (WCISU) which is a part of Public Health Wales (PHW)'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'language': ['en'], 'format': ['SQL database table']}}","{'origin': {'source': ['EPR'], 'collectionSituation': ['PRIMARY CARE'], 'purpose': ['STUDY', 'DISEASE REGISTRY']}, 'temporal': {'startDate': '1994-01-01', 'timeLag': '1-2 MONTHS', 'accrualPeriodicity': 'ANNUAL', 'endDate': '2021-02-04', 'distributionReleaseDate': '2019-05-31'}}",2021-12-21T14:31:55Z,"[{'observedNode': 'EVENTS', 'measuredValue': '714794', 'disambiguatingDescription': 'The Welsh Cancer Intelligence & Surveillance Unit (WCISU) is the National Cancer Registry for Wales and its primary role is to record, store and report on all incidence of cancer for the resident population of Wales wherever they are treated.', 'observationDate': '20/07/2021', 'measuredProperty': 'Welsh Cancer Neoplasm and Treatment Events'}]",9.0.0,"{'tools': ['https://conceptlibrary.saildatabank.com/'], 'qualifiedRelation': ['Yes. 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"{'title': 'Diagnostic and Therapy Services Waiting Times', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'SAIL', 'contactPoint': 'SAILDatabank@swansea.ac.uk'}, 'abstract': 'Waiting times for diagnostic scans and waiting times for access to therapy services.', 'doiName': 'In Progress', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'keywords': ['Diagnostic', 'Therapy', 'Waiting Times', 'SAIL']}",97896866-ab5e-408a-ac5a-072802db9faf,"{'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'OTHER', 'pathway': 'All diagnostic and therapy pathways', 'spatial': 'Wales'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '10c78ae1-e53a-46fa-81c1-7364c7ae49d4', '4.0.0': '65c8a30c-de2c-47bf-87e4-18c86e75e54a', '1.0.0': '0f7a72ad-8b67-4dcb-a3ca-849dafb50fcd', '3.0.0': '393b666c-157b-4fee-afde-61ff93948f27', '2.0.0': 'f709c58e-ae5b-440b-8db1-d39caf160b17', 'latest': '65c8a30c-de2c-47bf-87e4-18c86e75e54a'}","{'description': 'Capture waiting times for specified diagnostic and therapy services for the NHS in Wales.\n\nMonthly return of counts of waiting times for referrals to specified diagnostic and therapy services submitted by Local Health Boards.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/']}",65c8a30c-de2c-47bf-87e4-18c86e75e54a,https://web.www.healthdatagateway.org/dataset/65c8a30c-de2c-47bf-87e4-18c86e75e54a,"{'formatAndStandards': {'conformsTo': 'LOCAL', 'vocabularyEncodingScheme': 'LOCAL', 'format': ['SQL database table'], 'language': 'en'}, 'usage': {'dataUseRequirements': 'PROJECT SPECIFIC RESTRICTIONS', 'resourceCreator': ['NHS Wales Informatics Service (NWIS)'], 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'RESEARCH SPECIFIC RESTRICTIONS']}, 'access': {'jurisdiction': 'GB', 'accessRequestCost': 'Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.', 'dataController': 'SAIL Databank', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'dataProcessor': 'SAIL Databank', 'accessRights': ['https://saildatabank.com/application-process/'], 'deliveryLeadTime': '2-6 MONTHS'}}","{'temporal': {'timeLag': '2-6 MONTHS', 'accrualPeriodicity': 'QUARTERLY', 'endDate': '2020-05-28', 'startDate': '2005-10-01', 'distributionReleaseDate': '2019-09-12'}, 'origin': {'purpose': ['STUDY', 'DISEASE REGISTRY', 'ADMINISTRATIVE'], 'source': ['LIMS', 'OTHER'], 'collectionSituation': ['CLINIC', 'PRIMARY CARE', 'IN-PATIENTS']}}",2020-01-13T14:47:28Z,"[{'observedNode': 'Persons', 'measuredValue': '1743000', 'disambiguatingDescription': '', 'observationDate': '2020-10-29', 'measuredProperty': 'Count'}]",4.0.0,"{'qualifiedRelation': ['Yes. To any SAIL dataset & reference data'], 'tools': ['https://conceptlibrary.saildatabank.com/'], 'derivation': ['Not Available']}",2020-12-07T18:52:22Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 26, 'structuralMetadata.columnName': 26, 'structuralMetadata.columnDescription': 26, 'structuralMetadata.dataType': 26, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '4ce1440f-6b43-4edb-b087-2b6f66468234', 'description': 'The Diagnostic and Therapies Waiting Times Return relates to patients waiting for specific diagnostic tests and/or therapy services as described by Service Sub-headings.\nThe submission is based on provider and not resident population.', 'name': 'PATIENT_WAITING', 'dataElementsCount': 26, 'dataElements': '3d7f1a6d-8f13-4e16-af67-99f7b2a3bfeb, 7b1f6968-a309-4efd-93d7-6a39d011cf41, 9837f155-f32f-414c-b506-3e22982a15ab, 40c4cd57-463a-4d6b-81a9-31dfa15148c2, 0b014c04-b27e-4dcf-be87-2f545682894a, b69970bf-c02b-42cb-a375-519d35edcc7d, e6e92470-afd7-44e4-a82e-c1b11419de24, 14b0555c-7391-4caf-82ee-b6f4bfd101d7, 920bae76-5fa0-4d90-94e3-f11c38404095, e15a86e0-db19-4af6-aa6c-1b3ae7542af9, 4c742875-2b1c-43f7-8945-2e3db033fd72, b83f567f-f424-4b93-8653-091a919f8ab1, 1dadde6c-a168-4fd4-88ce-a4852f98a9a1, 21395478-ff81-4893-9083-17c0dce70b97, 548ff8f7-4be8-4b24-a9da-41f13aafe65b, d0f24d13-387b-4587-b385-41e2e001641d, 7c742400-74f8-48a6-bd7d-3e0def3c2265, 060fa987-4b90-4e16-8dae-52cf5efe06ba, b9ffdb6c-dd99-4671-9919-74e04d090f89, 276a5c7f-db99-4361-9b1b-ea7b44c3fd11, 9e49ff15-e167-4ad8-918c-64dd19e081ba, fdd90265-f4d1-468c-b289-a0dfb5168e6c, 0a9ae4fc-c1e9-485b-8c34-6a339d2395bc, c13195dd-4c55-46fb-aebb-e4b99522e7aa, e8d60f89-0638-40d4-9e0a-052a9bf943c0, 7b20bed0-77c7-48a8-96db-d790b6a574d8'}]}"
"{'title': 'Careers Wales Dataset (CARW)', 'publisher': {'identifier': '5f3f98068af2ef61552e1d75', 'memberOf': 'ALLIANCE', 'name': 'SAIL'}, 'keywords': ['SAIL', 'CARW', 'Careers Wales', 'core-res'], 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'abstract': 'Careers Wales dataset. Represents interactions and services provided by Careers Wales to clients throughout Wales over the period 01/04/2012 to 31/03/2020.'}",e4004e0e-6adb-4b11-82c2-af0caf61d751,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Not Applicable. 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Between 2012 and the present Careers Wales has worked to rationalise the varied approaches to recording, enhance the quality and suitability of the data they gather, and to simplify the data entry requirements for their staff as far as possible. Therefore users of the data will very likely notice changes over time in the nature of the data.\n\nCareers Wales stores information on all its interactions, services provided, etc. as entities called histories. Within their CRM, different on-screen fields can be enabled or disabled for different history types – therefore a history representing a Group Session would contain information on the duration of the session, the topic and the venue; whereas a history for a Traineeship Referral Form completion would not display any of these fields.\n\nAll the numerically coded columns in Careers Wales’ supplied data can be decoded via the accompanying lookup file - HISTORIES_LOOKUP_1545_20200821.CSV.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/'], 'isPartOf': 'NOT APPLICABLE'}",65ce36d2-f5fa-4a10-b210-b917fbb7c8a5,https://web.www.healthdatagateway.org/dataset/65ce36d2-f5fa-4a10-b210-b917fbb7c8a5,"{'usage': {'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'resourceCreator': ['[""Careers Wales""]'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}, 'formatAndStandards': {'language': ['en'], 'format': ['SQL database table'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL']}, 'access': {'accessRights': ['https://saildatabank.com/application-process/'], 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'deliveryLeadTime': '2-6 MONTHS', 'dataController': 'SAIL Databank', 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'dataProcessor': 'SAIL Databank', 'jurisdiction': ['GB-WLS']}}","{'origin': {'source': ['OTHER'], 'collectionSituation': ['OTHER'], 'purpose': ['ADMINISTRATIVE']}, 'temporal': {'startDate': '2004-12-20', 'timeLag': '2-6 MONTHS', 'accrualPeriodicity': 'STATIC', 'endDate': '2020-03-31', 'distributionReleaseDate': '2020-09-30'}}",2021-09-13T14:19:36Z,"[{'observedNode': 'EVENTS', 'measuredValue': '3000000', 'observationDate': '01/09/2021', 'measuredProperty': 'Count', 'disambiguatingDescription': 'Approx 70-80% coverage of Welsh population through GP registrations.'}]",3.0.0,"{'qualifiedRelation': ['Linkable at the person level to any dataset with SAIL anonymised linkage field'], 'derivation': ['Not Available'], 'tools': ['https://conceptlibrary.saildatabank.com/']}",2022-01-04T09:17:58Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 3, 'structuralMetadata.tableName': 3, 'structuralMetadata.tableDescription': 3, 'structuralMetadata.dataElementsCount': 46, 'structuralMetadata.columnName': 46, 'structuralMetadata.columnDescription': 46, 'structuralMetadata.dataType': 46, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '5ef57e33-f622-4838-adaa-39b3d0a8941a', 'description': 'Careers Wales Career Check table.', 'name': 'CAREER_CHECK_DATA_20200821', 'dataElementsCount': 6, 'dataElements': '81d3c2a4-0b4e-4fdb-93d1-7c575b81cdd7, 15cf9d06-682c-4ada-b45c-633eb63a9ca7, fefa9e1a-5308-4098-8378-3e6364ade90c, 65a92d54-a180-4be5-b85b-131007d96253, c4ac1444-e822-435c-b436-e4f8051ee5db, cac53bfc-13c1-412e-a510-ed2cf81a5d65'}, {'id': '3c6a76a3-2334-4c68-9532-f933fa39d391', 'description': 'Careers Wales Alf table.', 'name': 'CW_ALF_20200902', 'dataElementsCount': 14, 'dataElements': '650dab64-d3a4-4844-9957-755c78ced978, 31f2b65e-8c9c-4b7a-a282-582b32570fcc, ca87a05e-a3c3-476f-8e6d-a96f4252c6db, 5b492d62-1d89-4d1b-8e3d-d1f631309fa6, 52c4e0f5-3bcb-469b-a4bb-5d9c32415fd5, b3f5dbf1-6259-4c8e-ab36-66e2cd575c71, deeb06e7-4ada-42f9-8c59-3df76f4443e3, a433c8f1-57c7-402b-814e-1a211f9a2be6, 087e598a-8ead-4ffd-8fbb-d993730ab0ff, 10302ad0-5150-424f-b6fc-63d1fa61cb33, 20f31088-a691-4b67-b61b-1af1c86315af, 771500f2-3ed1-4a57-ac91-45b3f34ec4af, 9862110c-fdb4-408e-8aca-6e53d627a785, 53ef3a5c-4570-41ad-81ce-5c2fd7cc949b'}, {'id': 'f3881e91-9a87-4edf-b445-5286f4772576', 'description': 'Careers Wales Histories/ Activity table.\n\nCareers Wales stores information on all its interactions, services provided, etc. as entities called histories. 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"{'title': 'Falls and Fragility Fracture Audit  Programme - Inpatient Falls clinical dataset', 'publisher': {'name': 'HQIP', 'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d23'}, 'contactPoint': 'DataSharing@hqip.org.uk', 'abstract': 'The FFFAP NAIF is a continuous, record-level audit of falls prevention prior to the hip fracture and post-falls care, for inpatient falls within acute, community and mental health hospital care in  England and Wales. Data collection started January 2019.', 'keywords': ['Audit', 'FFFAP', 'Fall', 'Fragility', 'Inpatient Falls', 'Clinical', 'Dataset']}",3c19e2c9-96d5-45f3-9c55-fc3cec762cd7,"{'typicalAgeRange': '60-150', 'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': '0 - 6 MONTHS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '65eaa19c-e4b6-4611-922a-4be585a6d348'},"{'description': 'The FFFAP NAIF is a continuously ascertained, record-level audit which evaluates both falls prevention activity prior to the hip fracture and post-falls care, when inpatients have fallen within acute, community and mental health hospital care in England and Wales. Data collection started in January 2019.', 'associatedMedia': ['https://www.hqip.org.uk/a-z-of-nca/falls-and-fragility-fractures-includes-the-hip-fracture-database/#.YKJrbahKiUk'], 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",65eaa19c-e4b6-4611-922a-4be585a6d348,https://web.www.healthdatagateway.org/dataset/65eaa19c-e4b6-4611-922a-4be585a6d348,"{'usage': {'resourceCreator': ['Data has been provided by the Healthcare Quality Improvement Partnership from the Falls and Fragility Fractures Audit Programme'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE'], 'dataUseLimitation': ['NO RESTRICTION']}, 'access': {'dataProcessor': 'RCP London and Crown Informatics', 'accessRequestCost': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data', 'https://www.rcplondon.ac.uk/guidelines-policy/applying-work-falls-and-fragility-fracture-audit-programme-data'], 'accessRights': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data', 'https://www.rcplondon.ac.uk/guidelines-policy/applying-work-falls-and-fragility-fracture-audit-programme-data'], 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England', 'jurisdiction': ['GB-EAW'], 'deliveryLeadTime': 'VARIABLE'}, 'formatAndStandards': {'vocabularyEncodingScheme': ['OTHER'], 'conformsTo': ['OTHER'], 'language': ['en'], 'format': ['CSV']}}","{'temporal': {'accrualPeriodicity': 'DAILY', 'timeLag': 'VARIABLE', 'startDate': '2019-01-01'}, 'origin': {'source': ['ELECTRONIC SURVEY', 'OTHER'], 'purpose': ['AUDIT'], 'collectionSituation': ['IN-PATIENTS']}}",2021-10-28T13:18:22Z,"[{'observedNode': 'EVENTS', 'measuredValue': 95, 'disambiguatingDescription': 'Percent of acute trusts / health boards in England and Wales submitting data', 'observationDate': '01/05/2018', 'measuredProperty': 'count'}]",4.0.0,"{'derivation': ['Not known'], 'qualifiedRelation': ['Data linked with that from other custodians may be available, but the release of linked data will be subject to the separate permission of all relevant data controllers.']}",2021-10-28T13:18:22Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 12, 'structuralMetadata.columnName': 12, 'structuralMetadata.columnDescription': 12, 'structuralMetadata.dataType': 12, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '293278fc-9aed-4d56-8eac-e2c94f87508b', 'description': 'NAIF descriptive data for 1 Jan 2019 - 31 Jan 2019', 'name': 'NAIF metadata', 'dataElementsCount': 12, 'dataElements': '020a66ab-d8f5-4f0e-aaf3-c5d488c42aea, 60eed60f-85ff-4578-bd49-ae5a972ebde2, 57dc2296-649e-4330-92b4-7fd1076d222e, 5e90d62b-af0e-411c-b772-615e14610b26, 22993315-6a8b-462d-91bc-8b8b4dad188c, 1a3fcd5f-7a4c-4f4e-8e33-7b6579c2a2c6, 8b68481e-2159-4ad1-a399-c536c8e43040, a30d7d22-c70c-4c33-af43-7a78020a3f2c, e73b02bd-41e5-45a1-8a18-8837c33531a2, f523b191-716a-44e1-8270-e9d118371ff6, 6d3f22de-5744-4d56-b155-ddc446e4063d, f3ab4b66-e978-46bf-9842-f3a1a13affb6'}]}"
"{'title': 'Fife Microbiology Lab', 'abstract': 'NHS Fife Microbiology laboratory samples and tests data.', 'contactPoint': 'hicsupport@dundee.ac.uk', 'keywords': ['microbiology', 'HIC', 'SCOTLAND', 'Fife', 'NHS'], 'publisher': {'identifier': '607db9c4e1f9d3704d570d1f', 'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE', 'memberOf': 'ALLIANCE'}}",0c43c0b6-de3a-478b-8190-4da37fbe5ff5,"{'pathway': 'ALL primary and secondary care LIMS records for Fife', 'followup': 'UNKNOWN', 'spatial': ['http://www.geonames.org/2649469/fife.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '6615ba0a-9bcf-4a3b-8204-283c5e741b2b'},"{'description': ""Data on specimens for microbiology testing.  If an organism/bacteria is found this is isolated within the sample and results of the organism's growth status under the application of various antibiotics are recorded.\n\nThis dataset also contains free text laboratory comments, adding additional details about the specimens supplied."", 'isPartOf': 'University of Dundee Health Informatics Centre'}",6615ba0a-9bcf-4a3b-8204-283c5e741b2b,https://web.www.healthdatagateway.org/dataset/6615ba0a-9bcf-4a3b-8204-283c5e741b2b,"{'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'format': ['CSV', 'Database']}, 'usage': {'dataUseRequirements': ['DISCLOSURE CONTROL'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['NHS Fife']}, 'access': {'accessRequestCost': ['Quotation available on request'], 'accessRights': ['https://www.dundee.ac.uk/hic/governanceservice/'], 'dataProcessor': 'University of Dundee, Health Informatics Centre', 'accessService': 'HIC has implemented a remote-access Trusted Research Environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details are available via the following link:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/', 'dataController': 'Local NHS boards', 'deliveryLeadTime': '2-4 WEEKS', 'jurisdiction': ['GB-SCT']}}","{'origin': {'collectionSituation': ['SERVICES'], 'source': ['LIMS'], 'purpose': ['CARE']}, 'temporal': {'timeLag': 'NOT APPLICABLE', 'startDate': '2006-06-01', 'endDate': '2018-01-01', 'accrualPeriodicity': 'STATIC', 'distributionReleaseDate': '2021-09-28'}}",2021-11-19T16:18:23Z,"[{'observedNode': 'PERSONS', 'measuredValue': '129000', 'disambiguatingDescription': '129,000 persons in the dataset', 'observationDate': '28/09/2021', 'measuredProperty': 'Count'}, {'observedNode': 'EVENTS', 'measuredValue': '1054000', 'disambiguatingDescription': '1,054,000 records in the dataset', 'observationDate': '12/11/2021', 'measuredProperty': 'Count'}]",4.0.0,,2021-11-19T16:18:23Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 10, 'structuralMetadata.columnName': 10, 'structuralMetadata.columnDescription': 10, 'structuralMetadata.dataType': 10, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '9af84a83-aeb3-4877-9c0c-962fdbbcbd15', 'description': ""Links a specimen to a test code and it's description.  Result is stored as a free text comment field, so may need to be interpreted by the data users.  Many of these results are comments about the samples.  This dataset pulls the CHI and Sample Date fields from the Lab dataset for convenience."", 'name': 'Microbiology - Fife Test', 'dataElementsCount': 10, 'dataElements': 'cc72c584-5203-4f53-9424-fb66aebdd96f, fa0c5453-1819-4a19-ad24-e6f3fe06d597, 56689d27-08cc-4827-9dd8-f558ad450101, 5b9d9364-07a2-43ea-82a6-868d2e3a2cae, 50d6b5d8-a584-4f61-a08b-2e8f87035168, a6e5ed70-2f3b-4fa0-a62c-527006f8670c, 7b504507-4d20-4169-a3c6-f61729f8984f, 0ae330a7-b485-4448-a3d6-5820efc50935, 67df84ce-c0de-4659-9330-88b679c48771, 436ddc6d-8330-46fa-b708-9ca39cebb517'}]}"
"{'title': 'Theory of Planned Behaviour Intervention: respiratory disease in South India', 'publisher': {'memberOf': 'HUB', 'contactPoint': 'RESPIRE@ed.ac.uk', 'name': 'BREATHE'}, 'contactPoint': 'RESPIRE@ed.ac.uk', 'keywords': ['theory', 'southern Indian', 'Chronic Respiratory Disease', 'India', 'RESPIRE', 'planned behaviour', 'rural', 'BREATHE', 'educational intervention'], 'abstract': 'Development and pilot testing of Theory of Planned Behaviour based educational intervention to improve knowledge, attitude and health behaviour in people with chronic respiratory disease: A study in southern Indian rural community'}",7d23e729-72b0-4dd1-820d-07697b49acd0,"{'spatial': 'India', 'typicalAgeRange': '>18', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '47e9fa0a-d74f-43bc-ae63-0eb33f354f01', '1.0.0': '661b27db-38d4-4a9c-ac40-e3146ef12350', 'latest': '661b27db-38d4-4a9c-ac40-e3146ef12350'}","{'description': 'Chronic respiratory diseases (CRDs) in low resource settings are neglected and often poorly diagnosed, leading to missed opportunities for early initiation of treatment and poor patient pathways. For example, in India, lung cancer often emerges on a background of chronic respiratory symptoms and is often not diagnosed at all – or at a very late stage. Because of late presentation and a range of other factors, survival from lung cancer in India is very low. At present we know very little about how knowledge and attitudes relating to CRD in poor, rural populations in India might be influenced by health and behavioural interventions. Psychological theory-based interventions must be culturally appropriate and grounded in the local context. As such, it’s vital we develop this understanding if we are to change behaviours and reduce exposure to common risk factors, such as smoking and indoor cooking smoke.\n\nThe PhD study aims to gather evidence through systematic review of literature about TPB based health interventions and conduct qualitative studies to inform the which constructs of TPB are important in developing an educational intervention which can effectively change the knowledge, attitude and health behaviour of people with CRD in these low resource settings. \n\nFor further information, see: https://www.ed.ac.uk/usher/respire/phd-studentships/biswajit-paul', 'isPartOf': 'BREATHE'}",661b27db-38d4-4a9c-ac40-e3146ef12350,https://web.www.healthdatagateway.org/dataset/661b27db-38d4-4a9c-ac40-e3146ef12350,"{'usage': {'resourceCreator': 'RESPIRE Collaboration'}, 'formatAndStandards': {'language': ['en'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL']}, 'access': {'dataController': 'RESPIRE', 'dataProcessor': 'RESPIRE', 'deliveryLeadTime': 'OTHER', 'accessRights': 'Access is managed on a project-by-project basis. Contact the RESPIRE team: https://www.ed.ac.uk/usher/respire/about/projects', 'jurisdiction': 'IN'}}","{'temporal': {'startDate': '2018-04-01', 'endDate': '2021-03-30'}}",2020-09-02T09:42:24Z,,1.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-04-14T08:28:25Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'interNational Anaplastic Thyroid Cancer Tissue Bank (iNATT)', 'contactPoint': 'laura.moss@wales.nhs.uk', 'abstract': 'Collection of samples and data across the following diseases: Malignant tumour of thyroid gland (disorder)', 'publisher': {'name': 'TISSUE DIRECTORY', 'contactPoint': 'laura.moss@wales.nhs.uk', 'memberOf': 'ALLIANCE'}, 'doiName': 'Not Available', 'keywords': ['Bank', 'Anaplastic', 'iNATT', 'interNational', 'Tissue', 'Malignant tumour of thyroid gland (disorder)', 'UKCRC Tissue Directory', 'Cancer', 'Thyroid']}",5ef75d71-73ce-4451-9d7a-a39dd82b712f,"{'physicalSampleAvailability': ['TISSUE'], 'typicalAgeRange': '40-150', 'spatial': 'Wales'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'b9633659-338b-4b4a-9bfc-e92ba6b67206', '3.0.0': '6620b221-6909-4106-a49e-f1b5820be2f3', '0.0.1': 'd3039e93-f730-4de6-a514-14659a5e4306', '2.0.0': 'dd7e56e7-2683-4b88-bed2-3a27ef3e4c9e', 'latest': '6620b221-6909-4106-a49e-f1b5820be2f3'}","{'description': 'The primary objective is to establish an international anaplastic thyroid cancer tissue collection to facilitate research. Patients have the option to donate blood samples and clinical data. \nResearch proposals will be accepted from academic and industry research parties from the UK and internationally. All research proposals will be submitted to the multidisciplinary iNATT Steering Committee for assessment. \nAs the volume of tissue collected per patient is expected to be of small volume, by virtue of the specimen comprising core biopsy or fine needle aspirate material, research proposals will be prioritised according to the potential clinical benefits. Research proposals will require ethical approval and the relevant research and development permissions prior to commencement.\nClinicalTrials.gov Identifier: NCT01774279', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",6620b221-6909-4106-a49e-f1b5820be2f3,https://web.www.healthdatagateway.org/dataset/6620b221-6909-4106-a49e-f1b5820be2f3,"{'access': {'dataController': 'Velindre NHS Trust', 'accessRequestCost': 'Not specified', 'dataProcessor': 'Not Applicable', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'jurisdiction': 'GB-WLS'}, 'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}}","{'temporal': {'startDate': '2013-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:05:22Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T16:03:19Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'The Royal College of General Practitioners (RCGP) Research and Surveillance Centre (RSC) primary care sentinel network and database', 'publisher': {'contactPoint': 'practiceenquiries@phc.ox.ac.uk', 'memberOf': 'ALLIANCE', 'name': 'ROYAL COLLEGE OF GENERAL PRACTITIONERS'}, 'doiName': 'Not Available', 'abstract': 'The RCGP RSC network database is one of the freshest data sources of primary care data.  Data are refreshed twice weekly. Through our network of we can (1) Identify and recruit patients for trials/studies, (2) Collect specimen, (3) conduct questionnaires.', 'keywords': ['Information Storage and Retrieval - Controlled Vocabulary - Epidemiologic Studies - Cohort Studies - Case-Control Studies - Observational Study - Clinical Trial - Health Care Quality', 'Computerized - Biomedical Ontologies', 'and Evaluation - Immunologic Surveillance - Sentinel Surveillance - Primary Health Care - Medical Record Linkage', 'Medical Records Systems', 'Access'], 'contactPoint': 'practiceenquiries@phc.ox.ac.uk'}",d5049af5-e351-4b22-8f75-6f3dfc96419b,"{'spatial': 'England', 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '6b41863d-690e-492e-8034-303d56f12f22', '2.0.0': '664513d6-d766-461d-a69e-206a928cd14f', '0.0.1': '5b51f492-394e-419b-81d7-04c558001f62', 'latest': '664513d6-d766-461d-a69e-206a928cd14f'}","{'description': 'The Royal College of General Practitioners (RCGP) Research and Surveillance Centre (RSC) nationally representative general practice sentinel network and database\nNational primary care sentinel network:\nThe RCGP RSC is nationally representative a network of over 500 general practices (GP) providing pseudonymised data for weekly surveillance of infectious diseases; our data are also available for quality improvement, research and education.  Research based on the RCGP RSC data have been published in the best journals including BMJ, Lancet and Diabetes Care.\nObservational research\nThe disease surveillance program is commissioned by Public Health England (PHE) and covers 37 infectious diseases including influenza. The RCGP RSC is a nationally representative population.  The RCGP RSC and PHE, and its predecessor organizations have an over 50-year history of collaboration in influenza and respiratory disease surveillance and vaccine effectiveness studies.  Each practice in the network is reported on by all 37 infectious disease on a weekly basis and are graphically compared with the network as a whole (on their own web based dashboard); this drives both quality improvement in clinical care and also raises data quality, with our practice liaison team providing timely support to practices requiring help with any disparities in their information.  Thus, the observational researcher benefits from a data warehouse of patient level records going back decades with consistently coded data, able to support both longitudinal and cross-sectional study designs.\nInterventional research – ambition to be a hub for trials \nThe RCGP RSC has produced a ‘Weekly Return’ of infections and respiratory disease since 1967, though over time it has expanded in terms of size, scope, sample collection and its capability with linking with other datasets. The databases systems at the RCGP RSC can process large numbers of patients’ data rapidly. The typical duration for generating the weekly report is under 4 hours. The weekly report reached its highest denominator of 3 million patients in last week of October 2019.\nThe RCGP RSC hosts Workload Observatory (funded by NHS England) for GPs to understand trends of patients with multiple and more complex conditions. Using disease specific dashboards, general practices are provided weekly updated data quality indicators and comparison with other practices in the RCGP RSC network. This process allows practices to continuously improve their data quality and increase the quality of the RCGP RSC studies over time.\nWe regularly administer questionnaires in our studies and are experienced in collecting samples from our network of practices.  Practice level support from our dedicated practice liaison team is enhanced by our suite of dashboard technologies delivering rapid feedback to each of our practices. Hence combing our expertise in real world data analysis, high frequency of practice support and our continual development of internet-based practice level interaction, we are well placed for providing a low cost pragmatic trials platform for quality improvement studies or as a medicinal trials platform. \n\nClinical concepts are ontologically defined for clinical concepts as part of developing a study protocol.  We have clinical and programming expertise to assist researchers in developing new ontologies for case finding and have a pool of existing ontologies and associated computer algorithms for extracting the data.  \n\n\nWe have ongoing research across a wide range of medical areas, with international collaborations in child health, diabetes and influenza vaccination and have an extensive set of data extraction, processing and analytic procedures we have developed which are readily available to existing and new research collaborators.', 'isPartOf': 'Not Applicable'}",664513d6-d766-461d-a69e-206a928cd14f,https://web.www.healthdatagateway.org/dataset/664513d6-d766-461d-a69e-206a928cd14f,"{'usage': {'isReferencedBy': [""de Lusignan S, Correa A, Smith GE, Yonova I, Pebody R, Ferreira F, Elliot AJ, Fleming DM. RCGP Research and Surveillance Centre: 50 years’ surveillance of influenza, infections, and respiratory conditions. BJGP 2017; 67 (663): 440-441. DOI: https://doi.org/10.3399/bjgp17X692645. Correa A, Hinton W, McGovern A, van Vlymen J, Yonova I, Jones S, de Lusignan S. Royal College of General Practitioners Research and Surveillance Centre (RCGP RSC) sentinel network: a cohort profile. BMJ Open. 2016 Apr 20;6(4):e011092. Hinton W, McGovern A, Coyle R, Thang SH, Sharma P, Correa A, Ferreira F, de Lusignan s. Incidence and prevalence of cardiovascular disease in English primary care: a cross-sectional and follow-up study of the Royal College of General Practitioners (RCGP) Research and Surveillance Centre (RSC)BMJ Open 2018;8:e020282. doi: 10.1136/bmjopen-2017-020282 Whyte, M. B., Hinton, W., McGovern, A., van Vlymen, J., Ferreira, F., Calderara, S., … de Lusignan, S. (2019). Disparities in glycaemic control, monitoring, and treatment of type 2 diabetes in England: A retrospective cohort analysis. PLoS medicine, 16(10), e1002942. doi:10.1371/journal.pmed.1002942 Hill, E. M., Petrou, S., de Lusignan, S., Yonova, I., & Keeling, M. J. (2019). Seasonal influenza: Modelling approaches to capture immunity propagation. PLoS computational biology, 15(10), e1007096. doi:10.1371/journal.pcbi.1007096 Hoang U, James AC, Liyanage H, et al Determinants of inter-practice variation in ADHD diagnosis and stimulant prescribing: cross-sectional database study of a national surveillance network BMJ Evidence-Based Medicine 2019;24:155-161. Feher MD, Munro N, Russell-Jones D, de Lusignan S, Khunti K. Novel diabetes subgroups. Lancet Diabetes Endocrinol. 2018 Jun;6(6):439. doi: 10.1016/S2213-8587(18)30126-8. Pebody, R., Djennad, A., Ellis, J., Andrews, N., Marques, D., Cottrell, S., … Zambon, M. (2019). End of season influenza vaccine effectiveness in adults and children in the United Kingdom in 2017/18. Euro surveillance : bulletin Europeen sur les maladies transmissibles = European communicable disease bulletin, 24(31), 1800488. doi:10.2807/1560-7917.ES.2019.24.31.1800488 Woodmansey C, McGovern AP, McCullough KA, Whyte MB, Munro NM, Correa AC, Gatenby PAC, Jones SA, de Lusignan S. Incidence, Demographics, and Clinical Characteristics of Diabetes of the Exocrine Pancreas (Type 3c): A Retrospective Cohort Study. Diabetes Care. 2017 Aug 31. pii: dc170542. doi: 10.2337/dc17-0542. de Lusignan, S., Correa, A., Dos Santos, G., Meyer, N., Haguinet, F., Webb, R., … Jones, S. (2019). Enhanced Safety Surveillance of Influenza Vaccines in General Practice, Winter 2015-16: Feasibility Study. JMIR public health and surveillance, 5(4), e12016. doi:10.2196/12016 We continue to publish new ontologies in scientific journals and contribute to global repositories of machine processible ontologies, for example: Chronic Kidney disease Cole NI, Liyanage H, Suckling RJ, Swift PA, Gallagher H, Byford R, Williams J, Kumar S, de Lusignan S. An ontological approach to identifying cases of chronic kidney disease from routine primary care data: a cross-sectional study. BMC Nephrol. 2018 Apr 10;19(1):85. https://bioportal.bioontology.org/ontologies/CKDO Asthma Hoang U, Liyanage H, Coyle R, Godden C, Jones S, Blair M, Rigby M, de Lusignan S. Determinants of inter-practice variation in childhood asthma and respiratory infections: cross-sectional study of a national sentinel network. BMJ Open. 2019 Jan 24;9(1):e024372. https://bioportal.bioontology.org/ontologies/AO Infectious Intestinal Disease de Lusignan, S., Shinneman, S., Yonova, I., van Vlymen, J., Elliot, A. J., Bolton, F., … O'Brien, S. (2017). An Ontology to Improve Transparency in Case Definition and Increase Case Finding of Infectious Intestinal Disease: Database Study in English General Practice. JMIR medical informatics, 5(3), e34. doi:10.2196/medinform.7641 Ethnicity Tippu Z, Correa A, Liyanage H, Burleigh D, McGovern A, Van Vlymen J, Jones S, De Lusignan S. Ethnicity Recording in Primary Care Computerised Medical Record Systems: An Ontological Approach. J Innov Health Inform. 2017 Mar 14;23(4):920. https://bioportal.bioontology.org/ontologies/EO""], 'resourceCreator': 'The Royal College of General Practitioners Research and Surveillance Centre (RCGP RSC)'}, 'formatAndStandards': {'vocabularyEncodingScheme': 'SNOMED CT', 'language': 'en', 'format': ['CSV – SQL - XML']}, 'access': {'dataController': 'The Royal College of General Practitioners (RCGP) is a policy level Data Controller for RCGP RSC.  Currently RCGP has a contract with University of Surrey to be the Data Controller holding these data, this is migrating to University of Oxford during 2020.', 'deliveryLeadTime': '2-6 MONTHS', 'jurisdiction': 'GB', 'accessRequestCost': 'Access Request Cost: We don’t aim to charge more than the costs of running the study.The scale and complexity of a study are two of the key determinants driving the cost of a study.  However, we aim to leverage on our previously acquired domain knowledge and experience, including existing ontologies, code lists, data extraction methods and statistical analyses.Observational studies:Data only – cost of the extract, training (if needed) to access our secure network statistical disclosure control prior to data releaseOther requirements – questionnaires, samples, interviewsInterventional studies:In addition to costs indicated as part of observational studies, interventional study costs will be higher, accounting for ongoing monitoring of the intervention with participating RCGP RSC network practices.National observatory – provision:The development of automated reports, in data formats such as XML and/or web-based dashboards, requires additional development and ongoing maintenance and will require additional funding.Benefits to member practices:We generally add a proportionate charge to provide benefits to member practices (and ultimately their patients).  This may often take the form of a dashboard and quality improvement activity, domain related but under the editorial control of RCGP RSC. Costing process Applicants will be responsible for any costs associated with data extraction and other aspects of collaboration. Costs are kept to a minimum. However, a RCGP RSC Practice Development Fund contribution in included to develop benefits and data quality in member practices.  Broadly 10% of the value of contracts is reinvested into member practices, in addition to any payments for research work undertaken. Any potential costs will be discussed at the monthly RCGP RSC Operational meeting, held each month, and researchers will be contacted as soon after the meeting as possible. Data extraction can start once these costs have been through a University approval process and formal agreements are in place.For studies requiring active participation of General Practices, a contribution to cover practice staff members’ time and expenses will be expected.  This is set broadly in line with National Institute for Health Research (NIHR) levels of charges for practice time.Please contact the RCGP RSC team via the webpage https://www.rcgp.org.uk/clinical-and-research/our-programmes/research-and-surveillance-centre.aspx.  Email the data request form, RCGP_RSC_Data_Request_Form.doc to MedicalDirectorRSC@rcgp.org.uk""Applicants can “self-drive” their application process or we offer a “Concierge” service where people pay a team member to process their application on a cost for time basis.', 'accessRights': ['Please complete our data request form at: https://www.rcgp.org.uk/-/media/Files/CIRC/Research-and-Surveillance-Centre/RCGP_RSC_Data_Request_Form_2018.ashx?la=enOur data can be used for SQUIRE purposes:SurveillanceQuality ImprovementResearchEducation There is no restriction on who can use our data, just the purpose.  RCGP Study Approval Committee and possibly Ethical approval will also be required. General information about our network is at: http://www.rcgp.org.uk/rsc.https://clininf.eu/index.php/rcgp-rsc/https://clininf.eu/index.php/wlo/'], 'dataProcessor': 'Not Applicable'}}","{'temporal': {'distributionReleaseDate': '2019-12-11', 'accrualPeriodicity': 'SEMIWEEKLY', 'startDate': '1960-01-01'}}",2020-01-10T18:10:49Z,,2.0.0,"{'derivation': ['The entire database is available to researchers', 'through the data access process (. Pre-defined extracts are available at minimal cost (based on the principle that extraction processes previously developed will be re-used', 'thus incurring minimal cost for future researchers). These pre-defined extracts cover: • Charlson comorbidity score • Frailty index • Extracts of our monitored conditions. • Risk scores including: CHA2DS2–VASc score'], 'qualifiedRelation': ['Data is linked using an NHS Digital approved process. Linkage to : Hospital Episode Statistics (HES) Office for National Statistics (ONS) Cancer registry (CANREG) We can also link to virology samples and genetic data', 'subject to ethical approval']}",2021-02-21T18:00:01Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 4, 'structuralMetadata.tableName': 4, 'structuralMetadata.tableDescription': 3, 'structuralMetadata.dataElementsCount': 85, 'structuralMetadata.columnName': 85, 'structuralMetadata.columnDescription': 9, 'structuralMetadata.dataType': 85, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '1ff11ba0-a22d-4e76-b8bc-f6fd0f4c2fc9', 'description': ""This class was created from the White Rabbit profile data in 'dbo.Event'"", 'name': 'dbo.Event', 'dataElementsCount': 31, 'dataElements': 'ceef70a6-e5a0-4a36-81d7-f8ead764198f, 2beb4b1a-dd6d-4be8-a400-7e4f56595af9, ca254d6b-716e-4b36-b76f-d8fc5727c81d, 507cdba6-40bc-46b3-87d7-3056c9e6c65e, 95ec6dc4-7b98-489a-a72a-9f02fcda9f92, 68557d19-c97a-409e-b576-d9a8fc9513d0, c0ab4ef4-1b7d-4913-8347-0336becf36ff, bfd56e88-e01a-4067-82f6-581e9bc5f5b6, 03153b03-25ff-4ae8-9ad5-5ebc3920eea4, ab6beaa6-e40e-4849-b0c2-ddf62215fcb7, bc5aeeb1-aabd-43bd-98ba-5fb5d4027d67, 14b57174-3b7c-42d8-9322-b97e283989dd, 4bc44957-46bf-4509-b140-ce28da1d2144, 8ab0d7a4-408a-40c5-8304-c12539eb51c9, 91c953f7-afa9-4700-80d7-c64c9a7e0dc5, 6e55b165-f90c-47c7-a31e-8398d0ed2a49, fc714012-10dd-4df4-8275-2cb83bbd29b4, e4724126-a4e8-47c8-8c2f-b60eca24be59, 49844600-f1dc-40c2-ae87-4b0e8001efef, 057cf838-1c86-41ac-a8f5-34c6b8c17211, 89d6535a-833e-4992-9b35-61c65c20c4c6, b5ee6f18-efe4-4b26-9f14-457896f3601e, ee51f8f7-8aab-49ab-a820-25aa65f76595, f153f377-433b-4836-9524-8ddf67f7b113, 912b609a-534d-4991-9cf9-25eb2767402d, c4301df4-97f8-472f-b1e9-abfa4547d01b, 3b9d6cae-93d1-4367-95f7-c038a90208f8, 50985555-7a48-4bc0-9481-47c67aaf35b6, 09fb278d-f027-43f8-9ed6-c24ebc91febd, d675c4c4-b554-4d5e-b469-5fdc4a38d13c, 04bd9f30-522f-49e1-8b0f-255f281b9038'}, {'id': 'c18f5108-13f1-4191-8ec6-34c72095841e', 'description': ""This class was created from the White Rabbit profile data in 'dbo.Prescription'"", 'name': 'dbo.Prescription', 'dataElementsCount': 20, 'dataElements': 'b0031474-169d-44fc-96fa-8df7fa2fa207, 7c9debb4-c0bf-4fbc-a744-4e345a30dabc, c2f14671-74a3-45f4-bcb0-806d84859b5b, 074881a2-862c-4778-a7d7-873ef47c979c, 61b1143c-7dbc-49a1-9e09-4bfc16470ff0, 09fb502d-39ae-4a79-ac44-ebe53d2dfecc, ee61665c-d6c2-4f09-a114-2869f440c661, 98600f5c-d3c9-41a8-af0f-a654dbf6b84c, 72932ab6-7260-4d2a-833c-b85e295c77fd, c55a8482-cf31-4688-aec6-51f1eff0e5c5, 69e2b620-5dd7-4cad-b33b-616e9334754a, 2f36269f-f28c-4868-9470-69b63cf4f306, 4f8f27d8-d86f-423d-b646-cbb9c0a55736, 3f0f670d-a605-440c-83d6-40f7f2ec9844, 8d9111e2-a90f-4353-bad2-83b32ab0c662, 3d6c5fa9-8c47-41f9-bfc2-c222c3a92027, 6d544dcf-27b8-4c05-b453-d969318abdf1, 26a27d10-a4cf-4f7d-a460-b547ae54226a, 7ffd7822-af1a-42fe-a9bb-761bfea24b17, d7616a98-7097-4130-a2fe-e3f1ecec1833'}, {'id': '3a66f883-1e12-4349-8489-fc04f96bbc04', 'description': ""This class was created from the White Rabbit profile data in 'dbo.RegistrationHistory'"", 'name': 'dbo.RegistrationHistory', 'dataElementsCount': 8, 'dataElements': 'eb009f80-96cf-4676-baa8-0c8c4088bbe4, eedd9270-e056-4fcb-b924-f9626bae40a3, df2f3fb5-23d3-4f39-8684-dd8e9ca69ded, e1e01ce8-a69f-464b-a79e-ba5722ffa7d2, 77cdbc05-366c-45a4-9de3-24ce4d351d13, 73027fdb-a8f1-4279-a8c6-649980a3e6b9, 25ffa6a6-0692-4e1c-8186-30f65461f55a, 62be2f1a-78c6-46ef-98e5-860e875133d9'}, {'id': 'c078b543-133b-400a-b367-f1230d0bf94c', 'name': 'dbo.Patient', 'dataElementsCount': 26, 'dataElements': '4a65c9ac-5e80-4cac-b778-1f5bdf6ec0db, c0712cfc-bdae-471f-82e3-e99fcc031711, c05b19eb-961c-488b-8f27-6f77dfcd54a3, 3a4c2176-462a-4833-aac5-ef1787772863, ef6a55f7-7c59-4796-881d-255533c45223, 1f2468f9-e7cb-4b27-9dec-d0ff08c35c9a, e64eb8db-38a9-48b9-9f92-96f1e2319ebe, c671f4b1-6b21-4bc0-bcfa-4d9e5c58a556, 92f398ab-dad1-4986-8c36-ca2ba91a5369, 823f4325-7bc9-4254-ae16-d81919194eef, 6d076147-5492-4ac8-88ad-d44abc05d8c5, 77614bc9-b76c-4d57-9270-19d6906bec10, b389e20c-cc8b-48c2-bba5-9ebfd78494ba, efa4743c-dbff-40cd-9616-90346bd9947a, 4b1aafbe-c077-47e7-a7c9-fed107eaa277, 9fb60c73-62a0-43c0-ad40-83f91ba6c39b, 59021740-9b9c-4406-8c4c-91cea673c590, 3ffdb502-41ac-4d72-b412-41e85e0b9c2b, dfc6e60b-0607-41bf-bcc1-730a9e946ee1, 73393828-a3f2-4e27-8694-195528114fa4, cc396999-1589-46ec-b6b5-fc3d51eae83f, 2899e4f5-e9ce-4af7-9eec-ed65b78cfbea, 9ab8696b-af9e-4a82-b287-663b6b6d79dc, 73b3bb4b-e22e-479b-a13b-6ce2c87158da, 5e1be964-36a3-4093-b8ee-b8e3c043c82d, 0bc73ef3-4b48-4c1c-b7b5-d1b7a3ba3c18'}]}"
"{'title': 'National Asthma and COPD Audit Programme (NACAP): Adult Asthma secondary care clinical dataset', 'publisher': {'contactPoint': 'DataSharing@hqip.org.uk', 'name': 'HQIP', 'memberOf': 'ALLIANCE'}, 'abstract': 'This audit aims to collect information on all people admitted to hospital adult services with asthma attacks. Admission data, obtained from patient case notes, is\xa0collected\xa0and entered into a secure and bespoke audit web tool.', 'keywords': ['Asthma', 'Secondary Care', 'COPD', 'Adult Asthma', 'NACAP', 'Clinical Dataset', 'Audit'], 'contactPoint': 'DataSharing@hqip.org.uk'}",becd2624-9a01-4f01-bcf8-56e94545a49a,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'e4bf66bf-2862-4cf6-8c38-3535bf745dc5', '4.0.0': '668eefeb-fb5c-46d8-a052-12fa8da4931b', '1.0.0': 'fb8446c0-1926-4a05-8def-a2f571420990', '2.0.0': 'a23dc740-b109-4b86-a59f-619cbb571c67', '3.0.0': '7dc319da-a16f-4e63-a115-0cba3905a322', 'latest': '668eefeb-fb5c-46d8-a052-12fa8da4931b'}","{'description': 'This audit aims to collect information on all people admitted to hospital adult services with asthma attacks. Admission data, obtained from patient case notes, is collected and entered into a secure and bespoke audit web tool.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",668eefeb-fb5c-46d8-a052-12fa8da4931b,https://web.www.healthdatagateway.org/dataset/668eefeb-fb5c-46d8-a052-12fa8da4931b,"{'formatAndStandards': {'language': ['en']}, 'access': {'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data\nhttps://www.rcplondon.ac.uk/projects/outputs/national-asthma-and-copd-audit-programme-nacap-resources', 'deliveryLeadTime': 'OTHER', 'jurisdiction': 'GB-GBN'}}",,2020-01-13T14:55:15Z,,4.0.0,,2021-04-14T08:13:25Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Scotland Accident and Emergency', 'contactPoint': 'phs.edris@phs.scot', 'publisher': {'name': 'PUBLIC HEALTH SCOTLAND', 'identifier': '5f8992a97150a1b050be0712', 'memberOf': 'ALLIANCE'}, 'keywords': ['NHS Scotland', 'A&E', 'NCS', 'CO-CONNECT', 'National Core Study', 'COVID-19'], 'abstract': 'There are two types of data submitted to the A&E DataMart: episode and aggregate level data. All hospitals with Emergency Departments submit episode level data containing a detailed record for each patient attendance.'}",05e6752e-3a0b-4809-aa14-207b4761ef60,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150', 'followup': 'OTHER', 'spatial': 'https://www.geonames.org/2638360/scotland.html', 'pathway': 'Secondary care data only'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '3680c0a9-f797-40b8-a71f-bd03b56b9117', '6.0.0': '670dbf72-0140-4228-b2de-4ad1ba1c920d', '5.0.0': '142f3390-95eb-49be-bc8c-1a752a7d308e', '2.0.0': '01728d51-19eb-4527-8add-6b660cb557cc', '0.0.1': 'e8f32cbb-1469-4862-8e02-6ee6673006b7', '3.0.0': '5cffe432-21f9-44ba-b0fc-a6200115c21c', '4.0.0': '22173c55-25db-4616-97d8-04fdb6899387', 'latest': '670dbf72-0140-4228-b2de-4ad1ba1c920d'}","{'description': 'Accident and Emergency Statistics. The A&E datamart was established in June 2007 to monitor the compliance of each NHS Board against the 4 hour wait standard. In July 2010 the A&E data mart was extended further to collect items such as diagnosis, several injury fields and an alcohol involved flag, which will be used to identify whether the patient’s alcohol consumption was a factor in the attendance. The collection of the new fields has been driven by a variety of SG policy decisions and interest from a number of organisations. Although there is now the facility to submit these additional fields, they are still under development and ISD are working with the NHS Boards to support data collection and quality. There are two types of data submitted to the A&E datamart: episode and aggregate level data. All hospitals with Emergency Departments submit episode level data containing a detailed record for each patient attendance. Some smaller sites with minor injury units or community hospitals only submit aggregate files containing monthly summary attendance and compliance figures only. This is because they do not have the information systems and support to enable collection of detailed patient based information. Sites that submit episode level data account for around 94% of all attendances at A&E.', 'isPartOf': 'Unscheduled Care', 'associatedMedia': ['https://www.isdscotland.org/Health-Topics/Emergency-Care/Accident-and-Emergency-Data-Mart/']}",670dbf72-0140-4228-b2de-4ad1ba1c920d,https://web.www.healthdatagateway.org/dataset/670dbf72-0140-4228-b2de-4ad1ba1c920d,"{'formatAndStandards': {'vocabularyEncodingScheme': ['NHS SCOTLAND NATIONAL CODES'], 'language': ['en'], 'conformsTo': ['NHS SCOTLAND DATA DICTIONARY'], 'format': ['text', 'csv']}, 'access': {'dataController': 'Public Health Scotland', 'accessService': 'Scottish National Data Safe Haven - https://www.isdscotland.org/Products-and-Services/eDRIS/', 'dataProcessor': 'National Services Scotland', 'accessRights': ['https://www.informationgovernance.scot.nhs.uk/pbpphsc/', 'https://www.isdscotland.org/Products-and-Services/eDRIS/', 'https://publichealthscotland.scot/contact-us/bespoke-data-analysis-requests/'], 'deliveryLeadTime': 'VARIABLE', 'jurisdiction': ['GB'], 'accessRequestCost': ['Research Projects - https://www.isdscotland.org/Products-and-Services/eDRIS/', 'Bespoke data analysis requests - https://publichealthscotland.scot/contact-us/bespoke-data-analysis-requests/']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['COLLABORATION REQUIRED', 'INSTITUTION SPECIFIC RESTRICTIONS', 'NOT FOR PROFIT USE'], 'resourceCreator': ['National Services Scotland', 'Public Health Scotland']}}","{'origin': {'collectionSituation': ['ACCIDENT AND EMERGENCY'], 'source': ['EPR', 'OTHER'], 'purpose': ['CARE']}, 'temporal': {'distributionReleaseDate': '2020-09-01', 'timeLag': '1-2 MONTHS', 'startDate': '2014-04-01', 'accrualPeriodicity': 'MONTHLY'}}",2020-01-10T22:06:56Z,"[{'observedNode': 'EVENTS', 'measuredValue': '15475075', 'disambiguatingDescription': 'emergency admissions', 'observationDate': '20/01/2021', 'measuredProperty': 'count'}]",6.0.0,"{'qualifiedRelation': ['Data from A&E DataMart is routinely linked to the Unscheduled Care Datamart (UCD) which also links data from NHS24', 'SAS', 'GP Out of Hours', 'Emergency Hospital Admissions']}",2021-10-29T09:23:45Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 3, 'structuralMetadata.tableName': 3, 'structuralMetadata.tableDescription': 3, 'structuralMetadata.dataElementsCount': 65, 'structuralMetadata.columnName': 65, 'structuralMetadata.columnDescription': 65, 'structuralMetadata.dataType': 65, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '4aae0e91-734f-4f1f-907d-bc737542c0a7', 'description': 'A full list of the codes and definitions for each of the episode level data items is given in the document A&E Data Recording Manual. 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The header record must be present in all files, both episode and aggregate level, with each item separated by a comma.  The header record must contain ALL of the following items;', 'name': 'Header Record', 'dataElementsCount': 6, 'dataElements': '5be8b03e-89f7-443b-8eee-22de5c7b68dd, 0e5e70dd-d682-4922-a925-b06ca8f31a7e, 596b2892-54c7-4e0d-bf3e-f78c3ea64cf0, ace481be-e4e9-44d1-9172-9918c9b5af1b, f964bc95-ccf3-40ea-be7e-823d6bc54dcb, eca26e86-3ba3-47ca-9143-652dbd60fa14'}, {'id': '1a6c5e01-3caf-4b00-b00b-5729437bf210', 'description': 'Note: In aggregate files ONLY new and unplanned return attendances should be counted in the attendance figures (planned returns and recalls should be excluded).', 'name': 'Aggregate File', 'dataElementsCount': 3, 'dataElements': 'd5a2951b-a959-413d-8f9e-c99299a7b773, 4e1bcde6-db54-4fa8-982f-dcb1a1a9e69f, b4db65a9-85c0-4b01-8474-947dc15f1783'}]}"
"{'title': 'NHS Tayside and Fife Biochemistry', 'contactPoint': 'hicsupport@dundee.ac.uk', 'publisher': {'identifier': '607db9c4e1f9d3704d570d1f', 'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE', 'memberOf': 'ALLIANCE'}, 'abstract': 'NHS Tayside and NHS Fife laboratory data.', 'keywords': ['Biochemistry', 'HIC', 'Labs', 'Tayside', 'Fife', 'SCOTLAND']}",10ffac16-d0c2-4d53-ab6a-69a38e283223,"{'typicalAgeRange': '0-150', 'spatial': ['https://www.geonames.org/2636157/tayside-region.html', 'http://www.geonames.org/2649469/fife.html'], 'followup': 'UNKNOWN', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '672a54ba-0b41-4573-adf8-e97158fad9bc'},"{'description': 'This data is provided in a format based upon the SCI-Store system. SCI-Store is a data repository which retains patient laboratory test result information at a health board level. Data prior to 2007 for Tayside has been transformed to fit this structure.  Fife data starts in 2005 and all originates from SCI-Store. There is earlier data available for Fife.', 'isPartOf': 'University of Dundee Health Informatics Centre'}",672a54ba-0b41-4573-adf8-e97158fad9bc,https://web.www.healthdatagateway.org/dataset/672a54ba-0b41-4573-adf8-e97158fad9bc,"{'usage': {'dataUseRequirements': ['DISCLOSURE CONTROL'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['NHS Tayside and Fife']}, 'access': {'dataController': 'Local NHS boards', 'accessRights': ['https://www.dundee.ac.uk/hic/governanceservice/'], 'accessRequestCost': ['Quotation available on request'], 'accessService': 'HIC has implemented a remote-access Trusted Research Environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details are available via the following link:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/', 'deliveryLeadTime': '2-4 WEEKS', 'jurisdiction': ['GB-SCT'], 'dataProcessor': 'University of Dundee, Health Informatics Centre'}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'format': ['CSV', 'Database'], 'language': ['en']}}","{'temporal': {'distributionReleaseDate': '2021-09-23', 'timeLag': '1-2 WEEKS', 'accrualPeriodicity': 'MONTHLY', 'startDate': '1986-01-01'}, 'origin': {'source': ['LIMS'], 'purpose': ['CARE'], 'collectionSituation': ['SERVICES']}}",2021-11-19T15:53:27Z,"[{'observedNode': 'PERSONS', 'measuredValue': '1131000', 'disambiguatingDescription': '1,131,000 patients in dataset', 'observationDate': '23/09/2021', 'measuredProperty': 'Count'}, {'observedNode': 'EVENTS', 'measuredValue': '267620000', 'disambiguatingDescription': '267,620,000 records in the dataset', 'observationDate': '11/11/2021', 'measuredProperty': 'Count'}]",4.0.0,,2021-11-19T15:53:27Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 33, 'structuralMetadata.columnName': 33, 'structuralMetadata.columnDescription': 33, 'structuralMetadata.dataType': 33, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'b4261f7d-166c-4b30-a346-d3afd4db140e', 'description': 'Tayside and Fife labs biochemistry data. This data is provided in a format based upon the SCI-Store system.  Data prior to 2007 for Tayside has been transformed to fit this new structure. There is no legacy data for Fife as this data starts in 2005/6 and all comes from SCI-Store.      Data is complete in later years, but for older Tayside data (particularly pre-98), there may be missing patches in Ninewells data.    Perth data incomplete as early computer systems were simply turned off and data was lost.  Stracathro data became computerised much later than the other labs.    This is a complex dataset which is supplied in a hierarchical form, this extract is a flattening of that hierarchy by HIC.     The HIC recommended approach to using this data is to use the lookup file z_LocalClinicalCodeValue. Use the HICDescription column to find the codes you require. Next identify the records in 2 ways: Use the identified ReadCodeValue OR Use the identified ClinicalCodeValue along with the hb_extract.', 'name': 'Biochemistry (Lab Data Restructured)', 'dataElementsCount': 33, 'dataElements': '1e75632d-417a-4d18-926f-6b5e39da8ff1, 5d4884d7-6532-4aa2-b9a1-ee7b7e8f6922, 74c30b5f-56d0-4d9f-9e08-481dd612d9b1, fba145d2-e42a-48c8-aea9-390337f36e67, 98ae6914-3fc5-4e25-ba88-30e4a7a4473c, aac40ccf-e427-4b42-881c-f8690f7e58e0, 0b6754fd-6fb9-447e-98b7-872a1cb5fa75, e0692089-f0c8-4f43-a8dd-8e8f61e8023a, 36687daa-d5df-46ba-a15f-03ecbf58daeb, 9e96ffb6-4ae0-457d-b679-453df40f4a57, 0a439e34-1dd0-4192-9cc0-2be6f2e48d69, 7b81637c-b4c5-480d-ac38-1c2a3940c3ea, 70f8fd27-2bfa-4139-91cd-3e9119a62e88, 824783da-7c2e-4e60-97a9-68227c595be2, b808c1e7-c344-474b-8aff-f8ed68b8ad60, ceb589c3-02cb-4099-b12e-6b79132d29b5, 91c70fcd-2049-4fa9-8cb2-0c2bf63adaa0, 3d869556-f616-475a-a9ba-6e0f15c4813a, 933d8a6b-0e40-4f50-b5d0-e02272486fe5, 84dccdb0-c224-445b-84c5-9e4ff096a428, 93cf1e8b-8473-4cc5-a220-6b51af4d8b85, 60f4857f-763e-4cb3-9dd5-33fa7d74e2bf, 0a4622c1-3ea5-4773-ba81-31a3f73caaed, 3389eb80-8423-45df-9586-355ab5ce89be, f1b56716-7da8-4cc0-82a6-7a3e30f8c2eb, 8824a2f4-cfc3-4e4b-945e-9a38505ea217, 51087fc3-53d2-4e51-ba99-e4a177c5bdc0, a5ca67e9-6579-4072-9a6c-e5523f5ac10f, 1c0f9787-b100-48a3-a41f-2203bce7e3fe, a2bf77b6-4b67-4f01-80c6-9795bf0dcd1c, a1f7181e-6602-4b76-ac97-8ff766dcdcd3, 30b104a9-cdb3-4a6e-9d44-69da0254e096, 116e7607-fa7d-4f30-8a64-1f6eb8d78af0'}]}"
"{'title': 'NHS Tayside and Fife Haematology', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d1f', 'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE'}, 'keywords': ['Haematology', 'labs', 'HIC', 'NHS', 'Tayside', 'Fife', 'Scotland'], 'contactPoint': 'hicsupport@dundee.ac.uk', 'abstract': 'NHS Tayside and Fife labs Haematology data.'}",c294bb01-062b-494e-942b-1efe8cbac3dc,"{'typicalAgeRange': '0-150', 'spatial': ['https://www.geonames.org/2636157/tayside-region.html', 'http://www.geonames.org/2649469/fife.html'], 'followup': 'UNKNOWN', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '674c290e-36c6-4d9b-a908-a23e89a6745c'},"{'description': 'This data is provided in a format based upon the SCI-Store system. SCI-Store is a data repository which retains patient laboratory test result information at a health board level. Data prior to 2007 for Tayside has been transformed to fit this structure.  Fife data starts in 2005 and all originates from SCI-Store. There is earlier data available for Fife.', 'isPartOf': 'University of Dundee Health Informatics Centre'}",674c290e-36c6-4d9b-a908-a23e89a6745c,https://web.www.healthdatagateway.org/dataset/674c290e-36c6-4d9b-a908-a23e89a6745c,"{'access': {'accessRequestCost': ['Quotation available on request'], 'accessService': '""HIC has implemented a remote-access Trusted Research Environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details are available via the following link:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/', 'accessRights': ['https://www.dundee.ac.uk/hic/governanceservice/'], 'dataController': 'Local NHS boards', 'jurisdiction': ['GB-SCT'], 'deliveryLeadTime': '2-4 WEEKS', 'dataProcessor': 'University of Dundee, Health Informatics Centre'}, 'usage': {'resourceCreator': ['NHS Tayside and Fife'], 'dataUseRequirements': ['DISCLOSURE CONTROL'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}, 'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'format': ['CSV', 'Database']}}","{'temporal': {'startDate': '1994-08-06', 'accrualPeriodicity': 'MONTHLY', 'distributionReleaseDate': '2021-09-24', 'timeLag': '1-2 WEEKS'}, 'origin': {'purpose': ['CARE'], 'collectionSituation': ['SERVICES'], 'source': ['LIMS', 'ELECTRONIC SURVEY']}}",2021-11-19T15:52:06Z,"[{'observedNode': 'PERSONS', 'measuredValue': '981000', 'disambiguatingDescription': 'There are 981,000 patients in the dataset', 'observationDate': '24/09/2021', 'measuredProperty': 'COUNT'}, {'observedNode': 'EVENTS', 'measuredValue': '242080000', 'disambiguatingDescription': '242,080,000 records in the dataset', 'observationDate': '11/11/2021', 'measuredProperty': 'Count'}]",4.0.0,,2021-11-19T15:52:06Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 51, 'structuralMetadata.columnName': 51, 'structuralMetadata.columnDescription': 51, 'structuralMetadata.dataType': 51, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '75e7de6d-e48d-440a-ac31-222e60eb779d', 'description': 'Tayside and Fife labs Haematology data. This data is provided in a format based upon the SCI-Store system.   This is a data repository which retains patient information at a health board level.   Data prior to 2007 for Tayside has been transformed to fit this new structure. There is no data available for this earlier time period for Fife.  Fife data starts in 2005/6 and all originates from SCI-Store.  This is a complex dataset which is supplied in a hierarchical form, this extract is a flattening of that hierarchy by HIC.', 'name': 'Haematology (Lab Data Restructured)', 'dataElementsCount': 51, 'dataElements': 'dc768fd1-1938-43f6-a687-1329cb0b4994, 7a4eb5db-6952-44a8-b309-8e898c873efe, 7810580e-c819-489a-af8d-0200127ac535, f5a80504-7402-4dcc-98b9-d87ce9d8db41, 438ad075-3869-4eb6-82c9-3188c53601a7, 03aca646-5739-4011-825b-447c75ea03dc, 04d2214e-8e2b-4148-8f9a-8304453d66ae, 51ee662f-cda4-466a-9c61-f1c3b15fdc75, abd03813-39c3-4a2a-9664-0b7e41ab9e8f, 6e0133ac-0a6e-4b04-b725-a3a605eac876, 92e2002c-2ac8-468f-bdf7-967c6749cc63, d792c5c2-04de-4388-b994-50fcaefd8229, bde57741-c450-46a5-8572-4ef0df9ae74a, 91a544cb-c2e2-406f-80df-140b7a8dff3b, a8570931-4435-4b64-b430-d0c74da00def, 7b2b99cf-0384-49a9-a791-a183b73dfd71, 37dcb1b7-177f-4706-b471-8bb1c84f5e8b, 8dc8a686-9980-467c-9e39-501d17de6375, 7ec3ea17-79b6-48b7-9127-164a33300400, 7ff4205d-a274-47b9-a4c4-d36ac14d26a5, 07ccff57-1374-4bff-a72b-9c10cfa3350e, 85f572a1-b7f0-4d65-a66a-0b85bc4acf79, 70f467dc-e90b-47e2-8c08-3ca3235c3e2b, 20c98a56-574a-448a-b6f1-0cb639aded6f, 91839056-da69-4e4d-90f7-cac784a156fd, 356679a9-22a7-4806-a980-8933cb01651a, 8ffd7777-fa34-4186-a343-c6f3c89052aa, b06aae28-b6b8-403d-8204-95426e8a7cf7, 8ced2a32-0668-4731-839f-7280190c9614, 923e4ffe-4246-4e19-8eb8-3dd1db28e259, f54cb966-d01b-4793-aab5-db4c4ddaae6d, 435976d5-6e28-49c3-83ef-2347d3c1dd20, 154f2a4e-0a52-4a01-8e15-1fa0ad8fc19a, 4b033a1e-bcf8-4a5c-8ecc-20c9874f7524, 82f9898e-461c-4be2-8735-61711a8e2d3a, 7f3b90cd-3aba-4397-b0ea-57efee6b8654, 39e95569-6401-40ea-bcc4-a7a62383f372, 96f03bd4-c04f-45f5-b85e-d1758eeba809, 5a4a4e2a-888f-468c-bdb7-3c92fe98d6de, c681bb5d-8670-4d44-a9ab-3b1d56d62c31, 5cdba783-3943-4cc0-a024-921c33b2f6ee, 760bac72-907a-43ff-9e6c-c92a3d0d7760, 7efa884e-31a3-4b42-801a-b3775f310964, 6167e24c-a81f-4269-959e-ca8be74392f5, f7733d53-f9b1-4d73-85f6-3d47b096c135, 7a71940f-9678-49f4-a83b-acb2439f165c, 70f9a215-5712-4fe5-beca-64cf30ffddf7, 6e89e7b4-9646-49f5-8dbd-b1716de7bc6c, 2640f749-5ea2-4901-8c8d-597c053d3ab5, e85917d1-613b-45e0-9b4a-680582bd8d5d, 376672a1-ba40-47ca-9e10-6fc6fa236875'}]}"
"{'title': 'National Cardiac Audit Programme - Cardiac Rhythm Management (CRM)', 'publisher': {'identifier': '607db9c4e1f9d3704d570d23', 'name': 'HQIP', 'memberOf': 'ALLIANCE'}, 'abstract': 'The dataset contains record-level information about all implanted cardiac devices and all patients receiving interventional procedures for management of cardiac rhythm disorders in the UK, including pacemaker, ICD, CRT and cardiac ablation procedures.', 'keywords': ['Cardiac', 'Rhythm', 'Pacemaker', 'Management', 'NCAP', 'Audit', 'Device'], 'contactPoint': 'DataSharing@hqip.org.uk'}",3cc81e6c-0c17-4ccd-8202-a9aceb82c989,"{'pathway': 'The NICOR datasets focus primarily on secondary care and therfore do not cover the whole patient pathway. The audit data may be linked with other primary cars datasets e.g, General Practice Extraction Services (GPES) to give a better undestanding of care pathways and how disease and treatments are manged over time.', 'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html'], 'followup': 'UNKNOWN', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '18-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '6a3665c4-186a-491d-8054-2d9dfd7a3fd5', '5.0.0': '6762c371-8f4a-4511-910a-faf85760eab2', '1.0.0': '541dbf21-e048-4854-b72e-b2b2bf6fa6a4', '3.0.0': '395262e7-9846-4d9d-a288-8b0ebea782b9', '2.0.0': '5f4e857b-cd5f-477b-93bb-37c2f207b6a9', '4.0.0': '660d7cbd-3fcf-4139-9ef5-9b4bd03c4bee', 'latest': '6762c371-8f4a-4511-910a-faf85760eab2'}","{'description': 'The dataset contains record-level information about all implanted cardiac devices and all patients receiving interventional procedures for management of cardiac rhythm disorders in the UK, including pacemaker, ICD, CRT and cardiac ablation procedures.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)', 'associatedMedia': ['https://www.hqip.org.uk/a-z-of-nca/national-cardiac-audit-programme-ncap/#.YKPMaqhKiUk']}",6762c371-8f4a-4511-910a-faf85760eab2,https://web.www.healthdatagateway.org/dataset/6762c371-8f4a-4511-910a-faf85760eab2,"{'formatAndStandards': {'format': ['Excel'], 'conformsTo': ['OTHER'], 'language': ['en'], 'vocabularyEncodingScheme': ['OTHER']}, 'usage': {'resourceCreator': ['Data has been provided by the Healthcare Quality Improvement Partnership from the National Cardiac Audit Programme'], 'dataUseLimitation': ['NO RESTRICTION'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE']}, 'access': {'accessRights': ['https://www.nicor.org.uk/for-researchers/', 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England', 'accessRequestCost': ['https://www.nicor.org.uk/for-researchers/data-sharing-application-process/', 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'deliveryLeadTime': 'VARIABLE', 'jurisdiction': ['GB-EAW'], 'dataProcessor': 'Barts Health NHS Trust, host of the National Institute for Cardiovascular Outcomes Research (NICOR)'}}","{'origin': {'source': ['ELECTRONIC SURVEY', 'OTHER'], 'collectionSituation': ['IN-PATIENTS'], 'purpose': ['AUDIT']}, 'temporal': {'accrualPeriodicity': 'DAILY', 'timeLag': 'VARIABLE', 'startDate': '2001-04-20'}}",2020-01-13T14:54:28Z,"[{'observedNode': 'EVENTS', 'measuredValue': 181, 'disambiguatingDescription': 'number of implanting hospitals who submitted data in 2018/19', 'observationDate': '01/01/2020', 'measuredProperty': 'Count'}]",5.0.0,"{'derivation': ['Not available'], 'qualifiedRelation': ['Data Linked with that from other custodians may be available, but the release of linked data will be subject to the separate permission of all relevant data controllers.']}",2021-11-29T21:29:44Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Waiting List Clock Stops', 'keywords': ['Waiting List', 'Waiting Times', 'Elective ', 'Acute', 'acute care', 'acute hospitals', 'RTT', 'Referral to treatment', 'Referral', 'care pathways', 'pathways', 'Pathway', 'RTT pathway', 'clock stop', 'Discover-NOW', 'Discover', 'Real World data', 'Real world data', 'Linked longitudinal', 'elective recovery'], 'publisher': {'name': 'DISCOVER NOW', 'memberOf': 'HUB', 'identifier': '607db9c3e1f9d3704d570cfa'}, 'abstract': 'Restoration of elective activity (Acute) - All RTT pathways with a clock stop date after 23:59 on Sunday 4th April 2021 and before 23:59 on the Sunday of the reporting period and not recorded to date (in a previous submission).', 'contactPoint': 'researchers@registerfordiscover.org.uk'}",3f073707-50b4-48cf-93b6-76843519a5c0,"{'spatial': ['https://www.geonames.org/2646895/hillingdon.html', 'https://www.geonames.org/2634341/city-of-westminster.html', 'https://www.geonames.org/3333157/royal-kensington-and-chelsea.html', 'https://www.geonames.org/3333151/harrow.html', 'https://www.geonames.org/3333132/brent.html', 'https://www.geonames.org/2650567/ealing.html', 'https://www.geonames.org/3333155/hounslow.html', 'https://www.geonames.org/3333149/hammersmith-and-fulham.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': '1 - 10 YEARS', 'typicalAgeRange': '0-150', 'pathway': ""The independent datasets don't show the full patient pathway. We can include other datasets (Clock Starts, Diagnostics and Open Pathways) in views to show the full patient pathway). This dataset contains all RTT Clock Stops using a patient key to link to patient activity related to NWL patient population.""}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '67ab8a56-99d7-4951-aacb-5dca0b8ffa35'},"{'description': 'Restoration of elective activity is one of the highest priorities for NHS England and NHS Improvement following the impact of the Covid-19 pandemic. Understanding the composition of the waiting list is critical to managing restoration within North West London. \n\nData will be collected via data submissions made by each individual provider of NHS Acute healthcare services in North West London. This dataset includes data from Imperial College Healthcare NHS Trust, Chelsea and Westminster NHS Foundation Trust, London North West Healthcare NHS Trust and The Hillingdon Hospital NHS Trust. Data will be processed under an Information Sharing Agreement between North West London CCG and each organisation. Data submissions will be processed and used for the following purposes:\n\n  1.  Developing a visual display of the waiting list composition (Elective Waiting List Data Dashboard).\n  2.  Developing a data quality improvement programme with providers.\n\nAll RTT pathways with a clock stop date after 23:59 on Sunday 4th April 2021 and before 23:59 on the Sunday of the reporting period and not recorded to date (in a previous submission).', 'associatedMedia': ['https://imperialcollegehealthpartners.com/discover-now/north-west-london-covid-19-data-repository/', 'https://www.nwlondonccgs.nhs.uk/professionals/whole-systems-integrated-care-wsic-dashboards-and-information-sharing/information-de-identified-users'], 'isPartOf': 'National Waiting List'}",67ab8a56-99d7-4951-aacb-5dca0b8ffa35,https://web.www.healthdatagateway.org/dataset/67ab8a56-99d7-4951-aacb-5dca0b8ffa35,"{'access': {'jurisdiction': ['GB'], 'accessRequestCost': ['In Progress'], 'dataController': 'Joint data controller model across North West London', 'accessRights': ['https://imperialcollegehealthpartners.com/discover-now/nwl-covid-data-access/'], 'accessService': ""Researchers will have access to a VDI environment with a specific username and password. The researchers will get access to the datasets that is present in the hub's catalogue and would be able to carry out their research within the safe haven. There are restrictions applied which prevents the researchers from taking data out of the safe haven, once the research/analysis is completed the admin team will need to be contacted for taking the analysis off the safe haven."", 'deliveryLeadTime': '1-2 MONTHS', 'dataProcessor': 'North West London CCG\nNorth East London Commissioning Support Unit'}, 'usage': {'dataUseRequirements': ['COLLABORATION REQUIRED', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'investigations': ['https://www.registerfordiscover.org.uk/researchers/discover-for-researchers-and-industry'], 'resourceCreator': ['Discover-Now', 'NWL CCG'], 'isReferencedBy': ['Bottleet al. BMC Medical Informatics and Decision Making (2020) 20:71 https://doi.org/10.1186/s12911-020-1082-7'], 'dataUseLimitation': ['NO RESTRICTION']}, 'formatAndStandards': {'language': ['en'], 'format': ['Excel', 'SQL', 'Tableau', 'R'], 'conformsTo': ['NHS DATA DICTIONARY', 'LOCAL'], 'vocabularyEncodingScheme': ['NHS NATIONAL CODES']}}","{'temporal': {'startDate': '2021-04-01', 'distributionReleaseDate': '2021-04-01', 'accrualPeriodicity': 'WEEKLY', 'timeLag': '1-2 WEEKS', 'endDate': '2022-03-31'}, 'origin': {'purpose': ['CARE', 'ADMINISTRATIVE', 'STATUTORY'], 'source': ['EPR', 'OTHER INFORMATION SYSTEM'], 'collectionSituation': ['OUTPATIENTS', 'IN-PATIENTS', 'OTHER']}}",2021-09-22T10:53:31Z,"[{'observedNode': 'PERSONS', 'measuredValue': '68219', 'disambiguatingDescription': 'NHS National Codes', 'observationDate': '15/09/2021', 'measuredProperty': 'Count'}]",1.0.0,"{'qualifiedRelation': ['Each patient will be identified by an unique patient key that can be used to link to all other datasets available within Discover-NOW hub'], 'derivation': ['Long Term Conditions', 'Electronic Frailty Index', 'Q-Admissions', 'Patient Segments', 'Risk Segments'], 'tools': ['https://nww.analytics.southlondoncsu.nhs.uk/#/site/ICSAnalytics/views/WaitingListPTL/RTTPopulationHealth?:iid=1']}",2021-09-22T10:53:31Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 43, 'structuralMetadata.columnName': 43, 'structuralMetadata.columnDescription': 43, 'structuralMetadata.dataType': 43, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'e44a10d8-c14b-40df-97e2-819e6bbb2533', 'description': 'Restoration of elective activity (Acute) - All RTT pathways with a clock stop date after 23:59 on Sunday 4th April 2021 and before 23:59 on the Sunday of the reporting period and not recorded to date (in a previous submission).', 'name': 'National_WL_ClockStops', 'dataElementsCount': 43, 'dataElements': '758724f6-1666-4ebc-acce-2e96ecbb0b6e, 010b0ef3-0898-4cff-8b38-d557786391fb, 8a986379-c2f8-4174-a4f9-ebb063dc68af, 6b17889a-cc35-4418-8da0-f12b325b57b5, ad0226ad-ca30-4bab-bc4e-3772c1436315, 44a1d168-65ad-4648-95fe-0254e7ae780e, 0c852c08-b3e8-43fe-bc49-ed3faf44a2b0, e03286ad-9100-4bfe-ab28-6d97a9a29910, b66526fb-ccf8-4791-a174-3cd8822749b5, f24c6c7e-c75e-436d-a07d-0cb613e8267d, c2047a9a-eb98-46c7-919d-ba72bd93e9a2, 4990c7e8-2098-4803-8f3f-2a36664bef08, 6ec0c988-fe53-478a-b641-e7d93867f438, 595ea8ba-f161-4d93-96ca-cbd1479dba7e, 157ba315-1eed-4737-b090-7a623aec6460, 230cb126-2eaa-4f8d-ac24-897ed3ba7a4f, 291722fe-2f0a-465b-8113-14c99c4da1de, 81b1ce53-e323-4f6b-bd0d-7cecda90dcc5, 825bb7b4-e12a-4fab-9044-99f50eeb3a49, 20614422-090d-469a-a421-8951680a73b7, 47d3c4f1-4fbd-4b6f-a72d-d1e6830eb728, 26fcb787-6748-48c1-b111-3890a4c45f6a, 36682d26-a1c4-4d02-9e4d-91bc03a49975, a16d9f6d-dbc3-483a-8ea8-db0daf5c1bfb, 371a8932-f36f-4746-8a34-3b51a58749e4, 0ca84dad-483a-48dc-80c2-a2d1620c6d8f, c0752d57-bf9a-4b4a-ac33-1c292f9acb77, a920f5ed-dc12-474c-b8b7-222f2d0af1a3, 6fa36eaa-4aec-4aa6-9405-1fd42253df86, a8dd4abd-0176-453f-86f3-b7654ade5b8b, d6f1e1ee-052b-4953-be6e-c03bc730df85, 93109ee1-d1db-42fa-becb-31fb7ae60376, 74386fec-5100-459a-a213-5213634be445, 9313a6ed-63b3-4aaf-8bc7-e852c5c02031, 2f716a6f-34b1-4a64-baa3-309fbfe48aa3, 713ee315-0367-457a-91b8-7ac864aeec56, 9ab4c4dc-0e82-49c0-b224-653a678321e5, 8ce784e9-441a-4117-aa47-974ab946cfbc, 6c447698-5f17-43c5-bba7-fbad9b3d40e4, 75664a4f-a035-4507-b735-f9c32c2430df, 3632f8ab-3f0b-402a-884c-7800637cb5f5, 6853b6d5-68c0-40df-84ce-b13fa73d949b, 3820b5b3-86f6-48d0-9a35-2f468f28bfe0'}]}"
"{'title': 'Genetics of Asthma Severity & Phenotypes', 'doiName': 'In Progress', 'keywords': ['Asthma', 'GASP', 'Phenotypes', 'Genetics', 'BREATHE'], 'publisher': {'name': 'BREATHE', 'memberOf': 'HUB', 'contactPoint': 'breathe.saildatabank@swansea.ac.uk'}, 'contactPoint': 'breathe.saildatabank@swansea.ac.uk', 'abstract': 'The Genetics of Asthma Severity & Phenotypes initiative was set up in 2013 as part of an Asthma UK funded programme of work to directly address the need for a large cohort of moderate-severe asthma patients for genetic studies.'}",6277abc6-c039-4886-8489-d4a2cdb8190c,"{'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'UK', 'followup': '1 - 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'3.0.0': '94c082e5-b45f-43fe-9340-f4855f392fd4', '4.0.0': '67cd0c2b-3944-4bc4-a03a-4081ee67847f', '0.0.1': 'c5c2a109-9e07-49a2-a8db-127e70e8eaff', '1.0.0': 'ffe7b810-bec0-4800-aeb0-e94581f79284', '2.0.0': 'ef18fb7c-1a7b-40e4-bc20-c93b96130937', 'latest': '67cd0c2b-3944-4bc4-a03a-4081ee67847f'}","{'description': 'The Genetics of Asthma Severity & Phenotypes initiative was set up in 2013 as part of an Asthma UK funded programme of work to directly address the need for a large cohort of moderate-severe asthma patients for genetic studies.\n\nThe cohort was established by bringing together all of the major respiratory centres across the UK to provide access to existing samples/clinical data but also to prospectively recruit patients (still ongoing). This cohort has been utilised in our recent GWAS of Moderate-Severe asthma (PMID: 30552067). \n\nThe cohort is currently ~4,000 individuals and to date 2,536 individuals have Affymetrix Axion array data that has completed QC imputed to provide 33M variants. The cohort has extensive clinical and immunological data although absolute numbers of these measures are variable due to the nature of the formation of the cohort.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://www.leicesterbrc.nihr.ac.uk/genetics-of-severe-asthma/']}",67cd0c2b-3944-4bc4-a03a-4081ee67847f,https://web.www.healthdatagateway.org/dataset/67cd0c2b-3944-4bc4-a03a-4081ee67847f,"{'access': {'dataProcessor': 'BREATHE', 'accessRights': ['https://saildatabank.com/application-process/'], 'accessRequestCost': 'Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements', 'jurisdiction': 'GB', 'dataController': 'BREATHE'}, 'usage': {'isReferencedBy': ['Nick Shrine, Michael A Portelli, Catherine John, María Soler Artigas, Neil Bennett, Robert Hall, Jon Lewis, Amanda P Henry, Charlotte K Billington, Azaz Ahmad, Richard J Packer, Dominick Shaw, Zara E K Pogson, Andrew Fogarty, Tricia M McKeever, Amisha Singapuri, Liam G Heaney, Adel H Mansur, Rekha Chaudhuri, Neil C Thomson, John W Holloway, Gabrielle A Lockett, Peter H Howarth, Ratko Djukanovic, Jenny Hankinson, Robert Niven, Angela Simpson, Kian Fan Chung, Peter J Sterk, John D Blakey, Ian M Adcock, Sile Hu, Yike Guo, Maen Obeidat, Don D Sin, Maarten van den Berge, David C Nickle, Yohan Bossé, Martin D Tobin, Ian P Hall, Christopher E Brightling, Louise V Wain, Ian Sayers, 2019, Moderate-to-severe asthma in individuals of European ancestry: a genome-wide association study, The Lancet Respiratory Medicine, Volume 7, Issue 1, Pages 20-34, ISSN 2213-2600, https://doi.org/10.1016/S2213-2600(18)30389-8.'], 'resourceCreator': 'University of Nottingham', 'dataUseLimitation': 'GENERAL RESEARCH USE'}, 'formatAndStandards': {'language': 'en', 'vocabularyEncodingScheme': ['LOCAL', 'NHS NATIONAL CODES'], 'conformsTo': 'LOCAL', 'format': ['CSV']}}","{'temporal': {'distributionReleaseDate': '2019-12-01', 'endDate': '2020-01-01', 'startDate': '2013-01-01', 'timeLag': 'NOT APPLICABLE', 'accrualPeriodicity': 'ANNUAL'}, 'origin': {'source': ['EPR', 'ELECTRONIC SURVEY'], 'purpose': ['STUDY', 'DISEASE REGISTRY']}}",2020-01-13T15:48:23Z,,4.0.0,"{'derivation': ['In Progress'], 'qualifiedRelation': ['Not Available']}",2021-03-02T17:50:33Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'UK Renal Registry - AKI Lab Alerts Dataset', 'abstract': 'Patient-level data for adults and children who trigger an electronic alert for an acute kidney injury (AKI) in primary or secondary care in England.', 'publisher': {'name': 'RENAL ASSOCIATION', 'identifier': '609bc283781cac1dbab2a385', 'memberOf': 'ALLIANCE'}, 'keywords': ['UKRR', 'AKI', 'Renal', 'Kidney', 'Laboratory e-alerts', 'Acute kidney injury', 'Kidney disease', 'e-alerts'], 'contactPoint': 'ukrr-research@renalregistry.nhs.uk'}",c38541a7-cf43-4bfd-928d-75613abc8e3f,"{'pathway': 'Patients may only experience an acute kidney injury (AKI) once in their life, or they may have multiple episodes. The AKI lab dataset captures AKI e-alerts for all children and adults who trigger an AKI alert in both primary and secondary care in England. Data collection is mandated by NHS England and in 2019 96% of laboratories submitted data.', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'https://www.geonames.org/6269131/england.html', 'followup': '0 - 6 MONTHS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '682b4d85-732a-4440-922d-07191a604143'},"{'description': 'The dataset contains patient-level data for adults and children who trigger a laboratory e-alert for an acute kidney injury (AKI) in primary or secondary care in England. The data are collected monthly and include patient identifiable information, and limited socio-demographic and clinical data. Data collection began in 2015 and in 2018, 87% of the 189 laboratories in England submitted data that could be used in the UKRR’s inaugural AKI report that was published in July 2020 (AKI in England – a report on the nationwide collection of AKI warning test scores from 2018). In 2019, 96% of laboratories submitted data. Each year the UKRR collects data on about 500,000 people with a suspected AKI in England - this includes more than 1.5 million AKI e-alerts. This data collection is mandated by NHS England and alerts are generated by an algorithm embedded in the laboratory information management systems. See here for further information: https://renal.org/audit-research/data-permissions/data/ukrr-lab-aki-dataset', 'isPartOf': 'UK Renal Registry, The Renal Association', 'associatedMedia': ['https://renal.org/audit-research/data-permissions/data/ukrr-lab-aki-dataset']}",682b4d85-732a-4440-922d-07191a604143,https://web.www.healthdatagateway.org/dataset/682b4d85-732a-4440-922d-07191a604143,"{'formatAndStandards': {'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'format': ['csv or xlsx or sas7bdat']}, 'access': {'jurisdiction': ['GB-GB'], 'accessRequestCost': ['Charges may apply for new aggregate data and extracts of pseudonymous patient level data. The charges are to recover the costs of managing the application process and preparing extracts of data. The costs depend on the level of service required from the UKRR and whether this is limited to a simple extract of data, or requires additional input such as methodological or statistical support. The UKRR can advise on costs once the expression of interest is received and applicants may also be requested to complete a costing form.'], 'accessRights': ['https://renal.org/audit-research/how-access-data/ukrr-data/apply-access-ukrr-data'], 'dataController': 'The Renal Association', 'accessService': ""Data are released to researchers who have successfully gone through the UKRR's data application process. Prior to any data sharing with successful applicants, a fixed term data sharing agreement (DSA) is drawn up between the Renal Association and the recipient. This specifies the scope of the analyses permitted, the data items to be shared, the frequency of the data sharing, the names of the researchers and the time limit beyond which data must be destroyed."", 'deliveryLeadTime': '2-6 MONTHS'}, 'usage': {'investigations': ['https://renal.org/audit-research/projects/ukrr'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['UK Renal Registry, The Renal Association'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'ETHICS APPROVAL REQUIRED', 'GEOGRAPHICAL RESTRICTIONS', 'TIME LIMIT ON USE', 'NOT FOR PROFIT USE', 'USER SPECIFIC RESTRICTION', 'INSTITUTION SPECIFIC RESTRICTIONS']}}","{'temporal': {'timeLag': '2-6 MONTHS', 'distributionReleaseDate': '2021-06-01', 'accrualPeriodicity': 'QUARTERLY', 'startDate': '2015-03-31'}, 'origin': {'purpose': ['AUDIT', 'DISEASE REGISTRY', 'CARE'], 'collectionSituation': ['PRIMARY CARE', 'OUTPATIENTS', 'IN-PATIENTS', 'CLINIC', 'ACCIDENT AND EMERGENCY', 'COMMUNITY'], 'source': ['LIMS']}}",2021-05-25T15:10:45Z,"[{'observedNode': 'PERSONS', 'measuredValue': '1700000', 'disambiguatingDescription': 'Since 2015 c. 1.7 million people have triggered a laboratory e-alert for an AKI. 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"{'title': 'Epilepsy 12 - clinical audit', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d23', 'name': 'HQIP'}, 'keywords': ['Audit', 'Epilepsy 12', 'Clinical', 'Paediatric', 'epilepsy', 'patient'], 'abstract': 'A prospective national clinical audit dataset which aims to include information on the investigation, diagnosis, treatment, care planning and outomes of all children and young people with a new onset of epilepsy', 'contactPoint': 'DataSharing@hqip.org.uk'}",1fcaf429-8762-454c-b999-c5fdd757b880,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-25', 'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html'], 'followup': '6 - 12 MONTHS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '62b2dbe5-871f-4ebd-ae7f-969fea171546', '5.0.0': '68906d25-384c-4152-86b5-50c5170ad94c', '1.0.0': '9866e729-3387-4661-828a-59ee7c4b8462', '2.0.0': '3a51b861-026d-45ed-abe6-30d9cc07b516', '3.0.0': '3814fc7e-02af-41ff-af00-4076ca325d5e', '4.0.0': 'e6d3be74-3679-4089-8bad-fe07addda6a1', 'latest': '68906d25-384c-4152-86b5-50c5170ad94c'}","{'description': 'A prospective national clinical audit dataset which aims to include information on the investigation, diagnosis, treatment, care planning and outcomes of all children and young people with a new onset of epilepsy.\n\nDetails are recorded about the first assessment children and young people receive following a suspected seizure. Their care is then followed for 12 months. The audit uses 12 key measures drawn from clinical guidelines which include: involvement of paediatricians and nurses with experise in epilepsy, appropriate referrals to tertiary and surgical services,  \ncontent of the first assessment, appropriate seizure classification, appropriate diagnostic investigations, use of epilepsy medications, and evidence of comprehensive care planning.\n\nhttps://www.rcpch.ac.uk/sites/default/files/2019-06/epilepsy12_r3_patient_reg_and_clin_audit_dataset_june_19.pdf', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)', 'associatedMedia': ['https://www.hqip.org.uk/a-z-of-nca/national-epilepsy-12-audit/#.YKKX0qhKiUk']}",68906d25-384c-4152-86b5-50c5170ad94c,https://web.www.healthdatagateway.org/dataset/68906d25-384c-4152-86b5-50c5170ad94c,"{'formatAndStandards': {'format': ['.xlsx'], 'language': ['en'], 'conformsTo': ['OTHER'], 'vocabularyEncodingScheme': ['OTHER']}, 'access': {'deliveryLeadTime': 'VARIABLE', 'accessRights': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'accessRequestCost': ['An indicative cost will be provided to applicants upon application. Charges will be based\non workload associated with the application and will be charged following sharing of the\ndata. They will include a standard £350 + VAT admin fee to cover consultation and\nprocessing of the application, plus a £350 + VAT per day of analyst time– chargeable in\nhalf day increments. These costs are limited to RCPCH activitiy in the administation and preparation of requested data. HQIP will also charge according to their costing model.'], 'jurisdiction': ['GB-EAW'], 'dataProcessor': 'Royal College of Paediatrics and Child Health', 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England'}, 'usage': {'resourceCreator': ['Data has been provided by the Healthcare Quality Improvement Partnership from the Epilepsy12 Audit Programme'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE'], 'dataUseLimitation': ['NO RESTRICTION']}}","{'temporal': {'startDate': '2001-09-20', 'timeLag': 'VARIABLE', 'accrualPeriodicity': 'DAILY'}, 'origin': {'purpose': ['AUDIT'], 'source': ['ELECTRONIC SURVEY', 'OTHER'], 'collectionSituation': ['OUTPATIENTS', 'COMMUNITY']}}",2020-01-13T10:41:27Z,"[{'observedNode': 'EVENTS', 'measuredValue': 3318, 'disambiguatingDescription': 'Number of children registered to the audit for publication in 2020, or which 1118 had been diagnosed with epilepsy.', 'observationDate': '01/12/2020', 'measuredProperty': 'Count'}]",5.0.0,"{'qualifiedRelation': ['Data linked with that from other custodians may be available, but the release of linked data will be subject to the separate permission of all relevant data controllers.'], 'derivation': ['Not known']}",2022-01-31T09:20:30Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 10, 'structuralMetadata.tableName': 10, 'structuralMetadata.tableDescription': 10, 'structuralMetadata.dataElementsCount': 296, 'structuralMetadata.columnName': 296, 'structuralMetadata.columnDescription': 296, 'structuralMetadata.dataType': 296, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'd2c3c12d-bd0f-4ab9-aadc-8f05ee7cf85d', 'description': 'Main table of epilepsy care', 'name': 'Assessment', 'dataElementsCount': 183, 'dataElements': '5f0caba1-1138-45d0-820d-7a6fe1a5a23d, ab090751-a7c5-433e-8210-64840018f96c, 30e8e1c9-12e8-4b36-96e2-e0f12a4173f0, d264eefd-9c9c-4122-b363-2b0a6ec732ae, 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"{'title': 'Tayside & Fife Diabetes – Summary and a range of diabetes related datasets.', 'keywords': ['Scotland', 'Tayside', 'Fife', 'Diabetes', 'Diabetes Mellitus Type 1', 'Diabetes Mellitus Type 2', 'Gestational Diabetes', 'HIC'], 'publisher': {'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE', 'identifier': '607db9c4e1f9d3704d570d1f', 'memberOf': 'ALLIANCE'}, 'abstract': 'This data set provides an overview of the type of diabetes, the date it was diagnosed, the treatment type and healthboard the patient belongs to.', 'contactPoint': 'hicsupport@dundee.ac.uk'}",49e63323-e564-48ac-9f11-cf77bf0fe20b,"{'followup': 'UNKNOWN', 'pathway': 'All diabetic patients over Tayside and Fife', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2636157/tayside-region.html', 'http://www.geonames.org/2649469/fife.html'], 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '0ff88499-931b-4614-9f81-facf21f28174', '4.0.0': '69220bf9-f223-4e88-91c8-8ae8eab9f438', '0.0.1': '9527f052-5e48-4d42-a62c-8cc71fea3d27', '2.0.0': '5852d8bc-d721-4daf-a63b-21aebcc6f5a9', '3.0.0': '8a68c731-fdc4-4497-b457-2b0f5151edf9', 'latest': '69220bf9-f223-4e88-91c8-8ae8eab9f438'}","{'description': 'This dataset contains a wide range of healthcare data relating to diabetes care for all diabetic patients across the Tayside and Fife regions in Scotland. 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"{'title': 'Business Insights and Conditions Survey (BICS)', 'publisher': {'name': 'OFFICE FOR NATIONAL STATISTICS', 'identifier': '5fc12be363eaab9e68dae76e', 'memberOf': 'NCS'}, 'contactPoint': 'srs.customer.support@ons.gov.uk', 'keywords': ['COVID-19', 'business', 'health', 'economic activity', 'NCS', 'National Core Study'], 'abstract': 'The indicators and analysis presented in this bulletin are based on responses from the new voluntary fortnightly business survey, which captures business’ views on impact on turnover, workforce prices, trade and business resilience'}",8e739a01-bcfa-4b75-b7f8-e694ee185f8d,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'OTHER', 'pathway': 'NOT APPLICABLE', 'spatial': 'https://www.geonames.org/2635167/united-kingdom-of-great-britain-and-northern-ireland.html', 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'6.0.0': 'cc9b9e79-e4b0-421e-a59e-f62ee56918a3', '7.0.0': '693fd389-a3a9-4cc9-9a13-6218d84292fd', '5.0.0': '410d78d5-2955-4a40-86a7-ce1071e4749d', '1.0.0': '617aca9b-0fb9-45ec-8314-e16c3e074b01', '0.0.1': 'a0f75393-b75c-4a15-bf01-42f7469b4654', '2.0.0': 'b9df3c27-94c2-41c6-b950-3dac9579549c', '4.0.0': '542baa13-5d19-424e-b747-b2e57922df01', '3.0.0': '39537838-164a-4aee-8859-957f0a347390', 'latest': '693fd389-a3a9-4cc9-9a13-6218d84292fd'}","{'description': 'Based on user feedback, from Wave 24 the ""Business Impact of Coronavirus (COVID-19) Survey"" has changed its name to the ""Business Insights and Conditions Survey"" (BICS). The purpose remains the same, to collect real-time information on important issues such as the coronavirus (COVID-19) pandemic and the end of the EU transition period.\n\nThe indicators and analysis presented are based on responses from the voluntary fortnightly business survey, which captures business’ views on impact on turnover, workforce prices, trade and business resilience. Estimates from the Business Insights and Conditions Survey (BICS) are now weighted, with only regional tables unweighted.', 'associatedMedia': ['https://www.ons.gov.uk/economy/economicoutputandproductivity/output/datasets/businessimpactofcovid19surveybicsresults', 'https://www.ons.gov.uk/surveys/informationforbusinesses/businesssurveys/businessimpactofcoronaviruscovid19survey', 'https://www.ons.gov.uk/surveys/informationforbusinesses/businesssurveys/thequestionsonthebusinessimpactofcoronaviruscovid19survey', 'https://www.ons.gov.uk/businessindustryandtrade/business/businessservices/bulletins/businessinsightsandimpactontheukeconomy/7january2021'], 'isPartOf': 'ONS, COVID'}",693fd389-a3a9-4cc9-9a13-6218d84292fd,https://web.www.healthdatagateway.org/dataset/693fd389-a3a9-4cc9-9a13-6218d84292fd,"{'access': {'accessRequestCost': ['Available at no cost at the point of use'], 'accessService': 'The Office for National Statistics Secure Research Service (SRS) gives accredited researchers secure access to de-identified, unpublished data in order to work on research projects for the public good.   Most datasets are available to access through remote access to the SRS. In some instances, the data can only be accessed from an approved safe setting. \nFor more information, visit: https://www.ons.gov.uk/aboutus/whatwedo/statistics/requestingstatistics/approvedresearcherscheme', 'accessRights': ['https://www.ons.gov.uk/aboutus/whatwedo/statistics/requestingstatistics/approvedresearcherscheme'], 'jurisdiction': ['GB-GBN'], 'dataProcessor': 'Office for National Statistics', 'dataController': 'Office for National Statistics'}, 'usage': {'dataUseRequirements': ['ETHICS APPROVAL REQUIRED', 'NOT FOR PROFIT USE', 'PROJECT SPECIFIC RESTRICTIONS', 'PUBLICATION REQUIRED'], 'resourceCreator': ['Office for National Statistics'], 'dataUseLimitation': ['RESEARCH USE ONLY']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['OTHER'], 'language': ['en'], 'format': ['STATA']}}","{'temporal': {'startDate': '2020-03-09', 'timeLag': '1-2 WEEKS', 'accrualPeriodicity': 'BIWEEKLY'}, 'origin': {'collectionSituation': ['OTHER'], 'source': ['ELECTRONIC SURVEY'], 'purpose': ['OTHER']}}",2020-10-20T08:44:49Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '9389', 'disambiguatingDescription': 'Latest Publication Wave includes 9389 businesses. This is from the publication bulletin released on 7th January 2021.', 'observationDate': '07/01/2021', 'measuredProperty': 'count'}]",7.0.0,{'derivation': ['']},2022-01-25T13:00:08Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 172, 'structuralMetadata.columnName': 172, 'structuralMetadata.columnDescription': 172, 'structuralMetadata.dataType': 172, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '81472f8f-2eb8-4c5a-9aea-09561b46d01c', 'description': 'BICs data for the specified wave', 'name': 'bics_wave', 'dataElementsCount': 172, 'dataElements': '107eec3a-24af-45e6-9f76-3297a74b2d15, 987ac48d-ae12-4837-949a-e220a4b7f72d, 4d31bb99-2637-4f2c-bbcf-820d62f421b6, 63c40215-ef9f-4dfc-a979-5a699aecdbc3, 4a5536c9-732d-4e96-b4a2-bf280ba1af5f, 7fcbc991-2169-431e-bdbb-1db887f38cd7, 0b59983a-ed1e-4cd6-9e41-00c7a10afa87, 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"{'title': 'HES Diagnostic Imaging Dataset for CPRD Aurum', 'abstract': 'CPRD Aurum linked Hospital Episode Statistics Diagnostic Imaging Dataset (HES DID) data contain information about NHS diagnostic imaging tests, such as x-rays and MRI scans, in England (but not the images themselves).', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'CPRD', 'identifier': '607db9c2e1f9d3704d570cee'}, 'contactPoint': 'enquiries@cprd.com', 'doiName': 'https://doi.org/10.48329/ws6w-vs18', 'keywords': ['Diagnostic', 'Imaging', 'DIDs']}",617f9f54-3fb6-40c3-b391-fe51d1fc7c49,"{'spatial': ['https://www.geonames.org/6269131/england.html'], 'typicalAgeRange': '0-115', 'followup': '1 - 10 YEARS', 'pathway': 'Secondary care', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '2b8f27fd-d03a-472c-954f-90bd7bc36cc4', '5.0.0': '697690e1-e766-43be-bf89-244aab0641a8', '4.0.0': '5e9d9633-c4f4-47cc-96d9-350191e18539', '3.0.0': '0266f904-b168-488a-a9e7-d318443584ef', '1.0.0': '3c8cc88b-8857-4053-be37-b75916a1358d', '0.0.1': '2183095a-387c-4ac0-b5ea-b7928df55fc2', 'latest': '697690e1-e766-43be-bf89-244aab0641a8'}","{'description': ""CPRD Aurum linked Hospital Episode Statistics Diagnostic Imaging Dataset (HES DID) is a collection of detailed information about diagnostic imaging tests, such as x-rays and MRI scans, taken from NHS providers' radiological information systems. 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The DID enables analysis of demographic and geographic variation in access to different test types and different providers, enabling users to analyse patient care pathways."", 'isPartOf': 'CPRD Aurum', 'associatedMedia': ['https://www.cprd.com/linked-data']}",697690e1-e766-43be-bf89-244aab0641a8,https://web.www.healthdatagateway.org/dataset/697690e1-e766-43be-bf89-244aab0641a8,"{'access': {'deliveryLeadTime': 'VARIABLE', 'dataProcessor': 'CPRD', 'dataController': 'Clinical Practice Research Datalink (CPRD)', 'jurisdiction': ['GB-ENG'], 'accessService': 'Access to CPRD data, including UK Primary Care Data, and linked data such as Hospital Episode Statistics, is subject to protocol approval via CPRD’s Research Data Governance (RDG) Process. Independent scientific and patient advice is provided by Expert Review Committees (ERCs) and the Central Advisory Committee (CAC): https://www.cprd.com/research-applications', 'accessRequestCost': ['https://www.cprd.com/pricing'], 'accessRights': ['HTTPS://CPRD.COM/DATA-ACCESS']}, 'usage': {'investigations': ['https://www.cprd.com/protocol-list'], 'dataUseRequirements': ['GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'NO LINKAGE', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'resourceCreator': ['NHS Digital'], 'isReferencedBy': ['[]']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['SNOMED CT'], 'conformsTo': ['NHS DATA DICTIONARY'], 'language': ['en'], 'format': ['Tab delimited text']}}","{'origin': {'source': ['EPR'], 'collectionSituation': ['ACCIDENT AND EMERGENCY', 'CLINIC', 'IN-PATIENTS', 'OUTPATIENTS'], 'purpose': ['CARE']}, 'temporal': {'startDate': '2004-12-20', 'timeLag': 'MORE 6 MONTHS', 'distributionReleaseDate': '2021-09-06', 'endDate': '2018-12-31', 'accrualPeriodicity': 'QUARTERLY'}}",2020-01-10T18:12:19Z,"[{'observedNode': 'PERSONS', 'measuredValue': 34416869, 'disambiguatingDescription': 'Number of CPRD Aurum patients matched to single HES identifier ', 'observationDate': '06/09/2021', 'measuredProperty': 'Count'}]",5.0.0,"{'qualifiedRelation': ['CPRD Aurum', 'CPRD Aurum SGSS', 'CPRD Aurum CHESS', 'CPRD Aurum ICNARC', 'Death Registration data for CPRD Aurum', 'HES Admitted Patient Care data for CPRD Aurum', 'HES Outpatient data for CPRD Aurum', 'HES Accident and Emergency data for CPRD Aurum', 'Patient postcode linked deprivation measures for CPRD Aurum', 'Practice postcode linked deprivation measures for CPRD Aurum', 'Rural-Urban classification for CPRD Aurum', 'Cancer registration data for CPRD Aurum', 'National Radiotherapy Dataset (RTDS) for CPRD Aurum,Systemic Anti-Cancer Treatment (SACT) data for CPRD Aurum', 'Mental Health Dataset (MHDS) for CPRD Aurum'], 'derivation': ['N/A'], 'tools': ['[]']}",2022-02-18T12:02:49Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 3, 'structuralMetadata.tableName': 3, 'structuralMetadata.tableDescription': 3, 'structuralMetadata.dataElementsCount': 32, 'structuralMetadata.columnName': 32, 'structuralMetadata.columnDescription': 32, 'structuralMetadata.dataType': 32, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '9da18642-a70d-47a0-963c-a3c78c88a9f8', 'description': 'A16', 'name': 'Test', 'dataElementsCount': 18, 'dataElements': '2731514f-32f5-49ab-bce3-703e006115d3, 629cfd95-d789-4006-afa4-49df915de5c6, aec0d008-e82b-4fce-a102-8c7e6f0f47ae, a999ea82-1914-4c81-ac84-8500b2d6a338, 13f068a8-4337-4d18-9aa2-3b5a0049af41, 87d52de2-8a1a-473d-86a2-b625c1150b7b, 550deec6-bba7-4e41-811a-2bb715c35f6a, 36e6b3b5-d16a-42ca-af40-8bcdaf435794, c2d41d5d-c396-41eb-a241-c39ea4cd14e1, c4387c05-2194-4e4a-afe8-2115d3540ee5, bdd5c04c-51bc-4670-bce7-9f2e8e3235af, 7cd1016e-f6cb-448e-b458-0743e6fc91e0, 6adb0895-b6b9-4d99-93d6-a1e7572602c3, 2a9ba52b-011b-4d8d-8344-39ada5068de8, 19c33e1c-a1f7-4a8e-91d7-3d62166a6da8, 74754b3d-98d2-4880-8ca2-e3402b08d6e0, e2ea5a56-1e5d-44a6-a2d9-46cee3035fd9, fd3a56a0-89ad-49bb-8fa5-44504c24b79b'}, {'id': '873ff82e-3ead-48c3-a142-77935722e99d', 'description': 'A2', 'name': 'Patient', 'dataElementsCount': 5, 'dataElements': '9fd63130-50b3-4232-bc17-df6139b30fcf, 564efb08-5d51-4423-a5c0-7b706dfcd252, 9e72aeab-c465-4809-a9dc-2a7718d8182c, 1cf19761-e82f-4414-8110-54daaeaddaf3, c9a29115-2d0b-4df4-944c-131a1250cac7'}, {'id': '202f5f1b-c7ca-40d5-b6f8-ee7eb1a63686', 'description': 'A7', 'name': 'Referral', 'dataElementsCount': 9, 'dataElements': 'eb01ee56-1490-4506-a67d-808651e81ec4, 726ec98d-6e37-477c-af02-63333bf30a3b, bf5e5ccf-9e04-4f09-9aaf-c42eef810c58, 575a1330-7a61-4137-aa6e-e20070f53665, 3c0c2a1f-e0ca-4a81-b884-0a50b26a5db6, bc5b1c0f-8fbc-4e89-a56d-3ba18f077362, 92ab4d94-d88c-4fa2-8a83-f03d291b15a3, 484694ad-bb7f-46ee-bd4e-fb09673d0643, edd8d97f-6e1a-49b7-bfe0-48dd39185c91'}]}"
"{'title': 'Deaths – CHI, Community Health Index', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d1f', 'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE'}, 'keywords': ['Scotland'], 'contactPoint': 'hicsupport@dundee.ac.uk', 'abstract': 'This dataset provides a single view of which study participants are dead under which (or more often both) datasets (GRO and Demography). Tayside Circa. 1980 – Current; Fife: 2009 - Current.'}",faf2fc49-d09f-4ea2-a2cb-b1d30fffa406,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'https://www.geonames.org/2638360/scotland.html', 'typicalAgeRange': '0-150', 'followup': 'UNKNOWN', 'pathway': 'Death data is sourced from either the Scottish General Registry Office or the Community Health Index data feeds.'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '5c01bfbe-5bda-4ff9-b565-d18e6e5d57d8', '3.0.0': '69833273-2b81-4657-8d80-5bafb2c0834d', '0.0.1': '87183945-a2fe-4195-84f1-9b7baa267023', '2.0.0': '33e96a6f-8791-48c7-a440-889dba594c36', 'latest': '69833273-2b81-4657-8d80-5bafb2c0834d'}","{'description': 'This dataset combines the death information in the Demography and GRO datasets into a single dataset and applies rules to decide which date of death to trust when the information differs between sources.', 'isPartOf': 'University of Dundee Health Informatics Centre'}",69833273-2b81-4657-8d80-5bafb2c0834d,https://web.www.healthdatagateway.org/dataset/69833273-2b81-4657-8d80-5bafb2c0834d,"{'access': {'deliveryLeadTime': 'OTHER', 'accessService': 'HIC has implemented a remote-access ""Safe Haven"" environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details can be found via the link below:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/', 'jurisdiction': ['GB-SCT'], 'accessRights': ['https://www.dundee.ac.uk/hic/governanceapprovalsupport/'], 'dataController': 'University of Dundee'}, 'formatAndStandards': {'conformsTo': ['OMOP'], 'vocabularyEncodingScheme': ['OTHER'], 'language': ['en'], 'format': ['Database']}, 'usage': {'resourceCreator': ['Public Health Scotland'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['DISCLOSURE CONTROL']}}","{'origin': {'source': ['OTHER INFORMATION SYSTEM'], 'purpose': ['ADMINISTRATIVE'], 'collectionSituation': ['OTHER']}, 'temporal': {'accrualPeriodicity': 'MONTHLY', 'startDate': '2000-01-01', 'timeLag': '1-2 MONTHS', 'distributionReleaseDate': '2021-07-15'}}",2020-06-03T12:57:39Z,"[{'observedNode': 'PERSONS', 'measuredValue': '2200000', 'disambiguatingDescription': '2.2 million persons', 'observationDate': '15/07/2021', 'measuredProperty': 'Count'}, {'observedNode': 'EVENTS', 'measuredValue': '2200000', 'disambiguatingDescription': '2.2 million dates of death', 'observationDate': '15/07/2021', 'measuredProperty': 'Count'}]",3.0.0,,2021-07-19T13:12:54Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 5, 'structuralMetadata.columnName': 5, 'structuralMetadata.columnDescription': 5, 'structuralMetadata.dataType': 5, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'f0608ace-97ba-42a0-bab3-0ea2d4cea629', 'description': 'Patient death dates derived from the Community Health Index (CHI) and General Registry Office (GRO) datasets.', 'name': 'CHI_Deaths', 'dataElementsCount': 5, 'dataElements': 'cd0fbf22-04ad-4fac-9ca4-e735660b7ed9, c7ce75b1-d9d0-4c67-802c-10e5988782b0, 93a9cb92-62bf-417f-b6ac-6e64769e6095, 4347aa08-b3bf-4505-9bbf-14d47005059e, b78d62cb-7544-4198-8d5e-53f62a990ad8'}]}"
"{'title': 'National Asthma and COPD Audit Programme (NACAP): primary care workstream resources', 'publisher': {'name': 'HQIP', 'contactPoint': 'DataSharing@hqip.org.uk', 'memberOf': 'ALLIANCE'}, 'abstract': 'Dataset of record level Read and SNOMED coded data from general practices in Wales extracted in June 2019.  Includes patient demographics, investigation and diagnostic information and smoking, treatment and the provision of personalised asthma plans.', 'keywords': ['Asthma', 'Primary Care', 'COPD', 'NACAP', 'Audit', 'Workstream Resources'], 'contactPoint': 'DataSharing@hqip.org.uk'}",8a3ec96a-0600-4c6d-8761-9d277f07b9da,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'c2cdb358-3427-40c5-b559-822c580b30e0', '4.0.0': '6a11bc97-b57a-458f-8a3e-98c71221cb5c', '1.0.0': 'adc05985-2452-48f1-ab5c-6b6e7d0cdc40', '3.0.0': 'a895be78-f41c-40b8-b2fa-678a071a6427', '2.0.0': '5250ea8f-9431-455f-bb7b-f51c0b0ec419', 'latest': '6a11bc97-b57a-458f-8a3e-98c71221cb5c'}","{'description': 'Dataset of record level Read and SNOMED coded data from general practice computer systems in Wales extracted in June 2019. Data is included on all patients over the age of 18 recorded to have asthma or COPD and includes patient demographics, investigation and diagnostic information as well as smoking, treatment and the provision of personalised asthma plans.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",6a11bc97-b57a-458f-8a3e-98c71221cb5c,https://web.www.healthdatagateway.org/dataset/6a11bc97-b57a-458f-8a3e-98c71221cb5c,"{'formatAndStandards': {'language': ['en']}, 'access': {'jurisdiction': 'GB-GBN', 'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data\nhttps://www.rcplondon.ac.uk/projects/outputs/national-asthma-and-copd-audit-programme-nacap-resources', 'deliveryLeadTime': 'OTHER'}}",,2020-01-13T14:54:29Z,,4.0.0,,2021-04-14T08:13:21Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'North West London Patient Index (NWL PI)', 'contactPoint': 'researchers@registerfordiscover.org.uk', 'publisher': {'name': 'DISCOVER NOW', 'memberOf': 'HUB', 'contactPoint': 'researchers@registerfordiscover.org.uk'}, 'abstract': 'The NWL Patient Index linked tables holds demographics for patients registered to a practices within NWL such as patient age, gender, first language and ethnicity. Lower Super Output Area and Index of Multiple Deprivation Rank is also included.', 'doiName': 'In Progress', 'keywords': ['Patient Level Data', 'PLD', 'Discover-NOW', 'Patient Index', 'Integrated Care', 'Role-Based Access Control', 'RBAC', 'pseudonymised', 'demographics', 'COVID-19', 'COViD', 'Pathway', 'Real world data', 'Linked longitudina']}",1fe1e7bb-ef6e-4d89-9824-bb560afc81f0,"{'spatial': 'NHS Brent CCG; NHS Central London CCG; NHS Ealing CCG; NHS Hammersmith & Fulham CCG; NHS Harrow CCG; NHS Hillingdon CCG; NHS Hounslow CCG; NHS West London CCG', 'followup': '> 10 YEARS', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150', 'pathway': 'This is the patient index table generated from primary care registrations. Each patient will have an unique patient key that can be used to link to all other metadata available through Discover-NOW hub'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'4.0.0': '2f19548c-99d7-4f48-a418-d7afb77aebec', '5.0.0': '6a390359-1e26-470f-a4e5-bfb31a5ed643', '2.0.0': 'e0669b23-5187-4cc5-b243-e25ac2cb1865', '3.0.0': 'b232b32f-07d4-4fce-85a0-3834efd8757a', '1.0.0': 'cd452690-b0f7-4e9f-a41a-275c1276b3cc', '0.0.1': '96fdf788-0dec-4d8b-8f98-de2aeb6ec1d6', 'latest': '6a390359-1e26-470f-a4e5-bfb31a5ed643'}","{'description': ""When a patient or service user is treated or cared for, information is collected which supports their treatment. This information is also useful to commissioners and providers of NHS-funded care for 'secondary' purposes - purposes other than direct or 'primary' clinical care - such as:\n\nHealthcare planning\nCommissioning of services\nNational Tariff reimbursement\nDevelopment of national policy\nSUS is a secure data warehouse that stores this patient-level information in line with national standards and applies complex derivations which support national tariff policy and secondary analysis. \n\nAccess to SUS is managed using Role-Based Access Control (RBAC) which grants appropriate access levels to identifiable, anonymised or pseudonymised data based on the users job role."", 'isPartOf': 'PATIENT INDEX', 'associatedMedia': ['https://imperialcollegehealthpartners.com/discover-now/north-west-london-covid-19-data-repository/', 'https://www.nwlondonccgs.nhs.uk/professionals/whole-systems-integrated-care-wsic-dashboards-and-information-sharing/information-de-identified-users']}",6a390359-1e26-470f-a4e5-bfb31a5ed643,https://web.www.healthdatagateway.org/dataset/6a390359-1e26-470f-a4e5-bfb31a5ed643,"{'access': {'accessRights': ['https://imperialcollegehealthpartners.com/discover-now/nwl-covid-data-access/'], 'accessRequestCost': 'In Progress', 'deliveryLeadTime': '1-2 MONTHS', 'jurisdiction': 'GB', 'accessService': ""Researchers will have access to a VDI environment with a specific username and password. The researchers will get access to the datasets that is present in the hub's catalogue and would be able to carry out their research within the safe haven. There are restrictions applied which prevents the researchers from taking data out of the safe haven, once the research/analysis is completed the admin team will need to be contacted for taking the analysis off the safe haven"", 'dataProcessor': 'NHS BRENT CCG', 'dataController': 'Joint data controller model across North West London'}, 'usage': {'dataUseRequirements': ['COLLABORATION REQUIRED', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': 'NO RESTRICTION', 'investigations': ['https://www.registerfordiscover.org.uk/researchers/discover-for-researchers-and-industry'], 'resourceCreator': 'NHS Brent CCG', 'isReferencedBy': ['Bottleet al. BMC Medical Informatics and Decision Making (2020) 20:71 https://doi.org/10.1186/s12911-020-1082-7']}, 'formatAndStandards': {'conformsTo': 'LOCAL', 'vocabularyEncodingScheme': 'OTHER', 'language': 'en', 'format': ['Excel', 'SQL', 'Tableau', 'R']}}","{'origin': {'purpose': ['CARE', 'ADMINISTRATIVE'], 'collectionSituation': 'PRIMARY CARE', 'source': 'EPR'}, 'temporal': {'startDate': '2015-01-01', 'distributionReleaseDate': '2019-12-18', 'timeLag': '2-4 WEEKS', 'accrualPeriodicity': 'MONTHLY'}}",2020-01-10T17:02:19Z,"[{'observedNode': 'Persons', 'measuredValue': '2,684,730', 'disambiguatingDescription': '', 'observationDate': '2020-12-08', 'measuredProperty': 'Count'}]",5.0.0,"{'derivation': ['Long Term Conditions Electronic Frailty Index Q-Admissions Patient Segments Risk Segments'], 'qualifiedRelation': ['This can be linked to: Accident and Emergency Admitted Patient Care Outpatient Care High Cost drugs Primary care events Primary care prescriptions  Adult social care  Mental Health  Community']}",2021-03-01T10:28:51Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 29, 'structuralMetadata.columnName': 29, 'structuralMetadata.columnDescription': 29, 'structuralMetadata.dataType': 29, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '43e760bf-345e-44e7-bb79-772038669ac1', 'description': 'Patient Level Data Activity', 'name': 'Patient Level Data', 'dataElementsCount': 29, 'dataElements': 'c145e455-2340-4f98-b0fc-d70d219ac371, e723c7a0-d0ae-48e5-b763-171a156559ab, 9ce02659-33b6-4800-85b2-66cbbdabdeee, d02d86b8-3665-402f-8a3e-8d89de115040, 2007e209-797b-4dbe-be59-719388cd26ec, 4fca974d-69c6-4dc3-806e-73b66155b4cf, 1bab3221-8a58-468a-9ffb-99b9198464d4, 4a920d6b-40c1-41d7-b67f-5042793defd7, 42e3ff6c-67fc-4ed8-871b-6e4d49a0df6b, cd8ffb60-1888-4d33-80f9-db03413b3b52, b51b5db7-b326-47fd-870c-ecdcaf48ac77, 591327a7-55b0-4924-9f96-ac28d87db9ab, e576f786-4a35-4527-953e-73ff8c4bb1e5, 04522dce-5bf9-4a38-8a3a-79892ad7cd5c, acf22ec2-f7bb-49ef-a72c-232512b87964, 6374aecf-d02e-4c26-9771-3f3a9743913e, 7a7afa8b-02b4-43a3-8aac-42b28e13a7d1, 8a8bad0c-51ae-4fe9-860a-d084d1c4aeff, 1f2c9add-eecf-42c9-97f2-561977cd8137, 0b7d3f48-b688-4ff3-9638-8b6cd21cd71c, 94863980-4ee5-41b3-80b3-d9209ebd0301, 0143f355-04ab-4198-b43c-c3ca0b09cbb4, 05f6ce1e-a234-4737-9a45-3dea01e09d5b, 8daaec15-b46f-4448-a2ee-cdf1afa4b53e, fa5b5f66-d428-4799-a1d9-2782de8617fc, b26e9285-bdc4-4cf6-8b01-9eceac59462d, 6b641032-341f-4e88-8dc1-3f0063f24787, 4877dd13-3e0c-4d17-a158-baf6df60660a, 9e5f14ab-76c1-49c4-a5ff-15e99c75543f'}]}"
"{'title': 'Mental Health Services Data Set', 'contactPoint': 'enquiries@nhsdigital.nhs.uk', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'NHS DIGITAL', 'contactPoint': 'enquiries@nhsdigital.nhs.uk'}, 'abstract': 'The MHSDS includes patient level clinical and administrative data for patients, who are in contact with NHS funded mental health services in England. This data set defines the data items and values extracted from local electronic patient record systems.', 'keywords': ['Mental Health', 'Learning Disabilities', 'Child and Adolescent Mental Health Services', 'CAMHS', 'MH', 'LD', 'Assuring Transformation', 'AT', 'MHMDS', 'MHLDDS', 'DIGITRIALS', 'NCS', 'National Core Study', 'COVID-19']}",fa2ec63d-f76d-4555-8fc1-f4bd66e3c60d,"{'spatial': 'England', 'typicalAgeRange': '0-150', 'followup': 'OTHER', 'pathway': 'Secondary Mental Health Care Pathway except adult Improving Access to Psychological Therapies (IAPT)', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': 'd612e29a-c26a-4512-99d4-548514b60c76', '5.0.0': '6a63513f-92cb-43ce-b0dd-fdb1113150c9', '3.0.0': 'f3fb7124-4dd7-46ae-851f-90c325131565', '1.0.0': '5e37caad-4777-4d7e-be17-32220d8fed05', '4.0.0': '0d5bb5b4-ad38-4313-8b19-cd37491c0b41', 'latest': '6a63513f-92cb-43ce-b0dd-fdb1113150c9'}","{'description': 'The Mental Health Services Data Set is a patient level, output based, secondary uses data set which aims to deliver robust, comprehensive, nationally consistent and comparable person-based information for children, young people and adults who are in contact with mental health services located in England or located outside England but treating patients commissioned by an English CCG or NHS England specialised commissioner. As a secondary uses data set it re-uses clinical and operational data for purposes other than direct patient care, for example: commissioning, service improvement and service design. It defines the data items, definitions and associated value sets extracted or derived from local Electronic Patient Record systems.\n\nIn Scope:\nAll activity relating to people who receive specialist secondary mental health care services and have, or are thought to have, a mental illness; or who receive specialist secondary learning disabilities or autism spectrum disorder services and have, or are thought to have, a learning disability or autism spectrum disorder is within scope of the MHSDS.\nThe scope of the data set requires record level data submission for each person attending a service located in England:\n•\tif the person is wholly funded by the NHS data submission for that person is mandatory\n•\tif the person is partially funded by the NHS data submission for that person is mandatory\n•\tif the person is wholly funded by any means that is not NHS data submission is optional\n\nFor each person attending a service located outside England, but commissioned by an English CCG or NHS England specialised commissioner:\n•\tdata submission is optional.\n\nIncluded Organisation Types:\nService providers and organisations that provide specialist secondary mental health and/or learning disabilities and/or autism spectrum disorder services including:\n•\tNHS Mental Health Trusts\n•\tNHS Learning Disabilities Trusts\n•\tNHS Acute Trusts\n•\tNHS Care Trusts\n•\tIndependent sector healthcare providers offering a service model that includes NHS funded patients\n•\tAny qualified provider offering specialist secondary mental health, learning disabilities or autism spectrum disorder services\n•\tCommunity services offering secondary care to children\n\n\nOut of Scope:\nThe following areas are currently out of scope and should not be included:\n•\tAny patient receiving treatment through an in-scope service but is not thought to have a mental illness, learning disability or autism spectrum disorder e.g.\no\tSmoking cessation services\no\tAddictions and substance misuse services \no\tSome alternative therapy services\no\tSome counselling services.\n•\tMental health, learning disabilities, and autism spectrum disorder services provided only at a primary care level (such as within general practices or adult IAPT).\n\nAdditional information inc. technical specifications and user guidance: \nhttps://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-sets/mental-health-services-data-set', 'associatedMedia': ['https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-sets/mental-health-services-data-set'], 'isPartOf': 'NOT APPLICABLE'}",6a63513f-92cb-43ce-b0dd-fdb1113150c9,https://web.www.healthdatagateway.org/dataset/6a63513f-92cb-43ce-b0dd-fdb1113150c9,"{'access': {'accessService': 'Once your DARS application has been approved, data will be made available either by secure file transfer or through the Data Access Environment (DAE).\n\nSecure file transfer: https://digital.nhs.uk/services/transfer-data-securely\n\nDAE: https://digital.nhs.uk/services/data-access-environment-dae', 'deliveryLeadTime': '2-6 MONTHS', 'accessRequestCost': 'https://digital.nhs.uk/services/data-access-request-service-dars/data-access-request-service-dars-charges', 'accessRights': ['https://digital.nhs.uk/services/data-access-request-service-dars'], 'dataProcessor': 'Not Applicable', 'dataController': 'NHS DIGITAL', 'jurisdiction': 'GB-ENG'}, 'usage': {'dataUseRequirements': ['ETHICS APPROVAL REQUIRED', 'NOT FOR PROFIT USE', 'PROJECT SPECIFIC RESTRICTIONS', 'USER SPECIFIC RESTRICTION'], 'resourceCreator': 'NHS DIGITAL', 'dataUseLimitation': 'NO RESTRICTION', 'investigations': ['https://digital.nhs.uk/services/data-access-request-service-dars/register-of-approved-data-releases']}, 'formatAndStandards': {'format': ['Tab Delimited Text', 'XML', 'JSON', 'MS Access'], 'vocabularyEncodingScheme': ['OPCS4', 'READ', 'SNOMED CT', 'NHS NATIONAL CODES', 'ICD10'], 'conformsTo': ['NHS DATA DICTIONARY', 'OTHER'], 'language': 'en'}}","{'origin': {'collectionSituation': ['OUTPATIENTS', 'IN-PATIENTS', 'COMMUNITY', 'OTHER'], 'source': ['EPR', 'OTHER'], 'purpose': ['TRIAL', 'AUDIT', 'ADMINISTRATIVE', 'FINANCIAL', 'OTHER']}, 'temporal': {'timeLag': '2-6 MONTHS', 'startDate': '2016-01-01', 'accrualPeriodicity': 'MONTHLY'}}",2020-11-25T14:43:17Z,"[{'observedNode': 'Events', 'measuredValue': '357042', 'disambiguatingDescription': 'New referrals were received into mental health services during October 2020, as recorded in the mental health services dataset\n', 'observationDate': '2020-11-19', 'measuredProperty': 'Count'}, {'observedNode': 'Persons', 'measuredValue': '1358959', 'disambiguatingDescription': 'At the end of October 2020 there were 1,358,959 people in contact with mental health services recorded in the mental health services dataset', 'observationDate': '2020-11-19', 'measuredProperty': 'Count'}, {'observedNode': 'Persons', 'measuredValue': '20644', 'disambiguatingDescription': 'People were subject to the Mental Health Act at the end of October 2020 as recorded in the mental health services dataset', 'observationDate': '2020-11-19', 'measuredProperty': 'Count'}]",5.0.0,"{'derivation': ['MHSDS full and bespoke extracts available through DARS.'], 'qualifiedRelation': ['Community Services Data Set (CSDS)', 'Improving Access To Psychological Therapies (IAPT) data set', 'Maternity Services Data Set (MSDS)']}",2021-04-09T20:05:39Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 14, 'structuralMetadata.columnName': 14, 'structuralMetadata.columnDescription': 14, 'structuralMetadata.dataType': 14, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '4ddf08dd-83b4-4389-8535-a953fc065f18', 'description': 'MHSDS', 'name': 'Mental Health Services Data Set', 'dataElementsCount': 14, 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"{'title': 'UHB Linked Diabetic Eye Disease from National Screening to Hospital Eye Care', 'keywords': ['Background Diabetic Retinopathy', 'Digital Surveillance', 'Clinically Significant Macular Oedema', 'Diabetic Retinopathy', 'Diabetic Maculopathy', 'Diabetes Mellitus Type 1', 'Diabetes Mellitus Type 2', 'National Screening Grading', 'Gestational Diabetes', 'Haemorrhage', 'Hospital Eye Service', 'Images', 'Microaneurysm', 'Non-Proliferative Diabetic Retinopathy', 'New Vessels', 'Proliferative Diabetic Retinopathy', 'Optical Coherence Tomography', 'Pregnancy', 'Retina', 'Referral', 'Screening', 'Screening Programme', 'Vision', 'Visual Acuity', 'Macrovascular Compilations', 'Microvascular Complications', 'Cataract', 'Glaucoma', 'Outcomes'], 'publisher': {'name': 'INSIGHT', 'identifier': '5f8437a3b7dec2a83e8cceba', 'memberOf': 'HUB'}, 'contactPoint': 'enquiries@insight.hdrhub.org', 'abstract': 'The diabetic eye pathway from diabetic eye screening to hospital eye care from the Queen Elizabeth Hospital, Birmingham. Key data included are demographics, national screening diabetic grade, visual data, treatment and longitudinal visual outcomes.'}",7c087b3c-cc04-4d3d-894b-7ea5419fa714,"{'followup': '> 10 YEARS', 'pathway': 'This dataset is representative of the patient pathway for community screening of diabetic eye\xa0disease and grading. \xa0This DES dataset is linked within this dataset to include those patients who\xa0were then subsequently seen at the Ophthalmology Department at the Queen Elizabeth Hospital, University\xa0Hospitals Birmingham\xa0NHS Trust for worsening of their diabetic eye disease. \xa0This limits the dataset to only those patients who have been seen both in screening and then subsequently in the hospital for eye disease', 'spatial': ['https://www.geonames.org/11591953/west-midlands.html'], 'typicalAgeRange': '12-110', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '6a9a3c4c-95d4-45da-9520-c3b9aceb6d13'},"{'description': 'Background:\nDiabetes mellitus affects over 3.9 million people in the United Kingdom (UK), with over 2.6 million people in England alone. Diabetic retinopathy (DR) is a common microvascular complication of type 1 and type 2 diabetes and remains a major cause of vision loss and blindness in those of working age. This dataset includes the national screening diabetic grade category (seven categories from R0M0 to R3M1) from the Birmingham, Solihull and Black Country DR screening program (a member of the National Health Service (NHS) Diabetic Eye Screening Programme) and the Queen Elizabeth Hospital, University Hospitals Birmingham NHS Trust ophthalmology treatment and visual outcome data.  \n\nGeography:\nThe West Midlands has a population of 5.9 million. The region includes a diverse ethnic, and socio-economic mix, with a higher than UK average of minority ethnic groups. It has a large number of elderly residents but is the youngest population in the UK. There are particularly high rates of diabetes, physical inactivity, obesity, and smoking.\n\nData sources:  \n1. The Birmingham, Solihull and Black Country Data Set, University Hospitals Birmingham NHS Foundation Trust, Birmingham, United Kingdom. They manage over 200,000 diabetic patients, with longitudinal follow-up up to 15 years, making this the largest urban diabetic eye screening scheme in Europe. \n2. The Electronic Health Records from the Ophthalmology clinic at Queen. Elizabeth Hospital, University Hospitals Birmingham NHS Foundation.\n\nScope: \nAll Birmingham, Solihull and Black Country diabetic eye screened participants who have been see in ophthalmology outpatients at University Hospitals Birmingham NHS Foundation from 2006 onwards. Longitudinal and individually linked with their diabetic eye care from primary screening data and secondary hospital eye care including \n• Demographic information (including age, sex and ethnicity)\n• Diabetes status\n• Diabetes type\n• Length of time since diagnosis of diabetes \n• Visual acuity\n• The national screening diabetic screening grade category (seven categories from R0M0 to R3M1)\n• Diabetic eye clinical features\n• Reason for sight and severe sight impairment\n• Ocular treatment including laser treatment and surgical treatment\n• Visual Outcome', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://www.insight.hdrhub.org/']}",6a9a3c4c-95d4-45da-9520-c3b9aceb6d13,https://web.www.healthdatagateway.org/dataset/6a9a3c4c-95d4-45da-9520-c3b9aceb6d13,"{'usage': {'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS'], 'isReferencedBy': ['Not applicable'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'investigations': [''], 'resourceCreator': ['University Hospitals Birmingham NHS Foundation Trust']}, 'access': {'accessRights': ['https://www.insight.hdrhub.org/'], 'dataProcessor': 'NOT APPLICABLE', 'accessService': 'INSIGHT adheres to HDRUK data access principles including the five SAFES; anonymised data is provided into an agreed Trusted Research Environment such as the PIONEER Microsoft Azure TRE at University Hospitals Birmingham NHSFT or equivalent external safe environment, under data license.', 'accessRequestCost': ['https://www.insight.hdrhub.org/'], 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'deliveryLeadTime': '2-6 MONTHS', 'jurisdiction': ['GB-ENG', 'GB-GB']}, 'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['NHS NATIONAL CODES'], 'conformsTo': ['LOCAL'], 'format': ['SQL', 'Images', 'CSV']}}","{'temporal': {'accrualPeriodicity': 'ANNUAL', 'startDate': '2005-01-01', 'timeLag': '2-4 WEEKS', 'distributionReleaseDate': '2021-07-31'}, 'origin': {'source': ['EPR'], 'collectionSituation': ['CLINIC', 'OUTPATIENTS', 'IN-PATIENTS'], 'purpose': ['CARE']}}",2021-10-22T13:11:31Z,"[{'observedNode': 'EVENTS', 'measuredValue': '18782', 'disambiguatingDescription': 'Data of patients seen in Diabetic Retinopathy screening service and in the hospital opthalamology department\n', 'observationDate': '22/02/2021', 'measuredProperty': 'Count'}]",1.0.0,"{'tools': ['https://www.gov.uk/government/publications/diabetic-eye-screening-retinal-image-grading-criteria'], 'derivation': ['Not Available'], 'qualifiedRelation': ['None']}",2021-10-22T13:11:32Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 16, 'structuralMetadata.tableName': 16, 'structuralMetadata.tableDescription': 16, 'structuralMetadata.dataElementsCount': 163, 'structuralMetadata.columnName': 163, 'structuralMetadata.columnDescription': 163, 'structuralMetadata.dataType': 163, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'cb9eee00-8572-49bd-a25e-b823deb44dfd', 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"{'title': 'Synthetic Dataset: Patients at risk of sudden death: hypertrophic cardiomyopathy', 'contactPoint': 'PIONEER@UHB.NHS.UK', 'publisher': {'name': 'PIONEER', 'contactPoint': 'PIONEER@UHB.NHS.UK', 'memberOf': 'HUB'}, 'abstract': 'Synthetic data replicating 30,000 ethnically diverse hypertrophic cardiomyopathy patients. Granular demography, symptomatology, co-morbidity, investigations (including ECG, ECHO, CPEX & genetics), clinical and biological phenotyping, procedures & outcomes', 'keywords': ['synthetic', 'health data', 'hypertrophic cardiomyopathy patients', 'breathlessness', 'chest pain', 'palpitations', 'arrhythmias', 'sudden cardiac death', 'genotype', 'phenotype', 'results of ECG', 'cardiopulmonary exercise test', 'ECHO', 'Left bundle branch block', 'atrial fibrilliation', 'pre-excitation', 'family history', 'smoking', 'BMI', 'exercise', 'cardiovascular magnetic imaging', 'pacemaker', 'defibrillator', 'outcomes', 'demography', 'age', 'ethnicity', 'hospital events', 'care pathways', 'diagnostic delay']}",7b1c1f1a-4fb2-452d-9a3c-7748992b1fa4,"{'spatial': 'West Midlands Region, UK', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'OTHER', 'pathway': 'The West Midlands (WM) has a population of 5.9million & includes a diverse ethnic, socio-economic mix. There is a higher than average percentage of minority ethnic groups with Birmingham having a population which is >40% non-white. WM has a large number of elderly residents but Birmingham is one of the youngest cities in the UK.  There is social deprivation and Birmingham’s population suffers with particularly high rates of illness; including cerebrovascular Disease, physical inactivity, obesity, smoking, hypertension, ischaemic heart disease & diabetes.  There are also high levels of rare diseases, especially immunometabolic conditions. This in turns leads to high levels of infections.    The patients included in this dataset are representative of this diverse population and also include a wide age-range. \n\nUniversity Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & 100 ITU beds. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '6ae22437-38d7-4c47-b529-e100e15c81ab'},"{'description': 'Synthetic Dataset: Patients at risk of sudden death: hypertrophic cardiomyopathy\n\nBackground\nWell-created synthetic data establishes a governance risk-free environment for health care algorithm development and experimentation. This includes the evaluation of new treatment models, care management systems, clinical decision support, and more. Synthetic data is of particular use in rare diseases, where real data may be in short supply, or to replicate disease in less common patient demographics (such as certain ethnicities or co-morbid combinations).\n\nFamilial hypertrophic cardiomyopathy (HCM) is a rare genetic condition characterized by thickening (hypertrophy) of the cardiac muscle, usually of the interventricular septum. Many affected individuals have no symptoms. Other people may experience chest pain; breathlessness and fainting. Arrhythmias can be life threatening and HCM is associated with an increased risk of sudden death. Some affected individuals develop potentially fatal heart failure, which may require heart transplantation.  Approximately 130,000 people have HCM in the UK, but there is a significant burden of undiagnosed disease and diagnostic delay.  Inheritance is autosomal dominant, with the most commonly involved genes being MYH7, MYBPC3, TNNT2, and TNNI3. \n\nPIONEER geography\nThe West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix. There is a higher than average percentage of minority ethnic groups and rare diseases including HCM, with a  regional specialist HCM service.\n\nEHR. University Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & 100 ITU beds.  UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.  \n\nScope: This synthetic dataset reflects the diversity of the WM and the granularity of the HCM service.  It replicates longitudinal data including the care journey prior to diagnosis.  It includes ECHO provocation, CPEX, ECG including evidence of pre-excitation, as well as symptoms, family history, genetic testing and HCM phenotype. Outcomes and procedures are included.   \n\nAvailable supplementary data:\nSynthetic Ambulance data. Real HCM patient data, including from secondary and ambulance settings – forming a synthetic algorithm “build” and real “test” datasets.\n\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.', 'isPartOf': 'NOT APPLICABLE'}",6ae22437-38d7-4c47-b529-e100e15c81ab,https://web.www.healthdatagateway.org/dataset/6ae22437-38d7-4c47-b529-e100e15c81ab,"{'formatAndStandards': {'format': ['csv'], 'vocabularyEncodingScheme': 'LOCAL', 'language': 'en', 'conformsTo': 'LOCAL'}, 'access': {'deliveryLeadTime': '1-2 MONTHS', 'accessRequestCost': 'www.pioneerdatahub.co.uk/data/data-services-costs/', 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'dataProcessor': 'NOT APPLICABLE', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'jurisdiction': 'GB-GBN', 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.'}, 'usage': {'dataUseLimitation': 'GENERAL RESEARCH USE', 'dataUseRequirements': 'PROJECT SPECIFIC RESTRICTIONS', 'resourceCreator': 'This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)'}}","{'origin': {'purpose': 'OTHER', 'source': 'MACHINE GENERATED', 'collectionSituation': 'IN-PATIENTS'}, 'temporal': {'timeLag': 'NOT APPLICABLE', 'distributionReleaseDate': '2021-02-22', 'accrualPeriodicity': 'STATIC'}}",2021-04-09T12:22:46Z,"[{'observedNode': 'Events', 'measuredValue': '30000', 'disambiguatingDescription': 'Synthetic Data, generated using a Naïve Bayes model', 'observationDate': '2021-02-22', 'measuredProperty': 'Count'}]",0.0.1,,2021-04-09T12:19:43Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 2, 'structuralMetadata.tableName': 2, 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"{'title': 'Moorfields AMD Dataset 002', 'publisher': {'name': 'INSIGHT', 'identifier': '5f8437a3b7dec2a83e8cceba', 'memberOf': 'HUB'}, 'abstract': 'AMD Dataset at Moorfields Eye Hospital NHS Foundation Trust is a longitudinal dataset consisting of routinely collected imaging and clinical metadata from patients receiving treatment for age-related macular degeneration (AMD) from 2004 to the present.', 'contactPoint': 'enquiries@insight.hdrhub.org', 'keywords': ['Eylea', 'Ophthalmology', 'Referral', 'Vision', 'Topcon', 'ranibizumab', 'aflibercept', 'AMD', 'Wet AMD', 'Wet', 'Eye', 'MEH', 'Left', 'Right', 'Injection', 'Diagnosis', 'Eye condition', 'Laterality', 'Ophthalmology', 'Dry AMD', 'Topcon', 'OCT', 'Colour photo', 'Age-Related Macular Degeneration', 'Surgery', 'Modality', 'Heidelberg', 'Macular', 'Protocol', 'Cataract', 'Glaucoma', 'Diabetes', 'DMO', 'DR ', 'Ocular', 'Optic', 'Lucentis', 'Eye drop', 'IVT', 'Treatment', 'VA ', 'Visual Acuity']}",bf392537-82b4-4d71-ace0-e7bea3b167fb,"{'physicalSampleAvailability': ['OTHER'], 'spatial': ['https://www.geonames.org/2648147/great-britain.html'], 'pathway': 'The dataset is representative of the entire pathway for patients receiving treatment for age-related macular degeneration (AMD) at Moorfields Eye Hospital NHS Foundation Trust .', 'followup': '> 10 YEARS', 'typicalAgeRange': '49-101'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': 'df6aee16-b3ba-4653-b750-0f046528caf4', '3.0.0': '6af010f2-5973-486f-a44b-ef296455bee6', 'latest': '6af010f2-5973-486f-a44b-ef296455bee6'}","{'description': 'The Moorfields AMD Dataset is a longitudinal dataset consisting of routinely collected imaging and clinical metadata from patients receiving treatment for age-related macular degeneration (AMD) at Moorfields Eye Hospital NHS Foundation Trust, from 2004 to the present. \n\nThis dataset encompasses all patients at Moorfields Eye Hospital NHS Foundation Trust - a leading provider of eye health services in the UK and a world-class centre of excellence for ophthalmic research and education - who have received at least one injection of either Lucentis (ranibizumab) or Eylea (aflibercept). 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"{'title': 'National Cancer TRE', 'publisher': {'memberOf': 'HUB', 'identifier': '607db9c3e1f9d3704d570cf6', 'name': 'DATA-CAN'}, 'keywords': ['Cancer', 'Trusted Research Environment', 'COVID-19', 'Dataset', 'Episodes', 'Hospital', 'Diagnosis', 'Inpatients', 'Emergency', 'Operations', 'Admission', 'Finished Consultant Episode', 'Finished Admission Episode', 'FCE', 'FAE', 'Episode', 'Day Case', 'Ordinary', 'Elective', 'Waiting List', 'Planned', 'Main Speciality', 'Treatment Speciality', 'External Cause', 'Hospital Activity', 'HES', 'APC', 'DIGITRIALS', 'National Core Study', 'NCS', 'Accident', 'A&E', 'A&E Department', 'Major Injuries', 'Minor Injuries', 'Urgent Care', 'Arrival Method', 'Ambulance', 'A&E Waiting Time', 'Initial Assessment', 'Time in A&E', 'Re-attendance', 'Unplanned Investigation', 'Treatment', 'Outpatients', 'Appointment', 'Attendance', 'Did Not Attend', 'DNA', 'Cancellation', 'Attendance Type', 'Procedure', 'COVID-19 Hospitalisation in England Surveillance System', 'ICU', 'High Dependency', 'HOSPITALISATION', 'TESTING', 'LABORATORY', 'RISK', 'OUTCOME', 'TREATMENT', 'Deaths', 'GRO', 'Deceased', 'English Deaths', 'Registered Deaths', 'England Deaths', 'ONS'], 'abstract': 'NHS Digital’s Trusted Research Environment service for England provides approved researchers with access to essential linked, de-identified health data to answer COVID-19 related questions. TRE service provides researchers support on data access requests.', 'contactPoint': 'datacan@uclpartners.com'}",b5439bc5-8141-4a13-a024-a6db2003b40e,"{'pathway': 'Enumerating the impact of COVID-19 on cancer pathways: a robust evaluation of the NHS Digital Trusted Research Environment (TRE).\n \nWe will delineate the precise impact of the COVID 19 pandemic on cancer systems and cancer patients. This requires access to both historical data (pre 2020) and near real-time data on patients referred with (i) a suspicion of cancer and (ii) those diagnosed with and/or managed for cancer. Our emphasis is on data on cancer referral, cancer diagnosis, cancer treatment and cancer outcomes, examining the impact of age, ethnicity, deprivation, comorbidity and concurrent medication.\n \nWe will examine the effects of COVID-19 on:\n•\tCancer referral (including those which lead to a cancer diagnosis and those where cancer is excluded)\n•\tCancer diagnosis (including date, tumour site, stage, grade, morphology and key molecular/genetic/ phenotype)\n•\tCancer treatment (including surgical procedures, chemotherapy/targeted therapy and radiotherapy) \n•\tClinical trial activity including recruitment to and active treatment within trials \n•\tOutcomes (including both hospital admission, survival, mortality and cause of death)\n•\tCOVID status (including COVID testing (Pillar 1&2) and results, acute hospitalisation and related direct COVID deaths in cancer patients). We will also examine the interaction and impact of other factors including \n•\tAge\n•\tEthnicity\n•\tSocial deprivation (IMD quintile)\n•\tComorbidity (based on both hospital and primary care data) \n•\tConcurrent medication (including both hospital and primary care data)\n•\tGeography including rurality and health care region\n•\tRates of COVID infection, hospitalisation and death in discrete health care regions \n \nWe will compare activity from 2019 and 2020 but to include patients diagnosed with cancer at any time before then.', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': '> 10 YEARS', 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '34f9be53-2445-439b-8ca4-f151359d7e46', '1.0.0': '6bbafb1d-09d3-443f-83db-cfd3a58a5e20', 'latest': '6bbafb1d-09d3-443f-83db-cfd3a58a5e20'}","{'description': 'NHS Digital’s TRE service for England provides approved researchers with access to essential linked, de-identified health data to quickly answer COVID-19 related research questions. The TRE service provides researchers with support on data access requests, provision of data using the secure data platform the Data Processing Service (DPS) and help with analysis work. Approved research projects will help to guide national decision making and recommend potential interventions to reduce the severity of COVID-19 outcomes.\nNHSD are delivering the TRE service in partnership with\xa0HDRUK.\xa0\xa0The shared objective is to provide rapid, safe and trustworthy access to data in a transparent way that accelerates the pace of quality research.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://digital.nhs.uk/coronavirus/coronavirus-data-services-updates/trusted-research-environment-service-for-england']}",6bbafb1d-09d3-443f-83db-cfd3a58a5e20,https://web.www.healthdatagateway.org/dataset/6bbafb1d-09d3-443f-83db-cfd3a58a5e20,"{'usage': {'dataUseRequirements': ['COLLABORATION REQUIRED', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['DATA-CAN The HDR UK Hub for Cancer']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['OPCS4', 'SNOMED CT', 'DM+D', 'NHS NATIONAL CODES', 'ODS', 'ICD10'], 'language': ['en'], 'conformsTo': ['HL7 FHIR', 'NHS DATA DICTIONARY'], 'format': ['text/json', 'text/xml', 'text/csv']}, 'access': {'dataController': 'University of Leeds\nLeeds Teaching Hospital Trust', 'accessRequestCost': ['https://digital.nhs.uk/services/data-access-request-service-dars/data-access-request-service-dars-charges'], 'accessService': 'Organisations and individuals wanting to use certain kinds of data need to show they meet strict data governance standards by completing the NHS Digital DARS application process. \n\nThe DARS team makes sure we only supply sensitive patient level data to organisations that look after it according to Information Governance (IG) requirements, and use it to improve health and care services.', 'accessRights': ['https://digital.nhs.uk/services/data-access-request-service-dars'], 'jurisdiction': ['GB-ENG'], 'deliveryLeadTime': '2-6 MONTHS', 'dataProcessor': 'University of Leeds\nLeeds Teaching Hospital Trust'}}","{'origin': {'source': ['EPR'], 'collectionSituation': ['CLINIC', 'PRIMARY CARE', 'ACCIDENT AND EMERGENCY', 'OUTPATIENTS', 'IN-PATIENTS', 'SERVICES', 'COMMUNITY', 'PHARMACY'], 'purpose': ['CARE', 'DISEASE REGISTRY', 'ADMINISTRATIVE']}, 'temporal': {'timeLag': '1-2 MONTHS', 'distributionReleaseDate': '2021-03-01', 'startDate': '2001-11-20', 'accrualPeriodicity': 'CONTINUOUS'}}",2021-02-25T13:57:07Z,[{}],1.0.0,"{'tools': ['https://databricks.com/'], 'derivation': ['The purpose of the Cancer TRE is to use nationally available datasets both COVID surveillance and routine activity data to address specific research questions'], 'qualifiedRelation': ['CHESS', 'COVID Antigen Testing Pillar 2', 'GPES', 'HES', '', 'Primary Care Meds']}",2022-04-05T14:02:25Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 40, 'structuralMetadata.tableName': 40, 'structuralMetadata.tableDescription': 40, 'structuralMetadata.dataElementsCount': 5654, 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"{'title': 'Sheffield Brain Tissue Bank (SBTB)', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY', 'contactPoint': 'l.baxter@sheffield.ac.uk'}, 'doiName': 'Not Available', 'abstract': 'Collection of samples and data across the following diseases: Motor neuron disease (disorder)', 'contactPoint': 'l.baxter@sheffield.ac.uk', 'keywords': ['Motor neuron disease (disorder)', 'SBTB', 'Brain Tissue Bank', 'UKCRC Tissue Directory', 'Sheffield']}",bdda7221-7c02-4ced-b7a8-3806a073d981,"{'typicalAgeRange': 'Not Known', 'physicalSampleAvailability': ['IN PROGRESS'], 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '530941cf-edfd-4e00-94ab-37bed6c119de', '3.0.0': '6bc36f07-d55a-4a97-afab-29d93dc65bde', '1.0.0': 'f3dc5260-1d24-409a-aece-6d145e08b5e9', '2.0.0': 'a49a1145-4334-4c2a-81cb-90155e8f05c6', 'latest': '6bc36f07-d55a-4a97-afab-29d93dc65bde'}","{'description': ""Sheffield Brain bank comprises of tissue samples mainly of Degenerative diseases (MND, Alzheimer's)"", 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",6bc36f07-d55a-4a97-afab-29d93dc65bde,https://web.www.healthdatagateway.org/dataset/6bc36f07-d55a-4a97-afab-29d93dc65bde,"{'formatAndStandards': {'vocabularyEncodingScheme': ['NULL'], 'language': ['en'], 'conformsTo': ['NULL'], 'format': ['In Progress']}, 'access': {'dataController': 'University of Sheffield', 'jurisdiction': 'GB-ENG', 'accessRequestCost': 'Not specified', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'dataProcessor': 'Not Applicable'}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}}","{'temporal': {'startDate': '1982-01-01', 'distributionReleaseDate': '2019-03-11', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:16:40Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T16:13:12Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Leicester Respiratory Research Database', 'publisher': {'contactPoint': 'breathe.saildatabank@swansea.ac.uk', 'memberOf': 'HUB', 'name': 'BREATHE'}, 'keywords': ['Research', 'Leicester', 'Respiratory', 'Biomedical', 'BREATHE'], 'abstract': 'An ethically approved database of patients consenting to contact for recruitment and/or use of their data for research purposes held by Leicester Biomedical Research Centre - Respiratory', 'doiName': 'In Progress', 'contactPoint': 'breathe.saildatabank@swansea.ac.uk'}",01c3d08c-6948-4059-a027-3437e4f5d53b,"{'typicalAgeRange': '16-99', 'pathway': 'The data set focusses on a single specialty (respiratory) and includes adult patients recruited through a single hospital trust.', 'followup': 'OTHER', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'United Kingdom'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '7048a66f-8068-4c0f-8d50-0accfcb7a4b3', '5.0.0': '6bca5d27-5b98-45e7-b834-6980ba5db5c9', '1.0.0': '9d73417a-a4a9-4c56-b8fd-5a74fa6a342b', '2.0.0': 'd1bd7851-b5f1-4b26-917c-201855f33747', '4.0.0': '5138fa73-6695-413d-9d03-a40ecad98fb5', '3.0.0': '663146dd-0bc3-4d12-95c7-50873a3d45b6', 'latest': '6bca5d27-5b98-45e7-b834-6980ba5db5c9'}","{'description': 'Leicester Biomedical Research Centre - Respiratory (LBRC) holds this ethically approved database designed for recruitment and research purposes. Adult members of the public and patients are invited to participate in the database by reading and signing an information sheet and consent form. The research section of the database stores anonymised data and information to be used for respiratory research purposes (no identifiable information). Researchers, either internal or external to the LBRC, are invited to formally apply to use the database for research purposes.', 'isPartOf': 'NOT APPLICABLE'}",6bca5d27-5b98-45e7-b834-6980ba5db5c9,https://web.www.healthdatagateway.org/dataset/6bca5d27-5b98-45e7-b834-6980ba5db5c9,"{'access': {'deliveryLeadTime': 'OTHER', 'jurisdiction': 'GB', 'accessRights': ['http://www.leicsrespiratorybru.nihr.ac.uk/our-research/respiratory-research-database/'], 'dataController': 'Department of Health Sciences, University of Leicester', 'dataProcessor': 'Department of Health Sciences, University of Leicester'}, 'formatAndStandards': {'format': ['TSV'], 'language': 'en', 'conformsTo': 'LOCAL', 'vocabularyEncodingScheme': ['LOCAL', 'ICD10']}, 'usage': {'dataUseLimitation': 'RESEARCH SPECIFIC RESTRICTIONS', 'resourceCreator': 'Leicester Biomedical Research Centre - Respiratory', 'dataUseRequirements': 'PROJECT SPECIFIC RESTRICTIONS'}}","{'temporal': {'startDate': '2013-09-20', 'accrualPeriodicity': 'IRREGULAR', 'timeLag': 'NOT APPLICABLE', 'distributionReleaseDate': '2019-02-25'}, 'origin': {'purpose': ['STUDY', 'DISEASE REGISTRY'], 'collectionSituation': ['CLINIC', 'IN-PATIENTS'], 'source': ['EPR', 'ELECTRONIC SURVEY']}}",2020-01-13T15:48:21Z,"[{'observedNode': 'Persons', 'measuredValue': '2350', 'disambiguatingDescription': 'Patients who have consented for their data to be used for research. The data includes information on their respiratory condition and linked pathology, admission and respiratory physiology data.', 'observationDate': '2021-03-01', 'measuredProperty': 'Persons consented for research'}]",5.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-03-03T15:05:30Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Leeds Breast Research Tissue Bank', 'publisher': {'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE', 'contactPoint': 'bcntb@leeds.ac.uk'}, 'doiName': 'Not Available', 'abstract': 'Collection of samples and data across the following diseases: Benign tumour of breast, Fit and well, Malignant tumour of breast.', 'keywords': ['UKCRC Tissue Directory', 'Leeds Breast Research Tissue Bank', 'Malignant tumour of breast', 'LBRTB', 'Fit and well', 'Benign tumour of breast'], 'contactPoint': 'bcntb@leeds.ac.uk'}",2dc1218d-df5f-4025-826c-cf5ca7d67882,"{'physicalSampleAvailability': ['PERIPHERAL BLOOD CELLS', 'PLASMA', 'SERUM', 'TISSUE', 'WHOLE BLOOD'], 'typicalAgeRange': '15-150', 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'f66c843e-2ca6-4708-ab23-f3dafe97d64b', '3.0.0': '6bde3902-5d69-4c24-9d10-f84a63efdb22', '1.0.0': '30144fc5-3252-419d-a27a-d5b998460d49', '2.0.0': '6951e949-6aa3-4670-ad05-db8e954b3524', 'latest': '6bde3902-5d69-4c24-9d10-f84a63efdb22'}","{'description': ""The Leeds Breast Research Tissue Bank (LBRTB) was established in 2010 and collects malignant and normal breast tissue and associated samples from donors consented through the Leeds Teaching Hospitals Trust. The LBRTB is based in the Leeds Institute of Cancer and Pathology on the St. James's University Hospital site and is led by Professor Valerie Speirs. The LBRTB is a founder member of the Breast Cancer Now Tissue Bank (BCNTB), a ground-breaking multi-million pound initiative linking five centres around the country working together as one national resource. The BCNTB represents the UK's single largest unique collection of high quality breast tissue samples."", 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",6bde3902-5d69-4c24-9d10-f84a63efdb22,https://web.www.healthdatagateway.org/dataset/6bde3902-5d69-4c24-9d10-f84a63efdb22,"{'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}, 'access': {'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED.', 'dataController': 'University of Leeds', 'accessRights': 'Please contact the publisher using Contact Point details provided.', 'dataProcessor': 'Not Applicable', 'jurisdiction': 'GB-ENG', 'accessRequestCost': 'Not specified'}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2010-01-01'}}",2020-01-13T17:05:23Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:03:11Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Moorfields Eye Image BioResource 001', 'publisher': {'name': 'INSIGHT', 'identifier': '5f8437a3b7dec2a83e8cceba', 'memberOf': 'HUB'}, 'contactPoint': 'enquiries@insight.hdrhub.org', 'keywords': ['Moorfields Eye Hospital', 'Bilateral', 'Diabetic retinopathy', 'Right', 'Lucentis', 'IVT', 'Treatment', 'Injections', 'VA', 'DR', 'NHS', 'IOP', 'Visual Acuity', 'Test', 'Lens', 'AMD', 'DME', 'Laterality', 'Ophthalmology', 'Diagnosis', 'Age-related macular degeneration', 'Cataracts', 'Series', 'DMO', 'Eyes', 'Left', 'Diabetes', 'Wet AMD', 'Refraction', 'Genetics', 'Dry AMD', 'Diabetic macular oedema', 'Glaucoma', 'Exam', 'Laser', 'Protocol', 'Topcon', 'Heidelberg', 'Image', 'Scan', 'Eylea'], 'abstract': 'The Imaging and Ocular Phenotype Bioresource at Moorfields Eye Hospital NHS Foundation Trust is a longitudinal eye imaging dataset comprising routinely collected patient data from 2001 to the present. This dataset has in excess of 13M high quality images.'}",6bfe44ef-9532-4986-b8a2-9c2cda4a89cc,"{'pathway': 'The dataset is representative of the entire medical specialty of ophthalmology, encompassing the full range of subspecialties within this field.', 'followup': '> 10 YEARS', 'spatial': ['https://www.geonames.org/2648147/great-britain.html'], 'physicalSampleAvailability': ['OTHER'], 'typicalAgeRange': '0-103'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '6c12c555-c011-4f43-b98f-df0bfaad6b05'},"{'description': 'The Imaging and Ocular Phenotype BioResource consists of routinely collected imaging data at Moorfields Eye Hospital NHS Foundation Trust - a leading provider of eye health services in the UK and a world-class centre of excellence for ophthalmic research and education. \n\nMoorfields has a Data Lake of over 13 million eye images supplemented with almost 1.2 million new images added each year. This BioResource data includes longitudinal sequential scans and metadata descriptors for approximately 13.2 million eye images from 319,048 patients who attended routine outpatient appointments and ophthalmic accident and emergency at Moorfields sites across Greater London.  \n\nThe metadata includes eye imaging modalities, such as optical coherence tomography (OCT), retinal photographs (including ultra-wide field imaging, CP-Colour Photo, IRP-Infrared Photo, FA-Fluorescein Angiography, ICGA-Indocyanine Green Angiography, RF-Red Free, AF-Autoflourescence, IRAF-Infrared Autoflourescence, BAF-Blue Autoflourescence).', 'isPartOf': 'Not Applicable'}",6c12c555-c011-4f43-b98f-df0bfaad6b05,https://web.www.healthdatagateway.org/dataset/6c12c555-c011-4f43-b98f-df0bfaad6b05,"{'access': {'deliveryLeadTime': '2-6 MONTHS', 'dataController': 'Moorfields Eye Hospital NHS Foundation Trust', 'accessService': 'INSIGHT is developing its data access environment for researchers.  INSIGHT releases anonymised data, under strict data licence arrangements, to external secure environments, subject to appropriate due diligence and contracting.', 'dataProcessor': 'Not Applicable', 'accessRights': ['https://www.insight.hdrhub.org/researcher-area'], 'jurisdiction': ['GB-GBN'], 'accessRequestCost': ['https://www.insight.hdrhub.org/contact']}, 'formatAndStandards': {'format': ['CSV', 'Image'], 'language': ['en'], 'conformsTo': ['NHS DATA DICTIONARY', 'OTHER'], 'vocabularyEncodingScheme': ['OTHER']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'resourceCreator': ['INSIGHT Health Data Hub']}}","{'origin': {'collectionSituation': ['CLINIC', 'ACCIDENT AND EMERGENCY', 'OUTPATIENTS', 'IN-PATIENTS'], 'purpose': ['STUDY'], 'source': ['MACHINE GENERATED', 'OTHER']}, 'temporal': {'timeLag': '1-2 MONTHS', 'accrualPeriodicity': 'CONTINUOUS', 'startDate': '2001-07-09'}}",2021-10-22T14:08:52Z,"[{'observedNode': 'PERSONS', 'measuredProperty': '319048', 'disambiguatingDescription': '604,168 Eyes with 13,237,510 Images', 'observationDate': '01/01/2021', 'measuredValue': '319048'}]",4.0.0,{'derivation': ['Not Applicable']},2021-10-22T14:08:52Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 25, 'structuralMetadata.columnName': 25, 'structuralMetadata.columnDescription': 25, 'structuralMetadata.dataType': 25, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'ee8234cc-fb89-4247-90fa-0593f0911159', 'description': 'This table contains the image metadata', 'name': 'images', 'dataElementsCount': 25, 'dataElements': '0363fbf6-8a21-49af-95e0-d8bd521459ca, ced7c166-0a26-4ce9-8ebb-828b0aa16c1b, a2539521-23f0-4f8a-94a9-4e2135b848bf, 7b48646c-9bf7-4746-9709-0ec9745ac075, 3aafb706-bf52-4737-9ea7-487f4c0a0c7c, 456aac36-80ca-4121-b3e7-8b5e1ba540e0, cb300bf6-29e9-4438-8a42-4f0266ab4f49, 3188aa10-a8e5-4293-a5d4-91cde57c6b57, 6969ad25-9704-425d-9629-0b38cbf5d57c, 1470c6e7-1677-4b21-b8e1-a77012c9b256, 4f6f316b-464e-4b4e-af9e-26cb547fc620, e9907672-d6da-4325-bc58-d55e78661f19, 2d14ef68-da50-4d4d-b092-ce84dcdae90d, efb3c8fa-ee01-4ae5-90fa-30cb5b54d67c, ae6c3502-dd02-4e59-b300-df53313ff866, 601751d8-64af-4728-9134-d32c62439b99, 246b340c-f684-40ae-af95-b9db17ed6c58, fae017e2-74f6-49a9-a8d9-69166177d85f, 3e92e54a-3c65-46a0-9804-61cbb53da0e1, 8608aaea-8551-4c8f-9354-268ecea749e7, 360cb6aa-a8fe-4c96-93ed-0f4448fef718, 53d1b629-20de-43bd-81e4-616ff9544d0a, c2087d59-b152-4d8e-90cf-5ff7e069f6b5, 9a7cc8a8-e1a7-48db-aba8-94686e3597f2, 41e5d9c7-e085-4ec9-a639-62f58470fa4f'}]}"
"{'title': 'Effects of second-hand smoke on pregnant women: a phenomenological study', 'publisher': {'memberOf': 'HUB', 'name': 'BREATHE', 'identifier': '607db9c2e1f9d3704d570ce6'}, 'abstract': 'More than 40% of all pregnant women in Pakistan are exposed to second-hand smoke causing approximately 17,000 still births in a year. This will be a qualitative study incorporating an initial stage of systematic review followed by formative research.', 'keywords': ['Pregnant woman', 'BREATHE', 'Second-hand smoke', 'RESPIRE', 'Pakistan'], 'contactPoint': 'RESPIRE@ed.ac.uk'}",4a5c610f-019d-450a-90c5-0fe315027f56,"{'typicalAgeRange': '18-150', 'spatial': 'https://www.geonames.org/1168579/islamic-republic-of-pakistan.html', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '7480abe4-e073-40ef-882d-217542b5e08e', '2.0.0': '6cae7a61-568d-40b1-984a-1dd9365f9c71', '1.0.0': 'e810f678-fbb5-4732-bd9d-aa6ea6c060db', 'latest': '6cae7a61-568d-40b1-984a-1dd9365f9c71'}","{'description': 'More than 40% of all pregnant women in Pakistan are exposed to second-hand smoke (SHS) – causing approximately 17,000 still births in a year. SHS exposure in non-smoking pregnant women has increased the risk of stillbirth and congenital malformation along with behavioral and cognitive issues in children. Partner’s support during pregnancy is important for developing a better maternal health. Therefore, an evidence-informed conceptual framework will be developed to propose a behaviour change communication intervention, which will target poor or risky behaviors to promote behaviour modification that may result in positive maternal and fetal health outcomes. This will be a qualitative study incorporating an initial stage of systematic review followed by formative research.\n\nFor further information, see: https://www.ed.ac.uk/usher/respire/acute-respiratory-disorders/second-hand-smoke', 'isPartOf': 'BREATHE'}",6cae7a61-568d-40b1-984a-1dd9365f9c71,https://web.www.healthdatagateway.org/dataset/6cae7a61-568d-40b1-984a-1dd9365f9c71,"{'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': ['RESPIRE Collaboration']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'format': ['text'], 'language': ['en']}, 'access': {'jurisdiction': ['PK'], 'accessRights': ['https://www.ed.ac.uk/usher/respire/about/projects'], 'dataProcessor': 'RESPIRE', 'dataController': 'RESPIRE', 'accessService': 'Access is managed on a project-by-project basis. Contact the RESPIRE team'}}","{'temporal': {'timeLag': 'NOT APPLICABLE', 'startDate': '2019-09-01', 'accrualPeriodicity': 'STATIC', 'endDate': '2021-01-31'}}",2020-09-02T11:48:51Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '17000', 'observationDate': '31/01/2021', 'measuredProperty': 'Count'}]",2.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-08-17T16:45:32Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Vascular Registry Audit Carotid Lower Limb Amputation clinical dataset', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'HQIP', 'contactPoint': 'DataSharing@hqip.org.uk'}, 'contactPoint': 'DataSharing@hqip.org.uk', 'abstract': 'The dataset contains continuously ascertained patient-level data for patients undergoing lower limb amputation in NHS hospitals in England, Wales, Scotland and Northern Ireland. It includes information on  referral, pre-procedural investigations,', 'keywords': ['Carotid', 'NVR', 'Lower', 'Clinical', 'Limb', 'Amputation', 'Registry', 'Vascular']}",03e77b9d-57b8-44d5-8d64-9b1325958b22,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'dd4e6391-69d9-4da6-bc9b-c35508968d9b', '3.0.0': '6cd16bca-395b-4dbc-a817-15fd55a1a8e8', '1.0.0': '9f0c82a2-fa12-4c4a-861f-af936d3ebb0e', '2.0.0': '12690263-f5d3-435b-9582-de1a88064e1e', 'latest': '6cd16bca-395b-4dbc-a817-15fd55a1a8e8'}","{'description': 'The dataset contains continuously ascertained patient-level data for patients undergoing lower limb amputation in NHS hospitals in England, Wales, Scotland and Northern Ireland. It includes information on referral, pre-procedural investigations, procedural details, post-operative pathway, additional unplanned procedures, readmission, follow up and in-hospital and 30-day mortality.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",6cd16bca-395b-4dbc-a817-15fd55a1a8e8,https://web.www.healthdatagateway.org/dataset/6cd16bca-395b-4dbc-a817-15fd55a1a8e8,"{'access': {'deliveryLeadTime': 'OTHER', 'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data', 'jurisdiction': 'GB-GBN'}, 'formatAndStandards': {'language': ['en']}}",,2020-01-13T14:55:20Z,,3.0.0,,2021-04-14T08:16:10Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'DARWIN1 Trial', 'keywords': ['DARWIN1', 'Trial', 'UKCRC Tissue Directory', 'Malignant tumour of lung'], 'publisher': {'contactPoint': 'ctc.darwin1@ucl.ac.uk', 'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY'}, 'abstract': 'Collection of samples and data across the following diseases: Malignant tumour of lung', 'doiName': 'Not Available', 'contactPoint': 'ctc.darwin1@ucl.ac.uk'}",7f9672fa-dad5-479d-a929-52719e8cc2fa,"{'spatial': 'England', 'physicalSampleAvailability': ['IN PROGRESS'], 'typicalAgeRange': 'Not Known'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '6db1466d-8f56-4b42-8e80-5bbf3eb0c975', '3.0.0': '6ceec25d-2c8e-4dd7-8f99-2e56ec63c298', '1.0.0': 'a9dd9ff3-cd88-442a-bfaa-a8a2b64f0332', '2.0.0': '1bb2c353-8d91-4989-a21b-26182262b807', 'latest': '6ceec25d-2c8e-4dd7-8f99-2e56ec63c298'}","{'description': 'Blood and tissue from lung cancer patients', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",6ceec25d-2c8e-4dd7-8f99-2e56ec63c298,https://web.www.healthdatagateway.org/dataset/6ceec25d-2c8e-4dd7-8f99-2e56ec63c298,"{'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}, 'access': {'dataController': 'UCL', 'dataProcessor': 'Not Applicable', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'jurisdiction': 'GB-ENG', 'accessRequestCost': 'Not specified'}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2018-01-01', 'distributionReleaseDate': '2018-10-31'}}",2020-01-13T17:05:18Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T15:57:52Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Exploring Personal Preparedness and Self-Protective Measures during COVID-19', 'publisher': {'memberOf': 'HUB', 'identifier': '607db9c2e1f9d3704d570ce6', 'name': 'BREATHE'}, 'keywords': ['RESPIRE', 'Bangladesh', 'personal', 'preparedness', 'self-protective', 'COVID-19', 'Pandemic', 'Qualitative', 'Healthcare workers', ""Cox's Bazar""], 'abstract': 'This project will explore the perceptions and feelings of Frontline Health Care Workers  (including doctors, nurses and community health workers) in Cox’s Bazar, about personal preparation and protective measures for FHCWs during the COVID-19 pandemic', 'contactPoint': 'RESPIRE@ed.ac.uk'}",680a7d41-0fd1-4b32-a2cd-190e338f8ac7,"{'spatial': 'https://www.geonames.org/1337202/cox-s-bazar-zila.html', 'typicalAgeRange': '19-30'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '07216bc3-227a-4aa8-bc1a-3e9b3fc2b895', '2.0.0': '6dd170f2-c9fe-4496-9499-26783d84e3c2', 'latest': '6dd170f2-c9fe-4496-9499-26783d84e3c2'}","{'description': 'Frontline health care workers (FHCWs) face a number of safety concerns when providing services during the current COVID-19 pandemic, with a significant number catching the virus themselves.\n\nAs the pandemic escalates, there is a need to establish an effective, and socially and culturally sensitive, protection system to protect FHCWs.\n\nThere is a lack of research relating to low and middle-income country FHCWs’ perceived behaviour, including their understanding of personal preparation and self-protective measures in a pandemic.\n\nThere are particular needs exemplified by working in refugee settings of intense humanitarian crises.\n\nThere is currently no global information on how COVID-19 will impact refugee settings. FHCWs in these settings face exceptional challenges, working with limited resources, with a population who are fearful of external authority systems, and who have endured many atrocities.\n\nThis project will explore the perceptions and feelings of a community of FHCWs (including doctors, nurses and community health workers) in Cox’s Bazar, about personal preparation and protective measures for FHCWs during the COVID-19 pandemic.\n\nFor more information please see: https://www.ed.ac.uk/usher/respire/covid-19/personal-preparedness-health-care-workers', 'associatedMedia': ['https://www.ed.ac.uk/usher/respire/covid-19/personal-preparedness-health-care-workers']}",6dd170f2-c9fe-4496-9499-26783d84e3c2,https://web.www.healthdatagateway.org/dataset/6dd170f2-c9fe-4496-9499-26783d84e3c2,"{'access': {'dataController': 'RESPIRE', 'jurisdiction': ['BD'], 'accessRights': ['https://www.ed.ac.uk/usher/respire/contact-us'], 'accessService': 'Access is managed on a project-by-project basis. Contact the RESPIRE team.'}, 'usage': {'resourceCreator': ['RESPIRE Collaboration']}, 'formatAndStandards': {'language': ['en'], 'conformsTo': ['LOCAL'], 'format': ['text'], 'vocabularyEncodingScheme': ['LOCAL']}}","{'origin': {'purpose': ['STUDY']}, 'temporal': {'timeLag': 'NOT APPLICABLE', 'endDate': '2020-09-30', 'startDate': '2020-07-01', 'accrualPeriodicity': 'STATIC', 'distributionReleaseDate': '2020-09-30'}}",2021-08-11T08:24:20Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '30', 'observationDate': '30/09/2020', 'measuredProperty': 'Count'}]",2.0.0,,2021-10-19T15:38:02Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Introducing pulse oximetry in IMNCI, primary health facilities in Pune India', 'publisher': {'memberOf': 'HUB', 'name': 'BREATHE', 'contactPoint': 'RESPIRE@ed.ac.uk'}, 'keywords': ['pulse oximetry', 'India', 'Integrated Management of Childhood Illness', 'RESPIRE', 'Pune', 'BREATHE', 'primary health'], 'contactPoint': 'RESPIRE@ed.ac.uk', 'abstract': 'Assessing the feasibility of introducing pulse oximetry in the Integrated Management of Childhood Illness programme in Pune and explore barriers to and facilitators of effective implementation with assessment of the readiness of the public health system.'}",dae5b81c-db28-414b-9328-5596632a8732,"{'spatial': 'India', 'typicalAgeRange': '<5', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'ecc4daf2-e58a-4ebc-9608-4bc741231fb9', '1.0.0': '6dd62b6b-d832-4c65-a101-20fe9edd75fc', 'latest': '6dd62b6b-d832-4c65-a101-20fe9edd75fc'}","{'description': 'The aim of the project is to assess the feasibility of introducing pulse oximetry (PO) in the Integrated Management of Childhood Illness (IMCI) programme in Pune and explore barriers to and facilitators of effective implementation with assessment of the readiness of the public health system.\n\nPneumonia is a leading cause of childhood mortality, accounting for 16% of under-five deaths globally – with the majority occurring in low- and middle-income countries.\n\nFor the management of common childhood illnesses, including pneumonia, in low-resource settings, adoption of Integrated Management of Childhood Illness (IMCI) is globally recommended. IMCI classifications depend on the clinical assessment skills of service providers and this subjectivity might lead to misclassification and inappropriate referral/treatment.\n\nHypoxemia (low levels of oxygen in the blood) is one of the strongest predictors of pneumonia mortality. Hypoxemia can be measured simply and effectively using pulse oximetry (PO).\n\nThe latest IMCI guidelines, from the World Health Organization (WHO), include the use of PO to classify severity of pneumonia in children and manage accordingly. Current IMCI practices in Pune district do not include PO in the treatment algorithms.\n\nThe aim of the project is to assess the feasibility of introducing PO in the IMCI programme in Pune and explore barriers to and facilitators of effective implementation with assessment of the readiness of the public health system.\n\nFor further information, see: https://www.ed.ac.uk/usher/respire/acute-respiratory-disorders/pulse-oximetry-india""', 'isPartOf': 'BREATHE'}",6dd62b6b-d832-4c65-a101-20fe9edd75fc,https://web.www.healthdatagateway.org/dataset/6dd62b6b-d832-4c65-a101-20fe9edd75fc,"{'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'conformsTo': ['LOCAL']}, 'access': {'dataProcessor': 'RESPIRE', 'deliveryLeadTime': 'OTHER', 'jurisdiction': 'IN', 'accessRights': 'Access is managed on a project-by-project basis. Contact the RESPIRE team: https://www.ed.ac.uk/usher/respire/about/projects', 'dataController': 'RESPIRE'}, 'usage': {'resourceCreator': 'RESPIRE Collaboration'}}","{'temporal': {'startDate': '2020-09-01', 'endDate': '2021-02-28'}}",2020-08-25T18:27:27Z,,1.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-04-14T08:28:24Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Wales Cancer Bank', 'doiName': 'Not Available', 'contactPoint': 'parry-jonesa@cf.ac.uk', 'publisher': {'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE', 'contactPoint': 'parry-jonesa@cf.ac.uk'}, 'keywords': ['Malignant upper respiratory tract neoplasm', 'Malignant connective tissue neoplasm', 'UKCRC Tissue Directory', 'Malignant skin neoplasm', ""Hodgkin's disease"", 'Wales', 'WCB', 'Malignant endometrium of corpus uteri neoplasm', 'Cancer Bank'], 'abstract': ""Samples & data for following diseases: Hodgkin's disease ,Malignant connective tissue  neoplasm,Malignant endometrium of corpus uteri neoplasm,Malignant skin neoplasm,Malignant upper respiratory tract neoplasm and others.\nFull list in Description…""}",37886fb5-d0ae-400f-89eb-78664897bcf2,"{'spatial': 'Wales', 'physicalSampleAvailability': ['DNA', 'PLASMA', 'RNA', 'SERUM', 'TISSUE', 'WHOLE BLOOD'], 'typicalAgeRange': '15-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': 'bcfdc597-1bf0-41c2-8b68-779f9a115f83', '3.0.0': '6dd6c679-7c5f-4d8e-b1e4-8f1447425e96', '0.0.1': 'ad6ade80-3d09-4706-981a-7585d3b22375', '1.0.0': '18b539d3-7c4b-4940-9d57-3e21b067cdfc', 'latest': '6dd6c679-7c5f-4d8e-b1e4-8f1447425e96'}","{'description': ""The Wales Cancer Bank (WCB) was set up in 2004 and consented the first patient in 2005. The project is hosted by Cardiff University and receives funding from the Welsh Government, Cancer Research Wales and Velindre Charitable funds.\nA Cancer Bank is literally a collection of tissue and blood which has been collected from patients where cancer is a possible diagnosis and is being stored to facilitate future research into cancer.\nStatistics suggest that four out of ten people will be diagnosed with cancer at some point during their life. Cancers are complex diseases and it is an on-going quest to understand how they develop, spread and can be treated. The development of more effective, targeted treatment for cancer depends on increased understanding of the molecular mechanisms involved in the initiation of the tumour, its progression to metastatic disease and response and resistance to treatment. Research studies rely on the availability of high quality biological material from patients with cancer and large studies are needed to correlate biology with clinical outcome.\nThe Welsh population is relatively stable and this makes it an ideal cohort to collect and study. Linkage with the all Wales cancer clinical database (CANISC) enables good correlation of science with clinical follow-up. This will eventually enable the results from hundreds of research projects to be integrated and linked to clinical outcome and this will be an invaluable source of data for bioinformatics specialists to examine. All the data collected is being stored on a database housed in the NHS to ensure security and confidentiality.\nThe WCB currently consents patients in 12 hospitals around Wales with specially trained research nurses and clinical teams.\nWe provide access to collection of samples and data across the following diseases: \n•\tHodgkin's disease (disorder)\n•\tMalignant neoplasm of connective tissue (disorder)\n•\tMalignant neoplasm of endometrium of corpus uteri (disorder)\n•\tMalignant neoplasm of skin\n•\tMalignant neoplasm of upper respiratory tract (disorder)\n•\tMalignant tumour of adrenal gland (disorder)\n•\tMalignant tumour of anal canal (disorder)\n•\tMalignant tumour of biliary tract (disorder)\n•\tMalignant tumour of cervix\n•\tMalignant tumour of kidney (disorder)\n•\tMalignant tumour of nasal sinuses (disorder)\n•\tMalignant tumour of oral cavity (disorder)\n•\tMalignant tumour of penis (disorder)\n•\tMalignant tumour of prostate (disorder)\n•\tMalignant tumour of salivary gland (disorder)\n•\tMalignant tumour of small intestine (disorder)\n•\tMalignant tumour of stomach (disorder)\n•\tMalignant tumour of testis (disorder)\n•\tMalignant tumour of thyroid gland (disorder)\n•\tMalignant tumour of urinary bladder (disorder)\n•\tMalignant tumour of vagina (disorder)\n•\tMalignant tumour of vulva (disorder)\n•\tMalignant tumour of breast\n•\tMalignant tumour of colon\n•\tMalignant tumour of lung\n•\tMalignant tumour of oesophagus\n•\tMalignant tumour of ovary\n•\tMalignant tumour of pancreas"", 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",6dd6c679-7c5f-4d8e-b1e4-8f1447425e96,https://web.www.healthdatagateway.org/dataset/6dd6c679-7c5f-4d8e-b1e4-8f1447425e96,"{'access': {'jurisdiction': 'GB-WLS', 'accessRequestCost': 'Not specified', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'dataController': 'Cardiff University', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'dataProcessor': 'Not Applicable'}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}}","{'temporal': {'startDate': '2005-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:14:20Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:17:50Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'HES Accident and Emergency data for CPRD GOLD', 'publisher': {'name': 'CPRD', 'memberOf': 'ALLIANCE', 'identifier': '607db9c2e1f9d3704d570cee'}, 'abstract': 'CPRD GOLD linked Hospital Episode Statistics Accident and Emergency (HES A&E) data contain records of care administered in the NHS accident and emergency setting in England, including dates, referral sources, diagnoses and treatments.', 'keywords': ['Emergency', 'Accident', 'HES', 'A&E'], 'contactPoint': 'enquiries@cprd.com', 'doiName': 'https://doi.org/10.48329/xtwg-gp32'}",733b1060-f958-4c3e-ab6a-2b87901d9a9a,"{'typicalAgeRange': '0-115', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Secondary care', 'followup': '1 - 10 YEARS', 'spatial': ['https://www.geonames.org/6269131/england.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'4.0.0': '8895d3d9-78bd-4216-986a-3bb7f864c382', '5.0.0': '6e1400af-cdad-4843-b8f2-ccc7d444e833', '3.0.0': 'c55b92d8-889d-435c-b0cb-2d9f7b432839', '2.0.0': '222b6842-1ecd-4742-bbdd-7b5a27326d2b', '1.0.0': '1727e91b-2c66-41c8-a7cb-98da65e257af', '0.0.1': '1c35dd39-614a-434d-8e61-507e67fa1a56', 'latest': '6e1400af-cdad-4843-b8f2-ccc7d444e833'}","{'description': 'CPRD GOLD linked Hospital Episode Statistics Accident and Emergency (HES A&E) data contain individual records of patient care administered in the accident and emergency setting in England. These data are a subset of national A&E data collected by NHS England to monitor the national standard that 95% of patients attending A&E should wait no longer than 4 hours from arrival to admission, transfer or discharge. A&E data are submitted by A&E providers of all types in England. Data collected includes details about patients’ attendance, outcomes of attendance, waiting times, referral source, A&E diagnosis, A&E treatment (drugs prescribed not recorded), A&E investigations and Health Resource Group. \nHES A&E may be used to clarify the health care pathway, to quantity health resource use and costs in the emergency setting, and to assess variations in the uptake of emergency services over time.', 'isPartOf': 'CPRD GOLD', 'associatedMedia': ['https://www.cprd.com/linked-data']}",6e1400af-cdad-4843-b8f2-ccc7d444e833,https://web.www.healthdatagateway.org/dataset/6e1400af-cdad-4843-b8f2-ccc7d444e833,"{'access': {'accessRequestCost': ['https://www.cprd.com/pricing'], 'accessService': 'Access to CPRD data, including UK Primary Care Data, and linked data such as Hospital Episode Statistics, is subject to protocol approval via CPRD’s Research Data Governance (RDG) Process. Independent scientific and patient advice is provided by Expert Review Committees (ERCs) and the Central Advisory Committee (CAC): https://www.cprd.com/research-applications', 'dataProcessor': 'CPRD', 'deliveryLeadTime': 'VARIABLE', 'jurisdiction': ['GB-ENG'], 'accessRights': ['HTTPS://CPRD.COM/DATA-ACCESS'], 'dataController': 'Clinical Practice Research Datalink (CPRD)'}, 'usage': {'isReferencedBy': ['[]'], 'investigations': ['https://www.cprd.com/protocol-list'], 'dataUseRequirements': ['GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'NO LINKAGE', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'resourceCreator': ['NHS Digital']}, 'formatAndStandards': {'format': ['Tab delimited text'], 'vocabularyEncodingScheme': ['ICD10', 'ODS', 'OPCS4', 'SNOMED CT'], 'language': ['en'], 'conformsTo': ['NHS DATA DICTIONARY']}}","{'temporal': {'distributionReleaseDate': '2021-09-06', 'accrualPeriodicity': 'QUARTERLY', 'startDate': '2004-07-20', 'timeLag': 'MORE 6 MONTHS', 'endDate': '2020-03-31'}, 'origin': {'collectionSituation': ['ACCIDENT AND EMERGENCY'], 'purpose': ['CARE'], 'source': ['EPR']}}",2020-01-10T18:12:15Z,"[{'observedNode': 'PERSONS', 'measuredValue': 8024752, 'disambiguatingDescription': 'Number of CPRD GOLD patients matched to single HES identifier', 'observationDate': '06/09/2021', 'measuredProperty': 'Count'}]",5.0.0,"{'derivation': ['N/A'], 'tools': ['[]'], 'qualifiedRelation': ['CPRD GOLD', 'CPRD GOLD SGSS', 'CPRD GOLD CHESS', 'CPRD GOLD ICNARC', 'Death Registration data for CPRD GOLD', 'HES Admitted Patient Care data for CPRD GOLD', 'HES Outpatient data for CPRD GOLD', 'HES Diagnostic Imaging Dataset for CPRD GOLD', 'Patient postcode linked deprivation measures for CPRD GOLD', 'Practice postcode linked deprivation measures for CPRD GOLD', 'Rural-Urban classification for CPRD GOLD', 'Cancer registration 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"{'title': 'TwinsUK', 'keywords': ['Cohort', 'Fit and well', 'UKCRC Tissue Directory', 'Alleviate', 'COVID-19 ', 'UK Longitudinal Linkage Collaboration', 'UK LLC', 'Self-Reported Data', 'Physical Measures', 'Cognitive Measures', 'Biochemical Measures', 'Omics', 'Genetic', 'BioBank', 'Twin', 'Heritability'], 'publisher': {'name': 'TWINS UK', 'identifier': '60cb52377018342af889e972', 'memberOf': 'OTHER'}, 'contactPoint': 'victoria.vazquez@kcl.ac.uk', 'abstract': ""TwinsUK follows the lives of adult twins to understand how genetic variation relates to health and ageing. Over 30 years, collected data comprises self-reported, physical and cognitive measures, biochemical measures, 'omics and a wealth of biosamples.""}",19b4cd38-3828-4bb1-a980-4f7420658965,"{'spatial': ['https://www.geonames.org/2635167/united-kingdom-of-great-britain-and-northern-ireland.html'], 'typicalAgeRange': '18-100', 'physicalSampleAvailability': ['CORE BIOPSY', 'DNA', 'FAECES', 'IMMORTALIZED CELL LINES', 'PERIPHERAL BLOOD CELLS', 'PLASMA', 'RNA', 'SALIVA', 'SERUM', 'SWABS', 'TISSUE', 'URINE', 'WHOLE BLOOD', 'OTHER'], 'pathway': 'Fit and well', 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '0c244de2-a2a0-469c-9554-2da31c5301f2', '8.0.0': '6eef1d16-2283-4932-aa6c-c71ae7fa9e3e', '1.0.0': 'b5fbbe57-6de5-49de-acfd-bd8df915c56b', '2.0.0': '9419a99b-f1fb-4566-8480-eecd4e189086', '3.0.0': '3ce4870c-5062-4d01-8801-2cf505b979b7', '5.0.0': '45ecc3ea-7597-442c-9b41-13f05ec95d28', '6.0.0': 'a241064c-e44d-4d18-8b2b-940a3103f782', '7.0.0': 'e031cb49-e8ef-4fc8-91bb-d8bacb6afe7a', '4.0.0': 'bb42dbfc-b4ef-443d-a4bb-8f5249ac6762', 'latest': '6eef1d16-2283-4932-aa6c-c71ae7fa9e3e'}","{'description': ""The TwinsUK cohort (https://twinsuk.ac.uk/), set up in 1992, is a major volunteer-based genomic epidemiology resource with longitudinal deep genomic and phenomics data from over 15,000 adult twins (18+) from across the UK who are highly engaged and recallable. The cohort is predominantly female (80%) for historical reasons. It is one of the most deeply characterised adult twin cohort in the world, providing a rich platform for scientists to research health and ageing longitudinally. There are over 700,000 biological samples stored and data collected on twins with repeat measures at multiple timepoints. Extremely large datasets (billions of data points) have been generated for each TwinsUK participant over 30 years, including phenotypes from questionnaires, multiple clinical visits, and record linkage, and genetic and ‘omic data from biological samples. TwinsUK ensures derived datasets from raw data are returned by collaborators to enhance the resource. TwinsUK also holds a wide range of laboratory samples, including plasma, serum, DNA, faecal microbiome and tissue (skin, fat, colonic biopsies) within HTA-regulated facilities at King's College London. \n\nMore recently, postal and at-home collection strategies have allowed sample collections from frail twins, our whole cohort for COVID-19 studies, and for new twin recruits. The cohort is recallable either on a four-year longitudinal sweep visit or, based on diagnosis or genotype. \n\nMore than 1,000 data access collaborations and 250,000 samples have been shared with external researchers, resulting in over 800 publications since 2012. \n\nTwinsUK is now working to link to twins’ official health, education and environmental records for health research purposes, which will further enhance the resource, education and environmental records for health research purposes, which will further enhance the resource."", 'associatedMedia': ['https://twinsuk.ac.uk/'], 'isPartOf': 'UKCRC Tissue Directory, Alleviate and UK Longitudinal Linkage Collaboration'}",6eef1d16-2283-4932-aa6c-c71ae7fa9e3e,https://web.www.healthdatagateway.org/dataset/6eef1d16-2283-4932-aa6c-c71ae7fa9e3e,"{'access': {'accessRequestCost': ['TwinsUK operate on a cost recovery basis regarding data provision. Current application costs for data are as follows:  £1140 – for basic and published datasets £1620 – for omics data £570 – for Data Access amendments Please note: Requests for samples, new data collections and non-standard and complex data access proposals will be subject to bespoke costs  https://twinsuk.ac.uk/resources-for-researchers/our-data/ '], 'accessService': 'To access access the TwinsUK data or if you are interested in proposing a collaboration with us, please first read through the Data Access Policy Document  which will give you the necessary background information.\n\nYou will then need to complete a “Data Access Proposal Form” and email the completed form to the Data Access Manager Victoria Vazquez for consideration by the Department of Twin Research Executive Committee (TREC).\nWe encourage collaboration either on the analysis of these phenotypes or on novel phenotypes.\n\nThe proposal should specify the data and/or samples required clearly. Individual variables need to be listed with an appropriate justification describing the aims/hypothesis of the project for which the data is requested.\n\nNo attempt should be made to link or combine the data provided under this agreement to other information or archived data available for the data sets provided, even if access to that data has been formally granted to you, or it is freely available without restriction, unless specific permission to do so has been received from the TwinsUK TREC.\n\nPlease be aware that our governance does not allow extensive, untargeted AI data requests and therefore we will not be able to support these applications.\n\nThere may be costs associated for your request to be fulfilled.', 'jurisdiction': ['GB-ENG', 'GB-GBN'], 'accessRights': ['https://twinsuk.ac.uk/resources-for-researchers/access-our-data/'], 'deliveryLeadTime': '2-6 MONTHS', 'dataProcessor': ""King's College London"", 'dataController': ""King's College London""}, 'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL'], 'format': ['MS Excel', 'CSV', 'SPSS', 'Stata', 'R'], 'conformsTo': ['LOCAL']}, 'usage': {'resourceCreator': ['TwinsUK is funded by the Wellcome Trust, Medical Research Council, Versus Arthritis, European Union Horizon 2020, Chronic Disease Research Foundation (CDRF), Zoe Global Ltd and the National Institute for Health Research (NIHR)-funded BioResource, Clinical Research Facility and Biomedical Research Centre based at Guy’s and St Thomas’ NHS Foundation Trust in partnership with King’s College London.'], 'dataUseRequirements': ['NOT FOR PROFIT USE', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'USER SPECIFIC RESTRICTION'], 'isReferencedBy': ['""Verdi S, Abbasian G, Bowyer RCE, Lachance G, Yarand D, Christofidou P, Mangino M, Menni C, Bell JT, Falchi M, Small KS, Williams FMK, Hammond CJ, Hart DJ, Spector TD, Steves CJ. 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Measures are included  at three survey times: at diagnosis, 3 months later and 1 year after diagnosis.', 'associatedMedia': ['https://www.hqip.org.uk/a-z-of-nca/rheumatoid-early-inflammatory-arthritis-audit/#.YL8XN_lKiUk'], 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",6f9a4cb1-7c5a-4671-838a-9554a6491266,https://web.www.healthdatagateway.org/dataset/6f9a4cb1-7c5a-4671-838a-9554a6491266,"{'access': {'deliveryLeadTime': 'VARIABLE', 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England', 'accessRights': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data', 'https://arthritisaudit.org.uk/filesuploaded/data%20access%20process%20-%20november%202018.pdf'], 'dataProcessor': 'Kings College London', 'accessRequestCost': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data', 'https://arthritisaudit.org.uk/filesuploaded/data%20access%20process%20-%20november%202018.pdf'], 'jurisdiction': ['GB-EAW']}, 'usage': {'dataUseLimitation': ['NO RESTRICTION'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'resourceCreator': ['Data has been provided by the Healthcare Quality Improvement Partnership from the National Early Inflammatory Arthritis Audit ']}, 'formatAndStandards': {'format': ['CSV'], 'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL']}}","{'origin': {'purpose': ['AUDIT'], 'source': ['ELECTRONIC SURVEY'], 'collectionSituation': ['CLINIC', 'HOME']}, 'temporal': {'timeLag': 'VARIABLE', 'startDate': '2014-02-01', 'accrualPeriodicity': 'CONTINUOUS'}}",2020-01-13T14:54:28Z,"[{'observedNode': 'PERSONS', 'measuredValue': 8702, 'disambiguatingDescription': 'number of patients in the dataset', 'observationDate': '01/01/2021', 'measuredProperty': 'Count'}]",5.0.0,"{'qualifiedRelation': ['Data linked with that from other custodians may be available, but the release of linked data will be subject to the separate permissions of all relevant data 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"{'title': 'NHS Tayside A&E, Diagnosis dataset during A&E visit', 'publisher': {'identifier': '607db9c4e1f9d3704d570d1f', 'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'hicsupport@dundee.ac.uk', 'abstract': 'Accident and Emergency episode level data. June 2003 to current.', 'keywords': ['Accident & Emergency', 'HIC']}",14a39e96-8ac3-4df3-b42b-07718121c585,"{'spatial': ['https://www.geonames.org/2636157/tayside-region.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150', 'followup': 'UNKNOWN'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '58188f78-d9ad-47ca-8778-1db455c59845', '3.0.0': '6fbdc930-be40-4492-ba79-82d06d49b539', '1.0.0': '6cb4e624-a971-4d73-949e-bc57353e512b', '2.0.0': 'dd0ae281-e3b1-48fb-ad7a-c46565b577ce', 'latest': '6fbdc930-be40-4492-ba79-82d06d49b539'}","{'description': 'The working diagnosis(es) on discharge from A&E, or where no working diagnosis is made, the main symptom, abnormal finding, or problem. This includes all patients who attend for emergency care in an A&E department, minor injuries unit or medical assessment unit.', 'isPartOf': 'University of Dundee Health Informatics Centre'}",6fbdc930-be40-4492-ba79-82d06d49b539,https://web.www.healthdatagateway.org/dataset/6fbdc930-be40-4492-ba79-82d06d49b539,"{'usage': {'dataUseRequirements': ['DISCLOSURE CONTROL'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}, 'access': {'dataController': 'University of Dundee', 'jurisdiction': ['GB-SCT'], 'deliveryLeadTime': 'OTHER', 'accessService': 'HIC has implemented a remote-access ""Safe Haven"" environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details are available via the following link:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/', 'accessRights': ['https://www.dundee.ac.uk/hic/governanceapprovalsupport/']}, 'formatAndStandards': {'format': ['database'], 'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'language': ['en']}}","{'temporal': {'startDate': '2003-01-01', 'timeLag': 'NOT APPLICABLE', 'distributionReleaseDate': '2021-09-27', 'accrualPeriodicity': 'STATIC', 'endDate': '2017-06-28'}, 'origin': {'purpose': ['CARE'], 'source': ['ELECTRONIC SURVEY'], 'collectionSituation': ['PRIMARY CARE']}}",2020-06-03T12:56:46Z,"[{'observedNode': 'PERSONS', 'measuredValue': '1019000', 'disambiguatingDescription': '1,019,000 patients in dataset', 'measuredProperty': 'COUNT', 'observationDate': '27/09/2021'}]",3.0.0,,2021-09-27T14:36:24Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 20, 'structuralMetadata.columnName': 20, 'structuralMetadata.columnDescription': 20, 'structuralMetadata.dataType': 20, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '095a45e4-a8b6-4331-8ab1-eb60f0933118', 'description': 'The working diagnosis(es) on discharge from A&E, or where no working diagnosis is made, the main symptom, abnormal finding, or problem. This includes all patients who attend for emergency care in an A&E department, minor injuries unit or medical assessment unit.', 'name': 'Accident and Emergency Diagnosis (T)', 'dataElementsCount': 20, 'dataElements': 'fcfea58b-9257-4319-8246-99b026ff9b97, 4d59f40b-c076-4d87-9ef1-64d9cfe20c28, 0ec19dbb-544f-4bda-8eb8-c0290eecc257, 721b08f3-09ca-47e2-b8de-504404bb140d, c6320b12-f426-4d6e-81c7-2cbf9868a645, 93e0234c-6243-4321-847a-63d6af79f209, 9a8b72fa-f1a6-489e-9921-a8ffd16b5cdf, a85e36e8-8732-4529-81d1-1b218f5f9610, a06a6f56-0b2a-453e-bf1c-e9dab831f7f3, 4f7555cd-dd5b-4a5d-be55-9d67b1bbddda, a4c0bd33-9487-46fb-a403-2c850ac9b6a4, 8e9cb604-489d-4a82-8a9c-9e27c7439883, 490243f9-73db-4eee-8458-a6f034219fde, 666f036a-f03e-4ac7-8397-05da26caed26, b0385d9d-cf9f-4a08-8cdc-a174f7bf56d2, b88ce08f-fe8f-4dae-84dc-49ea6f9cbc6c, 7bbc1987-8715-48e0-b57a-48b0310a1feb, d04300c0-57a3-42f5-bd0f-227cf8a59367, 99c9a578-8260-4bda-89cd-2f12f4182502, ffb0a42a-f69a-47e5-9748-6279bbfd87b4'}]}"
"{'title': 'Covid-19 UK Non-hospital Antibody Testing Results', 'publisher': {'name': 'NHS DIGITAL', 'memberOf': 'ALLIANCE', 'identifier': '5f86cd34980f41c6f02261f4'}, 'abstract': 'The Covid-19 UK Non-hospital Antibody Testing Results (Pillar 3) dataset, also referred to as iElisa, documents individuals that have undergone a finger prick test for antibodies from having had Covid-19.', 'keywords': ['DIGITRIALS', 'PILLAR 3', 'SCOTLAND', 'ENGLAND', 'NORTHERN IRELAND', 'WALES', 'NCS', 'National Core Study', 'CO-CONNECT', 'COVID-19'], 'contactPoint': 'enquiries@nhsdigital.nhs.uk'}",a77e52cc-d404-45d6-835f-32e2dc46778a,"{'followup': 'OTHER', 'typicalAgeRange': '0-150', 'spatial': 'https://www.geonames.org/2635167/united-kingdom-of-great-britain-and-northern-ireland.html', 'pathway': 'NOT APPLICABLE', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'c28e4dc6-3956-4bbe-bb10-50bcfc3bba28', '5.0.0': '6fd8abda-7e49-436c-9131-a1f607569c14', '3.0.0': '1c84d938-f560-43bf-8df7-5f1ca3a18180', '2.0.0': 'eb403f86-e169-4b40-b1e5-34658b90a4a9', '1.0.0': '5976dcec-607f-4a42-b7dd-3cfb3904c2af', '4.0.0': 'b4484711-99c2-4974-8056-dcbe256e8cbf', 'latest': '6fd8abda-7e49-436c-9131-a1f607569c14'}","{'description': ""The Covid-19 UK Non-hospital Antibody Testing Results (Pillar 3) dataset, also referred to as iElisa, documents individuals that have undergone a finger prick test for antibodies from having had Covid-19. 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"{'title': 'NHS Tayside A&E, Diagnosis During A&E visit', 'publisher': {'identifier': '607db9c4e1f9d3704d570d1f', 'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE', 'memberOf': 'ALLIANCE'}, 'abstract': 'Accident and Emergency episode level data.', 'contactPoint': 'hicsupport@dundee.ac.uk', 'keywords': ['Accident & Emergency', 'HIC', 'NHS', 'SCOTLAND']}",14a39e96-8ac3-4df3-b42b-07718121c585,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2636157/tayside-region.html'], 'typicalAgeRange': '0-150', 'followup': 'UNKNOWN'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '6ffc7fd8-732f-4360-b38b-fa94dd75a13d'},"{'description': 'The working diagnosis(es) on discharge from A&E, or where no working diagnosis is made, the main symptom, abnormal finding, or problem. This includes all patients who attend for emergency care in an A&E department, minor injuries unit or medical assessment unit.', 'isPartOf': 'University of Dundee Health Informatics Centre'}",6ffc7fd8-732f-4360-b38b-fa94dd75a13d,https://web.www.healthdatagateway.org/dataset/6ffc7fd8-732f-4360-b38b-fa94dd75a13d,"{'access': {'dataProcessor': 'University of Dundee, Health Informatics Centre', 'dataController': 'NHS Tayside', 'deliveryLeadTime': '2-4 WEEKS', 'accessRights': ['https://www.dundee.ac.uk/hic/governanceservice/'], 'jurisdiction': ['GB-SCT'], 'accessService': 'HIC has implemented a remote-access Trusted Research Environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details are available via the following link:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/', 'accessRequestCost': ['Quotation available on request']}, 'usage': {'dataUseRequirements': ['DISCLOSURE CONTROL'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['NHS Tayside']}, 'formatAndStandards': {'language': ['en'], 'format': ['CSV', 'Database'], 'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL']}}","{'temporal': {'timeLag': 'NOT APPLICABLE', 'startDate': '2003-01-01', 'accrualPeriodicity': 'STATIC', 'distributionReleaseDate': '2021-09-27', 'endDate': '2017-06-28'}, 'origin': {'source': ['EPR'], 'collectionSituation': ['ACCIDENT AND EMERGENCY'], 'purpose': ['CARE']}}",2021-11-19T15:50:01Z,"[{'observedNode': 'PERSONS', 'measuredValue': '378000', 'disambiguatingDescription': '378,000 patients in dataset', 'measuredProperty': 'COUNT', 'observationDate': '27/09/2021'}, {'observedNode': 'EVENTS', 'measuredValue': '1019000', 'disambiguatingDescription': '1,019,000 events in the dataset', 'observationDate': '10/11/2021', 'measuredProperty': 'Count'}]",4.0.0,,2021-11-19T15:50:01Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 20, 'structuralMetadata.columnName': 20, 'structuralMetadata.columnDescription': 20, 'structuralMetadata.dataType': 20, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '952ab14b-4c73-4b44-bdb7-a6735f803a7a', 'description': 'The working diagnosis(es) on discharge from A&E, or where no working diagnosis is made, the main symptom, abnormal finding, or problem. This includes all patients who attend for emergency care in an A&E department, minor injuries unit or medical assessment unit.', 'name': 'Accident and Emergency Diagnosis (T)', 'dataElementsCount': 20, 'dataElements': '9b2ed6ac-5601-4edd-9a2f-d5128fb6c656, cb6a37b0-dd06-490e-b7f7-8f9a5cbf7bc1, 6ae904f2-50d3-454f-a7a4-3def2df0271e, a2564855-4148-482c-988d-6b18694cc3ba, 79f19056-deef-4cff-9049-0c0be176ffeb, 94eef5dc-8f5b-40f9-9d5b-976697926171, db95cd23-1c30-4486-af7e-ca4315578c1e, 00776bdb-d696-46b0-8ee1-22ddc8f8ca33, a2272bd0-bb46-44e5-a2d4-f9f7afbeae77, 80976050-7c7c-40bb-bd2e-24ae2fe0fb8a, 909b1519-314d-4a26-a1cf-20b07b0f436c, ed99d1a1-a580-4cfa-9f3b-eb06a78a9680, 4bc4a058-7c3f-459f-89c4-781a89c9e0d2, 2a80cc75-7ee4-4182-8935-6da246b9ce7e, 4d3880e0-16f1-492e-ba3f-dbe4e1742924, 320fb066-862e-4ebb-9b40-a9ca80eef8a1, 3078ca85-c074-47d4-a36a-6ae8af1c7151, 16c6461e-670f-44fc-8bd8-148f6872dc4d, 9ed2f74b-afcf-4b7a-ae9d-911e61276846, f377b37c-28f1-4cb2-af50-8d558c99e9d0'}]}"
"{'title': 'School Workforce Annual Census (SWAC)', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'SAIL', 'identifier': '5f3f98068af2ef61552e1d75'}, 'keywords': ['SAIL', 'School Workforce', 'Education', 'Teacher', 'School', 'SWAC', 'core-res'], 'abstract': 'The School Workforce Annual Census (SWAC) is an electronic collection of individual level data on the school workforce in local authority maintained settings in Wales. 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Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'deliveryLeadTime': '2-6 MONTHS'}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'format': ['SQL database table']}}","{'temporal': {'timeLag': '2-6 MONTHS', 'distributionReleaseDate': '2020-12-08', 'startDate': '2019-01-01', 'endDate': '2020-09-07', 'accrualPeriodicity': 'ANNUAL'}, 'origin': {'source': ['ELECTRONIC SURVEY'], 'purpose': ['ADMINISTRATIVE'], 'collectionSituation': ['OTHER']}}",2020-11-06T11:06:39Z,"[{'observedNode': 'PERSONS', 'measuredValue': '57944', 'observationDate': '27/09/2021', 'measuredProperty': 'Count'}]",2.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Yes. 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"{'title': 'National Records of Scotland (NRS) - Stillbirth Data', 'publisher': {'name': 'PUBLIC HEALTH SCOTLAND', 'identifier': '5f8992a97150a1b050be0712', 'memberOf': 'ALLIANCE'}, 'abstract': 'All Registrations to the National Records of Scotland of stillbirths.', 'contactPoint': 'phs.edris@phs.scot', 'keywords': ['Scotland Stillbirths', 'NCS', 'National Core Study', 'COVID-19']}",dca0c95b-ae7d-4163-8c3b-a881f779df02,"{'spatial': ['https://www.geonames.org/2638360/scotland.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'OTHER', 'pathway': 'NOT APPLICABLE', 'typicalAgeRange': '0-4'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '08e63807-5cf5-43a3-aa94-bd7a5947bfdf', '5.0.0': '70491568-676d-43e4-b3c3-b1db4f1ff530', '1.0.0': '77d045a2-41f5-4f4c-8054-60630824265f', '2.0.0': '9328f206-db9a-4feb-9012-deab80cafd2e', '4.0.0': '5b5deab2-2a83-4eef-83a8-13853beee94c', '3.0.0': '92490df7-466b-4cd8-af4f-4528ed21d203', 'latest': '70491568-676d-43e4-b3c3-b1db4f1ff530'}","{'description': 'All Registrations to the National Records of Scotland of stillbirths.', 'associatedMedia': ['https://www.nrscotland.gov.uk/statistics-and-data/statistics/statistics-by-theme/vital-events/deaths/deaths-background-information/stillbirths-and-infant-deaths'], 'isPartOf': 'Vital Events'}",70491568-676d-43e4-b3c3-b1db4f1ff530,https://web.www.healthdatagateway.org/dataset/70491568-676d-43e4-b3c3-b1db4f1ff530,"{'usage': {'isReferencedBy': ['https://www.nrscotland.gov.uk/statistics-and-data/statistics/statistics-by-theme/vital-events/deaths/deaths-time-series-data'], 'dataUseLimitation': ['RESEARCH USE ONLY'], 'dataUseRequirements': ['NOT FOR PROFIT USE', 'PROJECT SPECIFIC RESTRICTIONS', 'PUBLICATION REQUIRED'], 'resourceCreator': ['National Records Scotland']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['ICD10', 'ICD9'], 'conformsTo': ['OTHER'], 'language': ['en'], 'format': ['text/csv']}, 'access': {'jurisdiction': ['GB-GBN'], 'deliveryLeadTime': 'VARIABLE', 'accessRequestCost': ['Research Projects - 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"{'title': 'GoDARTS', 'contactPoint': 'HICBusiness-Support@dundee.ac.uk', 'publisher': {'name': 'GODARTS', 'memberOf': 'OTHERS', 'identifier': '60a630687dd392a16e228a90'}, 'abstract': 'Genetics of Diabetes Audit and Research in Tayside Scotland (GoDARTS) contains phenotypic data (clinical and lifestyle factors), questionnaire responses and clinical examination results of over 16,000 diabetes patients in the Tayside region of Scotland.', 'keywords': ['Alleviate', 'Pain', 'Pain Hub', 'Diabetes', 'Multiomics']}",8ca05f55-af73-42bd-b682-851c2c54a6cc,"{'followup': 'OTHER', 'typicalAgeRange': '18-99', 'physicalSampleAvailability': ['WHOLE BLOOD'], 'spatial': ['https://www.geonames.org/2636157/tayside-region.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '705f86b8-4c2f-4ed5-b792-3a0d49d14c75'},"{'description': 'DARTS (Diabetes Audit and Research in Tayside Scotland) was started in 1996, and aimed to identify all patients with diabetes within the wider Tayside region, through electronic record linkage, in order to improve health care over and above that which was practical through existing general practice lists alone.\n\nIn 1998, consenting patients within this electronic database were recruited to the Genetics of DARTS (GoDARTS) study and invited to provide a blood sample for DNA extraction, for research purposes. 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"{'title': 'National Waiting List Clock Starts', 'publisher': {'name': 'DISCOVER NOW', 'memberOf': 'HUB', 'identifier': '607db9c3e1f9d3704d570cfa'}, 'contactPoint': 'researchers@registerfordiscover.org.uk', 'abstract': 'Restoration of elective activity (Acute) - All RTT pathways with a clock start date after 23:59 on Sunday 4th April 2021 and before 23:59 on the Sunday of the reporting period and not recorded to date (in a previous submission).', 'keywords': ['Waiting List', 'Waiting Times', 'Elective', 'Acute', 'acute care', 'acute hospitals', 'RTT', 'Referral to treatment', 'Referral', 'care pathways', 'pathways', 'RTT pathway', 'clock start', 'Discover-NOW', 'Discover ', 'Real World data', 'Real world data', 'Linked longitudinal', 'elective recovery']}",2b847fd2-0f65-43b7-84e1-10cec99d699e,"{'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2646895/hillingdon.html', 'https://www.geonames.org/2634341/city-of-westminster.html', 'https://www.geonames.org/3333157/royal-kensington-and-chelsea.html', 'https://www.geonames.org/3333151/harrow.html', 'https://www.geonames.org/3333132/brent.html', 'https://www.geonames.org/2650567/ealing.html', 'https://www.geonames.org/3333155/hounslow.html', 'https://www.geonames.org/3333149/hammersmith-and-fulham.html'], 'followup': '1 - 10 YEARS', 'pathway': ""The independent datasets don't show the full patient pathway. We can include other datasets (Clock Stops, Diagnostics and Open Pathways) in views to show the full patient pathway.\n\nThis dataset contains all RTT Clock Starts using a patient pathway identifier to link to patient activity related to NWL patient population.""}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '708839a0-d003-4917-bbd9-92741f54ab75'},"{'description': 'Restoration of elective activity is one of the highest priorities for NHS England and NHS Improvement following the impact of the Covid-19 pandemic. Understanding the composition of the waiting list is critical to managing restoration within North West London. \n\nData will be collected via data submissions made by each individual provider of NHS Acute healthcare services in North West London. This dataset includes data from Imperial College Healthcare NHS Trust, Chelsea and Westminster NHS Foundation Trust, London North West Healthcare NHS Trust and The Hillingdon Hospital NHS Trust. Data will be processed under an Information Sharing Agreement between North West London CCG and each organisation. Data submissions will be processed and used for the following purposes:\n\n  1.  Developing a visual display of the waiting list composition (Elective Waiting List Data Dashboard).\n  2.  Developing a data quality improvement programme with providers.\n\nAll RTT pathways with a clock start date after 23:59 on Sunday 4th April 2021 and before 23:59 on the Sunday of the reporting period and not recorded to date (in a previous submission).', 'associatedMedia': ['https://imperialcollegehealthpartners.com/discover-now/north-west-london-covid-19-data-repository/', 'https://www.nwlondonccgs.nhs.uk/professionals/whole-systems-integrated-care-wsic-dashboards-and-information-sharing/information-de-identified-users'], 'isPartOf': 'National Waiting List'}",708839a0-d003-4917-bbd9-92741f54ab75,https://web.www.healthdatagateway.org/dataset/708839a0-d003-4917-bbd9-92741f54ab75,"{'usage': {'resourceCreator': ['NWL CCG', 'Discover-Now'], 'dataUseRequirements': ['COLLABORATION REQUIRED', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION', 'PUBLICATION REQUIRED'], 'investigations': ['https://www.registerfordiscover.org.uk/researchers/discover-for-researchers-and-industry'], 'dataUseLimitation': ['NO RESTRICTION'], 'isReferencedBy': ['Bottleet al. 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There are restrictions applied which prevents the researchers from taking data out of the safe haven, once the research/analysis is completed the admin team will need to be contacted for taking the analysis off the safe haven"", 'jurisdiction': ['GB']}, 'formatAndStandards': {'conformsTo': ['NHS DATA DICTIONARY', 'LOCAL'], 'language': ['en'], 'vocabularyEncodingScheme': ['NHS NATIONAL CODES'], 'format': ['Excel', 'SQL', 'Tableau', 'R']}}","{'origin': {'source': ['OTHER INFORMATION SYSTEM', 'EPR'], 'purpose': ['CARE', 'ADMINISTRATIVE', 'STATUTORY'], 'collectionSituation': ['OUTPATIENTS', 'IN-PATIENTS', 'OTHER']}, 'temporal': {'distributionReleaseDate': '2021-04-01', 'accrualPeriodicity': 'WEEKLY', 'endDate': '2022-03-31', 'timeLag': '1-2 WEEKS', 'startDate': '2021-04-01'}}",2021-09-22T10:51:37Z,"[{'observedNode': 'EVENTS', 'observationDate': '15/09/2021', 'measuredProperty': 'Count', 'measuredValue': '115563', 'disambiguatingDescription': 'NHS National Codes'}]",1.0.0,"{'tools': ['https://nww.analytics.southlondoncsu.nhs.uk/#/site/ICSAnalytics/views/WaitingListPTL/RTTPopulationHealth?:iid=1'], 'qualifiedRelation': ['Each patient will be identified by an unique patient key that can be used to link to all other datasets available within Discover-NOW hub'], 'derivation': ['Long Term Conditions', 'Electronic Frailty Index', 'Q-Admissions', 'Patient Segments', 'Risk Segments']}",2021-09-22T10:51:37Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 7, 'structuralMetadata.columnName': 7, 'structuralMetadata.columnDescription': 7, 'structuralMetadata.dataType': 7, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'c5da7cf3-c255-44e8-b901-85fd09f7890a', 'description': 'Restoration of elective activity (Acute) - All RTT pathways with a clock start date after 23:59 on Sunday 4th April 2021 and before 23:59 on the Sunday of the reporting period and not recorded to date (in a previous submission).', 'name': 'National_WL_ClockStarts', 'dataElementsCount': 7, 'dataElements': 'e8cfd76a-8cef-42e0-bdad-ea5727d77276, 23110371-c3d5-4028-99be-eab9374535fc, 82f2bbf9-4122-4acd-8813-5603102aff21, dc60f7a9-bf94-461a-b339-fc88627b4605, 5f68ad8b-b927-4170-8ac3-307e1103201f, c5ed12ea-ae8e-4373-8008-5eee63f7ba12, 92d3a0e7-c8e4-44ba-adb0-4feb2eb3ad50'}]}"
"{'title': 'BathTAP Switching Cohort 3', 'abstract': 'The BathTAP Switching study explores the effect of pain status on performance on four different versions of a computerised switching task in a sample drawn from the general population.', 'publisher': {'memberOf': 'HUBS', 'identifier': '613b2174b8b58d157f531e7a', 'name': 'ALLEVIATE'}, 'keywords': ['Alleviate', 'Pain Hub', 'Pain'], 'contactPoint': 'hssce@bath.ac.uk'}",a20643c7-ef15-4f7d-9e48-5a9f23a645c1,"{'typicalAgeRange': '18-75', 'spatial': ['https://www.geonames.org/6252001/united-states.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '70ad0b2c-a8dd-4f91-a5b8-adca272bf215'},"{'description': 'Cross-sectional study of people recruited online from the general population. Participants reported their pain status (no pain, current, recurrent pain) and completed four different versions of a remotely delivered computerized version of the switching task (alternating binary response, alternating numerical response, cued binary response, cued numerical response). Outcomes were speed of response and/or accuracy scores on these four tasks. Study 3.'}",70ad0b2c-a8dd-4f91-a5b8-adca272bf215,https://web.www.healthdatagateway.org/dataset/70ad0b2c-a8dd-4f91-a5b8-adca272bf215,"{'access': {'dataController': 'University of Bath', 'jurisdiction': ['GB-ENG'], 'accessRights': ['https://www.bath.ac.uk/research-centres/centre-for-pain-research-cpr/']}, 'formatAndStandards': {'format': ['Database'], 'conformsTo': ['LOCAL'], 'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL']}, 'usage': {'isReferencedBy': ['Attridge, N., Keogh, E., & Eccleston, C. (2016). The effect of pain on task switching: pain reduces accuracy and increases reaction times across multiple switching paradigms. Pain, 157(10), 2179–2193. https://doi.org/10.1097/j.pain.0000000000000627']}}","{'temporal': {'distributionReleaseDate': '2021-10-01', 'endDate': '2016-10-01', 'startDate': '2016-10-01', 'accrualPeriodicity': 'STATIC', 'timeLag': 'NOT APPLICABLE'}, 'origin': {'collectionSituation': ['OTHER'], 'purpose': ['STUDY'], 'source': ['OTHER']}}",2021-11-01T11:15:23Z,"[{'measuredValue': '3208', 'disambiguatingDescription': 'Computer task performance ', 'observationDate': '01/10/2016', 'measuredProperty': 'Count', 'observedNode': 'PERSONS'}]",1.0.0,,2021-11-01T11:15:23Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 12, 'structuralMetadata.columnName': 12, 'structuralMetadata.columnDescription': 12, 'structuralMetadata.dataType': 12, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'cd91e2c1-ee17-4a62-bc3f-c4fe260057cf', 'name': 'BathTAP Switching 3', 'dataElementsCount': 12, 'dataElements': '91738de7-36e3-4873-910a-604f1a7320f2, 13f954f4-6e97-42be-b4b9-479455677e3e, 7ed634de-2524-4cb2-83ce-7f283fb6e618, b749d4a9-de93-47be-af2d-b34b770ab6fe, 088c1df2-6cf2-4b64-8045-7e379681fb99, 410bddd3-131a-4e08-a4bb-dcead73c662f, 530ddcd7-c79b-4ede-bf26-b86035ffc365, 0d4096d8-4ec4-49d5-a9f6-3f0c466501fd, 69d13fbb-10a4-4e76-98f3-5cab4f6a69fe, 312562a6-dae4-4661-841d-0cfb920cd12c, 546bf642-7baa-47de-b885-92d44497ed4f, 4918f291-5241-410a-94e0-b1075cd7284f'}]}"
"{'title': 'CASPS: A Phase II trial of Cediranib in ASPS patients', 'publisher': {'memberOf': 'ALLIANCE', 'contactPoint': 'casps-icrctsu@icr.ac.uk', 'name': 'TISSUE DIRECTORY'}, 'abstract': 'Collection of samples and data across the following diseases: Malignant neoplasm of connective tissue (disorder)', 'keywords': ['UKCRC Tissue Directory', 'Malignant neoplasm of connective tissue (disorder)', 'CASPS', 'ASPS'], 'doiName': 'Not Available', 'contactPoint': 'casps-icrctsu@icr.ac.uk'}",7dcd5c0a-1922-4fe2-9b7e-090e4c39861b,"{'spatial': 'England', 'typicalAgeRange': 'Not Known', 'physicalSampleAvailability': ['IN PROGRESS']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '82ef7d1a-98d8-48b6-9acd-461bf2a399c3', '3.0.0': '70b4d407-288a-4945-a4d5-506d60715110', '1.0.0': '5a08d424-de25-41c4-8db4-f0ac2a9cc5bb', '0.0.1': '333870e3-f0c3-4265-a30b-6976259f2831', 'latest': '70b4d407-288a-4945-a4d5-506d60715110'}","{'description': 'CASPS is a two-arm, randomised, double-blind, placebo-controlled, Phase II trial of cediranib in ASPS patients. The primary objective is to evaluate the efficacy of cediranib by measuring the percentage change in the sum of target marker lesion diameters from randomisation to week 24 compared to placebo. Secondary objectives include: progression-free survival, overall survival and safety and tolerability of cediranib in ASPS patients. Tissue markers of tumour response, circulating markers of angiogenesis, and changes in circulating endothelial cells/precursor cells in response to cediranib will be explored.  Thirty six patients with progressive, metastatic, histologically confirmed ASPS will be recruited. Patients will be randomised to 24 weeks of blinded cediranib or placebo, after which treatment will be unblinded and all patients offered open-label cediranib until objective disease progression, or death if sooner.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",70b4d407-288a-4945-a4d5-506d60715110,https://web.www.healthdatagateway.org/dataset/70b4d407-288a-4945-a4d5-506d60715110,"{'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}, 'access': {'dataProcessor': 'Not Applicable', 'dataController': 'The Institute of Cancer Research', 'accessRequestCost': 'Not specified', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'jurisdiction': 'GB-ENG'}, 'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}}","{'temporal': {'startDate': '2010-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:04:34Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T15:57:45Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'CuT-AsthMa: Culturally tailored school-based intervention for asthma in Malaysia', 'abstract': 'We used a qualitative method to explore the views of stakeholders on asthma and school-based intervention of asthma in Malaysia.', 'publisher': {'identifier': '607db9c2e1f9d3704d570ce6', 'memberOf': 'HUB', 'name': 'BREATHE'}, 'contactPoint': 'RESPIRE@ed.ac.uk', 'keywords': ['BREATHE', 'asthma', 'Malaysia culturally-tailored school-based interventions', 'RESPIRE']}",009bcb87-05f3-46e6-8866-7e4df698cb19,"{'typicalAgeRange': '7-99', 'spatial': ['https://www.geonames.org/1733045/malaysia.html'], 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '82d58cac-f547-419c-b0f7-cad754bceabe', '2.0.0': '70c318c4-b388-4102-924e-5419d44c1679', '0.0.1': '0692d86c-1f24-43a4-9508-005d00bd7259', 'latest': '70c318c4-b388-4102-924e-5419d44c1679'}","{'description': 'We used a qualitative method to explore the views of stakeholders on asthma and school-based intervention of asthma in Malaysia. We involved school staff, healthcare professionals and policymakers in focus groups/interviews to inform the development of Culturally-Tailored school-based for Asthma in Malaysia (CuT-AsthMa) programme. We had 52 participants: 39 school staff, 11 healthcare professionals and two policymakers. The summary of our data is described using a codebook consisting of codes and the description used to analyse the focus groups/interviews. The codebook was developed using open codes, categories (collation of open codes) and themes. We used this codebook to aid in constructing a schema to inform the development of the CuT-AsthMa programme. Other documents include an invitation letter to participants, a set of participant information sheet and consent. The data in this study is to support part of the PhD work at the Usher Institute, the University of Edinburgh. Due to the sensitivity of the data and to protect the confidentiality of the participants involved in this study, the raw data will be deposited in DataVault at the University of Edinburgh.\n\nFor further information, see: https://www.ed.ac.uk/usher/respire/phd-studentships/siti-nurkamilla-ramdzan', 'associatedMedia': ['https://www.ed.ac.uk/usher/respire/phd-studentships/siti-nurkamilla-ramdzan'], 'isPartOf': 'BREATHE'}",70c318c4-b388-4102-924e-5419d44c1679,https://web.www.healthdatagateway.org/dataset/70c318c4-b388-4102-924e-5419d44c1679,"{'formatAndStandards': {'format': ['text'], 'language': ['en'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL']}, 'access': {'accessRights': ['https://www.ed.ac.uk/usher/respire/about/projects'], 'accessService': 'Access is managed on a project-by-project basis. Contact the RESPIRE team:', 'jurisdiction': ['MY'], 'dataController': 'RESPIRE', 'dataProcessor': 'RESPIRE'}, 'usage': {'resourceCreator': ['RESPIRE Collaboration']}}","{'temporal': {'accrualPeriodicity': 'STATIC', 'startDate': '2018-04-01', 'timeLag': 'NOT APPLICABLE', 'endDate': '2021-03-31'}}",2020-09-22T09:54:01Z,"[{'observedNode': 'PERSONS', 'measuredValue': '52', 'observationDate': '31/03/2021', 'measuredProperty': 'Count'}]",2.0.0,,2021-09-01T09:39:19Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Moorfields DMO Dataset 003', 'publisher': {'memberOf': 'HUB', 'identifier': '5f8437a3b7dec2a83e8cceba', 'name': 'INSIGHT'}, 'contactPoint': 'enquiries@insight.hdrhub.org', 'abstract': 'The DMO Dataset at Moorfields Eye Hospital NHS Foundation Trust is a longitudinal dataset consisting of routinely collected imaging and clinical metadata from patients receiving treatment for diabetic macular oedema (DMO) from 2004 to the present.', 'keywords': ['diabetic macular oedema', 'Diabetic Retinopathy', 'Diabetes Mellitus Type 1', 'Diabetes', 'diabetic eye disease', 'aflibercept', 'ranibizumab', 'Heidelberg', 'Topcon', 'Protocol', 'Test', 'Scan', 'Images', 'OCT', 'optic disc', 'Eylea', 'Lucentis', 'DMO', 'Eye drop', 'Eye condition', 'Laterality', 'Left', 'Right', 'Diagnosis', 'Ocular', 'Ophthalmology', 'Visual Acuity', 'Vision', 'MEH', 'IVT', 'Colour photo', 'Modality', 'Injection', 'Grading', 'Diabetes Mellitus Type 2', 'Non-Proliferative Diabetic Retinopathy', 'Proliferative Diabetic Retinopathy', 'Background Diabetic Retinopathy', 'National Screening Grading', 'Screening Programme', 'Screening', 'Referral']}",120106fb-49b4-4bc0-b30c-50a59c5c6253,"{'pathway': 'The dataset is representative of the entire pathway for patients receiving treatment for diabetic macular oedema (DMO) in the Medical Retina service at Moorfields Eye Hospital NHS Foundation Trust.', 'spatial': ['https://www.geonames.org/2648147/great-britain.html'], 'typicalAgeRange': '26-89', 'followup': '> 10 YEARS', 'physicalSampleAvailability': ['OTHER']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': 'a933d1f3-374c-4205-b3f2-67def97780e2', '3.0.0': '719dd9c9-9aa5-426d-981a-57f0ad3f1480', 'latest': '719dd9c9-9aa5-426d-981a-57f0ad3f1480'}","{'description': 'The Moorfields DMO Dataset is a longitudinal dataset consisting of routinely collected imaging and clinical metadata from patients receiving treatment for Diabetic Macular Oedema (DMO) at Moorfields Eye Hospital NHS Foundation Trust, from 2004 to the present.\n \nThis dataset encompasses all patients at Moorfields Eye Hospital NHS Foundation Trust - a leading provider of eye health services in the UK and a world-class centre of excellence for ophthalmic research and education - who have received at least one injection of either Lucentis (ranibizumab) or Eylea (aflibercept) for DMO. These therapies began at Moorfields in 2013, however, the dataset will include any imaging or clinical metadata that is available for these patients prior to that time (for example in patients who were initially monitored or received other treatments prior to receiving treatment). Also of note, this dataset will include data from both eyes in each case - for example, it will include data from fellow eyes that are not receiving injections. For these reasons, the dataset will include longitudinal data from a wide range of diabetic eye disease.\n \nClinical metadata includes demographic information, visual acuities (predominantly measured with Early Treatment Diabetic Retinopathy Study (ETDRS) charts), diabetic retinopathy grading, and information regarding intravitreal therapies and ocular surgeries.\n \nImaging metadata includes colour fundus photographs, optical coherence tomography (OCT) scans (Topcon, Heidelberg), fundus autofluorescence (Heidelberg), fluorescein and indocyanine green angiography (Heidelberg). \n \nThis dataset is continuously updated. As of September 2021, it comprised of over 3,200 eyes receiving Lucentis or Eylea for DMO, over 42,700 injection episodes, and over 806,000 ophthalmic images. This is the largest single centre database from patients with DMO and covers more than a decade of follow-up for these patients.', 'associatedMedia': ['https://www.insight.hdrhub.org/about-us'], 'isPartOf': 'Not Applicable'}",719dd9c9-9aa5-426d-981a-57f0ad3f1480,https://web.www.healthdatagateway.org/dataset/719dd9c9-9aa5-426d-981a-57f0ad3f1480,"{'formatAndStandards': {'format': ['csv', 'image'], 'language': ['en'], 'conformsTo': ['NHS DATA DICTIONARY', 'OTHER'], 'vocabularyEncodingScheme': ['SNOMED CT', 'DM+D', 'NHS NATIONAL CODES']}, 'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['INSIGHT Health Data Hub']}, 'access': {'deliveryLeadTime': '2-6 MONTHS', 'accessRights': ['https://www.insight.hdrhub.org/researcher-area'], 'accessService': 'INSIGHT is developing its data access environment for researchers.  INSIGHT releases anonymised data, under strict data licence arrangements, to external secure environments, subject to appropriate due diligence and contracting.', 'accessRequestCost': ['https://www.insight.hdrhub.org/contact'], 'jurisdiction': ['GB-ENG'], 'dataController': 'Moorfields Eye Hospital NHS Foundation Trust', 'dataProcessor': 'Not Applicable'}}","{'origin': {'purpose': ['STUDY'], 'collectionSituation': ['CLINIC', 'ACCIDENT AND EMERGENCY', 'OUTPATIENTS', 'IN-PATIENTS'], 'source': ['EPR', 'MACHINE GENERATED', 'OTHER']}, 'temporal': {'accrualPeriodicity': 'CONTINUOUS', 'startDate': '2003-01-01', 'timeLag': '1-2 WEEKS'}}",2021-10-22T14:39:09Z,"[{'observedNode': 'PERSONS', 'measuredValue': '3219', 'measuredProperty': 'Count', 'disambiguatingDescription': '3,219 Patients\n6,378 Eyes with 806,581 Images\n4,516 Eyes with 42,729 Injections (Lucentis/Eylea)\n6,438 Eyes with 204,724Visual Acuity Readings', 'observationDate': '30/09/2021'}]",3.0.0,"{'qualifiedRelation': ['None'], 'tools': [''], 'derivation': ['Not Applicable']}",2021-11-16T14:48:31Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 7, 'structuralMetadata.tableName': 7, 'structuralMetadata.tableDescription': 7, 'structuralMetadata.dataElementsCount': 69, 'structuralMetadata.columnName': 69, 'structuralMetadata.columnDescription': 69, 'structuralMetadata.dataType': 69, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '29038eb8-d791-4b77-9da8-1d18fd36a4c6', 'description': 'This table contains the injection data', 'name': 'injections', 'dataElementsCount': 7, 'dataElements': '1ceac958-edae-4200-ab3a-fd9770df11ce, 1d45fcef-b306-4947-96c6-b98dc3dc890a, f4305690-8e21-4237-9655-5f6fa04d5f78, 5abbe898-8920-42b5-9b0f-94db4eddc523, f84c2ed7-fbba-46db-8850-79d564081ef8, f955f5fa-995e-4f3d-9469-b501b4b04567, 890d5079-d4ec-4433-aed5-e13f5a6a56e0'}, {'id': 'ac8143a9-ccb8-4f9b-8ff7-622615d1d3b1', 'description': 'This table contains the demographic data', 'name': 'demographic', 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"{'title': 'Avon Longitudinal Study of Parents and Children', 'abstract': 'ALSPAC is a transgenerational prospective birth cohort study investigating influences on health and development across the life course. It has multiple datasets spanning 30 years of data collection using questionnaires, clinics and other sources', 'publisher': {'contactPoint': 'alspac-data@bristol.ac.uk', 'name': 'AVON LONGITUDINAL STUDY OF PARENTS AND CHILDREN', 'memberOf': 'ALLIANCE'}, 'keywords': ['cohort', 'parents', 'birth', 'child', 'transgenerational', 'study', 'COVID-19', 'CO-CONNECT'], 'contactPoint': 'alspac-data@bristol.ac.uk'}",255d70c6-9a50-4b62-adc0-44216606a216,"{'followup': '> 10 YEARS', 'spatial': 'United Kingdom', 'physicalSampleAvailability': ['DNA', 'FAECES', 'PLASMA', 'SALIVA', 'SERUM', 'URINE'], 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '9c07be99-54a1-4a23-8de2-492e8dfea55a', '3.0.0': '71b8569c-b582-499c-85aa-909b825f6ea6', '2.0.0': 'c419b9f6-e67c-4666-ba04-5f4a0e745a91', '0.0.1': 'cacfd200-8c88-433d-9693-9917d778880b', 'latest': '71b8569c-b582-499c-85aa-909b825f6ea6'}","{'description': 'ALSPAC was established to understand how genetic, biological, environmental, social, psychological and psychosocial factors influence the health and development of children and their parents. ALSPAC is a multi-generation prospective cohort based in Bristol in the South West of England. More than 14,000 women (G0) were enrolled in 1991 and 1992. Their partners (also G0), children (G1) and now grandchildren (G2) have been recruited and followed up over multiple timepoints. A wide variety of biological samples have been collected along with a vast array of exposure and outcome data collected via questionnaire, face to face clinics and through linkage to administrative data.\n\nDuring the index pregnancy women were sent 3 questionnaires. Since then, over a period of some 25 years, women have been sent almost annual questionnaires asking about their own health and well-being. From 2008, women were invited to attend four focus clinical assessments. Assessments of the children have been administered frequently, with multiple data collection time points since birth. These include numerous child-completed questionnaires, a number of clinical assessments from the age of 7 years and further questionnaires about the child completed by the mother or other main caregiver. Partners of the mothers have also completed a number of questionnaires and been invited to one focus clinic assessment. The second generation (children of the children) have been and continue to be recruited with data collected via questionnaire and clinical assessment at multiple time points.\n\nThe study has multiple datasets arranged by cohort member, data type (usually questionnaire or clinic) and time point. In addition, the study reacted quickly to the COVID-19 pandemic and has multiple data collections available from March 2020.', 'associatedMedia': ['http://www.bristol.ac.uk/alspac/researchers/'], 'isPartOf': 'Birth Cohort study'}",71b8569c-b582-499c-85aa-909b825f6ea6,https://web.www.healthdatagateway.org/dataset/71b8569c-b582-499c-85aa-909b825f6ea6,"{'access': {'accessRights': ['http://www.bristol.ac.uk/alspac/researchers/access/Access policy: http://www.bristol.ac.uk/media-library/sites/alspac/documents/researchers/data-access/ALSPAC_Access_Policy.pdf'], 'dataProcessor': 'University of Bristol', 'accessRequestCost': 'http://www.bristol.ac.uk/media-library/sites/alspac/documents/researchers/data-access/ALSPAC_Access_Policy.pdf', 'accessService': 'Bespoke datasets are shared directly with the researcher unless  administrative data is required (e.g. health or educational records) in which case UKSerP is used.', 'dataController': 'University of Bristol', 'deliveryLeadTime': '1-2 WEEKS', 'jurisdiction': 'GB'}, 'formatAndStandards': {'format': ['any flat file format can be provided (.csv, stata, SPSS, R)'], 'conformsTo': 'LOCAL', 'language': 'en'}, 'usage': {'dataUseLimitation': 'GENERAL RESEARCH USE', 'investigations': ['https://proposals.epi.bristol.ac.uk/?q=proposalSummaries'], 'resourceCreator': 'ALSPAC Study Team', 'isReferencedBy': ['Offspring Cohort Profile: Boyd A., Golding J., Macleod J., Lawlor D.A., Fraser A., Henderson J., Molloy L., Ness A., Ring S., Davey Smith G. Cohort Profile: The ‘Children of the 90s’—the index offspring of the Avon Longitudinal Study of Parents and Children. International Journal of Epidemiology 2013; 42(1): 111-127. Mothers Cohort Profile: Fraser A, Macdonald-Wallis C, Tilling K, et al.: Cohort Profile: The Avon Longitudinal Study of Parents and Children: ALSPAC mothers cohort. International Journal of Epidemiology 2013; 42(1): 97–110. Cohort Profile Update: Northstone K., Lewcock M., Groom A., Boyd A., Macleod J., Timpson N., Wells N. Cohort Profile:The Avon Longitudinal Study of Parents and Children (ALSPAC): an update on the enrolled sample of index children in 2019'], 'dataUseRequirements': 'NOT FOR PROFIT USE'}}","{'temporal': {'startDate': '1991-04-01', 'timeLag': '6 MONTHS PLUS', 'distributionReleaseDate': '2021-02-01', 'accrualPeriodicity': 'ANNUAL'}, 'origin': {'purpose': 'STUDY', 'collectionSituation': ['CLINIC', 'HOME'], 'source': ['ELECTRONIC SURVEY', 'PAPER BASED']}}",2020-04-28T16:57:17Z,,3.0.0,"{'derivation': ['Derived variables are added to relevant datasets as opposed to us having derived datasets per se'], 'qualifiedRelation': ['Up to date information is available here: http://www.bristol.ac.uk/alspac/researchers/our-data/linkage/']}",2021-02-26T13:14:38Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Hospitalised and ventilator acquired pneumonia severity, treatments, outcomes', 'contactPoint': 'PIONEER@UHB.NHS.UK', 'publisher': {'name': 'PIONEER', 'memberOf': 'HUB', 'identifier': '607db9c5e1f9d3704d570d5f'}, 'keywords': ['Hospital acquired pneumonia', 'Ventilator associated pneumonia', 'COVID-19', 'Older adults', 'age', 'socioeconomic status', 'Epidemiology', 'HAP', 'Mortality', 'White cell counts', 'neutrophil counts', 'CRP', 'Hospital Admissions', 'severity', 'Oxygenation', 'mortality', 'morbidity', 'ITU', 'antibiotics', 'bacteria', 'length of stay', 'NEWS2', 'acuity', 'leukopenia', 'sputum', 'nosociomial pneumonia', 'trachiotomy', 'intubation'], 'abstract': 'Patients with hospital and ventilator acquired pneumonia (HAP) from 2000 to date. Granular care pathways. Multi-morbidity, investigations, interventions and treatments. Serial physiology, blood biomarkers, outcome data. Deeply phenotyped. Large cohort.'}",99dc4159-00d0-4874-b158-fe30244b53a1,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-113', 'spatial': ['United Kingdom,England,West Midlands'], 'pathway': 'Data is representative of the multi-ethnicity population within the West Midlands (42% non white). Data includes all patients admitted during this timeframe, with National data Opt Outs applied, and therefore is representative of admissions to secondary care. Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.', 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '384dd94f-db92-408b-9409-dd4bd44f79e3', '2.0.0': '71f9cf07-0560-42b4-a0fe-5de725dacd31', 'latest': '71f9cf07-0560-42b4-a0fe-5de725dacd31'}","{'description': 'Background: Hospital-Acquired pneumonia (HAP) and Ventilator-Associated pneumonia is an infection of the lungs that is contracted by a patient 2 or more days after an admission.  HAP is often more serious than other lung infections due to the nature of the bacteria present in hospital settings, as they are more resistant to treatment than those in the community. HAP typically affects older patients with co-morbidities, those with weakened immune systems or a long-term chronic lung disease.  Ventilator-Associated pneumonia is the most common infection associated with a stay in intensive care, with increased long-term mortality and length of stays.  These data allow the investigation of the sensitivities of the bacteria, which antibiotics were administered and patient outcomes.  The period of data available allows for studying pre- and post- COVID-19 and the impact of ventilation.  \nPIONEER geography: The West Midlands (WM) has a population of 5.9 million and includes a diverse ethnic and socio-economic mix. \nEHR: UHB is one of the largest NHS Trusts in England, providing direct acute services and specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds and an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary and secondary care record (Your Care Connected) and a patient portal “My Health”.\nScope: All hospitalised patients from 2000 onwards, curated to focus on Hospital and ventilator acquired pneumonia. Longitudinal and individually linked, so that the preceding and subsequent health journey can be mapped and healthcare utilisation prior to and after admission understood. The dataset includes highly granular patient demographics and co-morbidities taken from ICD-10 and SNOMED-CT codes. Serial, structured data pertaining to acute care process (timings, staff grades, specialty review, wards and triage). Along with presenting complaints, outpatients admissions, microbiology results, referrals, procedures, therapies,  all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations and others), and all blood results(urea, albumin, platelets, white blood cells and others). Includes all prescribed and administered treatments and all outcomes.  Linked images are also available (radiographs, CT scans, MRI).\nAvailable supplementary data: Matched controls; ambulance, OMOP data, synthetic data.\nAvailable supplementary support: Analytics, Model build, validation and refinement; A.I.; Data partner support for ETL (extract, transform and load) process, Clinical expertise, Patient and end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.'}",71f9cf07-0560-42b4-a0fe-5de725dacd31,https://web.www.healthdatagateway.org/dataset/71f9cf07-0560-42b4-a0fe-5de725dacd31,"{'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS']}, 'access': {'jurisdiction': ['GB-ENG'], 'dataProcessor': 'NOT APPLICABLE', 'deliveryLeadTime': '1-2 MONTHS', 'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/'], 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.'}, 'formatAndStandards': {'language': ['en'], 'conformsTo': ['LOCAL'], 'format': ['SQL'], 'vocabularyEncodingScheme': ['SNOMED CT', 'OPCS4', 'ICD10']}}","{'origin': {'source': ['EPR'], 'purpose': ['CARE'], 'collectionSituation': ['ACCIDENT AND EMERGENCY', 'IN-PATIENTS']}, 'temporal': {'startDate': '2000-01-01', 'accrualPeriodicity': 'QUARTERLY', 'distributionReleaseDate': '2022-03-09', 'endDate': '2021-12-31', 'timeLag': 'OTHER'}}",2022-03-15T13:09:09Z,"[{'measuredProperty': 'Count', 'observedNode': 'EVENTS', 'measuredValue': '60283', 'disambiguatingDescription': '60,283 patient admissions with Hospital acquired pneumonia between 01-01-2000 and 31-12-2021', 'observationDate': '09/03/2022'}]",2.0.0,{'derivation': ['Not Available']},2022-04-12T08:51:24Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 28, 'structuralMetadata.tableName': 28, 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"{'title': 'NIHR BioResource: SNP imputation data', 'keywords': ['SNP', 'Imputation'], 'contactPoint': 'nbr@bioresource.nihr.ac.uk', 'publisher': {'name': 'NIHR BIORESOURCE', 'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d3f'}, 'abstract': 'SNP chip data can be used to impute many of the (non-rare) SNPs not included on the chips.  The NIHR BioResource is using a modified version of the UK Biobank protocol to improve the options for recall.'}",39d7ad29-be30-4e12-a7c8-d8757141de85,"{'typicalAgeRange': '18-85', 'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM'], 'spatial': ['United Kingdom (https://www.geonames.org/2635167/united-kingdom.html)'], 'followup': '1 - 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'3.0.0': '7432e08e-354a-40a8-a7d4-029f37e1d979', '5.0.0': '7257d45c-6697-4c49-bbce-de0d456c0678', '4.0.0': '1fcbb814-10e0-43b7-b383-b5c818090ac8', '2.0.0': 'f1a85970-bddc-499b-92e9-783706c60995', '0.0.1': '9d3170cc-ca3c-4688-9bc4-271f75db48c7', '1.0.0': '9401ac82-85dc-4dd0-92de-207955e87469', 'latest': '7257d45c-6697-4c49-bbce-de0d456c0678'}","{'description': 'The NIHR Bioresource consists of several groups of participants: ~70k from the general population and blood donors (COMPARE, INTERVAL and STRIDES studies); ~19k with one of ~50 rare diseases (RD) including a ~5k pilot for GEL; ~30k with Inflammatory Bowel Disease (IBD) which include the members of Gut Reaction, the Health Data Research Hub for IBD; and ~20k with Anxiety or depression (GLAD study). It intends to extend recruitment in all areas, and to other rare and common disease groups, with a target of ~300k by 2022.  SNP chip data can be used to impute many of the (non-rare) SNPs not included on the chips.  The NIHR BioResource is using a modified version of the UK Biobank protocol to improve the options for recall.', 'isPartOf': 'Not Applicable'}",7257d45c-6697-4c49-bbce-de0d456c0678,https://web.www.healthdatagateway.org/dataset/7257d45c-6697-4c49-bbce-de0d456c0678,"{'usage': {'dataUseLimitation': ['RESEARCH USE ONLY'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'resourceCreator': ['NIHR BioResource. Acknowledgement text: ""We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.""'], 'isReferencedBy': ['Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/']}, 'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['OTHER'], 'format': ['text/plink', 'text/vcf'], 'conformsTo': ['LOCAL']}, 'access': {'accessRights': ['https://bioresource.nihr.ac.uk/using-our-bioresource'], 'accessRequestCost': ['https://bioresource.nihr.ac.uk/using-our-bioresource/industry-researchers/industry-bioresource-usage-costs/'], 'accessService': ""Some de-identified data may be released to researchers in a platform-independent filetype (e.g. CSV). However, access to any data acquired via NHS Digital is subject to strict restrictions governing where data may be accessed and from which locale - access is currently via an experimental safe haven built in Microsoft Azure. It is also intended that SNP data be available from the European Genome-Phenome Archive (EBI's EGA) via managed access."", 'deliveryLeadTime': '2-6 MONTHS', 'jurisdiction': ['GB-GBN'], 'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)', 'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)'}}","{'temporal': {'accrualPeriodicity': 'QUARTERLY', 'distributionReleaseDate': '2021-03-31', 'timeLag': '2-6 MONTHS', 'startDate': '2019-07-15'}, 'origin': {'purpose': ['STUDY'], 'source': ['MACHINE GENERATED'], 'collectionSituation': ['OTHER']}}",2020-01-13T15:06:27Z,[{}],5.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['ALL', 'COVID-19 SARI-Watch (formerly CHESS)', 'Civil Registration - Deaths', 'Covid-19 Second Generation Surveillance System', 'Emergency Care Data Set (ECDS)', 'Hospital Episode Statistics Accident and Emergency', 'Hospital Episode Statistics Admitted Patient Care', 'Hospital Episode Statistics Critical Care', 'Hospital Episode Statistics Outpatients', 'Intensive Care National Audit & Research Centre (ICNARC) Case Mix Programme (https://www.icnarc.org/Our-Audit/Audits/Cmp/About)']}",2021-11-25T12:01:20Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Paediatric Diabetes Audit - survey of diabetes-related technologies', 'publisher': {'identifier': '607db9c4e1f9d3704d570d23', 'name': 'HQIP', 'memberOf': 'ALLIANCE'}, 'keywords': ['Audit', 'NPDA', 'Paediatric', 'Diabetes', 'Technology', 'Spotlight'], 'contactPoint': 'datasharing@hqip.org.uk', 'abstract': 'Organisational survey data collection of diabetes-related technologies in paediatric diabetes units (PDUs), based on the situation on 31 March 2018. contains results from all one hundred and seventy-three  PDUs in England and Wales.'}",eecbdd8d-92a0-4dfd-a216-1cf7f1f8c98f,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-25', 'followup': 'OTHER', 'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'4.0.0': '0afd2b0a-fee2-4002-b95a-36effe65a454', '5.0.0': '72eb9599-aa37-4c17-bc56-a7833e8038db', 'latest': '72eb9599-aa37-4c17-bc56-a7833e8038db'}","{'description': 'Organisational survey data collection covering\xa0the use of diabetes-related technologies in paediatric diabetes units (PDUs), based on the situation at each Paediatric Diabetes Unit on 31 March 2018. contains results from all one hundred and seventy-three  PDUs in England and Wales.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)', 'associatedMedia': ['https://www.hqip.org.uk/a-z-of-nca/national-paediatric-diabetes-audit/']}",72eb9599-aa37-4c17-bc56-a7833e8038db,https://web.www.healthdatagateway.org/dataset/72eb9599-aa37-4c17-bc56-a7833e8038db,"{'access': {'deliveryLeadTime': 'VARIABLE', 'dataProcessor': 'Royal College of Paediarics and Child Health', 'accessRequestCost': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data', 'https://www.rcpch.ac.uk/resources/national-paediatric-diabetes-audit-transparency-open-data#downloadBox'], 'accessRights': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data', 'https://www.rcpch.ac.uk/resources/national-paediatric-diabetes-audit-transparency-open-data#downloadBox'], 'jurisdiction': ['GB-EAW'], 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England'}, 'usage': {'dataUseLimitation': ['NO RESTRICTION'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'resourceCreator': ['Data has been provided by the Healthcare Quality Improvement Partnership from the National Paediatric Diabetes Audit Programme']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'format': ['CCSV', 'XLXS', 'STATA', 'SPSS'], 'language': ['en']}}","{'temporal': {'accrualPeriodicity': 'STATIC', 'endDate': '2018-04-01', 'startDate': '2018-03-31', 'distributionReleaseDate': '2020-07-01', 'timeLag': 'VARIABLE'}, 'origin': {'source': ['ELECTRONIC SURVEY'], 'collectionSituation': ['CLINIC'], 'purpose': ['AUDIT']}}",2021-11-05T16:44:46Z,"[{'observedNode': 'EVENTS', 'measuredValue': 100, 'disambiguatingDescription': 'percentage of paediatric diabetes units who completed the survey', 'observationDate': '31/03/2018', 'measuredProperty': 'count'}]",5.0.0,"{'qualifiedRelation': ['Data linked with that from other custodians may be available, but the release of linked data will be subject to the separate permission of all relevant data controllers'], 'derivation': ['Not Available']}",2022-01-05T14:44:27Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 38, 'structuralMetadata.columnName': 38, 'structuralMetadata.columnDescription': 38, 'structuralMetadata.dataType': 38, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 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"{'title': 'Deeply-phenotyped hospital COVID patients: severity, acuity, therapies, outcomes', 'doiName': 'https://web.www.healthdatagateway.org/dataset/16a09f1b-3654-4ec3-9913-fb70cb1e2364', 'keywords': ['COVID', 'Covid-19', 'Acuity Score', 'NEWS2', 'SEWS', 'AVPU', 'Coronavirus', 'UHB', 'Birmingham', 'age', 'sex', 'ethnicity ', 'physiology', 'vital signs', 'biomarkers', 'd-dimer', 'troponin', 'CRP', 'sepsis', 'symptoms', 'chest radiographs', 'computer tomography', 'outcomes', 'intensive care', 'ventilated', 'do not resuscitate orders', 'primary care records', 'secondary care records', 'high flow nasal oxygen', 'treatments', 'antibiotics', 'secondary infections', 'outcomes', 'death', 'discharge', 'length of stay', 'multimorbidity'], 'publisher': {'memberOf': 'HUB', 'contactPoint': 'PIONEER@UHB.NHS.UK', 'name': 'PIONEER'}, 'abstract': 'Hospital COVID patients (6th Jan 2020 onwards). Granular severity, ethnicity, co-morbidity.  Serial physiology, blood biomarkers, images, treatments, ITU, outcome, pre/post admission healthcare use. Deeply phenotyped, longitudinal. Waves 1/ 2', 'contactPoint': 'PIONEER@UHB.NHS.UK'}",16a09f1b-3654-4ec3-9913-fb70cb1e2364,"{'pathway': 'Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.  A matched non-COVID control population can be generated upon request.', 'typicalAgeRange': '0-100', 'spatial': 'West Midlands Region, UK', 'followup': 'OTHER', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '2c2d8f8c-05c4-4af3-8304-9702b52f2cc9', '2.0.0': '730b3e54-1f59-4c07-b5d6-e6b63e4dda35', '0.0.3': 'b095d7ad-5fac-4279-94b0-3c0b0c260acf', 'latest': '730b3e54-1f59-4c07-b5d6-e6b63e4dda35'}","{'description': 'PIONEER:  Deeply-phenotyped hospital COVID patients: severity, acuity, therapies, outcomes\nDataset number 4.0\n\nCoronavirus disease 2019 (COVID-19) was identified in January 2020.  Currently, there have been more than 6 million cases& more than 1.5 million deaths worldwide.  Some individuals experience severe manifestations of infection, including viral pneumonia, adult respiratory distress syndrome (ARDS)& death.  There is a pressing need for tools to stratify patients, to identify those at greatest risk.  Acuity scores are composite scores which help identify patients who are more unwell to support & prioritise clinical care.  There are no validated acuity scores for COVID-19 & it is unclear whether standard tools are accurate enough to provide this support. This secondary care COVID dataset contains granular demographic, morbidity, serial acuity and outcome data to inform risk prediction tools in COVID-19.\n\nPIONEER geography\nThe West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix. There is a higher than average percentage of minority ethnic groups. WM has a large number of elderly residents but is the youngest population in the UK.  Each day >100,000 people are treated in hospital, see their GP or are cared for by the NHS. The West Midlands was one of the hardest hit regions for COVID admissions in both wave 1 & 2.\n\nEHR. University Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & 100 ITU beds. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.  UHB has cared for >5000 COVID admissions to date.\n\nScope: All COVID swab confirmed hospitalised patients to UHB from January – May 2020.  The dataset includes highly granular patient demographics & co-morbidities taken from ICD-10 & SNOMED-CT codes but also primary care records& clinic letters.  Serial, structured data pertaining to care process (timings, staff grades, specialty review, wards), presenting complaint, acuity, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations), all blood results, microbiology, all prescribed & administered treatments (fluids, antibiotics, inotropes, vasopressors, organ support), all outcomes.  Linked images available (radiographs, CT, MRI, ultrasound). \n\nAvailable supplementary data:\nHealth data preceding & following admission event. Matched “non-COVID” controls; ambulance, 111, 999 data, synthetic data.\n\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://www.pioneerdatahub.co.uk/wp-content/uploads/Covid-Acuity-Non-OMOP-Infographic.pdf']}",730b3e54-1f59-4c07-b5d6-e6b63e4dda35,https://web.www.healthdatagateway.org/dataset/730b3e54-1f59-4c07-b5d6-e6b63e4dda35,"{'access': {'accessRequestCost': 'www.pioneerdatahub.co.uk/data/data-services-costs/', 'jurisdiction': 'GB', 'deliveryLeadTime': '1-2 MONTHS', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'dataProcessor': 'NOT APPLICABLE', 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.'}, 'formatAndStandards': {'vocabularyEncodingScheme': 'SNOMED CT', 'format': ['SQL'], 'language': 'en', 'conformsTo': 'LOCAL'}, 'usage': {'dataUseLimitation': 'RESEARCH USE ONLY', 'resourceCreator': 'This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)', 'isReferencedBy': ['Sapey, E., Gallier, S., Mainey, C., Nightingale, P., McNulty, D., Crothers, H., Evison, F., Reeves, K., Pagano, D., Denniston, A. K., Nirantharakumar, K., Diggle, P., Ball, S., & All clinicians and students at University Hospitals Birmingham NHS Foundation Trust (2020). Ethnicity and risk of death in patients hospitalised for COVID-19 infection in the UK: an observational cohort study in an urban catchment area. BMJ open respiratory research, 7(1), e000644. https://doi.org/10.1136/bmjresp-2020-000644'], 'dataUseRequirements': 'PROJECT SPECIFIC RESTRICTIONS'}}","{'origin': {'purpose': 'CARE', 'source': 'EPR', 'collectionSituation': ['ACCIDENT AND EMERGENCY', 'IN-PATIENTS']}, 'temporal': {'accrualPeriodicity': 'QUARTERLY', 'distributionReleaseDate': '2020-10-20', 'startDate': '2018-01-01', 'timeLag': 'LESS 1 WEEK', 'endDate': '2020-11-03'}}",2020-12-09T16:54:26Z,"[{'observedNode': 'Events', 'measuredValue': 'Currently 5943 covid positive patients', 'disambiguatingDescription': 'NOT APPLICABLE', 'observationDate': '2020-11-03', 'measuredProperty': 'COUNT'}]",2.0.0,,2021-02-25T14:57:01Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 2, 'structuralMetadata.tableName': 2, 'structuralMetadata.tableDescription': 2, 'structuralMetadata.dataElementsCount': 20, 'structuralMetadata.columnName': 20, 'structuralMetadata.columnDescription': 20, 'structuralMetadata.dataType': 20, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '3ad7dce4-ee5a-4673-bb29-b87edf31638a', 'description': 'Contains key physiological measurements taken from SARS-CoV-2Positive in-patients throughout their visit to the Queen Elizabeth Hospital, Birmingham', 'name': 'Measurement', 'dataElementsCount': 10, 'dataElements': '2bb4f612-0942-414a-b04c-392195e708fe, 540593f6-8d00-4c49-ac70-f1828d314a39, 6fc84688-23ea-4c65-b855-63518c977684, 92e53973-2981-468f-b7d0-8305f4d9cedc, ec7e68fd-f206-4022-89b5-574a158dabdf, 4ecf74c5-cd69-4fd5-92c3-024d543d067b, 6e9c2c2a-80c3-4607-813d-5361e724d6d1, e9c4b7a7-9476-4d4f-a60f-651d7194bbb2, 8495c198-bfff-4c61-9418-1f0cdfc7d071, d95b7c43-b0c4-4c4b-a2d8-507459934ff8'}, {'id': '1195d542-1810-4509-8077-807bd9b83a8a', 'description': 'Describes dates and times of admission,\noutcome of admission and basic demographics of the patient', 'name': 'Visit', 'dataElementsCount': 10, 'dataElements': 'd6feaa0f-4310-4609-8fe6-322ef04d282c, cc78ed1c-f7b1-447e-8f82-3e2e8fcda98b, 342b76a6-1959-4baa-9e72-89b3fe9bed5e, ce3c26d7-bb4c-4d7b-aa88-0bd9f8fce4db, eb4e78d0-0f78-4f5f-a96d-070af405bf52, bbddcf1b-6ee5-4433-9d7e-29b2067ec2a3, 7f77fe94-663c-45a8-a2db-432ff9124b21, a1f7e527-503b-4489-b527-442679939c6b, 32f4850d-af95-4239-a3f6-3eb25a6e5f52, dd40ba9b-492d-4761-a21e-f69bf5a56ce2'}]}"
"{'title': 'UK BiLEVE Consortium Dataset', 'doiName': 'In Progress', 'abstract': 'This project aims to leverage the power of UK Biobank to detect rare genetic variants associated with lung function.', 'publisher': {'name': 'BREATHE', 'memberOf': 'HUB', 'contactPoint': 'breathe.saildatabank@swansea.ac.uk'}, 'contactPoint': 'breathe.saildatabank@swansea.ac.uk', 'keywords': ['GWAS', 'LUNG FUNCTION', 'COPD', 'UKBiLEVE', 'UK BIOBANK', 'BREATHE']}",b8bcda0b-3c90-4382-aeb7-b01fc27e58fa,"{'followup': '> 10 YEARS', 'pathway': 'UK Biobank broadly representative general population (with caveats explained in UK Biobank publications), cases and controls were defined from extremes and the middle of the % predicted FEV1 distribution among never-smokers and heavy smokers (defined from UK Biobank baseline spirometry and total (pack-years) smoking exposure)', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '40-69', 'spatial': 'United Kingdom'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '135c61a6-2443-4c09-b1ec-af803c7491b8', '4.0.0': '73462506-32c5-43a0-963e-06d67e967b97', '1.0.0': 'dff13482-3f47-4ca0-b7af-80c1d9dd7e8c', '2.0.0': '1d7d2724-3175-438b-a3a3-77875f776548', '3.0.0': 'c43363e5-a2cd-4990-a425-733dfe559a4f', 'latest': '73462506-32c5-43a0-963e-06d67e967b97'}","{'description': 'https://www.nature.com/articles/s41588-018-0321-7       \n\nLung function is an important indicator of respiratory health and mortality. Measures of lung function show irreversible airway obstruction in chronic obstructive pulmonary disease (COPD), a progressive condition affecting 900,000 people in the UK. Smoking is a strong risk factor for COPD but not all smokers are equally susceptible. Genetic approaches to understanding the mechanisms underlying the maintenance of good lungs aim to reveal previously unknown molecular targets for drug development and to facilitate stratified approaches to treatment and care. This project aims to detect rare genetic variants associated with lung function. Once discovered, such variants tend to exert a large effect on disease risk and provide a means to translate findings from genetic studies of lung function to clinical relevant research and development. The proposed study leverages the power of Uk Biobank and respiratory genomics to advance understanding of lung function and COPD.', 'isPartOf': 'NOT APPLICABLE'}",73462506-32c5-43a0-963e-06d67e967b97,https://web.www.healthdatagateway.org/dataset/73462506-32c5-43a0-963e-06d67e967b97,"{'access': {'jurisdiction': 'GB', 'deliveryLeadTime': 'LESS 1 WEEK', 'accessService': 'Available as a flat file for researchers to download.', 'accessRequestCost': 'No cost to access full GWAS Summary statistics (https://www.ebi.ac.uk/gwas/publications/26423011)', 'dataProcessor': 'Department of Health Sciences, University of Leicester, UK', 'dataController': 'Department of Health Sciences, University of Leicester, UK', 'accessRights': ['https://www.ebi.ac.uk/gwas/publications/30804560']}, 'usage': {'dataUseLimitation': 'GENERAL RESEARCH USE', 'isReferencedBy': ['Shrine, N., Guyatt, A.L., Erzurumluoglu, A.M. et al. 2019. New genetic signals for lung function highlight pathways and chronic obstructive pulmonary disease associations across multiple ancestries. Nat Genet 51, 481–493. https://doi.org/10.1038/s41588-018-0321-7'], 'investigations': ['https://doi.org/10.1038/ng.3752'], 'resourceCreator': 'UK BiLEVE Consortium. Please cite Wain et al 2015, doi: 10.1016/S2213-2600(15)00283-0'}, 'formatAndStandards': {'language': 'en', 'vocabularyEncodingScheme': 'LOCAL', 'conformsTo': 'LOCAL', 'format': ['Tab delimited text']}}","{'temporal': {'timeLag': 'NOT APPLICABLE', 'endDate': '2019-02-01', 'distributionReleaseDate': '2019-02-25', 'accrualPeriodicity': 'STATIC', 'startDate': '2007-01-01'}, 'origin': {'collectionSituation': 'OTHER', 'purpose': 'STUDY', 'source': 'EPR'}}",2020-01-13T15:48:21Z,,4.0.0,"{'derivation': ['Derived lung function variables deposited with UK Biobank'], 'tools': ['https://doi.org/10.1136/bmjresp-2020-000755'], 'qualifiedRelation': ['Linkage to other UK Biobank data feasible via an application to UK Biobank: https://www.ukbiobank.ac.uk/register-apply/']}",2021-03-02T17:52:56Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Critical Care Minimum Dataset', 'keywords': ['BartsHealth'], 'contactPoint': 'BartsHealth.ResearchDataRequest@nhs.net', 'publisher': {'identifier': '607db9c2e1f9d3704d570cde', 'name': 'BARTS HEALTH', 'memberOf': 'ALLIANCE'}, 'abstract': 'Nationally defined dataset containing administrative details for stays within an adult, pead or neonatal critical care unit. Items are coded using the national definitions.'}",c71fbdc3-0311-4b3f-a9ff-7d2f2c0ba993,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '8f6a8596-fcb2-47fe-8add-b3bb6bc3db87', '3.0.0': '73941d19-6fcd-40e9-a7bd-ef0d91f93de9', '1.0.0': '673626f3-bdac-4d32-9bb8-c890b727c0d1', '2.0.0': 'cb020c3c-f738-4741-bf6b-3df16611b02e', 'latest': '73941d19-6fcd-40e9-a7bd-ef0d91f93de9'}","{'description': 'Nationally defined dataset containing administrative details for stays within an adult, pead or neonatal critical care unit. Items are coded using the national definitions.', 'isPartOf': 'CDS'}",73941d19-6fcd-40e9-a7bd-ef0d91f93de9,https://web.www.healthdatagateway.org/dataset/73941d19-6fcd-40e9-a7bd-ef0d91f93de9,"{'access': {'accessRights': ['Available locally within Trust corporate Data Warehouse System and authorised access by Trust staff only.\nDataset is also available via SUS/HES for government statistical purposes.'], 'deliveryLeadTime': 'OTHER'}}",,2020-01-13T16:54:41Z,[{}],3.0.0,,2022-01-27T13:44:28Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 4, 'structuralMetadata.tableName': 4, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 61, 'structuralMetadata.columnName': 61, 'structuralMetadata.columnDescription': 61, 'structuralMetadata.dataType': 61, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'c210af48-e5f4-4049-928e-ae7771a1836c', 'name': 'dbo.CRIT_CARE_PERIOD', 'dataElementsCount': 41, 'dataElements': '5d859f3e-a461-4059-80f6-f5488e6015e2, f7156aea-cb79-4cb5-8bf9-de9a3602e5c3, e459dc38-c001-4d8b-82b8-9ba4fede25f9, 13aa579a-bb1f-499f-90b5-620f280286db, a770832c-6721-4f4c-9c22-c2d3c614b083, 8456e9ee-3755-40a0-81c6-72a304371cc2, c6af7862-73ff-4a08-a7f4-5901639e71ea, 7b1102d6-1118-4a59-b5f9-cfb2855d63bd, 6e41e25a-6fbe-40a3-8a97-8d42db8652ad, af0a359a-061e-4839-bb57-724c19b38c20, bd9015d0-1c31-41c1-9271-274ff721cf7e, d59fcaa4-6b5c-477a-b5fc-370ae20bb288, 36c18a08-d2c2-4f8d-bd18-ca5b4440bcb7, e7c7938a-bc34-4b43-b72a-e58f7ff928c1, 6646e2ea-e60c-4415-8766-8c41ccf13290, 6ed9c414-6609-4f31-b57e-30c07c11e212, cec9fac3-5ad7-4548-ac8a-e90387e82b19, 78f1f31d-958d-48ea-b8ba-78d741e64978, 996aa0a9-95c7-433b-9391-0ed893d61f79, 8528f896-e9fb-4b8d-a90b-df7655046108, 28f33a45-71c1-4f47-ae17-9d5323f2550c, dd99a5df-783c-43d6-b69e-019f3a43fd61, ee0ceaff-4557-4bce-b6be-954be2d9dd0b, 651a11b7-4b19-4de2-ab34-3e475892c626, 2aef0310-425a-4a4b-a257-1a4af403d178, a787d629-3ad0-40f9-8ccf-e95a53b6d1d3, 883814bf-9c18-4aa2-9361-b5c20aaad4fd, 06671eb8-0451-49ed-845f-6f1ad211e2d5, b7cac1fb-5392-479a-b090-0bf9593dee9d, fc3311b7-27f6-4cf3-ab3c-c15115c2ea88, 67ca95aa-e326-4150-ae21-0d033c0ba84d, a78cba11-34f9-4644-bf7d-980e21ef2cb0, 1cd5c9f9-4b7a-4a61-9436-138fb6cd58fc, 6eadb468-432e-4277-8fff-42a7662aadb9, 3b918830-fbeb-4d70-955d-3f0d4294417a, f4fefe52-8b83-472d-97ea-ad608a2772f1, 13129a8f-6342-4b25-98d0-bdde987838ef, e39039be-e800-44ca-8947-3192db3b7ddd, 5f352ce0-80e8-4502-a270-e0e36c39938d, 5837a710-c39a-48b3-b029-ee31af79c82e, d3e0d768-876d-4e06-b425-bdc1f0b2bdcb'}, {'id': 'ba72b310-25fd-45a3-a241-9fc05e3c6540', 'name': 'dbo.CRIT_CARE_ACTIVITY', 'dataElementsCount': 7, 'dataElements': 'a6ce6b02-2d56-4976-a58f-ae9e29bb8cd8, 3df3f64d-e7f0-459a-907e-ec54d2acaa89, 001b6e81-866e-4041-b0f4-3479fa02efe2, 17146c24-f3be-4dea-8473-2080249e05ad, 2a6c85d0-dc23-4ac1-a190-458e5e54c0af, 1043b5b8-be7a-4f61-93e8-cdd8afeaf966, 7dede969-2318-4a10-b4bd-ccb4e9de7376'}, {'id': '3bc97c70-db2c-4681-a1d1-c158173d8049', 'name': 'dbo.CRIT_CARE_OPCS', 'dataElementsCount': 7, 'dataElements': '569235fc-a818-4fc8-8250-c5aafbfb81bd, 330816b1-0926-4893-80f9-b4e6fd85646c, d313bf0b-8a8f-43a6-8aae-5c3af359cbed, dd4df1b8-136d-4aad-ba92-9db783627aa3, 49f3f80f-20c6-43f4-9a8d-ad900cdafee7, c07b21e0-0e62-4bdf-989f-b83983faa887, bc464652-568c-49c7-8aa2-9b609600affa'}, {'id': '6a5363d7-2799-4713-95cc-a001ace76957', 'name': 'dbo.CRIT_CARE_ACTIVITY_DAY', 'dataElementsCount': 6, 'dataElements': '64b5749a-7228-4851-9277-6cb9333f64de, 91e1fbb0-c213-450d-b52f-797097d40bf9, 58940ede-5f50-443f-b0f3-b5548e33f4b7, fec42bb6-69e4-4037-96a8-f6e66fa22491, 11419486-c0fe-4347-a811-ffedf79c1047, dba91baf-f8ea-4359-8cd2-df4c2d8a5564'}]}"
"{'title': 'Myeloma XII clinical trial samples', 'contactPoint': 'ctru-myelomaxii@leeds.ac.uk', 'doiName': 'Not Available', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY', 'contactPoint': 'ctru-myelomaxii@leeds.ac.uk'}, 'keywords': ['Myeloma XII', 'Multiple myeloma (disorder)', 'Clinical', 'UKCRC Tissue Directory'], 'abstract': 'Collection of samples and data across the following diseases: Multiple myeloma (disorder).'}",576fbcf8-ff25-4230-ae69-e72ca02b95f1,"{'physicalSampleAvailability': ['BONE MARROW', 'PERIPHERAL BLOOD CELLS', 'SERUM', 'URINE'], 'typicalAgeRange': '40-150', 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '0cd8aba9-bbd9-4d03-b276-0d25f286597a', '3.0.0': '74241b17-23b7-4233-b7b9-1a484aa053b0', '1.0.0': 'f5e6f5ca-a0c6-49ce-a5fd-c4d07552ebf6', '2.0.0': '4d95d730-a53a-4856-a278-b2fba96657c4', 'latest': '74241b17-23b7-4233-b7b9-1a484aa053b0'}","{'description': ""Samples collected from myeloma patients at first relapse registered into the Myeloma XII trial, and sent to the following central labs: \n1. Central immunology laboratory, University of Birmingham - peripheral clotted blood and urine collected at various timepoints throughout the trial; \n2. Haematology Malignancy Diagnostic Service (HMDS) laboratory, St James's University Hospital, Leeds - bone marrow aspirate, collected at various timepoints throughout the trial; \n3. Leeds Institute of Cancer and Pathology (LICAP), University of Leeds - peripheral blood, serum, and bone marrow aspirate collected at various timepoints throughout the trial."", 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",74241b17-23b7-4233-b7b9-1a484aa053b0,https://web.www.healthdatagateway.org/dataset/74241b17-23b7-4233-b7b9-1a484aa053b0,"{'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}, 'access': {'dataProcessor': 'Not Applicable', 'accessRequestCost': 'Not specified', 'accessRights': 'Please contact the publisher using Contact Point details provided.', 'jurisdiction': 'GB-ENG', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED.', 'dataController': 'Clinical Trials Research Unit, University of Leeds'}}","{'temporal': {'startDate': '2017-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:16:32Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:06:53Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'NIHR IBD BioResource: Contact detail', 'abstract': 'The NIHR IBD BioResource acquires contact details - name, address, email address, phone/mobile number - from participants at recruitment. This is used to re-contact participants to invite them to take part in experimental medicine studies.', 'publisher': {'identifier': '607db9c3e1f9d3704d570d0a', 'name': 'GUT REACTION', 'memberOf': 'HUB'}, 'keywords': [""Crohn's"", 'IBD', 'colitis', 'recall'], 'contactPoint': 'nbr@bioresource.nihr.ac.uk'}",02ddc5c9-03d4-40e4-9934-e60817ec8f3e,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '18-85', 'followup': '1 - 10 YEARS', 'spatial': ['https://www.geonames.org/2635167/united-kingdom.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '747d57aa-a02b-411c-9403-2e3ec9d3e5b5'},"{'description': 'The NIHR IBD Bioresource comprises ~34k participants with Inflammatory Bowel Disease (IBD). The NIHR IBD BioResource acquires contact details - name, address, email address, phone/mobile number - from participants at recruitment. This is used to recontact participants to invite them to take part in experimental medicine studies, although sample-only and data-only studies are permitted. We also record NHS number, where known, to allow linkage to healthcare records. Recruitment takes place at disease clinics. A participant is not considered a member of the NIHR IBD BioResource without contact details.', 'isPartOf': 'Not Applicable', 'associatedMedia': ['https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction-data-sources', 'https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction/', 'https://bioresource.nihr.ac.uk/about-us/governance-and-ethics/privacy-notice/', 'https://bioresource.nihr.ac.uk/about-us/governance-and-ethics/']}",747d57aa-a02b-411c-9403-2e3ec9d3e5b5,https://web.www.healthdatagateway.org/dataset/747d57aa-a02b-411c-9403-2e3ec9d3e5b5,"{'usage': {'investigations': ['https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction-data-sources', 'https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction/', 'https://bioresource.nihr.ac.uk/about-us/governance-and-ethics/privacy-notice/', 'https://bioresource.nihr.ac.uk/about-us/governance-and-ethics/'], 'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS'], 'isReferencedBy': ['Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/'], 'resourceCreator': ['NIHR BioResource. 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"{'title': 'NIHR BioResource: Metabolite data', 'keywords': ['Metabolite', 'Metabolon'], 'publisher': {'name': 'NIHR BIORESOURCE', 'identifier': '607db9c4e1f9d3704d570d3f', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'nbr@bioresource.nihr.ac.uk', 'abstract': 'Some of the general population participants have had sera or plasma measured for metabolites, using Metabolon technology.'}",dec09f2e-a93f-41e2-8217-72431ea4a19e,"{'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM'], 'typicalAgeRange': '18-85', 'spatial': ['United Kingdom (https://www.geonames.org/2635167/united-kingdom.html)'], 'followup': '1 - 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'3.0.0': 'd0241a21-a179-4ea3-b94d-06fa8d2227c2', '5.0.0': '74b54e34-0e01-4447-be1d-e9da3e03cd2e', '4.0.0': 'bf083b35-da74-4b82-87d3-203ba60325c6', '2.0.0': '004d1932-f06e-49d2-b87a-e5e4140ffbb3', '0.0.1': '1e68638b-4f27-4af3-ad80-b40cec7caf26', '1.0.0': 'b380014d-10e5-4ef5-a1ef-f0ff2f5b622d', 'latest': '74b54e34-0e01-4447-be1d-e9da3e03cd2e'}","{'description': 'The NIHR Bioresource consists of several groups of participants: ~70k from the general population and blood donors (COMPARE, INTERVAL and STRIDES studies); ~19k with one of ~50 rare diseases (RD) including a ~5k pilot for GEL; ~30k with Inflammatory Bowel Disease (IBD) which include the members of Gut Reaction, the Health Data Research Hub for IBD; and ~20k with Anxiety or depression (GLAD study). It intends to extend recruitment in all areas, and to other rare and common disease groups, with a target of ~300k by 2022.  Some of the general population participants have had sera or plasma measured for metabolites, using Metabolon technology.', 'isPartOf': 'Not Applicable'}",74b54e34-0e01-4447-be1d-e9da3e03cd2e,https://web.www.healthdatagateway.org/dataset/74b54e34-0e01-4447-be1d-e9da3e03cd2e,"{'access': {'jurisdiction': ['GB-GBN'], 'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)', 'accessService': 'Some de-identified data may be released to researchers in a platform-independent filetype (e.g. CSV). However, access to any data acquired via NHS Digital is subject to strict restrictions governing where data may be accessed and from which locale - access is currently via an experimental safe haven built in Microsoft Azure.', 'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)', 'deliveryLeadTime': '2-6 MONTHS', 'accessRequestCost': ['https://bioresource.nihr.ac.uk/using-our-bioresource/industry-researchers/industry-bioresource-usage-costs/'], 'accessRights': ['https://bioresource.nihr.ac.uk/using-our-bioresource']}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'format': ['text/csv']}, 'usage': {'dataUseLimitation': ['RESEARCH USE ONLY'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'isReferencedBy': ['Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/'], 'resourceCreator': ['NIHR BioResource. Acknowledgement text: ""We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.""']}}","{'temporal': {'accrualPeriodicity': 'STATIC', 'timeLag': '6 MONTHS PLUS'}, 'origin': {'source': ['MACHINE GENERATED'], 'purpose': ['STUDY'], 'collectionSituation': ['OTHER']}}",2020-01-13T15:06:28Z,[{}],5.0.0,{'derivation': ['Not Available']},2021-11-25T12:00:28Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Audit of Dementia Round 4 - casenote audit', 'contactPoint': 'DataSharing@hqip.org.uk', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d23', 'name': 'HQIP'}, 'keywords': ['Audit', 'Dementia', 'NAD', 'Casenote', 'Hospital'], 'abstract': 'Includes data on the assessments, discharge planning and personal information used in care, received by people with dementia  in hospital.  Minimum 50 cases per hospital, collected April-October 2018. Scores produced for assessment and discharge planning.'}",587a94e6-48a4-4e5e-8230-4018897bc7c7,"{'typicalAgeRange': '19-105', 'followup': 'UNKNOWN', 'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'dementia care in general hospitals'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'b813c9cc-a01f-467e-b565-46a0ee805704', '4.0.0': '74be1c67-ab42-4716-a63b-be3f5de0d489', '1.0.0': 'd2f08063-736a-49f3-8c17-32d496d3f2a4', '2.0.0': '304430ff-0aff-4d36-91e5-94be251a409a', '3.0.0': 'f8866aa4-67cc-4655-b315-0c4e7b3406ae', 'latest': '74be1c67-ab42-4716-a63b-be3f5de0d489'}","{'description': 'Includes data on the assessments, discharge planning and personal information used in care, received by people with dementia during their stay in hospital. Standards have been drawn from national and professional guidance. Minimum of 50 cases per hospital. Data collected April-October 2018. Scores produced for assessment and discharge planning  \n\nhttps://www.rcpsych.ac.uk/docs/default-source/improving-care/ccqi/national-clinical-audits/national-audit-of-dementia/r4-resources/tools-guidance/nad4-(2018)-casenote-audit-v1.pdf?sfvrsn=7ed8b6a1_6', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)', 'associatedMedia': ['https://www.hqip.org.uk/a-z-of-nca/dementia-care-in-general-hospitals/']}",74be1c67-ab42-4716-a63b-be3f5de0d489,https://web.www.healthdatagateway.org/dataset/74be1c67-ab42-4716-a63b-be3f5de0d489,"{'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL', 'ICD10'], 'language': ['en'], 'conformsTo': ['LOCAL'], 'format': ['CSV']}, 'access': {'jurisdiction': ['GB-EAW'], 'accessRequestCost': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'accessRights': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'deliveryLeadTime': 'VARIABLE', 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England', 'dataProcessor': 'Royal College of Psychiatrists'}, 'usage': {'dataUseLimitation': ['NO RESTRICTION'], 'resourceCreator': ['Data has been provided by the Healthcare Quality Improvement Partnership from the National Audit of Dementia'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS']}}","{'origin': {'collectionSituation': ['IN-PATIENTS'], 'source': ['ELECTRONIC SURVEY', 'PAPER BASED'], 'purpose': ['AUDIT']}, 'temporal': {'startDate': '2018-04-01', 'endDate': '2018-09-30', 'accrualPeriodicity': 'OTHER', 'timeLag': 'VARIABLE'}}",2020-01-13T10:40:44Z,"[{'observedNode': 'PERSONS', 'measuredValue': 9782, 'disambiguatingDescription': 'number of casenote reviews in the dataset', 'observationDate': '01/04/2021', 'measuredProperty': 'Count'}]",4.0.0,{'derivation': ['Not Available']},2021-11-12T16:08:53Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Paediatric Diabetes Audit - core clinical dataset', 'keywords': ['Audit', 'NPDA', 'Paediatric', 'Diabetes', 'Core'], 'abstract': 'Record level clinical data on the health checks (care processes) and outcomes for children and young people with diabetes who have attended PDUs (paediatric diabetes units) in England and Wales.', 'publisher': {'identifier': '607db9c4e1f9d3704d570d23', 'name': 'HQIP', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'datasharing@hqip.org.uk'}",e355c9b9-44f0-4ba3-a872-645aa88f4f2b,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': '> 10 YEARS', 'typicalAgeRange': '0-25', 'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html'], 'pathway': 'The dataset is representative of paediatric diabetes care as 100% of paediatric units submit. Very few children or young people with diabetes would be managed outside of this setting.'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'4.0.0': '58e16c60-966a-4199-ae60-211d69fa6b48', '5.0.0': '75dabfb3-69b7-4192-b257-d0d814e5872d', 'latest': '75dabfb3-69b7-4192-b257-d0d814e5872d'}","{'description': 'The National Paediatric Diabetes Audit (NPDA) includes record-level clinical data on the health checks (care processes) and outcomes for children and young people with diabetes who have attended paediatric diabetes units (PDUs) in England and Wales.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)', 'associatedMedia': ['https://www.hqip.org.uk/a-z-of-nca/national-paediatric-diabetes-audit/']}",75dabfb3-69b7-4192-b257-d0d814e5872d,https://web.www.healthdatagateway.org/dataset/75dabfb3-69b7-4192-b257-d0d814e5872d,"{'usage': {'resourceCreator': ['Data has been provided by the Healthcare Quality Improvement Partnership from the National Paediatric Diabetes Audit Programme'], 'dataUseLimitation': ['NO RESTRICTION'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS']}, 'formatAndStandards': {'language': ['en'], 'format': ['CCSV', 'XLXS', 'STATA', 'SPSS'], 'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL', 'NHS DATA DICTIONARY']}, 'access': {'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England', 'accessRights': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data', 'https://www.rcpch.ac.uk/resources/national-paediatric-diabetes-audit-transparency-open-data#downloadBox'], 'accessRequestCost': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data', 'https://www.rcpch.ac.uk/resources/national-paediatric-diabetes-audit-transparency-open-data#downloadBox'], 'dataProcessor': 'Royal College of Paediarics and Child Health', 'deliveryLeadTime': 'VARIABLE', 'jurisdiction': ['GB-EAW']}}","{'temporal': {'timeLag': 'MORE 6 MONTHS', 'endDate': '2020-03-31', 'distributionReleaseDate': '2020-03-01', 'startDate': '2019-04-01', 'accrualPeriodicity': 'CONTINUOUS'}, 'origin': {'collectionSituation': ['CLINIC'], 'purpose': ['AUDIT'], 'source': ['ELECTRONIC SURVEY']}}",2021-11-05T16:45:35Z,"[{'observedNode': 'FINDINGS', 'measuredValue': 166, 'disambiguatingDescription': 'Number of paediatric diabetes units submitting data to the audit (out of 173 in England and Wales)', 'observationDate': '31/03/2020', 'measuredProperty': 'Count'}]",5.0.0,"{'qualifiedRelation': ['Data linked with that from other custodians may be available, but the release of linked data will be subject to the separate permission of all relevant data controllers'], 'derivation': ['Not Available']}",2022-01-05T11:55:11Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 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The Scheme targets clients aged 16 and over who have, or are at risk of developing, a chronic disease.'}",131784c0-769d-4f7b-b7d0-b5f4b89886d4,"{'followup': '6 - 12 MONTHS', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2634895/wales.html'], 'pathway': 'Pathways pertaining to exercise treatments and physical activity prescribed', 'typicalAgeRange': '16-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '442a311d-077f-4c50-99d0-81ea703fc90a', '5.0.0': '76535d6e-ce0c-407c-ba22-1b2420a1e654', '2.0.0': 'ade4cf22-2dd0-485c-9ef1-955585aeed6f', '4.0.0': '8270e26b-65ea-479c-8462-f5315b2657eb', '3.0.0': 'fe3c7527-e802-4a51-9aa2-19e7d4d22783', '0.0.1': '6aca50ea-0ff8-46b9-88df-6722965975d2', 'latest': '76535d6e-ce0c-407c-ba22-1b2420a1e654'}","{'description': 'The National Exercise Referral Scheme (NERS) is a Public Health Wales (PHW) funded scheme which has been in development since 2007. The Scheme targets clients aged 16 and over who have, or are at risk of developing, a chronic disease. The scheme is centrally managed by the Welsh local Government Association.\n\nNERS is an evidence-based health intervention incorporating physical activity and behavioural change techniques to support referred clients to make lifestyle changes to improve their health and wellbeing.\n\nThe principal aims of the scheme:\n\nTo offer a high quality National Exercise Referral Scheme across Wales\nTo increase the long term adherence of clients to physical activity\nTo improve the physical and mental health of clients\nTo determine the effectiveness of the intervention in increasing clients’ activity levels and improving their health.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/'], 'isPartOf': 'No Group'}",76535d6e-ce0c-407c-ba22-1b2420a1e654,https://web.www.healthdatagateway.org/dataset/76535d6e-ce0c-407c-ba22-1b2420a1e654,"{'access': {'dataController': 'Welsh Government', 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'deliveryLeadTime': '2-6 MONTHS', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'accessRights': ['https://saildatabank.com/application-process/'], 'dataProcessor': 'SAIL Databank', 'jurisdiction': ['GB']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE', 'RESEARCH SPECIFIC RESTRICTIONS'], 'dataUseRequirements': ['', 'PROJECT SPECIFIC RESTRICTIONS'], 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'resourceCreator': ['[""Public Health Wales NHS Trust""]'], 'isReferencedBy': ['Not Available']}, 'formatAndStandards': {'format': ['SQL database table'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en']}}","{'origin': {'purpose': ['STUDY'], 'collectionSituation': ['PRIMARY CARE', 'OTHER'], 'source': ['ELECTRONIC SURVEY']}, 'temporal': {'timeLag': '1-2 MONTHS', 'endDate': '2019-08-14', 'accrualPeriodicity': 'ANNUAL', 'startDate': '2001-09-20', 'distributionReleaseDate': '2018-05-14'}}",2020-01-13T14:47:31Z,"[{'measuredValue': '3000000', 'observedNode': 'FINDINGS', 'observationDate': '01/01/2021', 'measuredProperty': 'Count'}]",5.0.0,"{'qualifiedRelation': ['Yes. To any SAIL dataset & reference data.'], 'derivation': ['Not Available'], 'tools': ['https://conceptlibrary.saildatabank.com/']}",2021-09-02T13:09:23Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 2, 'structuralMetadata.tableName': 2, 'structuralMetadata.tableDescription': 2, 'structuralMetadata.dataElementsCount': 256, 'structuralMetadata.columnName': 256, 'structuralMetadata.columnDescription': 256, 'structuralMetadata.dataType': 256, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '0ad7afd0-2697-4852-8909-440f0998f52e', 'description': 'Waist measurement at initial consulration. Unclear if this is always in centimeters.', 'name': 'ners_generic_alf', 'dataElementsCount': 13, 'dataElements': '62c36e94-5dd1-40d1-bbdf-1585e47861a5, 32d29a90-dad9-4538-8868-670387812f9f, 5e08d3aa-f9f6-4660-8c94-6a5f72214f1c, 6e54e9ab-b6df-4bb0-a832-946ed6f1ebec, de6c0c69-abb3-42ab-a2f0-fb57325a86fa, a0e3e77d-9a71-4050-b99b-b0353e74f109, 19520966-bca3-4cbe-888b-5ade6db01efc, b0d6bfce-f441-4ecd-9c6f-1ace6872892c, 08813004-35f6-4f7f-ad2e-33529607135a, f9e2030c-d94c-412b-947e-1f8bffe9124c, 7a21993c-276b-4869-a34c-3a1cecdf6450, 9bda27c0-0737-44d0-80f5-56b30c925e0a, 02f87de9-7dc7-4773-8d52-20dbf5243610'}, {'id': '686a6acf-33bd-499d-b988-3c1fa928fb4b', 'description': 'Provides detailed information and answers according to numerous questionnaires used in the NERS programme. This information should be read in conjunction with referral forms, and inclusion/exclusion criteria and protocols for each of the 12 exercise programmes. There are in excess of 2700 possible fields of data per participant. This dataset was designed to have two roles, programme management and outcome reporting, and thus the data in this table in particular was NOT designed to collect research quality data, however care is taken to ensure quality data is collected. Similarly, not all data can or is collected at each stage of the NERS programme; only some fields are mandatory. Similarly again, some tests utilised by NERS have changed over time - e.g. GPPAQ, EQ5 and SPAQ, and WEMWBS.', 'name': 'ners_generic', 'dataElementsCount': 243, 'dataElements': 'bec3f919-5d9b-411c-9d35-c727d2278d85, cd781f10-7317-41f6-b918-aff733774e80, b9bfb128-06ba-4368-b468-13659ff40244, c29a91f0-1d1f-45bb-96cb-0e555d9834e3, 92fe9e90-5f6a-417e-aced-36fd1943925f, ee72b1a0-fd9f-4c73-815e-308ac19228e7, b5bac119-600c-4ff7-b94d-e97c81f1a97d, 65bc5acf-3c0b-4d2c-b543-e6d821945786, a414012f-6701-428c-8509-e50c2f23df87, 5f1bd9ad-feb8-4977-9038-73bda798f0bd, 027f81e8-3b79-41b7-a7b9-d5d265a6bdd5, 77cd8a7f-b361-48e6-a7b5-30c4f6f93e12, a7d7eeaf-5733-4630-9bf9-0e99114dd7a1, 3d5f5281-aa3f-4576-ad98-17b722438a54, 3b5edf90-b00f-41b0-8102-33d9e4122779, 0ed15b5c-3bd8-4bb5-a2a5-a8c7ce255d3d, 5737ccae-1fba-40b9-951f-a7bfd13d4844, 31aafd2e-20ac-45a3-8097-566008a8b5ed, 6353523f-f47f-4212-b659-2481d3bca9ac, 29c6cd58-3a3a-4a6d-b07c-ae6c682f67ac, 82d43b6c-a584-47b4-a2ce-e49672f227cf, 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It includes information on the treatment and outcome of the appointment.', 'spatial': ['http://www.geonames.org/6269131/england.html'], 'followup': 'OTHER', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '7ea36294-0b76-482f-b757-71f47832d67b', '8.0.0': '76ac3c66-8c3f-41c1-8de2-2b56dd5512dc', '3.0.0': '5fffe53e-10bb-4d90-a5f6-fbac20c5ab9a', '4.0.0': '2ce0e66e-9d68-43bd-b728-e6d1905a9f65', '2.0.0': 'c720c89a-b2c6-4cd6-b606-df34ff22b1c8', '5.0.0': '8a05b76d-b0ec-4c28-96b5-11601e26933a', '6.0.0': '41f84b0f-0621-4e21-937b-cc05c183166b', '7.0.0': '4ee43bb7-54a1-40a9-9a2a-4f07cd5b1920', 'latest': '76ac3c66-8c3f-41c1-8de2-2b56dd5512dc'}","{'description': ""Hospital Episode Statistics (HES) is a database containing details of all admissions, A and E attendances and outpatient appointments at NHS hospitals in England.\n\nInitially this data is collected during a patient's time at hospital as part of the Commissioning Data Set (CDS). This is submitted to NHS Digital for processing and is returned to healthcare providers as the Secondary Uses Service (SUS) data set and includes information relating to payment for activity undertaken. It allows hospitals to be paid for the care they deliver. \n\nThis same data can also be processed and used for non-clinical purposes, such as research and planning health services. Because these uses are not to do with direct patient care, they are called 'secondary uses'. This is the HES data set.\n\nHES data covers all NHS Clinical Commissioning Groups (CCGs) in England, including:\n\nprivate patients treated in NHS hospitals\npatients resident outside of England\ncare delivered by treatment centres (including those in the independent sector) funded by the NHS\nEach HES record contains a wide range of information about an individual patient admitted to an NHS hospital, including:\n\nclinical information about diagnoses and operations\npatient information, such as age group, gender and ethnicity\nadministrative information, such as dates and methods of admission and discharge\ngeographical information such as where patients are treated and the area where they live\nWe apply a strict statistical disclosure control in accordance with the NHS Digital protocol, to all published HES data. This suppresses small numbers to stop people identifying themselves and others, to ensure that patient confidentiality is maintained.\n\nhttps://digital.nhs.uk/data-and-information/publications/statistical/hospital-outpatient-activity"", 'associatedMedia': ['https://digital.nhs.uk/data-and-information/publications/statistical/hospital-outpatient-activity'], 'isPartOf': 'HES'}",76ac3c66-8c3f-41c1-8de2-2b56dd5512dc,https://web.www.healthdatagateway.org/dataset/76ac3c66-8c3f-41c1-8de2-2b56dd5512dc,"{'formatAndStandards': {'conformsTo': ['NHS DATA DICTIONARY'], 'format': ['csv', 'JSON'], 'language': ['en'], 'vocabularyEncodingScheme': ['OPCS4', 'NHS NATIONAL CODES', 'ICD10', 'OTHER']}, 'usage': {'dataUseRequirements': ['ETHICS APPROVAL REQUIRED', 'NOT FOR PROFIT USE', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'investigations': ['https://digital.nhs.uk/services/data-access-request-service-dars/register-of-approved-data-releases'], 'dataUseLimitation': ['NO RESTRICTION'], 'resourceCreator': ['NHS Digital']}, 'access': {'dataProcessor': 'Not Applicable', 'accessRequestCost': ['https://digital.nhs.uk/services/data-access-request-service-dars/data-access-request-service-dars-charges'], 'deliveryLeadTime': '2-6 MONTHS', 'accessRights': ['https://digital.nhs.uk/services/data-access-request-service-dars'], 'jurisdiction': ['GB-ENG'], 'accessService': 'Once your DARS application has been approved, data will be made available either by secure file transfer or through the Data Access Environment (DAE).\n\nSecure file transfer: https://digital.nhs.uk/services/transfer-data-securely\n\nDAE: https://digital.nhs.uk/services/data-access-environment-dae', 'dataController': 'NHS Digital'}}","{'origin': {'purpose': ['CARE', 'ADMINISTRATIVE'], 'source': ['EPR', 'OTHER'], 'collectionSituation': ['OUTPATIENTS']}, 'temporal': {'startDate': '2004-03-20', 'accrualPeriodicity': 'MONTHLY', 'timeLag': '1-2 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"{'title': 'Moorfields DMO Dataset Release 001', 'publisher': {'memberOf': 'HUB', 'identifier': '5f8437a3b7dec2a83e8cceba', 'name': 'INSIGHT'}, 'keywords': ['diabetic macular oedema', 'Diabetic Retinopathy', 'Diabetes Mellitus Type 1', 'Diabetes', 'diabetic eye disease', 'aflibercept', 'ranibizumab', 'Heidelberg', 'Topcon', 'Protocol', 'Test', 'Scan', 'Images', 'OCT', 'optic disc', 'Eylea', 'Lucentis', 'DMO', 'Eye drop', 'Eye condition', 'Laterality', 'Left', 'Right', 'Diagnosis', 'Ocular', 'Ophthalmology', 'Visual Acuity', 'Vision', 'MEH', 'IVT', 'Colour photo', 'Modality', 'Injection', 'Grading', 'Diabetes Mellitus Type 2', 'Non-Proliferative Diabetic Retinopathy', 'Proliferative Diabetic Retinopathy', 'Background Diabetic Retinopathy', 'National Screening Grading', 'Screening Programme', 'Screening', 'Referral'], 'abstract': 'The Moorfields DMO Dataset is a longitudinal dataset consisting of routinely collected imaging and clinical metadata from patients receiving treatment for diabetic macular oedema (DMO) at Moorfields, from 2004 to the present.', 'contactPoint': 'enquiries@insight.hdrhub.org'}",120106fb-49b4-4bc0-b30c-50a59c5c6253,"{'typicalAgeRange': '0-120', 'physicalSampleAvailability': ['OTHER'], 'spatial': ['https://www.geonames.org/2648147/great-britain.html'], 'pathway': 'The dataset is representative of the entire pathway for patients receiving treatment for diabetic macular oedema (DMO) in the Medical Retina service at Moorfields Eye Hospital.', 'followup': '> 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '77422eb1-7bdb-4205-b3d0-57d1add35317'},"{'description': 'The Moorfields DMO Dataset is a longitudinal dataset consisting of routinely collected imaging and clinical metadata from patients receiving treatment for Diabetic Macular Oedema (DMO) at Moorfields, from 2004 to the present.\n \nThis dataset encompasses all patients at Moorfields Eye Hospital - the largest eye hospital in either Europe or North America - who have received at least one injection of either Lucentis (ranibizumab) or Eylea (aflibercept) for DMO. These therapies began at Moorfields in 2013, however, the dataset will include any imaging or clinical metadata that is available for these patients prior to that time (for example in patients who were initially monitored or received other treatments prior to receiving treatment). Also of note, this dataset will include data from both eyes in each case - for example, it will include data from fellow eyes that are not receiving injections. For these reasons, the dataset will include longitudinal data from a wide range of diabetic eye disease.\n \nClinical metadata includes demographic information, visual acuities (predominantly measured with Early Treatment Diabetic Retinopathy Study (ETDRS) charts), diabetic retinopathy grading, and information regarding intravitreal therapies and ocular surgeries.\n \nImaging metadata includes colour fundus photographs, optical coherence tomography (OCT) scans (Topcon, Heidelberg), fundus autofluorescence (Heidelberg), fluorescein and indocyanine green angiography (Heidelberg). \n \nThis dataset is continuously updating, however, as of 2021, it consisted of over 4,400 eyes receiving Lucentis or Eylea for DMO, over 42,000 injection episodes, and over 768,000 ophthalmic images. This is the largest single centre database from patients with DMO and covers more than a decade of follow-up for these patients.', 'associatedMedia': ['https://www.insight.hdrhub.org/about-us'], 'isPartOf': 'Not Applicable'}",77422eb1-7bdb-4205-b3d0-57d1add35317,https://web.www.healthdatagateway.org/dataset/77422eb1-7bdb-4205-b3d0-57d1add35317,"{'access': {'accessService': 'INSIGHT is developing its data access environment for researchers. Until such time INSIGHT releases anonymised data, under data licence, into external secure environments', 'accessRequestCost': ['https://www.insight.hdrhub.org/contact'], 'deliveryLeadTime': '2-6 MONTHS', 'accessRights': ['https://www.insight.hdrhub.org/researcher-area'], 'dataController': 'Moorfields Eye Hospital', 'dataProcessor': 'Google', 'jurisdiction': ['GB-ENG']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['INSIGHT Health Data Hub'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS']}, 'formatAndStandards': {'conformsTo': ['NHS DATA DICTIONARY', 'OTHER'], 'language': ['en'], 'format': ['CSV', 'Image'], 'vocabularyEncodingScheme': ['SNOMED CT', 'DM+D', 'NHS NATIONAL CODES']}}","{'temporal': {'startDate': '2003-04-20', 'timeLag': 'LESS 1 WEEK', 'accrualPeriodicity': 'CONTINUOUS'}, 'origin': {'purpose': ['STUDY'], 'source': ['EPR', 'MACHINE GENERATED', 'OTHER'], 'collectionSituation': ['CLINIC', 'ACCIDENT AND EMERGENCY', 'OUTPATIENTS', 'IN-PATIENTS']}}",2021-09-09T13:00:14Z,"[{'observedNode': 'PERSONS', 'measuredValue': '768440', 'measuredProperty': '768400', 'disambiguatingDescription': '3181 Patients\n6259 eyes with 768440 images\n4462 eyes with 42206 injections (Lucentis/Eylea)\n6362 eyes with 198851 visual acuity readings', 'observationDate': '20/07/2021'}]",1.0.0,"{'derivation': ['Not Applicable'], 'qualifiedRelation': ['None'], 'tools': ['']}",2021-09-09T13:00:14Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 7, 'structuralMetadata.tableName': 7, 'structuralMetadata.tableDescription': 7, 'structuralMetadata.dataElementsCount': 69, 'structuralMetadata.columnName': 69, 'structuralMetadata.columnDescription': 69, 'structuralMetadata.dataType': 69, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'f52ef739-5907-476f-9db5-960f33a1f000', 'description': 'This table contains the ocular surgery data', 'name': 'operation_procedure', 'dataElementsCount': 6, 'dataElements': 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59fa6c43-ea39-4e4f-ae26-f2e8f159e3e2'}, {'id': 'd2f5c699-452d-40c1-97c3-fed07f8857d0', 'description': 'This table contains the OCT reading data', 'name': 'oct_readings', 'dataElementsCount': 10, 'dataElements': '9c0682c6-99a5-4f49-93a3-0c502f7a1b20, da1b7e91-7898-4377-9e92-3ffdd89f2022, be87966e-12fa-4ab6-9fe0-423d0d4eac4b, 7f0038aa-ed0a-4508-8030-48643f47f5f0, 98e825c4-306b-4423-a133-c8f26589494f, e41c9c2f-3700-4043-81fc-5953ec493329, aec4d46d-bd09-4530-82b9-b69e3aaea95f, a8a5a07e-4e4c-4379-ae8c-86c77621a1ea, 9aaf2dd8-a5bd-4461-86c0-fd8cae85c4d9, d6823701-6bdd-4833-838d-76a88e17d29c'}, {'id': '181b8e7a-daed-45c0-ba29-ed7e4a8f292f', 'description': 'This table contains the diabetes retinopathy data', 'name': 'diabetic_retinopathy', 'dataElementsCount': 11, 'dataElements': 'd8bb975a-f707-43d6-9111-ded66df65407, 905a92f8-8bd0-4160-b98f-658473b632ac, 8b5718e3-b1b0-4193-9a38-8d2289f91f7f, 55d4fd81-8f3e-4980-855e-39efb5b79427, da6c0419-3090-43c0-8f5a-ddbbc875e975, 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"{'title': 'The National COVID-19 Chest Imaging Database', 'keywords': ['imaging', 'chest x-ray', 'chest MRI', 'COVID-19', 'chest CT scan', 'NCCID'], 'publisher': {'contactPoint': 'imaging@nhsx.nhs.uk', 'name': 'NHSX', 'memberOf': 'ALLIANCE'}, 'abstract': 'The National COVID-19 Chest Imaging Database is a joint collaboration between NHSX, BSTI and Royal Surrey NHS Foundation Trust to create a centralised UK database of X-Ray, CT and MRI images from hospital patients to inform the COVID-19 response.', 'contactPoint': 'imaging@nhsx.nhs.uk'}",31f0148b-f965-4136-ab39-6c5bbbf8c2d9,"{'followup': 'OTHER', 'spatial': 'England, Wales', 'typicalAgeRange': '12-109', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'X-Rays, CTs and MRIs'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '7d9d77da-1838-4e1e-8756-c1a196dc9d56', '3.0.0': '77824298-ef3b-40f7-a0a4-b6dedb2e7a02', '2.0.0': '8c13e03e-b9d2-4b04-8b98-097643a6beaf', '1.0.0': '531c5830-2408-451f-b515-4bff99a49ef1', 'latest': '77824298-ef3b-40f7-a0a4-b6dedb2e7a02'}","{'description': 'The NCCID collects processed digital chest X-ray, CT and MR images as well as DICOM header information, which is de-identified at the point of upload. Associated clinical data from the collection sites is also gathered and de-identified. The categories of data collected are:\nRoutine demographic data\nRoutine cardiorespiratory assessment data at presentation\nAll CXRs performed during evaluation for COVID-19\nAll CT scans performed during evaluation for COVID-19\nAll chest imaging performed in the 3 years preceding the first COVID-19-related imaging study (for COVID-19 positively-swabbed patients only)\nScans (including MR) performed to investigate cardiac damage thought to be COVID-19-related\nBiochemical and haematological routinely collected data\nOutcome data, including the time to mechanical ventilation, discharge and death\n\nData will be collected for all COVID-19 positively-swabbed patients and a smaller sample of COVID-19 negatively-swabbed patients. \nFor PCR-positive patients, we are collecting images performed within the last three years for each patient. For PCR-negative patients, we are collecting images performed within the last 4 weeks for each patient. \nThe full list of clinical data points collected for positive and negative patients can found in the documents below:\nCovid-19 Data (Positive) Template v1.5 (Excel)\nCovid-19 Status (Negative) Template v1.0 (Excel).\n\nData is made available to users on a continuous basis as hospital sites contribute more data.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://www.nhsx.nhs.uk/covid-19-response/data-and-covid-19/national-covid-19-chest-imaging-database-nccid/']}",77824298-ef3b-40f7-a0a4-b6dedb2e7a02,https://web.www.healthdatagateway.org/dataset/77824298-ef3b-40f7-a0a4-b6dedb2e7a02,"{'formatAndStandards': {'language': 'en', 'format': ['DICOM', 'JSON'], 'vocabularyEncodingScheme': 'READ', 'conformsTo': 'DICOM'}, 'access': {'accessRights': ['https://nhsx.github.io/covid-chest-imaging-database/'], 'jurisdiction': 'GB', 'dataProcessor': 'The data processors are: 1) The Scientific Computing team of Royal Surrey County Hospital will be the data collector, 2) Faculty will provide the Platform environment to manage the data storage (on infrastructure owned by NHSX), 3) Third party technology developers will access the data and the Platform to create and validate software tools for the interpretation of chest X-Rays, CTs and MRIs of suspected COVID-19 patients, 4) Third party entities will utilise the data and the Platform to audit technology tools (such as AI products) to ensure they are robust, safe and useful for COVID-19 response', 'accessRequestCost': '0 GBP', 'deliveryLeadTime': '2-4 WEEKS', 'accessService': 'Amazon Web Services - Simple Storage Service (AWS S3)', 'dataController': 'NHS England and Department for Health and Social Care'}, 'usage': {'dataUseRequirements': 'PROJECT SPECIFIC RESTRICTIONS', 'isReferencedBy': ['(Referenced in paper)'], 'resourceCreator': 'NHSX, British Society of Thoracic Imaging (BSTI), Royal Surrey NHS Foundation Trust, Faculty. In addition, we would like to credit all hospital sites that are contributing data to the NCCID. The updated list of sites can be found on our website here: https://nhsx.github.io/covid-chest-imaging-database/', 'dataUseLimitation': 'NO RESTRICTION', 'investigations': ['https://nhsx.github.io/covid-chest-imaging-database/project_summaries.html']}}","{'temporal': {'startDate': '2020-04-01', 'distributionReleaseDate': '2020-05-01', 'endDate': '2020-09-30', 'accrualPeriodicity': 'SEMIWEEKLY', 'timeLag': 'VARIABLE'}, 'origin': {'source': 'OTHER', 'collectionSituation': 'CLINIC', 'purpose': 'STUDY'}}",2020-05-19T16:06:30Z,"[{'observedNode': 'Persons', 'measuredValue': 'https://nhsx.github.io/covid-chest-imaging-database/stats.html', 'disambiguatingDescription': 'Total number of patients with images', 'observationDate': '2021-01-06', 'measuredProperty': 'count'}, {'observedNode': 'Events', 'measuredValue': 'https://nhsx.github.io/covid-chest-imaging-database/stats.html', 'disambiguatingDescription': 'Total number of image studies', 'observationDate': '2021-01-06', 'measuredProperty': 'count'}]",3.0.0,"{'derivation': ['No Derivations'], 'qualifiedRelation': ['ISARIC'], 'tools': ['https://nhsx.github.io/covid-chest-imaging-database/resources.html']}",2021-01-26T11:29:40Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 2, 'structuralMetadata.tableName': 2, 'structuralMetadata.tableDescription': 2, 'structuralMetadata.dataElementsCount': 67, 'structuralMetadata.columnName': 67, 'structuralMetadata.columnDescription': 67, 'structuralMetadata.dataType': 67, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '7b9a43ce-a981-4ba3-ae62-614955d5cc6d', 'description': 'Spreadsheet of clinical data for negative COVID-19 patients to support chest images', 'name': 'Clinical Data - Negative', 'dataElementsCount': 3, 'dataElements': '5cd197af-b5d3-4e78-8281-529f62165db2, 883ed63a-d2b7-47aa-bcec-ba1d4bf5ce9c, 909c24b7-5a1f-4147-a4ab-e9bcc33df272'}, {'id': '0d938d50-5be3-4672-8b60-97c723a00dd0', 'description': 'Spreadsheet of clinical data for positive COVID-19 patients to support chest images', 'name': 'Clinical Data - Positive', 'dataElementsCount': 64, 'dataElements': '0bca8acc-66f0-41c4-b50d-806abc4e3d9e, 9a3ecdd4-8f8c-480e-936e-7d239cd54cfc, db6654ca-9904-4932-8e80-82c56d0b3489, 38fed56d-b6b1-4014-acdb-72dd11b192f7, 257fa06c-510e-495e-82f7-51716a433a70, 95bf2ebf-a2c3-47b1-ab56-4856a7f91164, afdcd180-8abe-4074-a5a6-15ca889c6603, f7c1d435-bc3a-4f14-bb71-5f01b5fa353a, cd9c2ddf-ef3e-4428-8f1f-62f409a759b9, dc8968d1-8c28-4e55-8d41-34cccec09919, 92b22f2c-1075-425d-916f-1b057b918176, f6565650-f6ea-47fb-8792-c4a8a46fc7ee, 374a9c8e-8884-4fc4-bfd9-11e842e19cba, d590d126-7837-4e9f-8f43-10246ca6668d, 53e18f89-c1f1-48e8-9cac-c03cacd3ddf6, 21c8bd76-b2f1-46f7-8002-682f94ed2605, 2fa8866f-a65a-4619-8769-817eeea85fd0, 83118b12-82db-4f9e-9e4b-9c6583ac9966, 7b4d4cd2-b5d0-4a79-97b1-dcddd5c870e4, d01e3ad3-35b4-4624-9844-69ab748c6680, f27a2495-e6c9-4082-bc45-e0e0ac94ddc8, e1715cce-4437-4406-b7a4-c2b3a464a143, 1d013358-a62f-4d09-8314-7f38429baf49, 4449fb7e-4e7c-4af7-bdf8-b5d12908798b, 866dd09b-b0e0-41c3-90f0-307b8267310a, b4d49df8-65ea-4299-ae0d-30ccee4bc01f, 1ebcbe7e-081e-4158-857d-3a01cad03c7b, 1fa604fa-9949-46ab-b2d1-2014e8e3018a, 9dadac87-32ae-4f39-979b-e473d008ab71, 10c6b1db-2b95-427c-ba73-e584a378f7b4, 9705ad55-f858-4e77-9f7e-2600146d18a2, 90fa14cc-6e3c-4153-82d1-21d6b6a16deb, 9352e415-7c6d-40df-9018-4641d6477b23, 84ba5dd8-2681-4915-bca7-11605cc0ab0f, b949b8a1-5618-47d5-abe3-3ac1b515e3b8, 6670ec0c-6cbe-4694-a530-10b7b9d82d64, a7661830-f769-4510-91d0-4c39f61cecc5, 6de040c6-a232-4d5c-83b3-f4ae9a8999aa, 9140a495-98e2-4b52-a6c9-8aa5f9b7a34a, 3447e0a2-2e5e-4c14-80b8-aca546ed08b9, 41e5f818-4290-4361-9007-d8fb8898d642, 22b00138-fdf8-4ba7-8854-db9807ced8b1, 9866966c-676c-48e3-b6b0-4a31c877b8fb, 4f78336c-6b5b-430e-85b0-591ecb755844, cde48f36-028e-402f-aa16-a1aa56ff6c0c, c03eec32-8854-47a5-9286-ef7a7bd73d20, f20b1d33-41ae-4ab7-8cad-01d61f5e1f5a, e0c522b9-92f9-4cd6-bc60-d228b611cbee, 87f535d1-1773-4f1c-ba69-f3cd1b32e984, dd2a7432-e76d-46e3-b23a-29915ab2a74b, 632bd7a9-59db-4fc7-bf90-9d40b7491c6c, e549801a-9afc-4340-8332-c6f7a848b799, 708c9dc9-4866-4fd3-b977-1ff0353ef376, 14ccbae3-5cf7-4e1c-af7c-fd74927c19ab, 700b40b8-1722-4bb7-87dd-316f4a418d36, d9c72d27-c0f5-4af1-8231-fa6bf89b0c51, aacccfdf-d04e-433e-ac93-3d9009519d57, 46e8f133-ce0b-439a-93dc-ba47f438447f, 5f89a34b-3719-4a23-9ab8-df12a5f0de0c, acfd31b8-b38b-4df1-9b78-ca7906e859f5, e6845cb2-ea86-4398-a13e-ff670928cceb, 0f297a98-ae22-4a7e-b881-62abfc07cfb4, e8259556-855c-4714-b1d1-498f696bbe87, 977a8346-c9a1-4f25-8d62-0da8258a7158'}]}"
"{'title': 'Leeds Multidisciplinary Research Tissue Bank', 'publisher': {'contactPoint': 'rtb@leeds.ac.uk', 'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY'}, 'abstract': 'Collection of samples and data across the following diseases: Malignant tumour of kidney (disorder).', 'doiName': 'Not Available', 'contactPoint': 'rtb@leeds.ac.uk', 'keywords': ['Malignant tumour of kidney (disorder)', 'Multidisciplinary Research', 'Tissue Bank', 'UKCRC Tissue Directory', 'Leeds']}",7e60a651-b3d6-40ef-93dc-1f87dabee7be,"{'spatial': 'England', 'physicalSampleAvailability': ['PLASMA', 'SERUM', 'TISSUE', 'URINE'], 'typicalAgeRange': '40-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '3997bb79-e9ef-45d8-816d-97b2ce0d46f4', '3.0.0': '7793f54e-73be-4c97-a941-ba105b1b0480', '1.0.0': '40ab367a-99ef-4af3-9575-6b7f1521a5e9', '2.0.0': '8342e05e-cb12-4d29-ae84-b9b8421cb4f8', 'latest': '7793f54e-73be-4c97-a941-ba105b1b0480'}","{'description': ""Background:\nThe Leeds Biobanking and Sample Processing Lab (LBSPL) is based at St James's University Hospital and is an important element in the Leeds Clinical Research Facility (LCRF). LBSPL is dedicated to providing a sample processing service for clinical trials, and for many biobanking activities within the University and Leeds Teaching Hospitals Trust.  These currently include collections of tissue, and fluid samples such as blood and urine obtained from consented patients diagnosed with kidney, bladder, colorectal and ovarian cancer, brain tumours, and patients undergoing renal transplant. These are processed and stored in research tissue banks (Leeds Multidisciplinary RTB and Leeds NIHR Biomarker RTB) and used as a valuable resource for wider research activities.\nThe Leeds Multidisciplinary Research Tissue Bank (RTB) was given favourable ethical opinion by the Leeds (East) Research Ethics Committee on 3rd March 2010 and renewed 5 years later (Current REC ref: 15/YH/0080).  \n\nCurrent situation:\nThe LBSPL provides ongoing sample processing support to a variety of local or commercial clinical trials requiring samples to be collected for PK/PD endpoints or other associated translational studies. The Leeds Multidisciplinary RTB currently holds matched normal and malignant frozen renal tissue samples from ~600 patients with renal cancer, and plasma, serum, buffy coat and urine samples from ~800 renal cancer patients either prior to surgery/treatment or during treatment, for example with sunitinib. In addition, fluid samples have been collected from patients with benign urological conditions, healthy controls, patients prior to and following renal transplant A population-based TMA including tissue from ~300 RCC patients has also been established. From having solely a renal focus, the RTB has expanded to now also include frozen normal tissue samples, and frozen tissue and urine samples from >1,000 patients with bladder cancer, frozen tissue from patients with brain tumours and limited samples from patients with ovarian cancer or colorectal cancer (no new collections ongoing in these areas). The Leeds NIHR BioRTB has closed to recruitment and contains a bank of fluid samples from patients with liver disease, renal cancer and patient undergoing renal transplantation. These were collected as part of a multicentre initiative in the UK, together with associated clinical data, and are intended for use in biomarker validation studies.  \n\nSample processing and clinical data:\nSamples are processed according to the relevant quality controlled Standard Operating Procedures (SOPs) within Good Clinical Practice (GCLP) laboratories. The dedicated sample processing team of laboratory technicians, administrative staff and a Quality Assurance manager works together to ensure that all samples are handled, processed, stored and tracked to the highest standards. The samples are stored accordingly at the correct temperature (e.g. snap frozen tissue in liquid nitrogen, plasma, serum and buffy coats at -80oC). All freezers and liquid nitrogen dewars which hold patient samples are monitored using the Tutela system, a 24/7 web-based alert response temperature monitoring system.\nFull clinical data is being collected using CRFs. Follow-up data and data available later such as pathology results are obtained from the relevant hospital records/databases by trained personnel with appropriate access. We hope to move to more automated data linkage in the future through working with the Leeds Institute of Data Analytics.  \nTo find further information about collaborative access to these RTB samples please e-mail Roz Banks or Jo Brown at rtb@leeds.ac.uk."", 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",7793f54e-73be-4c97-a941-ba105b1b0480,https://web.www.healthdatagateway.org/dataset/7793f54e-73be-4c97-a941-ba105b1b0480,"{'access': {'dataProcessor': 'Not Applicable', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED.', 'accessRequestCost': 'Not specified', 'accessRights': 'Please contact the publisher using Contact Point details provided.', 'jurisdiction': 'GB-ENG', 'dataController': 'University of Leeds'}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '1999-01-01', 'distributionReleaseDate': '2019-01-29'}}",2020-01-13T17:16:29Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T16:06:39Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'UK Longitudinal Linkage Collaboration (UK LLC)', 'abstract': '20+ Longitudinal Population Studies datasets linked to COVID-19 health datasets held in a TRE hosted by the University of Swansea’s UK Secure Research Platform, accessible to approved UK-based researchers for COVID-19 related research for the public good.', 'keywords': ['Covid-19', 'Key Demographics', 'Socio-Economic', 'Physical Measures', 'Mental Health', 'Self-reported disease and medication data', 'Linked NHS Data', 'Geocoding', 'ALSPAC', 'BCS70', 'Born in Bradford', 'ELSA', 'EPIC Norfolk', 'EXCEED', 'FENLAND', 'Generation Scotland ', 'GLAD', 'Millennium Cohort Study', '1958 NCDS', '1946 NSHD', 'Next Steps', 'NICOLA', ' NIHR BIORESOURCE-COPING', 'TRACK-COVID', 'Twins UK', ' Understanding Society ', 'NCS', 'National Core Study'], 'publisher': {'name': 'UK Longitudinal Linkage Collaboration (UK LLC)', 'identifier': '607db9c6e1f9d3704d570d83', 'memberOf': 'OTHER'}, 'contactPoint': 'access@ukllc.ac.uk'}",d858cd90-9a2f-4330-9bbe-46e047a5d0a2,"{'typicalAgeRange': '0-99', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['United Kingdom']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'f93aea28-7592-42c0-a5e7-5802f0d6051f', '1.0.0': '77adbbe0-6cc7-426d-b485-4ac1f05a746b', 'latest': '77adbbe0-6cc7-426d-b485-4ac1f05a746b'}","{'description': 'The UK Longitudinal Linkage Collaboration (UK LLC) has been set up to bring together information from longitudinal study volunteers with their routine records. This is being done in a secure way to help researchers work to improve health and wellbeing throughout and beyond the coronavirus pandemic.\nThe UK Longitudinal Linkage Collaboration (UK LLC) is a new national research resource for COVID-19 research. It’s a new and globally unique Trusted Research Environment (TRE) that offers predictable and efficient access to longitudinal data for researchers and analysts across the UK. Through a single application, the TRE offers pre-pandemic and pandemic data from more than 20 longitudinal population studies linked with health and environmental data.   \n\nThis data is provided by over 200,000 study participants who volunteer to be part of their studies. This work couldn’t be possible without their participation and willingness to offer insights into many aspects of their lives for the benefit of others. The studies retain control of who can access their participants linked data and all permissions set by participants remain in place. \n\nFor more information please visit: www.ukllc.ac.uk', 'isPartOf': 'National Core Studies'}",77adbbe0-6cc7-426d-b485-4ac1f05a746b,https://web.www.healthdatagateway.org/dataset/77adbbe0-6cc7-426d-b485-4ac1f05a746b,"{'access': {'accessRights': ['https://ukllc.ac.uk/apply/'], 'accessService': 'Data are held in a Trusted Research Environment (TRE) – the Secure e-Research Platform (SeRP UK) at Swansea University and accessible to UK based researchers doing COVID-19 related research for the public good. \n\nIn order to access the UK LLC TRE, approved researchers will be issued with a password and a YubiKey, a device for two-factor authentication that generate codes for each login. Access to the data will be limited and controlled. For each project, a project-specific space will be created in the UK LLC TRE, which will be accessible only to the approved researchers named on the approved project. The UK LLC TRE is a Windows 10 remote desktop environment. Each approved user will be given access to a series of project-specific database views. These views enable access to datasets approved as part of the project. You can choose which tools or packages to conduct your analyses. Standard packages available include Python, R(+RStudio), Stata and SPSS. You may request other packages by emailing access@ukllc.ac.uk, but these may be subject to licence provision/fee.\n\nResearchers must be ONS approved researchers, and the project must be approved by the UK LLC Data Access Committee (DAC) and the individual studies DACs to be granted access to the TRE. Researchers’ access to the TRE will be terminated within three working days following either the end date of the project or expiry of their ONS accreditation.', 'jurisdiction': ['GB-GBN'], 'deliveryLeadTime': '1-2 MONTHS', 'dataController': 'University of Bristol, on behalf of UK LLC.', 'dataProcessor': 'Swansea University is a Data Processor who provide data infrastructure and data management services to UK LLC and will maintain the integrity of the TRE, will assist with the data management processing (under UK LLC’s direction) and will conduct the output disclosure assessments (to UK LLC’s specification). The UoS have sub-contracted the Data Linkage functions of the SeRP UK (including all management of participant identifiers) to the Digital Health and Care Wales (DHCW, part of NHS Wales) who, as such, are Data Processors for UK LLC.', 'accessRequestCost': ['There is currently no cost.']}, 'usage': {'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'PUBLICATION REQUIRED', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'resourceCreator': ['UK LLC must be included as a key word in all publications.', 'Must be compliant with UK LLC Publication Checklist, which details specific publishing requirements.', 'Contributions should be acknowledged using icmje.org authorship guidelines.', 'Contributing studies need to be acknowledged using study approved acknowledged text. '], 'dataUseLimitation': ['RESEARCH USE ONLY'], 'investigations': ['https://web.www.healthdatagateway.org/datause/5061665566374101']}, 'formatAndStandards': {'format': ['Text'], 'vocabularyEncodingScheme': ['NHS NATIONAL CODES'], 'language': ['en'], 'conformsTo': ['OTHER']}}","{'origin': {'collectionSituation': ['PRIMARY CARE', 'ACCIDENT AND EMERGENCY', 'OUTPATIENTS', 'IN-PATIENTS', 'PHARMACY', 'OTHER'], 'source': ['EPR', 'ELECTRONIC SURVEY', 'PAPER BASED', 'OTHER'], 'purpose': ['STUDY', 'DISEASE REGISTRY', 'AUDIT', 'ADMINISTRATIVE', 'CARE', 'OTHER']}, 'temporal': {'startDate': '1990-01-01', 'accrualPeriodicity': 'MONTHLY', 'timeLag': 'VARIABLE'}}",2021-03-22T10:33:33Z,"[{'measuredValue': '200000', 'observedNode': 'PERSONS', 'observationDate': '01/01/1990', 'measuredProperty': 'Count'}]",1.0.0,,2022-03-15T11:40:28Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Lifelong Learning Wales Record (LLWR)', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'SAIL', 'identifier': '5f3f98068af2ef61552e1d75'}, 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'abstract': 'Statistics on learners in post-16 education and training, excluding those at schools but including those at Further Education Institutions, other Work-based Learning providers and Community Learning provision collected via the Welsh Government’s Lifelong', 'keywords': ['SAIL', 'Workforce', 'Education', 'Training', 'Learning', 'core-res']}",cba62a8d-5917-4912-ad4d-340472f7b904,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2634895/wales.html'], 'typicalAgeRange': '16-100', 'pathway': 'Pathways pertaining to adult learning', 'followup': 'UNKNOWN'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'e7fc3bb6-446b-4267-b563-bf6f94e8dee2', '2.0.0': '77b48222-3a00-4dcc-b0ef-3f99dfae697e', '0.0.1': 'e7c99216-2d93-4cc5-96e8-36002aac80b1', 'latest': '77b48222-3a00-4dcc-b0ef-3f99dfae697e'}","{'description': 'The LLWR contains the following four datasets: the Learner (LN) dataset which includes information about the learner such as name, date of birth, ethnic origin and gender; the Learning Programme (LP) dataset which gives information about the current programme of learning being undertaken by the learner and any characteristics which may change over time; the Learning Activity (LA) dataset which collects data on the individual activities or courses undertaken by the learner on his/her programme of learning; and the Award (AW) dataset, which provides information on the awards for which the learner is entered and those achieved. From 1 August 2017, two new datasets will be added to collect Programme and Activity data directly from the National Centre for Learning Welsh. These new datasets relate specifically to the delivery of Welsh for Adults provision and will be collated and submitted centrally by the National Centre for Learning Welsh.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/'], 'isPartOf': 'NOT APPLICABLE'}",77b48222-3a00-4dcc-b0ef-3f99dfae697e,https://web.www.healthdatagateway.org/dataset/77b48222-3a00-4dcc-b0ef-3f99dfae697e,"{'access': {'accessRights': ['https://saildatabank.com/application-process/'], 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'dataProcessor': 'SAIL Databank', 'deliveryLeadTime': '2-6 MONTHS', 'dataController': 'SAIL Databank', 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'jurisdiction': ['GB-WLS']}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'format': ['text']}, 'usage': {'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS']}}","{'temporal': {'distributionReleaseDate': '2020-01-08', 'startDate': '2017-04-02', 'accrualPeriodicity': 'ANNUAL', 'endDate': '2020-01-08', 'timeLag': '1-2 MONTHS'}, 'origin': {'collectionSituation': ['OTHER'], 'purpose': ['ADMINISTRATIVE'], 'source': ['OTHER']}}",2020-10-29T09:14:49Z,"[{'observedNode': 'PERSONS', 'measuredValue': '873267', 'observationDate': '29/09/2021', 'measuredProperty': 'Count'}]",2.0.0,"{'qualifiedRelation': ['Yes. To any SAIL dataset & reference data.'], 'derivation': ['Not Available'], 'tools': ['https://conceptlibrary.saildatabank.com/']}",2021-10-05T16:31:19Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 5, 'structuralMetadata.tableName': 5, 'structuralMetadata.tableDescription': 2, 'structuralMetadata.dataElementsCount': 183, 'structuralMetadata.columnName': 183, 'structuralMetadata.columnDescription': 183, 'structuralMetadata.dataType': 183, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'ebbe2467-3621-4a6c-badb-0aed30899383', 'name': 'LEARNER', 'dataElementsCount': 13, 'dataElements': '50056250-7fe9-4ff3-9f34-dca3ec98285f, fa746aa6-51d1-4af0-bcaa-d0124925a568, 84610a18-cced-4157-8204-b6b4140202d8, f9383960-63b6-473d-ad90-2bca1b636e56, 203d28c4-b16e-4571-ba92-29e536574873, ef89fd03-f7b2-496a-8550-2177a653c274, 49672493-b349-4f0e-be1c-5a62eb2f05da, 07dc6e9c-a9ec-4d22-8cbd-7002f1550900, f695ca56-71a7-4901-89da-e5ff09fcbdd0, 7332c9be-8bde-4f97-a21d-374fecaea613, 69e5f97d-03c9-46ef-bb2a-265c8fb6211f, 9b64ac39-818e-4e2f-8695-8632f9360b2c, bf9f7d2b-81ac-460b-bf19-9171a59160dc'}, {'id': '5232b5c6-f53b-4f7b-8174-d7dabe04f938', 'description': 'This table acts as a bridge between LLWR data categories and provides other linking information to data in SAIL. 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"{'title': '1958 National Child Development Study - Pain data', 'publisher': {'name': 'ALLEVIATE', 'identifier': '613b2174b8b58d157f531e7a', 'memberOf': 'HUBS'}, 'keywords': ['Alleviate', 'Pain', 'Pain Hub'], 'contactPoint': 't.g.hales@dundee.ac.uk', 'doiName': 'http://doi.org/10.5255/UKDA-SN-8731-1', 'abstract': 'This collection specifically relates to a short pain survey (self-completion booklet) completed by NCDS participants in 2002-3.'}",33092502-12ef-4bc0-8400-5f63915cbf33,"{'pathway': 'Data are not associated with a patient pathway.', 'spatial': ['https://www.geonames.org/2648147/great-britain.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '31-59', 'followup': '> 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '77dc7118-443c-4c85-a18c-e7bbe01e9e7a'},"{'description': 'The 1958 National Child Development Study (NCDS) is following the lives of an initial 17,415 people born in England, Scotland and Wales in a single week of 1958. 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No other information will be retained by Thriva. The Department for Health and Social Care are the Data Controller for the data that will be retained by Thriva.', 'accessRequestCost': ['https://beta.ukdataservice.ac.uk/datacatalogue/studies/study?id=8731#!/access-data'], 'accessService': 'The Data Collection is available to users registered with the UK Data Service.\n\nCommercial use of the data requires approval from the data owner or their nominee. The UK Data Service will contact you.', 'dataProcessor': 'George Ploubidis. Professor of Population Health and Statistics at the UCL Social Research Institute.', 'accessRights': ['https://beta.ukdataservice.ac.uk/datacatalogue/studies/study?id=8731#!/access-data'], 'deliveryLeadTime': 'LESS 1 WEEK'}, 'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['NHS NATIONAL CODES', 'OTHER', 'LOCAL'], 'format': ['Text'], 'conformsTo': ['NHS DATA DICTIONARY']}, 'usage': {'resourceCreator': ['UK Data Services'], 'investigations': ['https://www.ukri.org/news/new-data-hub-and-research-into-chronic-pain/'], 'isReferencedBy': ['http://repec.ioe.ac.uk/REPEc/pdf/qsswp2128.pdf'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}}","{'temporal': {'startDate': '2002-09-01', 'timeLag': '1-2 MONTHS', 'distributionReleaseDate': '2004-03-31', 'endDate': '2004-03-31', 'accrualPeriodicity': 'STATIC'}, 'origin': {'source': ['PAPER BASED'], 'purpose': ['STUDY'], 'collectionSituation': ['COMMUNITY', 'HOME']}}",2021-09-23T16:36:49Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '8565', 'disambiguatingDescription': 'Self-reported pain questionnaire', 'observationDate': '01/09/2002', 'measuredProperty': 'Count'}]",1.0.0,"{'qualifiedRelation': ['https://cls.ucl.ac.uk/data_documentation/?studies%5B%5D=age-42-sweep&studies%5B%5D=substudies&studies%5B%5D=ncds-birth-sweep&studies%5B%5D=age-7-sweep&studies%5B%5D=age-11-sweep&studies%5B%5D=age-16-sweep&studies%5B%5D=age-23-sweep&studies%5B%5D=age-33-sweep&studies%5B%5D=age-44-biomedical-sweep&studies%5B%5D=age-46-sweep&studies%5B%5D=age-50-sweep&studies%5B%5D=age-55-sweep&studies%5B%5D=age-62-sweep&s=&filter=1'], 'derivation': ['Not Known']}",2021-09-23T16:36:49Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 41, 'structuralMetadata.columnName': 41, 'structuralMetadata.columnDescription': 41, 'structuralMetadata.dataType': 41, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '07d7c9ec-7605-4547-bc75-dc438c3fa3f7', 'name': 'NCDS Biomedical Paper Self-Completion 1 (2002) Dataset (85 of 172)', 'dataElementsCount': 41, 'dataElements': '9448a41a-cedc-42b5-87f7-d3fc3a7cdfc7, d8c2a17a-6de5-43bd-82d3-00848cfa0734, e7dfa291-1e1e-42e3-a703-364bba905beb, 6e7e7a1a-4bc4-4770-a90c-f6cc8a61e622, 99c62252-5b1b-430f-9942-2bb1a20fdbcb, 784ee20d-e948-4e84-8121-3781c5a31b64, ea199857-d997-4096-ae3f-7ea1fb28d889, 5a2558ce-01ef-4cb5-821b-1da81fe5a80d, d4211a06-b844-4ab3-a967-64feab75051b, 3830aa8c-71db-43aa-8653-3ae048ce5443, 83923d94-12e5-48b5-8b27-3816ac0405f0, 66f2c543-ebd6-4261-8ebb-2bf5f236824b, 50f48122-9aa6-4d7a-82fa-58d905015e19, da5edbf1-f086-4730-ab62-b9c214c930dd, cf7830f8-8cf2-442d-ad25-1a4446958526, af80483f-0a9c-437b-9ce7-e99e62da6a79, 86f5c556-caab-439a-b25c-7ff81c991106, 782280d5-442d-46f9-9a64-8ba1f679469b, 182ee096-b214-4b95-a15c-847a05f90fbf, f2b9d7a1-794a-48c2-a86d-c65165bb8db1, 2db39768-4047-42c1-9311-a545206c5bd8, 788f5eea-cc37-4aa4-aa30-22235fcf3f4a, 621671e5-e5f1-4d19-8a1e-0ef5f4f021ca, 5213d1bd-bec6-4d12-9782-ce46323de66c, 60bb11c8-3c83-4c7d-95c7-37dde16ec034, 7558297c-00a1-4873-bd71-b2f6e165389f, 50c62d82-86a6-40da-8d13-ccb4343851c2, 2398b213-1eec-4b80-993f-4d18c2b1abcd, 099862be-6d05-470d-8971-fd95ebf9b18c, 5a80b868-00d8-4dde-a266-9eebe192f0ea, 2fccad78-3297-493f-8755-f6461ec57f4b, 07f78b62-be9b-40f2-888c-54b6378181f6, a80e7e94-2238-4894-a475-f4f00a102d68, 21fee143-7836-41bf-b48e-7283f4892a7c, d77dd0cc-4ede-42ff-aca0-0da16e411a4c, 588fb6bb-002b-443f-9bd6-4f0611dc6bfd, 4d71d436-92f9-422f-82ba-84e6838e6305, a1ceed4a-72f4-44ce-9858-6fd4ef46c5b3, 500dd166-7079-4bf1-9144-88798ba58852, 253b38c0-defb-450f-bbc3-7083a149f08e, 0af8f7ca-fadd-44da-ad21-edcbdb36e01c'}]}"
"{'title': 'Maternity Indicators Dataset (MIDS)', 'abstract': 'The Maternity Indicators Data Set captures data relating to the woman at initial assessment and to mother and baby (or babies) for all births. This relates to initial assessment and birth activity undertaken in Wales only.', 'keywords': ['Maternity', 'Indicators', 'SAIL', 'NCS', 'National Core Study', 'COVID-19', 'core', 'MIDS'], 'publisher': {'memberOf': 'ALLIANCE', 'name': 'SAIL', 'identifier': '5f3f98068af2ef61552e1d75'}, 'contactPoint': 'SAILDatabank@swansea.ac.uk'}",a0c27454-8cbe-418f-bdae-a85d5e92e9d4,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'All maternity pathways', 'spatial': ['https://www.geonames.org/2634895/wales.html'], 'typicalAgeRange': '0-150', 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'7.0.0': 'bc5686de-8577-4cc4-9d90-6c75e5131740', '9.0.0': '77f4f3ec-31aa-4eb9-8896-a063ce831c9b', '8.0.0': '87860b0b-fa39-4158-9a80-177703f4b0df', 'latest': '77f4f3ec-31aa-4eb9-8896-a063ce831c9b'}","{'description': 'The Maternity Indicators Data Set captures data relating to the woman at initial assessment and to mother and baby (or babies) for all births. 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This is further detailed in the technical specification (see ‘return submission details’). \n\nWhere the initial assessment and birth events take place in different Health Boards, data will be linked nationally by the NHS Wales Informatics Service.\n\nVelindre NHS Trust are excluded from this requirement, as they do not provide any maternity services.\n\nMonthly activity data must include only initial assessment and birth activity that took place in the previous month.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/']}",77f4f3ec-31aa-4eb9-8896-a063ce831c9b,https://web.www.healthdatagateway.org/dataset/77f4f3ec-31aa-4eb9-8896-a063ce831c9b,"{'access': {'deliveryLeadTime': '2-6 MONTHS', 'accessRights': ['https://saildatabank.com/application-process/'], 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'jurisdiction': ['GB-WLS'], 'dataController': 'SAIL Databank', 'dataProcessor': 'SAIL Databank', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.'}, 'formatAndStandards': {'format': ['SQL database table'], 'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'language': ['en']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['DHCW'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'isReferencedBy': ['https://popdatasci.swan.ac.uk/wp-content/uploads/2020/06/nfjo_1000-mothers_report_final_20200603_english.pdf']}}","{'origin': {'source': ['EPR'], 'purpose': ['CARE'], 'collectionSituation': ['CLINIC', 'OUTPATIENTS', 'IN-PATIENTS']}, 'temporal': {'distributionReleaseDate': '2022-01-01', 'timeLag': '1-2 MONTHS', 'endDate': '2021-12-06', 'startDate': '2014-04-01', 'accrualPeriodicity': 'QUARTERLY'}}",2021-09-13T14:56:17Z,"[{'observedNode': 'EVENTS', 'measuredValue': '3000000', 'observationDate': '01/09/2021', 'measuredProperty': 'Count'}]",9.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Yes. 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"{'title': 'Systemic Anti-Cancer Treatment (SACT) data for CPRD Aurum', 'publisher': {'name': 'CPRD', 'identifier': '607db9c2e1f9d3704d570cee', 'memberOf': 'ALLIANCE'}, 'doiName': 'https://doi.org/10.48329/ngt7-ex36', 'abstract': 'CPRD Aurum linked Systemic Anti-Cancer Treatment (SACT) data contain chemotherapy treatment details, including regime and outcomes, for solid tumour and haematological malignancies treated in England.', 'keywords': ['Cancer Treatment', 'SACT'], 'contactPoint': 'enquiries@cprd.com'}",f8af632e-442d-4931-a370-b7fa2fa4b896,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': '1 - 10 YEARS', 'typicalAgeRange': '0-115', 'spatial': ['https://www.geonames.org/6269131/england.html'], 'pathway': 'Cancer registration data are collected from a range of health care provider systems and other services.'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'5.0.0': '4353b5fa-b3aa-4786-9e7f-4fb2273f5d3e', '6.0.0': '783184b6-e8f4-4768-a3eb-442a7f044aaa', '4.0.0': 'b4f6a5c2-e652-4972-9d06-510e9a469dfe', '2.0.0': 'f0173a9b-af8c-401a-be98-69cad27ebbad', '3.0.0': '822a88fd-7068-4bad-8e8c-ebace2f0ce3b', '1.0.0': '38f5bd7f-a4ac-4230-8020-a106ceb254c0', '0.0.1': '17ba15a3-e807-4348-8477-dc485d22dc33', 'latest': '783184b6-e8f4-4768-a3eb-442a7f044aaa'}","{'description': 'CPRD Aurum linked Systemic Anti-Cancer Treatment (SACT) data cover chemotherapy treatment for all solid tumour and haematological malignancies, including those in clinical trials. Information is included about programme and regime of treatment, and the outcome for each treatment.', 'isPartOf': 'CPRD Aurum', 'associatedMedia': ['https://www.cprd.com/linked-data']}",783184b6-e8f4-4768-a3eb-442a7f044aaa,https://web.www.healthdatagateway.org/dataset/783184b6-e8f4-4768-a3eb-442a7f044aaa,"{'usage': {'investigations': ['https://www.cprd.com/protocol-list'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'NO LINKAGE', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'isReferencedBy': ['Bright CJ,Lawton S,Benson S,Bomb M,Dodwell D,Henson KE,McPhail S,Miller L,Rashbass J,Turnbull A,Smittenaar R. Data Resource Profile: The Systemic Anti-Cancer Therapy (SACT) Dataset. International Journal of Epidemiology,dyz137.'], 'resourceCreator': ['Public Health England (PHE) via the National Cancer Registration and Analysis Service (NCRAS)'], 'dataUseRequirements': ['GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION']}, 'formatAndStandards': {'conformsTo': ['NHS DATA DICTIONARY'], 'format': ['Tab delimited text'], 'vocabularyEncodingScheme': ['ICD10', 'ICDO3', 'OPCS4'], 'language': ['en']}, 'access': {'dataController': 'Clinical Practice Research Datalink (CPRD)', 'accessRights': ['HTTPS://CPRD.COM/DATA-ACCESS'], 'jurisdiction': ['GB-ENG'], 'accessService': 'Access to CPRD data, including UK Primary Care Data, and linked data such as Hospital Episode Statistics, is subject to protocol approval via CPRD’s Research Data Governance (RDG) Process. 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"{'title': 'UCL / UCLH Biobank for Studying Health and Disease', 'publisher': {'contactPoint': 'ci.bbfhad-admin@ucl.ac.uk', 'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE'}, 'doiName': 'Not Available', 'keywords': ['UCLH', 'UCL', 'UKCRC Tissue Directory', 'Malignant tumour of breast', 'Biobank'], 'contactPoint': 'ci.bbfhad-admin@ucl.ac.uk', 'abstract': 'Collection of samples and data across the following diseases: Malignant tumour of breast'}",ce533c67-5565-4010-bedf-dca3863a9084,"{'spatial': 'England', 'typicalAgeRange': '40-150', 'physicalSampleAvailability': ['TISSUE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '991b0f58-f893-4459-8870-6fc84c1d35af', '3.0.0': '7862c1c2-d4d6-4b3c-aea1-1f15a5b3b5ea', '2.0.0': 'f9a712ae-9d41-41a6-b2ca-3127441b03ac', '1.0.0': '8d9ddc34-560b-4396-a265-1823a055f211', 'latest': '7862c1c2-d4d6-4b3c-aea1-1f15a5b3b5ea'}","{'description': 'The Biobank stores normal and pathological specimens, surplus to diagnostic requirements, from relevant tissues and bodily fluids. Stored tissues include; snap-frozen or cryopreserved tissue, formalin-fixed tissue, paraffin-embedded tissues, and slides prepared for histological examination. Tissues include resection specimens obtained surgically or by needle core biopsy. Bodily fluids include; whole blood, serum, plasma, urine, cerebrospinal fluid, milk, saliva and buccal smears and cytological specimens such as sputum and cervical smears. Fine needle aspirates obtained from tissues and bodily cavities (e.g. pleura and peritoneum) are also collected. Where appropriate the Biobank also stores separated cells, protein, DNA and RNA isolated from collected tissues and bodily fluids described above. Some of the tissue and aspirated samples are stored as part of the diagnostic archive.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",7862c1c2-d4d6-4b3c-aea1-1f15a5b3b5ea,https://web.www.healthdatagateway.org/dataset/7862c1c2-d4d6-4b3c-aea1-1f15a5b3b5ea,"{'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}, 'access': {'accessRequestCost': 'Not specified', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'jurisdiction': 'GB-ENG', 'dataController': 'University College London', 'dataProcessor': 'Not Applicable', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED'}, 'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}}","{'temporal': {'startDate': '1999-01-01', 'accrualPeriodicity': 'IN PROGRESS', 'distributionReleaseDate': '2018-05-25'}}",2020-01-13T17:14:17Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:16:19Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'COVID-19 Symptom Tracker Dataset', 'doiName': 'In Progress', 'publisher': {'name': 'SAIL', 'contactPoint': 'saildatabank@swansea.ac.uk', 'memberOf': 'ALLIANCE'}, 'abstract': ""The COVID Symptom Tracker was designed by doctors and scientists at King's College London (KCL), Guys and St Thomas’ Hospital working in partnership with ZOE Global. Led by Dr Tim Spector, professor of genetic epidemiology at KCL and director of TwinsUK."", 'contactPoint': 'saildatabank@swansea.ac.uk', 'keywords': ['COVID-19', 'TRACKER', 'SAIL', 'COVID', 'MOBILE APP', 'CORONAVIRUS', 'SYMPTOM', 'NCS', 'National Core Study']}",594cfe55-96e3-45ff-874c-2c0006eeb881,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': '0 - 6 MONTHS', 'pathway': 'Covid-19', 'spatial': 'Great Britain', 'typicalAgeRange': '15-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'13.0.0': 'fddcb382-3051-4394-8436-b92295f14259', '19.0.0': '78ce070c-84db-4676-81c5-0c672f4e12e3', '14.0.0': 'cb29d860-da77-45a0-80e4-913d445f5a50', '2.0.0': '4e0008a5-c930-494a-bdcc-f88e30fc36d2', '6.0.0': '9c5a8ae6-fbc2-43f6-b4ae-4dd2b2a617b5', '5.0.0': 'c1231f9b-b617-4ad8-80ad-f84d26f7964a', '3.0.0': '2197a025-e722-4b21-9208-9e4c8e5d3b6a', '9.0.0': '9dee28f9-44e7-4690-a091-c2e493d9d8ed', '12.0.0': 'c42ceb2a-c9c2-491d-9f34-3da55413225f', '11.0.0': 'e525b056-1bac-46ee-838c-6bef8a8815cb', '1.0.0': '9b604483-9cdc-41b2-b82c-14ee3dd705f6', '10.0.0': '71e22289-32df-43dc-a20f-756f2c814c36', '8.0.0': '5dc5998d-efa4-490a-9a46-feb6eb27dabe', '7.0.0': '6846f613-e2e3-4dac-bb24-c867033db4ec', '4.0.0': '06f8c66d-4e91-44dc-a109-1df729b72b61', '16.0.0': '40b3ddd4-e932-4848-ba48-5cb4593baebc', '15.0.0': 'd4614d0c-8e38-413c-83c8-7b5d1cc30ee0', '18.0.0': '6325125b-6157-4c20-8bc0-54e2c45cf19b', '17.0.0': 'ff88d11a-d29b-4d94-92f2-2bbf7dd7d03a', 'latest': '78ce070c-84db-4676-81c5-0c672f4e12e3'}","{'description': ""The COVID Symptom Tracker (https://covid.joinzoe.com/) mobile application was designed by doctors and scientists at King's College London, Guys and St Thomas’ Hospitals working in partnership with ZOE Global Ltd – a health science company.\n\nThis research is led by Dr Tim Spector, professor of genetic epidemiology at King’s College London and director of TwinsUK a scientific study of 15,000 identical and non-identical twins, which has been running for nearly three decades.\n\nThe dataset schema includes:\n\nDemographic Information (Year of Birth, Gender, Height, Weight, Postcode)\nHealth Screening Questions (Activity, Heart Disease, Diabetes, Lung Disease, Smoking Status, Kidney Disease, Chemotherapy, Immunosuppressants, Corticosteroids, Blood Pressure Medications, Previous COVID, COVID Symptoms, Needs Help, Housebound Problems, Help Availability, Mobility Aid)\nCOVID Testing Conducted\nHow You Feel?\nSymptom Description\nLocation Information (Home, Hospital, Back From Hospital)\nTreatment Received\nThe data is hosted within the SAIL Databank, a trusted research environment facilitating remote access to health, social care, and administrative data for various national organisations.\n\nThe process for requesting access to the data is dependent on your use case. SAIL is currently expediting all requests that feed directly into the response to the COVID-19 national emergency, and therefore requests from NHS or Government institutions, or organisations working alongside such care providers and policymakers to feed intelligence directly back into the national response, are being expedited with a ~48-hour governance turnaround for such applications once made. Please make enquiries using the link at the bottom of the page which will go the SAIL Databank team, or to Chris Orton at c.orton@swansea.ac.uk\n\nSAIL is welcoming requests from other organisations and for longer-term academic study on the dataset, but please note if this is not directly relevant to the emergency research being carried out which directly interfaces with national responding agencies, there may be an access delay whilst priority use cases are serviced."", 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://covid.joinzoe.com/data'], 'isPartOf': 'NOT APPLICABLE'}",78ce070c-84db-4676-81c5-0c672f4e12e3,https://web.www.healthdatagateway.org/dataset/78ce070c-84db-4676-81c5-0c672f4e12e3,"{'usage': {'dataUseLimitation': 'GENERAL RESEARCH USE', 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'resourceCreator': ""The COVID symptom tracker was created by doctors and scientists at King's College London, Guys and St Thomas’ Hospitals working in partnership with ZOE Global Ltd – a health science company."", 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'isReferencedBy': ['D. 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"{'title': 'SACT - systemic anticancer treatment  for QResearch', 'contactPoint': 'qresearch@phc.ox.ac.uk', 'publisher': {'name': 'QResearch', 'memberOf': 'ALLIANCE', 'identifier': '61ba059ac688870b12a4e05b'}, 'abstract': 'Systemic Anti-Cancer Treatment (SACT) data contain chemotherapy treatment details, including regime and outcomes, for solid tumour and haematological malignancies treated in England.', 'keywords': ['National Core Study', 'NCS']}",c7219fcb-cf19-474c-bdbf-8d72b84c9f0e,"{'typicalAgeRange': '0-115', 'pathway': 'Cancer registration data are collected from a range of health care provider systems and other services.', 'spatial': ['United Kingdom,England'], 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '5c16508e-f307-4ded-8a23-0fdf533241b2', '2.0.0': '7966a272-a2ba-4763-904b-f7d1e00bcfcd', 'latest': '7966a272-a2ba-4763-904b-f7d1e00bcfcd'}","{'description': 'Linked Systemic Anti-Cancer Treatment (SACT) data covers chemotherapy treatment for all solid tumour and haematological malignancies, including those in clinical trials. Information is included about programme and regime of treatment, and the outcome for each treatment.'}",7966a272-a2ba-4763-904b-f7d1e00bcfcd,https://web.www.healthdatagateway.org/dataset/7966a272-a2ba-4763-904b-f7d1e00bcfcd,"{'formatAndStandards': {'vocabularyEncodingScheme': ['ICD10', 'OPCS4', 'SNOMED CT', 'ICDO3'], 'language': ['en'], 'conformsTo': ['NHS DATA DICTIONARY'], 'format': ['CSV', 'Stata', 'SQL Server Database']}, 'usage': {'investigations': ['https://www.qresearch.org/research/approved-research-programs-and-projects/'], 'dataUseRequirements': ['ETHICS APPROVAL REQUIRED', 'NOT FOR PROFIT USE'], 'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'resourceCreator': ['Public Health England (PHE) via the National Cancer Registration and Analysis Service (NCRAS)']}, 'access': {'jurisdiction': ['GB-ENG'], 'dataProcessor': 'University of Oxford', 'accessService': 'Remote Desktop to dedicated Windows Server.\n\nStandard Server Spec:\n16GB RAM, 4 Logical Xeon Gold Processors, 200 GB HDD\n\nMax available Server Spec:\n512GB RAM, 72 Logical Xeon Gold Processors, 2TB HDD. Tesla V100 GPU', 'accessRights': ['https://www.qresearch.org/information/information-for-researchers/'], 'dataController': 'University of Oxford', 'accessRequestCost': ['https://www.qresearch.org/information/information-for-researchers/'], 'deliveryLeadTime': '1-2 MONTHS'}}","{'temporal': {'startDate': '2018-04-01', 'timeLag': 'MORE 6 MONTHS', 'distributionReleaseDate': '2022-03-17', 'endDate': '2021-03-31', 'accrualPeriodicity': 'ANNUAL'}, 'origin': {'collectionSituation': ['PRIMARY CARE', 'OUTPATIENTS', 'IN-PATIENTS', 'CLINIC'], 'source': ['EPR'], 'purpose': ['CARE', 'DISEASE REGISTRY']}}",2022-03-21T16:30:16Z,"[{'observationDate': '04/02/2022', 'measuredProperty': 'Count', 'measuredValue': '35047612', 'observedNode': 'EVENTS'}]",2.0.0,,2022-06-08T09:51:55Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 26, 'structuralMetadata.columnName': 26, 'structuralMetadata.columnDescription': 26, 'structuralMetadata.dataType': 26, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'b4fa6754-f6be-453c-9e8b-a77f909610c3', 'description': 'systemic anticancer treatment dataset', 'name': 'SACT', 'dataElementsCount': 26, 'dataElements': '07dd78ee-1db6-4e0f-8c2d-50853dd57658, 98f065a2-3079-485b-8795-f755b233ed51, da78e0fe-115e-4d7a-827e-a43c1f946e1a, a12d06bc-8704-444a-8601-0250ee553364, a83f1a85-5ad8-4624-9725-77197073e811, a65ef285-5cdb-4ca0-8f61-2d55468b182e, 82561a4b-4179-4c5a-92f7-5b76e563b0f5, 0d085e3e-8cff-497c-ab19-35d7e55a39c7, cb02dca1-aace-42f5-81e8-7bc88d5ee1b4, 03be10a5-243e-49ec-b59b-0be98ce7061e, a40a82a4-9298-4a57-a2df-7f11bfbac667, 0bcf9f17-f0e1-43d7-9738-fbd8b199c4ad, 1b68b91d-5af4-4a12-a096-3393081015d6, 74323331-b110-4d48-ac42-ed291e5606e6, 54947350-76ab-420f-b879-5810666806cf, 528477e0-024a-44ee-bbed-163efe41e481, 9d3413f3-c1ef-4dac-b238-6a83c87355ea, 8305875e-fc28-4e05-86ef-ddb8b66b9e74, b2612b2c-8887-49c6-b5ed-b50f2719bdea, 7b4a5854-5de2-49f4-8d63-dc3aa95aba41, 8c96a6b7-f5fd-4736-9229-bae49fbd5147, c31cfa19-05ad-40c9-a83a-c8349806f7d5, 519320a8-035e-41d8-a575-7cc4bf2afb08, da184095-d4ab-467b-8877-3b5d4a3180b4, c45a245c-6bac-4c17-894f-3592c9d6a90b, a85fc33d-a6d0-4d8b-8465-9ce7d8a0d506'}]}"
"{'title': 'Synthetic Dataset - Patients at risk of sudden death: hypertrophic cardiomyopathy', 'publisher': {'name': 'PIONEER', 'identifier': '607db9c5e1f9d3704d570d5f', 'memberOf': 'HUB'}, 'keywords': ['synthetic', 'health data', 'hypertrophic cardiomyopathy patients', 'breathlessness', 'chest pain', 'palpitations', 'arrhythmias', 'sudden cardiac death', 'genotype', 'phenotype', 'results of ECG', 'cardiopulmonary exercise test', 'ECHO', 'Left bundle branch block', 'atrial fibrilliation', 'pre-excitation', 'family history', 'smoking', 'BMI', 'exercise', 'cardiovascular magnetic imaging', 'pacemaker', 'defibrillator', 'outcomes', 'demography', 'age', 'ethnicity', 'hospital events', 'care pathways', 'diagnostic delay'], 'abstract': 'Synthetic data replicating 30,000 ethnically diverse hypertrophic cardiomyopathy patients:  This includes clinical and biological phenotyping, co-morbidities, investigations (including ECG, ECHO), any procedures undertaken and outcomes.', 'contactPoint': 'PIONEER@UHB.NHS.UK'}",7b1c1f1a-4fb2-452d-9a3c-7748992b1fa4,"{'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'https://www.geonames.org/2634343/west-midlands.html', 'followup': 'OTHER', 'pathway': 'The West Midlands (WM) has a population of 5.9 million and includes a diverse ethnic, socio-economic mix. There is a higher than average percentage of minority ethnic groups with Birmingham having a population which is more than 40% non-white. WM has a large number of elderly residents but Birmingham is one of the youngest cities in the UK.  There is social deprivation and Birmingham’s population suffers with particularly high rates of illness; including cerebrovascular disease, physical inactivity, obesity, smoking, hypertension, ischaemic heart disease and diabetes.  There are also high levels of rare diseases, especially immunometabolic conditions. This in turn leads to high levels of infections. The patients included in this dataset are representative of this diverse population and also include a wide age range. \n\nUniversity Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services and specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds and 100 ITU beds. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary and secondary care record (Your Care Connected) and a patient portal “My Health”.'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '796d97b4-6f3d-4ee8-8966-9238efdcac2d'},"{'description': 'Background: Well-created synthetic data establishes a governance risk-free environment for health care algorithm development and experimentation. This includes the evaluation of new treatment models, care management systems, clinical decision support, and more. Synthetic data is of particular use in rare diseases, where real data may be in short supply, or to replicate disease in less common patient demographics (such as certain ethnicities or co-morbid combinations).\n\nFamilial hypertrophic cardiomyopathy (HCM) is a rare genetic condition characterized by thickening (hypertrophy) of the cardiac muscle, usually of the interventricular septum. Many affected individuals have no symptoms. Other people may experience chest pain; breathlessness and fainting. Arrhythmias can be life threatening and HCM is associated with an increased risk of sudden death. Some affected individuals develop potentially fatal heart failure, which may require heart transplantation. Approximately 130,000 people have HCM in the UK, but there is a significant burden of undiagnosed disease and diagnostic delay.  Inheritance is autosomal dominant, with the most commonly involved genes being MYH7, MYBPC3, TNNT2, and TNNI3. \n\nPIONEER geography: The West Midlands (WM) has a population of 5.9 million and includes a diverse ethnic and socio-economic mix. There is a higher than average percentage of minority ethnic groups and rare diseases including HCM, with a regional specialist HCM service.\n\nElectronic Health Records (EHR): University Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services and specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds and 100 ITU beds. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary and secondary care record (Your Care Connected) and a patient portal “My Health”.  \n\nScope: This synthetic dataset reflects the diversity of the WM and the granularity of the HCM service. It replicates longitudinal data including the care journey prior to diagnosis.  It includes ECHO provocation, CPEX, ECG including evidence of pre-excitation, as well as symptoms, family history, genetic testing and HCM phenotype. Outcomes and procedures are included.   \n\nAvailable supplementary data: Synthetic Ambulance data. Real HCM patient data, including from secondary and ambulance settings – forming a synthetic algorithm “build” and real “test” datasets.\n\nAvailable supplementary support: Analytics, Model build, validation and refinement; A.I.; Data partner support for ETL (extract, transform and load) process, Clinical expertise, Patient and end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.', 'isPartOf': 'NOT APPLICABLE'}",796d97b4-6f3d-4ee8-8966-9238efdcac2d,https://web.www.healthdatagateway.org/dataset/796d97b4-6f3d-4ee8-8966-9238efdcac2d,"{'access': {'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'deliveryLeadTime': '1-2 MONTHS', 'dataProcessor': 'NOT APPLICABLE', 'jurisdiction': ['GB-GB'], 'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'format': ['csv'], 'language': ['en'], 'conformsTo': ['LOCAL']}, 'usage': {'resourceCreator': ['This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS']}}","{'origin': {'collectionSituation': ['IN-PATIENTS'], 'purpose': ['OTHER'], 'source': ['MACHINE GENERATED']}, 'temporal': {'accrualPeriodicity': 'STATIC', 'distributionReleaseDate': '2021-02-22', 'startDate': 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"{'title': 'Central England Haemato-oncology and oncology Research Biobank (CEHRB)', 'publisher': {'name': 'TISSUE DIRECTORY', 'contactPoint': 'bwc.cehrb_@nhs.net', 'memberOf': 'ALLIANCE'}, 'keywords': ['BioBank', 'UKCRC Tissue Directory', 'CEHRB', 'Oncology', 'Leukaemia', 'disease', 'Haemato-Oncology', 'Central England'], 'doiName': 'Not Available', 'contactPoint': 'bwc.cehrb_@nhs.net', 'abstract': 'Collection of samples and data across the following diseases: Leukaemia, disease'}",314953f6-58e7-49c0-adfd-c60e623eba74,"{'physicalSampleAvailability': ['BONE MARROW', 'DNA', 'PERIPHERAL BLOOD CELLS', 'RNA'], 'spatial': 'England', 'typicalAgeRange': 'Not Known'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '415deac2-1825-4ef8-babf-95ac881745ca', '3.0.0': '79b02690-798b-462d-9ced-f53c9e39d624', '1.0.0': 'c090b9f4-2084-4d8c-9d93-53dd16d88314', '2.0.0': 'a7209348-c011-44d0-9c4f-35a2014c2542', 'latest': '79b02690-798b-462d-9ced-f53c9e39d624'}","{'description': 'The Central England Haemato-Oncology and oncology Research BioBank (CEHRB) predominantly stores excess material from haemato-oncology and oncology samples referred for diagnostic testing and disease monitoring at the West Midlands Regional Genetics Laboratory (WMRGL). Haemato-oncology samples are stored at presentation and throughout the disease course, including at remission and relapse. In addition CEHRB stores haemato-oncology and oncology samples which are specifically taken for the biobank, usually in response to a specific project.\nCEHRB is housed within the WMRGL which is accredited by United Kingdom Accreditation Services to ISO15189:2012. The WMRGL serves a population of about 6 million and is the largest UK NHS genetics lab. Due to the large patient population CEHRB is able to collate sufficient research material from all classifications of neoplastic haematological disorders including those that are rare.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",79b02690-798b-462d-9ced-f53c9e39d624,https://web.www.healthdatagateway.org/dataset/79b02690-798b-462d-9ced-f53c9e39d624,"{'access': {'dataProcessor': 'Not Applicable', 'accessRequestCost': 'Not specified', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'jurisdiction': 'GB-ENG', 'dataController': ""Birmingham Women's & Children NHS Foundation Trust"", 'accessRights': 'Please contact the publisher using Contact Point details provided'}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}}","{'temporal': {'distributionReleaseDate': '2019-07-24', 'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2009-01-01'}}",2020-01-13T17:04:34Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T15:57:47Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'SCI Diabetes', 'contactPoint': 'hicsupport@dundee.ac.uk', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE', 'identifier': '607db9c4e1f9d3704d570d1f'}, 'abstract': 'SCI-Diabetes provides a fully integrated shared electronic patient record to support treatment of NHSScotland patients with Diabetes', 'keywords': ['SCIDiabetes', 'Eye', 'Amputation', 'smoking', 'Weight', 'Tayside', 'Fife', 'HIC', 'SCOTLAND']}",e179bd5b-0153-46d4-9e1b-4febd3f1153f,"{'followup': 'UNKNOWN', 'typicalAgeRange': '0-150', 'pathway': 'Secondary care records for Tayside and Fife', 'spatial': ['United Kingdom,Scotland'], 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '79dfcffd-3f50-4fa2-bd3a-8ef1464e7589'},"{'description': 'SCI Diabetes brings together the functionality of SCI-DC Network and SCI-DC Clinical and also includes specialty modules for Paediatrics, Podiatry, Diabetes Specialist Nursing and Dietetics\nSCI-Diabetes is developed, maintained and supported by the SCI-DC Development Team based in the Clinical Technology Centre, Ninewells Hospital, Tayside.', 'isPartOf': 'University of Dundee Health Informatics Centre'}",79dfcffd-3f50-4fa2-bd3a-8ef1464e7589,https://web.www.healthdatagateway.org/dataset/79dfcffd-3f50-4fa2-bd3a-8ef1464e7589,"{'usage': {'dataUseRequirements': ['DISCLOSURE CONTROL', 'ETHICS APPROVAL REQUIRED'], 'resourceCreator': ['NHS Scotland'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}, 'access': {'accessRights': ['https://www.dundee.ac.uk/hic/governanceservice/'], 'deliveryLeadTime': '2-4 WEEKS', 'jurisdiction': ['GB-SCT'], 'dataProcessor': 'University of Dundee, Health Informatics Centre', 'accessService': 'HIC has implemented a remote-access Trusted Research Environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details are available via the following link:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/', 'dataController': 'Local NHS boards', 'accessRequestCost': ['Quotation available on request']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'conformsTo': ['LOCAL'], 'format': ['Database']}}","{'origin': {'collectionSituation': ['OTHER'], 'source': ['OTHER INFORMATION SYSTEM'], 'purpose': ['DISEASE REGISTRY']}, 'temporal': {'startDate': '1970-01-01', 'timeLag': 'NOT APPLICABLE', 'distributionReleaseDate': '2022-05-19', 'accrualPeriodicity': 'CONTINUOUS'}}",2022-05-31T13:19:22Z,"[{'observedNode': 'PERSONS', 'measuredValue': '112514', 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"{'title': 'NIHR BioResource: Contact detail', 'abstract': 'The NIHR BioResource acquires contact details - name, address, email address, phone/mobile number - from participants at recruitment. This is used to recontact participants to invite them to take part in experimental medicine studies.', 'publisher': {'name': 'NIHR BIORESOURCE', 'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d3f'}, 'contactPoint': 'nbr@bioresource.nihr.ac.uk', 'keywords': ['recall']}",fc2fcaec-bd5b-4d43-9e0c-2fed36eff0e4,"{'typicalAgeRange': '18-85', 'followup': '1 - 10 YEARS', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'United Kingdom (https://www.geonames.org/2635167/united-kingdom.html)'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'eaf84760-348c-4a78-bd9f-489a5813276a', '1.0.0': '7ada943a-083d-44c5-a147-32e581e3ed20', 'latest': '7ada943a-083d-44c5-a147-32e581e3ed20'}","{'description': 'The NIHR Bioresource consists of several groups of participants: ~70k from the general population and blood donors (COMPARE, INTERVAL and STRIDES studies); ~19k with one of ~50 rare diseases (RD) including a ~5k pilot for GEL; ~30k with Inflammatory Bowel Disease (IBD) which include the members of Gut Reaction, the Health Data Research Hub for IBD; and ~20k with Anxiety or depression (GLAD study). It intends to extend recruitment in all areas, and to other rare and common disease groups, with a target of ~300k by 2022.  The NIHR BioResource acquires contact details - name, address, email address, phone/mobile number - from participants at recruitment. This is used to recontact participants to invite them to take part in experimental medicine studies, although sample-only and data-only studies are permitted. We also record NHS number, where known, to allow linkage to healthcare records. Recruitment takes place at blood donor centres, disease clinics, online (particularly for the Mental Health BioResource) but also from more public settings. A participant is not considered a member of the NIHR BioResource without contact details. NHS number availability depends on recruitment method: blood donors and those recruited through clinics will have these to hand, general members of the public will not.', 'isPartOf': 'Not Applicable'}",7ada943a-083d-44c5-a147-32e581e3ed20,https://web.www.healthdatagateway.org/dataset/7ada943a-083d-44c5-a147-32e581e3ed20,"{'usage': {'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'resourceCreator': ['NIHR BioResource. Acknowledgement text: ""We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.""'], 'isReferencedBy': ['Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/'], 'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS']}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'format': ['text/csv'], 'vocabularyEncodingScheme': ['LOCAL', 'NHS NATIONAL CODES'], 'language': ['en']}, 'access': {'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)', 'accessService': 'Some de-identified data may be released to researchers in a platform-independent filetype (e.g. CSV). However, access to any data acquired via NHS Digital is subject to strict restrictions governing where data may be accessed and from which locale - access is currently via an experimental safe haven built in Microsoft Azure.', 'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)', 'jurisdiction': ['GB-GBN'], 'accessRights': ['https://bioresource.nihr.ac.uk/using-our-bioresource'], 'accessRequestCost': ['https://bioresource.nihr.ac.uk/using-our-bioresource/industry-researchers/industry-bioresource-usage-costs/'], 'deliveryLeadTime': 'NOT APPLICABLE'}}","{'origin': {'purpose': ['ADMINISTRATIVE'], 'source': ['ELECTRONIC SURVEY', 'PAPER BASED'], 'collectionSituation': ['CLINIC', 'COMMUNITY', 'HOME']}, 'temporal': {'accrualPeriodicity': 'CONTINUOUS', 'timeLag': 'NOT APPLICABLE', 'startDate': '2002-05-20'}}",2021-02-21T18:24:09Z,"[{'observedNode': 'PERSONS', 'measuredValue': '142966', 'disambiguatingDescription': 'Participants who have contact details', 'observationDate': '26/11/2020', 'measuredProperty': 'COUNT'}]",1.0.0,"{'qualifiedRelation': ['ALL', 'COVID-19 SARI-Watch (formerly CHESS)', 'Civil Registration - Deaths', 'Covid-19 Second Generation Surveillance System', 'Emergency Care Data Set (ECDS)', 'Hospital Episode Statistics Accident and Emergency', 'Hospital Episode Statistics Admitted Patient Care', 'Hospital Episode Statistics Critical Care', 'Hospital Episode Statistics Outpatients', 'Intensive Care National Audit & Research Centre (ICNARC) Case Mix Programme (https://www.icnarc.org/Our-Audit/Audits/Cmp/About)'], 'derivation': ['Not Available']}",2021-11-25T11:36:49Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 2, 'structuralMetadata.tableName': 2, 'structuralMetadata.tableDescription': 2, 'structuralMetadata.dataElementsCount': 28, 'structuralMetadata.columnName': 28, 'structuralMetadata.columnDescription': 28, 'structuralMetadata.dataType': 28, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '84e23d6d-3384-48f1-9098-cb911f55de85', 'description': 'Contact master', 'name': 'Contact', 'dataElementsCount': 11, 'dataElements': 'd22aac76-78b1-4919-8a77-8a158bc7403d, d059158a-d8e0-414b-a383-57876660ac56, 64a6b650-05f5-47af-a5c8-0b82f3677794, 9c6d10e8-a38e-47ef-84c3-66704e2cee1b, 4c5c03dc-b61b-4ab4-966a-0ab028b2d7a5, 282b6572-7fe8-48b3-bd1e-a23507d4478e, 213b8178-947b-4230-87d3-0d22b9bd1b29, 2485a3c3-3b60-409b-88c5-70d6642cef3e, 9e1e33fb-0c37-4994-a5bc-01fe4060cae2, e70bf34f-e899-4146-ae39-be94cd959a83, 486cd44d-49b7-40bf-9b00-5cd43a7778a6'}, {'id': '48529fa3-821a-40de-86d0-b7a0bc722ae3', 'description': 'Contact details', 'name': 'Contact_detail', 'dataElementsCount': 17, 'dataElements': '9e546273-9465-4eff-90af-ae89d523a50d, d3bef905-5fc4-4479-af34-0b855aadda19, 8bd76b07-2fec-4fb4-9fb1-47a7a05f8782, abb2ef94-7e61-45e8-8c8c-5e55096b081d, 636867b5-0c6e-45e9-b23f-03bc66ec853d, 5af15d02-1b78-4701-a255-8e3fdca0d3f1, e6ff2339-3b8b-4508-8f59-aca8af9e1539, fd474b0c-d7f6-4e91-8c3d-5aef6f1e14b9, 0fcddf8a-99e7-4eeb-ae19-faa88d3b9161, 1939c1f1-2950-4242-ae5f-e059d0355cfd, 938444f5-61b4-434b-8640-d3be1b085102, f2eb98a8-45ee-4ee5-abd0-b308eec7ccd0, 6b0f9af8-8443-4a73-a972-8ff2eaab5143, 587f9e34-3c08-4a8b-8e1b-36f4366c350c, bf3fad03-ad40-490b-b9a6-6e7f44923a9e, 4dfb8412-edf3-45dc-b3e9-b8068e03e2d4, d5217348-7ed1-4158-a937-8cd7ca14ffe8'}]}"
"{'title': 'NIHR BioResource: Whole Genome Sequencing', 'abstract': ""The NIHR BioResource ran the pilot for GEL's 100,000 Genomes Project. Most of the participants with rare disease were recruited on the basis of having no known diagnosis, and have had extensive work up on WGS data, including reporting to the clinical team"", 'contactPoint': 'nbr@bioresource.nihr.ac.uk', 'keywords': ['WGS', 'Genome', 'Sequencing', 'GEL'], 'publisher': {'identifier': '607db9c4e1f9d3704d570d3f', 'name': 'NIHR BIORESOURCE', 'memberOf': 'ALLIANCE'}}",ecb90b4a-6f4f-4398-a4f6-d64891c4a137,"{'spatial': 'Worldwide', 'typicalAgeRange': '18-85', 'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM'], 'followup': '1 - 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'3.0.0': '95c26bbd-f584-4aae-81ec-0c5bb157cd55', '6.0.0': '7b922498-1757-418d-96ca-64980a50b647', '4.0.0': 'fbad23e8-5079-4f11-b8b7-aaa01c0fbc4b', '5.0.0': '21997a7e-e830-45e2-85f8-db06ce1bbb98', '2.0.0': '8e32341b-ebad-4e10-8f2b-60b0b5b0ef4c', '1.0.0': 'f8120918-6d7b-4a2a-a59e-bf50efe1595f', '0.0.1': 'c9a56616-d6be-4415-8b90-fe8665c2c8dc', 'latest': '7b922498-1757-418d-96ca-64980a50b647'}","{'description': ""The NIHR Bioresource consists of several groups of participants: ~70k from the general population and blood donors (COMPARE, INTERVAL and STRIDES studies); ~19k with one of ~50 rare diseases (RD) including a ~5k pilot for GEL; ~30k with Inflammatory Bowel Disease (IBD) which include the members of Gut Reaction, the Health Data Research Hub for IBD; and ~20k with Anxiety or depression (GLAD study). It intends to extend recruitment in all areas, and to other rare and common disease groups, with a target of ~300k by 2022. The NIHR BioResource ran the pilot for GEL's 100,000 Genomes Project. Most of the participants with rare diseases were recruited on the basis of having no known diagnosis, and have had extensive work upon WGS data, including reporting to the clinical team."", 'isPartOf': 'Not Applicable'}",7b922498-1757-418d-96ca-64980a50b647,https://web.www.healthdatagateway.org/dataset/7b922498-1757-418d-96ca-64980a50b647,"{'usage': {'resourceCreator': ['NIHR BioResource. Acknowledgement text: ""We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.""'], 'dataUseLimitation': ['RESEARCH USE ONLY'], 'isReferencedBy': ['Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/', 'Flagship publication: Turro, E., Astle, W.J., Megy, K. et al. Whole-genome sequencing of patients with rare diseases in a national health system. Nature 583, 96–102 (2020). https://doi.org/10.1038/s41586-020-2434-2'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION']}, 'access': {'accessRights': ['https://bioresource.nihr.ac.uk/using-our-bioresource'], 'deliveryLeadTime': '1-2 MONTHS', 'jurisdiction': ['GB-GBN'], 'accessService': 'Some de-identified data may be released to researchers in a platform-independent filetype (e.g. CSV). However, access to any data acquired via NHS Digital is subject to strict restrictions governing where data may be accessed and from which locale - access is currently via an experimental safe haven built in Microsoft Azure.', 'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)', 'accessRequestCost': ['https://bioresource.nihr.ac.uk/using-our-bioresource/industry-researchers/industry-bioresource-usage-costs/'], 'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)'}, 'formatAndStandards': {'language': ['en'], 'format': ['text/plink', 'text/vcf'], 'vocabularyEncodingScheme': ['OTHER'], 'conformsTo': ['LOCAL']}}","{'temporal': {'accrualPeriodicity': 'STATIC', 'timeLag': '6 MONTHS PLUS', 'distributionReleaseDate': '2020-06-24'}, 'origin': {'source': ['MACHINE GENERATED'], 'purpose': ['STUDY'], 'collectionSituation': ['OTHER']}}",2020-01-13T15:06:27Z,[{}],6.0.0,{'derivation': ['European Genome-phenome Archive datasets: https://www.ebi.ac.uk/ega/dacs/EGAC00001000259']},2021-11-25T11:38:10Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'GPES Data for Pandemic Planning and Research (COVID-19)', 'publisher': {'name': 'NHS DIGITAL', 'identifier': '5f86cd34980f41c6f02261f4', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'enquiries@nhsdigital.nhs.uk', 'abstract': 'NHS Digital’s\xa0fortnightly collection of GP data will\xa0provide\xa0data to\xa0support vital planning and research into coronavirus (COVID-19).', 'keywords': ['DIGITRIALS', 'GDPPR', 'NCS', 'GP DATA']}",696cfc9f-090d-4328-94ac-140760a77c73,"{'followup': 'OTHER', 'spatial': 'https://www.geonames.org/6269131/england.html', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'NOT APPLICABLE', 'typicalAgeRange': '16-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'4.0.0': 'f56d5407-4a7e-420e-8479-87b075da2b39', '5.0.0': '7d313fa6-941f-48ca-93e1-05d912d183ac', '3.0.0': '964ee922-2862-48ac-b77c-be68837ba88c', '2.0.0': '6cc463b4-5524-40cc-8190-b484458ad48c', '1.0.0': 'a65213b3-4494-41f6-9438-ae02e82e41f3', '0.0.1': '10ba86d6-03f8-4343-8713-1ee9ba323ad7', 'latest': '7d313fa6-941f-48ca-93e1-05d912d183ac'}","{'description': ""Coronavirus (COVID-19) has led to increased demand on general practices, including an increasing number of requests to provide patient data to inform planning and support vital research on the cause, effects, treatments and outcomes for patients of the virus.  \n\nTo support the response to the coronavirus outbreak, NHS Digital has been legally directed to collect and analyse healthcare information about patients, including from their GP record, for the duration of the coronavirus emergency period, under the COVID-19 Public Health Directions 2020 (COVID-19 Direction). All GP practices in England are legally required to share data with NHS Digital for this purpose under the Health and Social Care Act 2012. More information about this requirement is contained in the Data Provision Notice issued by NHS Digital to GP practices.\n\nThis collection will reduce burden on general practices, allowing them to focus on patient care and support the coronavirus response.\n\nTimescales for dissemination of agreed data can be found under 'Our Service Levels' at the following link: https://digital.nhs.uk/services/data-access-request-service-dars/data-access-request-service-dars-process"", 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://digital.nhs.uk/coronavirus/gpes-data-for-pandemic-planning-and-research']}",7d313fa6-941f-48ca-93e1-05d912d183ac,https://web.www.healthdatagateway.org/dataset/7d313fa6-941f-48ca-93e1-05d912d183ac,"{'access': {'dataController': 'NHS Digital', 'accessRights': ['https://digital.nhs.uk/services/data-access-request-service-dars'], 'accessService': 'Once your DARS application has been approved, data will be made available either by secure file transfer or through the Data Access Environment (DAE).\n\nSecure file transfer: https://digital.nhs.uk/services/transfer-data-securely\n\nDAE: https://digital.nhs.uk/services/data-access-environment-dae', 'accessRequestCost': ['https://digital.nhs.uk/services/data-access-request-service-dars/data-access-request-service-dars-charges'], 'dataProcessor': 'Not Applicable', 'jurisdiction': ['GB-ENG'], 'deliveryLeadTime': 'OTHER'}, 'formatAndStandards': {'format': ['csv'], 'vocabularyEncodingScheme': ['SNOMED CT', 'DM+D', 'NHS NATIONAL CODES', 'ODS'], 'language': ['en'], 'conformsTo': ['LOCAL']}, 'usage': {'resourceCreator': ['NHS Digital'], 'investigations': ['https://digital.nhs.uk/services/data-access-request-service-dars/register-of-approved-data-releases'], 'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE'], 'isReferencedBy': ['NOT APPLICABLE']}}","{'origin': {'source': ['EPR'], 'purpose': ['ADMINISTRATIVE'], 'collectionSituation': ['PRIMARY CARE']}, 'temporal': {'endDate': '2022-03-31', 'accrualPeriodicity': 'WEEKLY', 'startDate': '1900-01-01', 'distributionReleaseDate': '2020-11-17', 'timeLag': 'VARIABLE'}}",2020-09-30T15:05:10Z,"[{'observedNode': 'PERSONS', 'measuredValue': '56441600', 'disambiguatingDescription': 'This and other counts (for GP system suppliers, Practices, Journal Entries and Clinical Codes Cluster Utilisation) and coverage proportion for England are reported at https://digital.nhs.uk/coronavirus/gpes-data-for-pandemic-planning-and-research/guide-fo', 'observationDate': '24/08/2020', 'measuredProperty': 'Count'}]",5.0.0,"{'tools': ['https://digital.nhs.uk/coronavirus/gpes-data-for-pandemic-planning-and-research/guide-for-analysts-and-users-of-the-data'], 'qualifiedRelation': ['NOT APPLICABLE'], 'derivation': ['Data will be minimised as appropriate relative to the data access application']}",2021-06-28T10:52:18Z,"{'structuralMetadataCount': 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"{'title': 'Children In Need Census Wales (CINW)', 'keywords': ['Children', 'Welsh', 'SAIL', 'core-res', 'CINW'], 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '5f3f98068af2ef61552e1d75', 'name': 'SAIL'}, 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'abstract': 'Numbers and characteristics of children in need, including parental circumstances, health and educational outcomes. 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"{'title': 'National Early Inflammatory Arthritis Audit - clinical dataset', 'abstract': 'Continuously  clinical dataset of all patients in England and Wales presenting to secondary rheumatology services over age  16 years with suspected inflammatory arthritis. 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"{'title': 'COVID-19 Vaccination', 'publisher': {'name': 'HEALTH AND SOCIAL CARE NORTHERN IRELAND', 'memberOf': 'ALLIANCE', 'identifier': '5f89662f7150a1b050be0710'}, 'keywords': ['Northern Ireland', 'COVID-19', 'Vaccination', 'NCS', 'Occupation', 'National Core Study'], 'abstract': 'Details of completed (processed) COVID-19 vaccinations', 'contactPoint': 'hbs@hscni.net'}",b0049073-3335-433d-bdb9-de22547698f8,"{'typicalAgeRange': '16-120', 'spatial': ['https://www.geonames.org/2641364/northern-ireland.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'This dataset deals with COVID-19 vaccinations only.', 'followup': 'UNKNOWN'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '7daacbe5-082d-4c12-b801-0fb08932dada'},"{'description': 'This dataset is extracted from the HSCNI Vaccine Management System, this system was introduced for management of COVID-19 vaccine bookings across Health and Social Care Northern Ireland. Data covers all bookings including GP Practice and HSC Trust bookings. Initially vaccines had been booked on an array of different systems however all historic data has been migrated to the Vaccine Management System. The data shows the key information about the vaccine record for each patient.', 'associatedMedia': ['']}",7daacbe5-082d-4c12-b801-0fb08932dada,https://web.www.healthdatagateway.org/dataset/7daacbe5-082d-4c12-b801-0fb08932dada,"{'access': {'deliveryLeadTime': '1-2 MONTHS', 'dataProcessor': 'HSC Honest Broker Service', 'accessRequestCost': ['http://www.hscbusiness.hscni.net/pdf/Researcher%20Pack.zip'], 'dataController': 'Northern Ireland Health and Social Care Board', 'accessService': 'Remote access can now be granted via an HSCNI tenancy of the UK Secure e-Research Platform (UK SeRP), the HBS still offer the physical safe setting in Belfast for local research.', 'accessRights': ['http://www.hscbusiness.hscni.net/services/2454.htm'], 'jurisdiction': ['GB-NIR']}, 'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['OTHER'], 'conformsTo': ['LOCAL'], 'format': ['text', 'csv']}, 'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'resourceCreator': ['ACKNOWLEDGMENT  The authors would like to acknowledge the help provided by the staff of the Honest Broker Service (HBS) within the Business Services Organisation Northern Ireland (BSO). The HBS is funded by the BSO and the Department of Health (DoH). The authors alone are responsible for the interpretation of the data and any views or opinions presented are solely those of the author and do not necessarily represent those of the BSO.'], 'dataUseLimitation': ['RESEARCH USE ONLY']}}","{'origin': {'source': ['EPR'], 'purpose': ['CARE', 'ADMINISTRATIVE'], 'collectionSituation': ['PRIMARY CARE', 'OTHER']}, 'temporal': {'startDate': '2020-12-08', 'timeLag': '1-2 MONTHS', 'accrualPeriodicity': 'IRREGULAR'}}",2021-08-23T13:39:56Z,"[{'observedNode': 'PERSONS', 'measuredProperty': 'Count', 'measuredValue': '1188471', 'observationDate': '09/07/2021'}]",1.0.0,"{'qualifiedRelation': ['https://web.www.healthdatagateway.org/dataset/1d5b9205-dae4-4b0e-a3d3-04707875edf8', 'https://web.www.healthdatagateway.org/dataset/3abc20ce-3dc6-4715-9de0-56aa97a6f5ec', 'https://web.www.healthdatagateway.org/dataset/c8f2ee14-2831-445d-a207-2f7f932f4735', 'https://web.www.healthdatagateway.org/dataset/4e5ba567-c452-4979-8e2e-865f7df20252'], 'derivation': ['Unknown']}",2021-08-23T13:39:56Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 3, 'structuralMetadata.tableName': 3, 'structuralMetadata.tableDescription': 3, 'structuralMetadata.dataElementsCount': 16, 'structuralMetadata.columnName': 16, 'structuralMetadata.columnDescription': 16, 'structuralMetadata.dataType': 16, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '0bfcb26a-2997-4f46-b45f-dcaea2c06008', 'description': 'The Location table holds the location of where the vaccination took place.', 'name': 'Location', 'dataElementsCount': 1, 'dataElements': 'c0ee75b5-2d53-4985-aaf4-c1fd777063ee'}, {'id': '3a909b5a-7c37-42b8-9353-efecdd3837a5', 'description': ""The patient table stores information about an individual's personal contact details and demographic information as well as the assoicated Patient Vaccination Records which record their vaccination history."", 'name': 'Patient', 'dataElementsCount': 11, 'dataElements': 'c74b6c4f-6eb7-4f19-8a97-57df8f84b354, a3ac015d-18b4-4ac4-9533-03e93aa61997, c4c6b697-d168-4546-bc20-aab49baddb4e, 30e3a313-a424-42cb-8a4b-77b4d4a3b5fb, f43861e2-4465-4b4e-9d80-a8f735069ce8, 655eaee3-6621-47d8-9610-5a057f8bb2df, 4aeb0596-b4a7-4549-8ab7-d4a8df3bacc8, a16374fa-e3f0-46d8-8e31-43b2514a3ae8, 5095fab0-1678-4439-8118-86b6346b9ca7, 59713d69-6614-429f-9efd-d67c337bcf92, 30163445-d30a-4a8b-baf4-d598784c3421'}, {'id': '6dde49ef-fdc9-4eae-be16-8c89ebabb8e5', 'description': 'This table hold patient vaccination records which cumulatively represent a persons vaccination history.', 'name': 'Patient Vaccination Record', 'dataElementsCount': 4, 'dataElements': '1e5d9322-e48c-47e9-a761-160d32407589, 471a9a03-84cc-4b7b-96ef-097f448bf91a, 051f4423-9dc7-4d40-a8c2-9796e4de87ba, 5e32780a-2d38-47ea-889a-8fcb31c57d7d'}]}"
"{'title': 'Effect of personal air pollution exposure on asthma control in children', 'publisher': {'name': 'BREATHE', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'memberOf': 'HUB'}, 'contactPoint': 'j.griff@qmil.ac.uk', 'abstract': 'This study aimed to recruit asthmatic children and to assess whether it was feasible to reduce their air pollution exposure levels by intervening with advice to decrease exposure.', 'keywords': ['Air pollution', ' black carbon', ' asthma management', ' children with asthma', ' intervention']}",57efab41-65fc-4069-8b9d-e5ced13cb4d3,"{'typicalAgeRange': '7-16', 'spatial': 'https://www.geonames.org/countries/GB/united-kingdom.html'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '7df79ee6-e67d-4ad9-89f3-23bee6cb0ec5'},"{'description': '<p>This study aimed to recruit asthmatic children and to assess whether it was feasible to reduce their air pollution exposure levels by intervening with advice to decrease exposure. The following steps had been taken to assess the aim: First, this study assessed the participants’ BC exposure data collected before and after the intervention. In particular, the assessments explored how children would react within a week and 5 weeks after receiving the intervention. Second, the study explored when and where the exposure reduction occurred. This was done by dividing each BC data into a set of four predetermined microenvironments, i.e. home, commute, school and other microenvironments. The purpose of the four microenvironments was to simplify and consolidate participants’ actions during each monitoring period, which would identify which microenvironment had achieved the most significant effects because of the intervention. Finally, the study assessed the participants’ time weighted exposure levels. This was done by calculating the participants’ exposure levels for each microenvironment weighted with the time spent in them. In addition to the main objective, the study has also explored other variables, included participants’ paediatric asthma quality of life, asthma control tests and their lung function, as well as their NO2 exposure levels before and after the intervention. Overall, there was a significant (p<0.05) reduction in participants’ BC exposure after the intervention. Questionnaires revealed the participants’ asthma control had significantly improved after the intervention and the analysis of their cotinine and urinary particle loading levels were also declined after the intervention. As such, the findings from this study confirm the main research aim, which argued that reduced exposure to air pollution in asthmatic children is achievable via increased awareness of the health impacts that air pollution can have on them and that mitigating personal exposure is achievable via simple behavioural changes. </p>', 'isPartOf': 'AUCKAR'}",7df79ee6-e67d-4ad9-89f3-23bee6cb0ec5,https://web.www.healthdatagateway.org/dataset/7df79ee6-e67d-4ad9-89f3-23bee6cb0ec5,"{'usage': {'resourceCreator': 'Queen Mary University of London', 'dataUseLimitation': 'GENERAL RESEARCH USE'}, 'access': {'jurisdiction': ['GB-ENG', 'GB-SCT', 'GB-WLS'], 'deliveryLeadTime': 'VARIABLE', 'dataController': 'BREATHE', 'dataProcessor': 'NOT APPLICABLE', 'accessRights': ['To be determined upon data access request'], 'accessService': 'To be determined upon data access request'}, 'formatAndStandards': {'language': 'en', 'vocabularyEncodingScheme': 'LOCAL', 'conformsTo': 'LOCAL'}}","{'temporal': {'startDate': '2015-09-01', 'endDate': '2017-02-01'}, 'origin': {'purpose': 'STUDY', 'collectionSituation': 'OTHER'}}",2021-04-09T15:35:20Z,,0.0.1,,2021-04-09T15:32:13Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'At-Risk Registers Integrated into primary care to Stop Asthma crises in the UK', 'abstract': 'A randomised controlled trial of GP practice staff training and high risk patient identification and flagging to reduce the occurrence of severe asthma related events (hospitalisations and deaths).', 'publisher': {'name': 'BREATHE', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'memberOf': 'HUB'}, 'contactPoint': 'ARRISA-UK.med@uea.ac.uk'}",36a5da45-772c-4c67-8ec3-84c9e67332d3,"{'typicalAgeRange': '0-100', 'spatial': 'https://www.geonames.org/countries/GB/united-kingdom.html'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '7e780260-e8d3-4541-b51e-213233dfc349'},"{'description': '<p>It is a randomised cluster controlled trial of a brief\xa0training\xa0of GP practice staff\xa0and of the identification and flagging of records of high risk asthma patients\xa0to determine if this\xa0it may reduce the occurrence of severe asthma related events. In this study design it is the GP practice that is randomised.</p>\n\n<p>The study data is from primary care electronic health records, Hospital Episode Statistics, and Mortality data of the asthma patients at the practice.</p>', 'isPartOf': 'AUCKAR'}",7e780260-e8d3-4541-b51e-213233dfc349,https://web.www.healthdatagateway.org/dataset/7e780260-e8d3-4541-b51e-213233dfc349,"{'access': {'dataController': 'BREATHE', 'accessRights': ['To be determined upon data access request'], 'accessService': 'To be determined upon data access request', 'dataProcessor': 'NOT APPLICABLE', 'deliveryLeadTime': 'VARIABLE', 'jurisdiction': ['GB-ENG', 'GB-SCT', 'GB-WLS']}, 'formatAndStandards': {'language': 'en', 'vocabularyEncodingScheme': 'LOCAL', 'conformsTo': 'LOCAL'}, 'usage': {'resourceCreator': 'ARRISA study\nStudy group and NCTU/UEA with HTA/NIHR funding', 'dataUseLimitation': 'GENERAL RESEARCH USE'}}","{'temporal': {'startDate': '2015-04-01', 'endDate': '2019-09-30'}, 'origin': {'collectionSituation': 'OTHER', 'purpose': 'STUDY'}}",2021-04-09T15:30:23Z,,0.0.1,,2021-04-09T15:27:17Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Next Steps', 'keywords': ['Next Steps', 'Mental Health', 'Physical Measures', 'Education', 'Longitudinal', 'COVID-19', 'DATAMIND'], 'publisher': {'name': 'DATAMIND', 'identifier': '61800787f4dde0c2a01e1ea2', 'memberOf': 'HUBS'}, 'abstract': 'Next Steps is a longitudinal cohort study following the lives of around 16,000 people in England born in 1989-90.'}",0ad7a3dd-e720-49ef-9d27-c394a32b0326,"{'followup': '> 10 YEARS', 'typicalAgeRange': '14-32', 'spatial': ['https://www.geonames.org/6269131/england.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '7ec7c8c4-770b-41f0-87d0-38ea232ae5bd'},"{'description': 'Next Steps is a longitudinal cohort study following the lives of young people in England born in 1989-90. Previously known as the Longitudinal Study of Young People in England (LSYPE), Next Steps began in 2004 when cohort members were 14 years old with an original sample of 15,770 people. \n\nOriginally managed by the Department for Education, the study was designed to explore young people’s experiences through secondary school, and on to further education, training or the workplace. Cohort members were surveyed annually until 2010, and the next sweep after this was when they were aged 25, in 2015-16. \n\nNext Steps has collected information about cohort members’ education and employment, economic circumstances, family life, physical and emotional health and wellbeing, social participation and attitudes. The Next Steps data has also been linked to National Pupil Database (NPD) records, which include the cohort members’ individual scores at Key Stage 2, 3 and 4 and more administrative linkages are planned. The study is now based at the Centre for Longitudinal Studies (CLS) and has become a multidisciplinary study providing invaluable insights into the different aspects of the lives of millennials.'}",7ec7c8c4-770b-41f0-87d0-38ea232ae5bd,https://web.www.healthdatagateway.org/dataset/7ec7c8c4-770b-41f0-87d0-38ea232ae5bd,"{'access': {'jurisdiction': ['GB'], 'accessRights': ['https://cls.ucl.ac.uk/data-access-training/data-access/'], 'dataProcessor': 'Centre for Longitudinal Studies (CLS)', 'dataController': 'Centre for Longitudinal Studies (CLS)'}}","{'temporal': {'timeLag': 'VARIABLE', 'accrualPeriodicity': 'OTHER', 'startDate': '2001-04-20'}}",2021-11-22T13:47:27Z,"[{'observedNode': 'PERSONS', 'measuredValue': 7707, 'observationDate': '01/09/2015', 'measuredProperty': 'Count'}]",1.0.0,,2021-11-22T13:47:27Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Outpatient Appointments and Attendances - Scottish Morbidity Record (SMR00)', 'keywords': ['NHS Scotland Outpatients', 'CO-CONNECT', 'National Core Study', 'COVID-19', 'NCS'], 'publisher': {'memberOf': 'ALLIANCE', 'name': 'PUBLIC HEALTH SCOTLAND', 'identifier': '5f8992a97150a1b050be0712'}, 'abstract': 'The Outpatients (SMR00) dataset collects episode level data from patients on new and follow up appointments at outpatient clinics in all specialities (except A&E and Genito-Urinary Medicine).', 'contactPoint': 'phs.edris@phs.scot'}",04cb9964-54fb-4529-b09b-735c3daa1c7b,"{'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'All of secondary care in relation to appointments and attendances', 'followup': 'OTHER', 'spatial': ['https://www.geonames.org/2638360/scotland.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'dd064419-4e64-4891-bfe4-e936972a32a9', '6.0.0': '7ed08209-f22e-4cdf-b8b5-e1d58b0bcaf9', '1.0.0': '934ea7db-d80d-4bba-b92e-3d6d23aca9ba', '2.0.0': 'd936d21f-6b78-470c-b623-6d1213f2a041', '3.0.0': 'fb0e3d82-dcdb-4854-bdf5-99f03514a083', '5.0.0': 'dada485d-2dbd-4e17-ade6-94512210e909', '4.0.0': 'd8043751-28d6-4cfe-b860-757e592ab3cb', 'latest': '7ed08209-f22e-4cdf-b8b5-e1d58b0bcaf9'}","{'description': ""An SMR00 is generated for outpatients receiving care in the specialties listed when:\n\n-they attend a medical consultant outpatient clinic;\n-they meet with a consultant or senior member of his/her team outwith an outpatient clinic session (including the patient's home).\n-they attend a clinic run by a nurse or an AHP identified as the Health Care Professional Responsible for Care for that clinic and who has legal and clinical responsibility for that patient.\n\nThe dataset is generally fully complete and ready for analysis three month preceding the current date.  So for example at the end of August, data is available until the end of May."", 'isPartOf': 'Scottish Morbidity Record (SMR)', 'associatedMedia': ['https://www.ndc.scot.nhs.uk/National-Datasets/data.asp?SubID=4']}",7ed08209-f22e-4cdf-b8b5-e1d58b0bcaf9,https://web.www.healthdatagateway.org/dataset/7ed08209-f22e-4cdf-b8b5-e1d58b0bcaf9,"{'formatAndStandards': {'conformsTo': ['NHS SCOTLAND DATA DICTIONARY'], 'vocabularyEncodingScheme': ['NHS SCOTLAND NATIONAL CODES'], 'language': ['en'], 'format': ['text', 'csv']}, 'access': {'dataProcessor': 'National Services Scotland', 'jurisdiction': ['GB'], 'deliveryLeadTime': 'VARIABLE', 'accessService': 'Scottish National Data Safe Haven - https://www.isdscotland.org/Products-and-Services/eDRIS/', 'dataController': 'Public Health Scotland', 'accessRights': ['https://www.informationgovernance.scot.nhs.uk/pbpphsc/', 'https://publichealthscotland.scot/contact-us/bespoke-data-analysis-requests/', 'https://www.isdscotland.org/Products-and-Services/eDRIS/'], 'accessRequestCost': ['Research Projects - https://www.isdscotland.org/Products-and-Services/eDRIS/', 'Bespoke data analysis requests - https://publichealthscotland.scot/contact-us/bespoke-data-analysis-requests/']}, 'usage': {'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'NOT FOR PROFIT USE'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}}","{'temporal': {'accrualPeriodicity': 'MONTHLY', 'startDate': '1997-04-01', 'timeLag': '1-2 MONTHS', 'distributionReleaseDate': '2020-09-01'}, 'origin': {'collectionSituation': ['OUTPATIENTS'], 'source': ['EPR'], 'purpose': ['CARE']}}",2020-01-10T22:06:51Z,"[{'observedNode': 'EVENTS', 'measuredValue': '104151931', 'disambiguatingDescription': 'Episodes', 'observationDate': '20/02/2021', 'measuredProperty': 'Count'}]",6.0.0,"{'qualifiedRelation': ['UK Biobank', 'Scottish Longitudinal Study']}",2021-10-28T14:36:30Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 5, 'structuralMetadata.tableName': 5, 'structuralMetadata.tableDescription': 5, 'structuralMetadata.dataElementsCount': 83, 'structuralMetadata.columnName': 83, 'structuralMetadata.columnDescription': 83, 'structuralMetadata.dataType': 83, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'b27902c0-af9f-4438-bcdb-843d11fad6eb', 'description': 'Episode Management Data', 'name': 'Episode Management Data', 'dataElementsCount': 23, 'dataElements': 'ac98d7db-5baf-4d32-843f-4b0b0c25166d, 24c80c93-f17b-465a-bef5-2337187904ec, 97ed2dae-b174-4029-911c-fe7a11bff0e0, 762d3716-148e-4e49-a3b6-ee18726ec0be, 8cc855a7-9778-4c9f-bde8-36ba8107d97d, 6da303fa-db00-41f6-938a-997fa922346f, 1ca396e3-8ae2-4f89-bf8b-8ae29774ca44, 2200ec92-dd88-4adf-806e-50ea067e58e5, c1220a64-fc29-41f6-b21f-92b71dd91c75, b11dc072-fbd1-45d2-96a9-2fb206d4d384, 5978094e-cebb-4c43-8402-26ac3127f43d, 9573db81-f854-45b1-925a-552b72699a43, 039074be-6462-4e6d-8ee1-278698ff9d50, 2464fb85-f55b-4057-b68f-84a99ec4e143, fce675a3-2e62-4401-9258-2fcd3d8243ac, 89780228-4b69-46d8-a09c-52dacc6e175f, f6ef8292-3650-4456-aeb0-2c8efaeb9545, 0a39c92f-91e2-4af5-a1a9-0479db390e69, b7b08f3f-9689-43c2-97c4-74b960197f72, 1d68e52f-e347-4240-a2c3-b0e60dc30081, 2ae32fe4-ac30-4b12-90e8-293f48c35f82, f8e2a730-f175-4a74-9d28-b94b11c6c467, b2ccf832-6ee7-4b0b-83c1-33808006b65f'}, {'id': '87f77298-e9f7-43e8-ae7f-68e18276c6e4', 'description': 'An outpatient attendance is the occasion of a patient attending a consultant or other medical clinic or meeting with a consultant or senior member of his team outwith a clinic session.\n\nIf the patient is a new outpatient then the attendance is a new outpatient attendance, otherwise it is a follow-up (return) outpatient attendance.\n\nNotes\n\nOutpatient attendances outwith clinic sessions may occur at any location including the patients home (see Home Visit). 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"{'title': 'COVID Therapeutics data for QResearch', 'publisher': {'name': 'QResearch', 'identifier': '61ba059ac688870b12a4e05b', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'qresearch@phc.ox.ac.uk', 'abstract': ""Extract from NHS England's specialised commissioning dataset for antivirals and monoclonal antibody prescriptions for COVID-19."", 'keywords': ['National Core Study', 'NCS']}",891150d2-85b5-4bed-88a8-7d65f75bb020,"{'spatial': ['United Kingdom,England'], 'pathway': 'Specialised commissioning dataset for high risk patients', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-115'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'fc944840-8d9e-468b-a2fb-ba4fa2d43490', '2.0.0': '7ed274f8-c30f-4f97-af5f-808d212de7e8', 'latest': '7ed274f8-c30f-4f97-af5f-808d212de7e8'}","{'description': ""Extract from NHS England's specialised commissioning dataset for antivirals and monoclonal antibody prescriptions for COVID-19.""}",7ed274f8-c30f-4f97-af5f-808d212de7e8,https://web.www.healthdatagateway.org/dataset/7ed274f8-c30f-4f97-af5f-808d212de7e8,"{'access': {'dataController': 'University of Oxford', 'dataProcessor': 'University of Oxford', 'accessRequestCost': ['https://www.qresearch.org/information/information-for-researchers/'], 'jurisdiction': ['GB-ENG'], 'accessService': 'Remote Desktop to dedicated Windows Server.\n\nStandard Server Spec:\n16GB RAM, 4 Logical Xeon Gold Processors, 200 GB HDD\n\nMax available Server Spec:\n512GB RAM, 72 Logical Xeon Gold Processors, 2TB HDD. Tesla V100 GPU', 'deliveryLeadTime': '2-4 WEEKS', 'accessRights': ['https://www.qresearch.org/information/information-for-researchers/']}, 'formatAndStandards': {'conformsTo': ['NHS DATA DICTIONARY'], 'format': ['CSV', 'TSV', 'Stata', 'SQL Server Database'], 'vocabularyEncodingScheme': ['SNOMED CT', 'LOCAL'], 'language': ['en']}, 'usage': {'investigations': ['https://www.qresearch.org/research/approved-research-programs-and-projects/'], 'resourceCreator': ['NHS England'], 'dataUseRequirements': ['ETHICS APPROVAL REQUIRED', 'NOT FOR PROFIT USE'], 'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY']}}","{'origin': {'collectionSituation': ['IN-PATIENTS', 'CLINIC'], 'source': [], 'purpose': ['CARE']}, 'temporal': {'timeLag': 'MORE 6 MONTHS', 'accrualPeriodicity': 'BIWEEKLY', 'startDate': '1997-04-01', 'endDate': '2021-03-31'}}",2022-03-21T16:41:00Z,"[{'observationDate': '04/02/2022', 'measuredProperty': 'Count', 'observedNode': 'EVENTS', 'measuredValue': '35047612'}]",2.0.0,,2022-06-08T09:53:20Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 9, 'structuralMetadata.columnName': 9, 'structuralMetadata.columnDescription': 9, 'structuralMetadata.dataType': 9, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '0b6ed233-99a1-4f8b-af76-e1a074d6dc23', 'description': 'covid therapeutics', 'name': 'covid therapeutics', 'dataElementsCount': 9, 'dataElements': '02b2a089-515d-41fd-b29f-4825acf3019c, 17726107-77ba-4695-9cab-9aed7a5ea5b2, d8ea53ab-0d91-4d75-a2f0-f217cb9cee84, 5ae29c3b-e4a8-44d9-9617-9a980de8a2f7, 2256c9ca-e00f-4033-9890-2ada998fc456, 6ef0d94f-6620-41d7-a227-b98ecb5665aa, 4342e880-ecfc-4728-9d26-29e82daf7132, afb727ce-6daf-4a3d-a7b9-9b9576f92079, f2c0e5c5-5e14-42b7-93eb-23a5e375be07'}]}"
"{'title': 'UHB Eye Image Dataset Release 001', 'keywords': ['amblyopia', 'Age Related Macular Degeneration', 'Background Diabetic Retinopathy', 'Cataract', 'Cornea', 'Digital Surveillance', 'Clinically Significant Macular Oedema', 'Diabetic Retinopathy', 'Diabetic Maculopathy', 'Diabetes Mellitus Type 1', 'Diabetes Mellitus Type 2', 'National Screening Grading', 'Gestational Diabetes', 'Glaucoma', 'Haemorrhage', 'Hospital Eye Service', 'Images', 'Microaneurysm', 'Non-Proliferative Diabetic Retinopathy', 'New Vessels', 'Proliferative Diabetic Retinopathy', 'Optical Coherence Tomography', 'Orbit', 'Pregnancy', 'Retina', 'Referral', 'Screening', 'Screening Programme', 'Strabismus', 'Vision', 'Visual Acuity', 'OCT', 'Fundus', 'OCT images', 'Heidelberg', 'JPEG', 'JPG', 'Optical coherence tomography', 'Optical coherence tomography angiography', 'Fundus fluorescence angiography', 'spectralis', 'Heidelberg engineering', 'retinal photograph', 'fundus photograph', 'macula', 'optic disc'], 'publisher': {'contactPoint': 'enquiries@insight.hdrhub.org', 'memberOf': 'HUB', 'name': 'INSIGHT'}, 'contactPoint': 'enquiries@insight.hdrhub.org', 'doiName': 'https://web.www.healthdatagateway.org/dataset/21fb56d1-726f-40e3-a998-e4b34ba3e46f', 'abstract': 'Routine clinical ophthalmology data for every patient who have been seen at Queen Elizabeth Hospital and the Birmingham, Solihull and Black Country Diabetic Retinopathy screening program at University Hospitals Birmingham NHS Foundation Trust.'}",21fb56d1-726f-40e3-a998-e4b34ba3e46f,"{'typicalAgeRange': '0-110', 'followup': '6 - 12 MONTHS', 'spatial': 'West Midlands Region, UK', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Views of the retina are core to the Diabetic Retinal Screening Programme and as such are a record of the patient, and provide the evidence to a retinopathy grade'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'a6c2a115-f1d1-4f77-b127-5d5400f48f36', '3.0.0': '7f4fb30c-2a09-4d75-bed2-114751e06723', '1.0.0': '4cb4c728-8067-40f7-8166-f0f6a0f83720', '2.0.0': '94351432-da7e-4d44-97eb-4359d45e0240', 'latest': '7f4fb30c-2a09-4d75-bed2-114751e06723'}","{'description': 'There are two data sets of eye scans available. The first of these is a set fundus images of which the are c. 7.0 million. The other is a set of OCT scans of which there are c. 440, 000.\n\nThis dataset contains routine clinical ophthalmology data for every patient who have been seen at Queen Elizabeth Hospital and the Birmingham, Solihull and Black Country Diabetic Retinopathy screening program at University Hospitals Birmingham NHS Foundation Trust, with longitudinal follow-up for 15 years. Key data included are:\n• Total number of patients. \n• Demographic information (including age, sex and ethnicity)\n• Past ocular history\n• Intravitreal injections\n• Length of time since eye diagnosis \n• Visual acuity\n• The national screening diabetic grade category (seven categories from R0M0 to R3M1)\n• Reason for sight and severe sight impairment\n\nGeography\nUniversity Hospitals Birmingham is set within the West Midlands and it has a catchment population of circa 5.9million.  The region includes a diverse ethnic, and socio-economic mix, with a higher than UK average of minority ethnic groups. It has a large number of elderly residents but is the youngest population in the UK. There are particularly high rates of diabetes, physical inactivity, obesity, and smoking.\n\nData source:  Ophthalmology department at Queen Elizabeth Hospital, University Hospitals Birmingham NHS Foundation Trust, Birmingham, United Kingdom. The Birmingham, Solihull and Black Country Data Set, University Hospitals Birmingham NHS Foundation Trust, Birmingham, United Kingdom. They manage over 200,000 patients, with longitudinal follow-up up to 15 years, making this the largest urban diabetic screening scheme in Europe. \n\nPathway: The routine secondary care follow-up in the hospital eye services for all ophthalmic diseases at Queen Elizabeth Hospital. The Birmingham, Solihull and Black Country dataset is representative of the patient pathway for community screening and grading of diabetic eye disease.', 'isPartOf': 'Not Applicable'}",7f4fb30c-2a09-4d75-bed2-114751e06723,https://web.www.healthdatagateway.org/dataset/7f4fb30c-2a09-4d75-bed2-114751e06723,"{'access': {'deliveryLeadTime': '2-6 MONTHS', 'accessRequestCost': 'https://www.insight.hdrhub.org/', 'dataProcessor': 'NOT APPLICABLE', 'accessRights': ['https://www.insight.hdrhub.org/'], 'accessService': ""INSIGHT is developing it's data access environment for researchers.  Until such time INSIGHT releases anonymised data,under data licence, into external secure environments."", 'jurisdiction': 'GB-GBN', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust'}, 'formatAndStandards': {'vocabularyEncodingScheme': 'NHS NATIONAL CODES', 'format': ['JPEG', 'DICOM'], 'language': 'en', 'conformsTo': 'LOCAL'}, 'usage': {'dataUseLimitation': 'GENERAL RESEARCH USE', 'dataUseRequirements': 'PROJECT SPECIFIC RESTRICTIONS', 'resourceCreator': 'https://www.gov.uk/government/publications/diabetic-eye-screening-retinal-image-grading-criteria'}}","{'temporal': {'distributionReleaseDate': '2020-03-31', 'timeLag': '2-4 WEEKS', 'accrualPeriodicity': 'CONTINUOUS', 'startDate': '2007-01-01'}, 'origin': {'source': 'EPR', 'collectionSituation': ['OUTPATIENTS', 'COMMUNITY'], 'purpose': 'CARE'}}",2020-01-13T15:27:28Z,"[{'observedNode': 'Events', 'measuredValue': 'Diabetic Population forom all ethnic groups from age 12 onwards, total live population in excess of 200,000, with another 100,000 patients in the database who are deceased or have left the programme area. Approx 34,000 Hospital patients', 'disambiguatingDescription': '', 'observationDate': '2020-03-31', 'measuredProperty': 'Count'}]",3.0.0,{'derivation': ['Not Available']},2021-02-25T15:53:24Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 25, 'structuralMetadata.columnName': 25, 'structuralMetadata.columnDescription': 25, 'structuralMetadata.dataType': 25, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'cfccfe29-c9d9-433b-8414-6fd09fa70b5f', 'description': 'This table contains the image metadata', 'name': 'images', 'dataElementsCount': 25, 'dataElements': '447f18ba-9aac-4590-ab5e-47078c46867d, f5e6db05-db24-408e-8d58-4d0f8c13420c, c96c4bb8-5489-4f01-8f23-de234cb66925, 54ff45e5-0745-4cc9-bf09-7925fb0c2cf5, 2a075f68-3048-41e1-b61d-e8fc4c0400eb, eac72ef6-ee25-4355-a22e-158a83cfec80, b64a1fd4-e1bb-4f42-b17e-f3f870e57f55, c4e57599-ab84-4ff7-aaa0-f7d1ae5602ca, 143cc07b-5be4-4922-9ac2-f98a70fec6c8, 78d471aa-9040-464b-80d6-673183f9a8e9, 7b812097-1746-41c9-9982-58bf1597364f, 75f9d469-aaab-4242-bd1a-badffdf95eb3, 5e31e887-031d-4e3a-a49e-23efe0678a02, efb5c9be-e4b5-43f1-8fcb-31da17c8e36f, 052694c2-73af-42d1-a1e0-7884bfc1ea6e, 374ce4dd-8dd1-4475-83ec-3cb115f5f410, 6b0702fb-1a73-4a07-9d64-7df99ce0ec08, e448b05a-52f0-4191-94b4-6f7b411293ea, 864d9e99-baa7-4dfe-a52c-69f128a6357b, a01482dd-3a61-4d34-8122-9634ca397da8, f99a686d-341e-47ce-99e0-7e28945c8d30, 8534b564-21a5-40f2-8735-d6365bc55013, 2ec453e9-772c-437e-a55c-7023941439cf, e6ded25c-4d94-4f85-a8d2-4d0caf1256d2, 97bfd405-f468-4d2f-8c44-21cf8739f280'}]}"
"{'title': 'CDE Encounter', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c2e1f9d3704d570cde', 'name': 'BARTS HEALTH'}, 'keywords': ['BartsHealth'], 'contactPoint': 'BartsHealth.ResearchDataRequest@nhs.net', 'abstract': ""Locally defined dataset containing details of all patient encounters (IP, OP, DC, Maternity, ED, Direct servcies) recorded within the Trust's EHR system. This includes the coding against these encounters which use ICD10, OPCS4 and SNOMED.""}",3598723f-62fb-4377-9a8b-b264ced1aabd,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '7f7860ee-6235-4e7d-95f3-df692f5d9630'},"{'description': ""Locally defined dataset containing details of all patient encounters (IP, OP, DC, Maternity, ED, Direct servcies) recorded within the Trust's EHR system. 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"{'title': 'National Community Child Health Database (NCCHD)', 'abstract': 'The Child Health System in Wales; includes birth registration and monitoring of child health examinations and immunisations.', 'publisher': {'identifier': '5f3f98068af2ef61552e1d75', 'name': 'SAIL', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'keywords': ['Child Health', 'SAIL', 'NCCH', 'NCCHD']}",20fe153c-a5e5-4991-900e-8fa9988e771a,"{'spatial': ['United Kingdom,Wales'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-4', 'followup': '6 - 12 MONTHS', 'pathway': 'All pathways about child health'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'a5c87cf2-7f14-4183-86a6-b75c9426dd40', '7.0.0': '7fd81823-ee92-49d3-9147-d56515ca2831', '1.0.0': '802c5388-b90c-49b5-ad37-0630b6c65e0f', '5.0.0': '553a0fcb-6bed-493c-a185-fa97dc5f370d', '4.0.0': '0e88bc9d-bdfb-417c-8926-fdc513f5e8da', '3.0.0': '42cb14b5-4edd-4fa8-896a-3d471c234520', '2.0.0': '4bf6312a-176b-42ad-8550-652982638014', '6.0.0': '5e9fba37-017b-4481-bc69-75ef1e005c2f', 'latest': '7fd81823-ee92-49d3-9147-d56515ca2831'}","{'description': 'The Child Health System in Wales; includes birth registration and monitoring of child health examinations and immunisations.\n\nThe dataset brings together data from local Child Health System databases which are held by NHS Trusts and used by them to administer child immunisation and health surveillance programmes.\n\nThe dataset contains all children born, resident or treated in Wales and born after 1987.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/']}",7fd81823-ee92-49d3-9147-d56515ca2831,https://web.www.healthdatagateway.org/dataset/7fd81823-ee92-49d3-9147-d56515ca2831,"{'access': {'dataController': 'Public Health Wales NHS Trust', 'jurisdiction': ['GB'], 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'deliveryLeadTime': '2-6 MONTHS', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'accessRights': ['https://saildatabank.com/application-process/'], 'dataProcessor': 'SAIL Databank'}, 'formatAndStandards': {'vocabularyEncodingScheme': ['NHS WALES NATIONAL CODES'], 'language': ['en'], 'format': ['SQL database table'], 'conformsTo': ['NHS WALES DATA DICTIONARY']}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': ['DHCW'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'RESEARCH SPECIFIC RESTRICTIONS']}}","{'origin': {'source': ['ELECTRONIC SURVEY'], 'collectionSituation': ['COMMUNITY', 'OTHER'], 'purpose': ['STUDY']}, 'temporal': {'startDate': '1989-01-01', 'timeLag': '1-2 MONTHS', 'accrualPeriodicity': 'QUARTERLY', 'endDate': '2021-10-04', 'distributionReleaseDate': '2021-11-02'}}",2020-01-13T14:47:28Z,"[{'observedNode': 'PERSONS', 'measuredValue': '1064369', 'observationDate': '22/09/2021', 'measuredProperty': 'Count'}]",7.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Yes. To any SAIL dataset & reference data.'], 'tools': ['https://conceptlibrary.saildatabank.com/']}",2022-05-27T14:53:15Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 13, 'structuralMetadata.tableName': 13, 'structuralMetadata.tableDescription': 13, 'structuralMetadata.dataElementsCount': 318, 'structuralMetadata.columnName': 318, 'structuralMetadata.columnDescription': 318, 'structuralMetadata.dataType': 318, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '57e11a3d-c475-48c1-b95d-12e8f87e198e', 'description': 'This table provides child examination information, such as height and weight measurements, as well as audio and visual examinatinos. The Child Measurement Programme for Wales is a surveillance programme set up to better understand how children in Wales are growing. The programme uses information collected by school nursing services who were already measuring the heights and weights of all reception class children in Wales. 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"{'title': 'GENOMICS ENGLAND 100K CANCER & COMMON', 'publisher': {'memberOf': 'ALLIANCE', 'contactPoint': 'gecip-help@genomicsengland.co.uk', 'name': 'GENOMICS ENGLAND'}, 'abstract': 'Cancer data are presented for either the patient level cancer diagnosis or “disease type” or the tumour specific sample details of participants in the Cancer arm of the 100,000 Genomes Project.', 'doiName': 'Not Available', 'keywords': ['cancer', 'genomics', 'genome', 'England', 'DNA', 'sequencing', 'data', 'DATA-CAN'], 'contactPoint': 'gecip-help@genomicsengland.co.uk'}",702f0198-bdfe-401e-97f2-35f5d26357ad,"{'typicalAgeRange': '0-150', 'spatial': 'England, UK', 'followup': 'OTHER', 'physicalSampleAvailability': ['DNA', 'TISSUE'], 'pathway': 'Linked datasets cover secondary care.'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.8.0': 'f668e0aa-5607-4bd9-9510-e815d5364337', '2.0.0': '7fdb684d-bb7a-4d0b-8666-9f10510f071f', '1.0.0': '93ffc937-dc5f-4fae-bb75-a8ad19ac3d3e', 'latest': '7fdb684d-bb7a-4d0b-8666-9f10510f071f'}","{'description': 'Cancer data are presented for either the patient level cancer diagnosis or “disease type” or the tumour specific sample details of participants in the Cancer arm of the 100,000 Genomes Project.\n\nData Relating to Cancer Participants:\n\ncancer_participant_disease\n\nFor each cancer participant in the 100,000 Genomes Project, this table includes data about their cancer disease type and subtype.\n\ncancer_participant_tumour\n\nFor each cancer participant’s tumour in the 100,000 Genomes Project, this table contains data that characterises the tumour, e.g. staging and grading; morphology and location; recurrence at time of enrolment; and the basis of diagnosis.\n\ncancer_participant_tumour_\nmetastatic_site\n\nFor each cancer participant in the 100,000 Genomes Project, this table contains the site of their metastatic disease in the body (if applicable) at diagnosis.\n\ncancer_care_plan\n\nFor a proportion of cancer participants in the 100,000 Genomes Project, this table contains information from their NHS cancer care plan on their treatment and care intent, in particular outcomes of MDT meetings and coded connected data (e.g. diagnoses from scans).\n\ncancer_surgery\n\nFor a proportion of cancer participants in the 100,000 Genomes Project, this table contains details of what surgical procedures were had, as well as the specific location of the intervention.\n\ncancer_risk_factor_general\n\nFor a proportion of cancer participants in the 100,000 Genomes Project, this table contains data on general cancer risk factors, namely smoking status, height, weight and alcohol consumption. This table was compiled with input from GeCIP members.\n\ncancer_risk_factor_cancer_specific:\n\nFor a proportion of cancer participants in the 100,000 Genomes Project, this table contains data on specific risk factors related to particular cancer types. This table was compiled with input from GeCIP members.\n\ncancer_invest_imaging:\n\nFor a proportion of cancer participants in the 100,000 Genomes Project, this table contains: coded data on imaging investigations characterising the scan, its modality, anatomical site and outcome; as well as the outcome of the imaging report in free text form.\n\n\nData derived from or relating to tumour samples:\n\ncancer_invest_sample_pathology:\n\nFor a proportion of cancer participants in the 100,000 Genomes Project, this table contains full pathology reports and other related data on and from their tumour samples around diagnosis and characterisation of the cancer. Please note that much of this information is also found in the clinic_sample and cancer_participant_tumour tables.\n\ncancer_specific_pathology:\n\nFor a proportion tumours from cancer participants in the 100,000 Genomes Project, this table contains pathology data specific to that participant’s cancer type. This may provide additional data to the cancer_invest_sample_pathology and cancer_participant_tumour tables.\n\ncancer_systemic_anti_cancer_therapy:\n\nFor a proportion tumours from cancer participants in the 100,000 Genomes Project, this table contains details the regimen and intent of the patients’ chemotherapy.\n\ncancer_invest_circulating_tumour_marker:\n\nFor a proportion tumours from cancer participants in the 100,000 Genomes Project, this table contains biomarker measurements specific to particular cancer types.', 'associatedMedia': ['https://cnfl.extge.co.uk/display/GERE/Genomics+England+Research+Environment', 'https://cb.extge.co.uk/labkey/CohortBrowser/project-begin.view?pageId=Introduction', 'https://youtu.be/Kie3HY8y6AU', 'https://youtu.be/EAjPVcAlGpM', 'https://youtu.be/5QhNjE_hdsQ'], 'isPartOf': '100K Primary Data'}",7fdb684d-bb7a-4d0b-8666-9f10510f071f,https://web.www.healthdatagateway.org/dataset/7fdb684d-bb7a-4d0b-8666-9f10510f071f,"{'access': {'accessService': 'More information about the Genomics England Research Environment can be found here:\nhttps://www.genomicsengland.co.uk/about-genomics-england/research-environment/\nhttps://research-help.genomicsengland.co.uk/display/GERE/1.+The+Genomics+England+Research+Environment\nGenomics England 100k participants have consented to longitudinal lifetime followup and recontact safely through our clinical network.\nBRST (Bioinformatics Research Services) are a team of bioinformatics who know the dataset inside out and provide consultancy projects on a case by case basis.  \nOur network of clinical and medical experts can be made available on case by case basis.\nResearchers have the opportunity to work with our and access the GeCIP network who are a community of world-leading experts in specific cancers and rare diseases.', 'jurisdiction': ['GB'], 'deliveryLeadTime': '2-6 MONTHS', 'dataController': 'GENOMICS ENGLAND', 'dataProcessor': 'GENOMICS ENGLAND', 'accessRights': ['https://www.genomicsengland.co.uk/about-gecip/joining-research-community/'], 'accessRequestCost': 'Fees will be dependent on the type of access that is necessary. Raw data is not eligible for export. Summary-level data may be exported provided that it is approved through the Genomics England Airlock Process'}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'isReferencedBy': ['https://www.genomicsengland.co.uk/about-gecip/publications/'], 'resourceCreator': 'The 100,000 Genomes Project Protocol v3, Genomics England. doi:10.6084/m9.figshare.4530893.v3. 2017.\nPublications that use the Genomics England Database should include an author as: Genomics England Research Consortium. Please see publication policy.', 'dataUseRequirements': ['ETHICS APPROVAL REQUIRED', 'PROJECT SPECIFIC RESTRICTIONS', 'PUBLICATION MORATORIUM'], 'investigations': ['https://research.genomicsengland.co.uk/research-registry/browse/']}, 'formatAndStandards': {'format': ['Multiple Formats Available'], 'conformsTo': ['LOCAL', 'OMOP', 'NHS DATA DICTIONARY', 'OTHER'], 'language': ['en'], 'vocabularyEncodingScheme': ['OPCS4', 'READ', 'SNOMED CT', 'NHS NATIONAL CODES', 'ODS', 'ICD10', 'HPO', 'OTHER']}}","{'temporal': {'startDate': '2014-01-01', 'accrualPeriodicity': 'QUARTERLY', 'distributionReleaseDate': '2020-09-03', 'endDate': '2019-01-01', 'timeLag': '2-6 MONTHS'}, 'origin': {'source': ['EPR', 'ELECTRONIC SURVEY', 'LIMS', 'OTHER'], 'purpose': ['STUDY', 'CARE', 'OTHER'], 'collectionSituation': ['CLINIC', 'OUTPATIENTS', 'IN-PATIENTS']}}",2020-04-07T11:39:23Z,"[{'observedNode': 'Persons', 'measuredValue': '17,339', 'disambiguatingDescription': 'Cancer Participants', 'observationDate': '2020-09-03', 'measuredProperty': 'Count'}, {'observedNode': 'Findings', 'measuredValue': '17,891', 'disambiguatingDescription': 'Cancer Germline - Number of genomes', 'observationDate': '2020-09-03', 'measuredProperty': 'Count'}, {'observedNode': 'Findings', 'measuredValue': '19,333', 'disambiguatingDescription': 'Cancer Tumour - Number of genomes', 'observationDate': '2020-09-03', 'measuredProperty': 'Count'}]",2.0.0,"{'qualifiedRelation': [' HES Accident and Emergency', 'HES Admitted Patient Care', ' HES Outpatient Care', 'Diagnostic Imaging Dataset (DID)', 'Patient Reported Outcome Measures (PROMs)', 'Mental Health Minimum Data Set (MHMDS)', 'Office for National Statistics - Death details data (ONS)', 'Systemic Anti-Cancer Therapy Data Set (SACT)', 'National Radiotherapy Dataset (RTDS)', 'Cancer Registration (AV) tables', 'Cancer waiting times (CWT)', 'Lung Cancer Data Audit (LUCADA)', 'PHE Diagnostic Imaging Dataset (NCRAS_DID)'], 'derivation': ['Multiple'], 'tools': ['https://github.com/genomicsengland']}",2021-01-15T09:59:18Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 18, 'structuralMetadata.tableName': 18, 'structuralMetadata.tableDescription': 16, 'structuralMetadata.dataElementsCount': 370, 'structuralMetadata.columnName': 370, 'structuralMetadata.columnDescription': 369, 'structuralMetadata.dataType': 370, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '8e32f55b-b872-41e5-831e-8326163c8494', 'description': 'For a proportion tumours from cancer participants in the 100,000 Genomes Project, this table contains biomarker measurements specific to particular cancer types.', 'name': 'cancer_invest_circulating_tumour_marker', 'dataElementsCount': 6, 'dataElements': '2170c944-6e10-40c2-b35a-cea5295efa35, 8d88758b-5e2a-4424-9e91-3ab51299d415, beede70c-659c-4b4b-b12b-fa11c9ba058a, 8d8ce954-b389-46d7-ab54-1e77550829e1, 31504cd1-1fa2-4462-8c59-0d5843b3e9f0, 85d7c15b-29b4-4c57-abf0-01e796ba7dcd'}, {'id': 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"{'title': 'Outpatient Dataset', 'publisher': {'identifier': '5f3f98068af2ef61552e1d75', 'memberOf': 'ALLIANCE', 'name': 'SAIL'}, 'keywords': ['Outpatient', 'Dataset', 'SAIL', 'NCS', 'National Core Study', 'COVID-19', 'OPDW'], 'abstract': 'Attendance information for all hospital outpatient appointments.', 'contactPoint': 'SAILDatabank@swansea.ac.uk'}",d331159b-b286-4ab9-8b36-db39123ec229,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150', 'spatial': ['https://www.geonames.org/2634895/wales.html'], 'followup': '1 - 10 YEARS', 'pathway': 'Single tier of care - Secondary care outpatients'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '56b8aead-d1f4-4cb9-b9bc-ed35e57aff62', '9.0.0': '8193e951-2ed8-4ccf-9fe5-5c2e6f933d60', '1.0.0': '2e95ed72-1931-4ca5-9c2f-427d4a1e915a', '6.0.0': '662ed97c-23bf-43dc-88ba-2206d110d119', '8.0.0': '68b34d8f-debe-445b-9ebd-a5a05f277d13', '7.0.0': '8e6d7fcc-a4ad-4a32-bbc2-fe8631a38b43', '5.0.0': '261b3424-2168-46ae-aaba-849fe43c70ff', '4.0.0': '5f7df31b-b69e-4eb3-9eeb-3a3ab1f157c3', '3.0.0': '647ae468-f7bb-4d54-b053-2bd9034a2c28', '2.0.0': '2e0d71a2-3d09-4cf4-beb3-df3ec1b1f240', 'latest': '8193e951-2ed8-4ccf-9fe5-5c2e6f933d60'}","{'description': 'Attendance information for all NHS Wales hospital outpatient appointments.\n\nThe data are collected and coded at each hospital. 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Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.']}, 'usage': {'isReferencedBy': ['Carter et al., (2019); Identifying cerebral palsy from routinely-collected data in England and Wales. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6556471/'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['NHS Wales’ Informatics Service (NWIS)']}, 'formatAndStandards': {'language': ['en'], 'conformsTo': ['LOCAL'], 'format': ['SQL database table'], 'vocabularyEncodingScheme': ['LOCAL', 'OPCS4', 'NHS NATIONAL CODES', 'NHS WALES NATIONAL CODES', 'ICD10']}}","{'temporal': {'timeLag': '2-4 WEEKS', 'accrualPeriodicity': 'QUARTERLY', 'distributionReleaseDate': '2019-09-17', 'startDate': '2004-04-20', 'endDate': '2021-07-01'}, 'origin': {'source': ['EPR'], 'purpose': ['CARE', 'AUDIT', 'ADMINISTRATIVE', 'FINANCIAL', 'OTHER'], 'collectionSituation': ['OUTPATIENTS']}}",2020-01-13T14:47:29Z,"[{'observedNode': 'EVENTS', 'measuredValue': '3000000', 'observationDate': '01/09/2021', 'measuredProperty': 'Count'}]",9.0.0,"{'derivation': ['Not Available'], 'tools': ['https://conceptlibrary.saildatabank.com/'], 'qualifiedRelation': ['Yes. To any SAIL dataset & reference data.']}",2021-09-17T16:28:54Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 3, 'structuralMetadata.tableName': 3, 'structuralMetadata.tableDescription': 3, 'structuralMetadata.dataElementsCount': 52, 'structuralMetadata.columnName': 52, 'structuralMetadata.columnDescription': 52, 'structuralMetadata.dataType': 52, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '6365e401-4a93-4399-b3e7-1bdc7ad3c552', 'description': 'Data related to the Out Patient Dataset Wales. \n\nNote, outpatient tables have to be joined based on att_id_e,case_rec_num_e,atten_dt, and prov_unit_cd', 'name': 'outpatients', 'dataElementsCount': 35, 'dataElements': '8fc97e4d-a450-44aa-9f6e-44f5365d3181, fdf20508-5c23-45b6-ad9e-6a3313d2f2f2, 484f136b-36b4-4f27-b6e4-4290483a7f68, 42b7ed60-6092-43cf-a8b7-a6e1d31f74dd, b1c9aa0d-9d1c-4dbb-be39-c279736eebce, 84eff4bc-7c08-492e-be97-8dabebb2d102, 45b9ede2-4b75-494a-a1f4-194b0ecf9804, 4cc0cbce-c479-40cc-8c37-66c513951097, 0ace344c-0823-44d9-9845-0202e7c76157, c3b46220-b6bb-45f7-a951-ada559a37b5b, d0c40b43-b12e-49b2-b9b0-5422021d1c23, a9466fd7-f9fb-4c9b-8a71-8da738f92be7, 380d4191-e493-4b87-b4ad-02edd452b16f, 009a6daa-ab11-46ff-821e-993580960665, 151d9154-5414-499c-8974-4d915bfd1924, f0747db9-41d2-412b-9854-796a9eb9c8fb, 53fefd58-a1ba-4be1-adb8-7e98c9471b84, c4ca200d-f4c8-4cb3-8d86-ced31b65ec11, 409a3d37-6108-466c-b17e-e3bc8a086aa6, 0db2a5d4-c1ce-446f-9dae-e49f3cfa48c8, 2f747381-de62-4388-b190-e0be9f1295b7, e694bbdb-724d-41d7-9f10-6c0451f0d90a, 8d2c557d-0b01-4ae6-83c1-59b4b23255f4, 68fd1e5d-04e5-4fbc-b39a-604123890249, c98dd19d-6857-4aff-92d7-856185de5c0e, 7c672d5b-b218-4abe-aaaf-6f1123c544a2, 97016c8f-95f0-45f7-8061-468a222f4f73, 1d0d09ea-19fb-46a2-9aca-26128f7cc46d, 4dcfa318-ea33-4712-aced-9ac9eaadd151, f63729fc-f321-4e6e-87b5-45f0f55b40fc, 6f938572-178f-43b0-b538-49c06b7e146f, d7999d48-a5a8-431e-9d52-28a4d9fe562b, 794e4dee-2b7b-41ea-a972-c49577bc59e8, 2cade110-66e2-48a0-87a9-e29d77631185, 1aa26aa0-586e-44a2-a888-765deb3ba442'}, {'id': '8606f591-77bb-4a8f-a198-c6861ab9ced1', 'description': 'Diagnostic data related to the Out Patient Dataset Wales.\n\nNote, outpatient tables have to be joined based on att_id_e,case_rec_num_e,atten_dt, and prov_unit_cd', 'name': 'outpatients_diag', 'dataElementsCount': 9, 'dataElements': '32f53fc9-077d-4e83-8f5f-bc44e149eaca, 53449fd5-90ec-41be-8078-22589e628a41, 1d11b200-f847-4b4f-bf6b-f2925b109e6a, 2bf0fd97-4800-4a9e-b26d-d1ee7a653c29, 4483ab5e-938c-41cd-b9f2-a85b56feb298, 3dae5324-a1d4-4f46-9730-0b854f2d436c, 94822649-c3f6-49fc-b4f7-e06684eb5017, e7846a93-a630-466f-ab72-070a087581d1, 2c1add47-9b86-493d-8514-86e90c4df1bc'}, {'id': '91dcc643-0b44-4b21-a02a-4aebdf821557', 'description': 'Operation data related to the Out Patient Dataset Wales.\n\nNote, outpatient tables have to be joined based on att_id_e,case_rec_num_e,atten_dt, and prov_unit_cd', 'name': 'outpatients_oper', 'dataElementsCount': 8, 'dataElements': 'd23f221c-ce95-4f5b-8fbe-d8ee29acacfe, 714af4a7-b7f3-44c4-a9cb-8e89de7c595e, a94f48b9-bdd1-4f81-87ab-c012171d5a3e, 5aa9ed66-acf5-4915-96ac-3ff0e966dd84, 8cb17f35-e38c-4dfe-9837-383cae7df071, 0d3287c5-30a4-4eaf-b504-d7a3e1dee937, 7fc065dc-7e85-4a1f-8470-0c3b215f3163, 18860097-9f06-4dcb-97de-91c42a42f26b'}]}"
"{'title': 'Weekly SUS Outpatients Dataset', 'publisher': {'name': 'DISCOVER NOW', 'memberOf': 'HUB', 'identifier': '607db9c3e1f9d3704d570cfa'}, 'contactPoint': 'researchers@registerfordiscover.org.uk', 'abstract': 'The NWL weekly SUS OP linked table is a weekly submission from our 4 main providers (Imperial College Healthcare Trust, Hillingdon Hospital, Chelsea & Westminister Hospital and London North West Hospital) and contains Outpatient records of care within NWL', 'keywords': ['Outpatient Care', 'Outpatients', 'Outpatient Care Data', 'Discover-NOW', 'Integrated Care', 'Integrated Care Record', 'Pathway', 'Real World data', 'Linked longitudinal']}",572cd3e2-9119-40ff-ab2e-49e8a0a02ab8,"{'pathway': 'This dataset contains all Outpatient appointments for NWL patients. Each patient will be identified using an unique patient key, this can be used to link to other Discover-NOW datasets that will help track the patient pathway', 'spatial': ['https://www.geonames.org/2646895/hillingdon.html', 'https://www.geonames.org/2634341/city-of-westminster.html', 'https://www.geonames.org/3333157/royal-kensington-and-chelsea.html', 'https://www.geonames.org/3333151/harrow.html', 'https://www.geonames.org/3333132/brent.html', 'https://www.geonames.org/2650567/ealing.html', 'https://www.geonames.org/3333155/hounslow.html', 'https://www.geonames.org/3333149/hammersmith-and-fulham.html'], 'typicalAgeRange': '0-150', 'followup': '> 10 YEARS', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '81c28c63-7cbb-49ce-86b4-c83e1c15fdba'},"{'description': 'Initially this data is collected during a patient\'s time at hospital as part of the Commissioning Data Set (CDS). This is submitted to NHS Digital for processing and is returned to healthcare providers as the Secondary Uses Service (SUS) data set and includes information relating to payment for activity undertaken. It allows hospitals to be paid for the care they deliver. \nThis same data can also be processed and used for non-clinical purposes, such as research and planning health services. Because these uses are not to do with direct patient care, they are called \'secondary uses\'. This is the SUS data set.\nSUS data covers all NHS Clinical Commissioning Groups (CCGs) in England, including:\n1. private patients treated in NHS hospitals\n2. patients resident outside of England\n3. care delivered by treatment centres (including those in the independent sector) funded by the NHS\n\nEach SUS record contains a wide range of information about an individual patient admitted to an NHS hospital, including:\n1. clinical information about diagnoses and operations\n2. patient information, such as age group, gender and ethnicity\n3. administrative information, such as dates and methods of admission and discharge\n4. geographical information such as where patients are treated and the area where they live\n\nNHS Digital apply a strict statistical disclosure control in accordance with the NHS Digital protocol, to all published SUS data. This suppresses small numbers to stop people identifying themselves and others, to ensure that patient confidentiality is maintained.\n\nWho SUS is for\nSUS provides data for the purpose of healthcare analysis to the NHS, government and others including:\n\nThe Secondary Users Service (SUS) database is made up of many data items relating to A&E care\ndelivered by NHS hospitals in England. Many of these items form part of the national Commissioning Data Set (CDS), and are generated by the patient administration systems within each hospital.\n1. national bodies and regulators, such as the Department of Health, NHS England, Public Health England, NHS Improvement and the CQC\n2. local Clinical Commissioning Groups (CCGs)\n3. provider organisations\n4. government departments\n5. researchers and commercial healthcare bodies\n6. National Institute for Clinical Excellence (NICE)\n7. patients, service users and carers\n8. the media\n\nUses of the statistics\nThe statistics are known to be used for:\n1. national policy making\n2. benchmarking performance against other hospital providers or CCGs  \n3. academic research\n4. analysing service usage and planning change\n5. providing advice to ministers and answering a wide range of parliamentary questions\n6. national and local press articles\n7. international comparison\n\nMore information can be found at \nhttps://digital.nhs.uk/data-and-information/data-tools-and-services/data-services/hospital-episode-statistics\nhttps://digital.nhs.uk/data-and-information/publications/statistical/hospital-accident--emergency-activity""', 'isPartOf': 'SUS', 'associatedMedia': ['https://imperialcollegehealthpartners.com/discover-now/north-west-london-covid-19-data-repository/', 'https://www.nwlondonccgs.nhs.uk/professionals/whole-systems-integrated-care-wsic-dashboards-and-information-sharing/information-de-identified-users']}",81c28c63-7cbb-49ce-86b4-c83e1c15fdba,https://web.www.healthdatagateway.org/dataset/81c28c63-7cbb-49ce-86b4-c83e1c15fdba,"{'access': {'accessRights': ['https://imperialcollegehealthpartners.com/discover-now/nwl-covid-data-access/'], 'dataProcessor': 'North West London CCG\nNorth East London Commissioning Support Unit', 'accessService': ""Researchers will have access to a VDI environment with a specific username and password. The researchers will get access to the datasets that is present in the hub's catalogue and would be able to carry out their research within the safe haven. There are restrictions applied which prevents the researchers from taking data out of the safe haven, once the research/analysis is completed the admin team will need to be contacted for taking the analysis off the safe haven"", 'dataController': 'Joint data controller model across North West London', 'deliveryLeadTime': '1-2 MONTHS', 'jurisdiction': ['GB', 'GB-WLS']}, 'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['NHS NATIONAL CODES', 'LOCAL', 'OPCS4'], 'format': ['Excel', 'SQL', 'Tableau', 'R'], 'conformsTo': ['LOCAL']}, 'usage': {'investigations': ['https://www.registerfordiscover.org.uk/researchers/discover-for-researchers-and-industry'], 'dataUseRequirements': ['COLLABORATION REQUIRED', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': ['NO RESTRICTION'], 'resourceCreator': ['NHS Brent CCG', 'NHS NWL CCG', 'Discover-NOW'], 'isReferencedBy': ['Bottleet al. BMC Medical Informatics and Decision Making (2020) 20:71 https://doi.org/10.1186/s12911-020-1082-7']}}","{'origin': {'collectionSituation': ['OUTPATIENTS'], 'source': ['EPR'], 'purpose': ['CARE', 'ADMINISTRATIVE']}, 'temporal': {'timeLag': '1-2 WEEKS', 'startDate': '2021-04-01', 'accrualPeriodicity': 'WEEKLY', 'distributionReleaseDate': '2021-04-01'}}",2022-01-17T10:23:28Z,"[{'observedNode': 'PERSONS', 'disambiguatingDescription': 'Distinct patients', 'observationDate': '29/11/2021', 'measuredProperty': 'Count', 'measuredValue': '618044'}]",1.0.0,"{'derivation': ['Long Term Conditions', 'Electronic Frailty Index', 'Q-Admissions', 'Patient Segments', 'Risk Segments'], 'tools': ['https://nww.analytics.southlondoncsu.nhs.uk/#/site/ICSAnalytics/views/WaitingListPTL/RTTPopulationHealth?:iid=1'], 'qualifiedRelation': ['Each patient will be identified by an unique patient key that can be used to link to all other datasets available within Discover-NOW hub']}",2022-01-17T10:23:28Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 42, 'structuralMetadata.columnName': 42, 'structuralMetadata.columnDescription': 42, 'structuralMetadata.dataType': 42, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'a44b4017-1555-407f-9428-7216eaf1d2eb', 'description': 'The NWL weekly SUS Outpatients linked table is a weekly submission from our 4 main providers (Imperial College Healthcare Trust, Hillingdon Hospital, Chelsea & Westminister Hospital and London North West Hospital) and contains Outpatient records of care within NWL.', 'name': 'sus_cds_weekly_Outpatients', 'dataElementsCount': 42, 'dataElements': '8163965a-759c-4f5c-a1e5-bbce76f31191, f61c6925-95ff-4134-a4f7-414b14752b90, 706a0a99-4254-4dc1-933c-2cf421ea404b, 53d78dcb-d0c0-4882-b177-70158cabbeb4, c52e438a-6b33-4026-a2ed-a67551f817e4, 4102cdf1-56a1-460d-8e9e-96bc05dc3ad5, 87c4b7f9-e26e-45dc-8d65-0681354d82ee, 6ed9eaf5-f21c-4200-bfe4-069cd31c9d74, 5628aa14-3451-49bc-962a-98e06714de8f, 1440a285-8330-48bb-b88b-8f77956ab20d, 3d60a379-dc2f-4f9d-b9e7-3f95ab36b940, ef5c1110-1344-49fc-a483-76c132b90e16, fd470053-84e8-4bb7-a78c-3c12e61eff76, c825ee1a-fe62-42fe-a268-fc7ab84702ad, 27b3bf73-111a-4e82-b56c-ed4ebd9b4f90, 574d3aa3-174c-482a-9c8c-68c7f4e60ce3, 0c096a82-4e76-4c60-8e25-5ad1408dc44d, c933078e-437f-4345-8a08-f79bacad43c2, 482c3df0-f4fb-413b-8316-1ae1bc32c638, 5ed7d1af-9729-4560-a519-bf7ec9c6e107, dec0b392-addb-4c4b-a325-bb97eba5798c, d7e7398e-86bd-4b5e-98ae-d29e4919b927, 9a248903-7814-4997-a5ce-58d45e0db76b, 267ca33a-9333-4069-af26-8ede4ee822ab, 6c9227f3-8855-4453-b683-d61646c6d166, 26275a9c-3396-4bf9-ae97-54b681d799af, 7780544d-46ff-408f-af9a-d4f320d46531, 73977a17-844d-4c37-9ff6-5be4fe603685, a23e8144-8ea5-40f0-9025-0f7b0b69da76, ad1f3233-a7e8-4c1f-9230-354a369f20e4, 39f912c2-160e-406b-80e3-f1fa8be1d11d, 8202ba38-98b5-47aa-a7f3-9e6c03a5ba7b, 5c1ac240-4e11-4940-ae89-759e27283d98, 86da8abe-d6f6-43d3-a7cc-fd9f52066966, 6f0fc1d6-6086-49f7-98cf-308244c38326, b2e7e9c2-cd0e-4f3b-8bff-e3c40e8cfd8a, b9066a7f-db5f-408e-bb15-9c53c2f8cab9, 86959c53-df56-4bf5-886c-8241430621fd, 1ad180ca-3692-4873-9206-7909764123d3, 2c7eaee7-9af0-4c42-8b79-511264da8483, f73548d9-ad66-450c-8258-64fc3c4c1cea, c0f6664a-56e1-4398-b62b-eaf63d42f360'}]}"
"{'title': 'Risk and outcomes of coagulopathies in acutely unwell adults', 'contactPoint': 'PIONEER@UHB.NHS.UK', 'doiName': 'https://web.www.healthdatagateway.org/dataset/bf3fe16c-5377-4571-b5a5-7aa7e796594c', 'publisher': {'contactPoint': 'PIONEER@UHB.NHS.UK', 'memberOf': 'HUB', 'name': 'PIONEER'}, 'keywords': ['NHS', 'Acute', 'VTE', 'HAT', 'venous', 'arterial', 'bleed', 'clots', 'clotting', 'INR', 'APPT', 'prothrombin', 'platelets', 'thrombophlebitis', 'COVID', 'pneumonia', 'pneumonitis', 'NEWS2', 'deterioration', 'alert', 'SEWS', 'oxygen', 'non-invasive ventilation', 'high flow oxygen', 'NIV', 'CPAP', 'patient', 'acute hospitals', 'inpatient', 'ethnicity', 'multimorbidity', 'blood', 'biomarkers', 'physiology', 'demographics', 'treatments', 'aspirin', 'anti-coagulants', 'vitamin k', 'transfusions', 'interventions', 'outcomes', 'death', 'longitudinal', 'vital signs'], 'abstract': 'Patients admitted with a bleeding or clotting disorder. Granular  care pathways.  Multi-morbidity, investigations, interventions and treatments. Serial physiology, blood biomarkers, physiotherapy, outcome. Deeply phenotyped.'}",bf3fe16c-5377-4571-b5a5-7aa7e796594c,"{'typicalAgeRange': '10-110', 'pathway': 'The West Midlands (WM) has a population of 5.9million & includes a diverse ethnic, socio-economic mix. There is a higher than average percentage of minority ethnic groups with Birmingham having a population which is >40% non-white. WM has a large number of elderly residents but Birmingham is one of the youngest cities in the UK.  There is social deprivation and Birmingham’s population suffers with particularly high rates of illness; including cerebrovascular Disease, physical inactivity, obesity, smoking, hypertension, ischaemic heart disease & diabetes.  There are also high levels of rare diseases, especially immunometabolic conditions.   The patients included in this dataset are representative of this diverse population and also include a wide age-range.  University Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & 100 ITU beds. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.   University Hospitals Birmingham NHS Foundation Trust is a Comprehensive Care Haemophilia Centre (CCC) and cares for a wide range of inherited bleeding disorders, including Haemophilia A and B, von Willebrand Disorder and other clotting factor and platelet disorders.  UHB also has a mandated VTE risk and prescription prompt in the medical clerking, capturing risk factors and contraindications for anticoagulation.\nThis dataset includes the patient journey from admission to hospital to outcome for patients with known clotting or bleeding disorders or who develop them as a result of illness, trauma or medical therapies/interventions.  The data includes granular demography and co-morbidity, presenting symptoms and diagnoses, serial physiology and blood biomarkers, all investigations, all prescribed and administered treatments and outcomes.   It can be supplemented with preceding and following health care contacts, to understand the risk for the acute admission and the subsequent impact on health after discharge. Although primarily secondary care, this dataset can be supplemented with ambulance and primary care data on request.  PIONEER can also offer synthetic data, images and access to a secure Trusted Research Environment for analytics and AI.   PIONEER can assist with analytics, model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services', 'spatial': 'West Midlands Region, UK', 'followup': 'OTHER', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'e150d608-3b34-44a6-a56b-31463a1ba41c', '1.0.0': '81c54c5a-ceb1-487c-820a-437b4dd002ca', 'latest': '81c54c5a-ceb1-487c-820a-437b4dd002ca'}","{'description': 'Risk and outcomes of coagulopathies & arterial/venous thrombosis in acutely unwell patients\nDataset number 12.0\n\nCoagulopathies and bleeding disorders can reflect hereditary conditions such as Haemophilia or von Willebrand disease, be associated with other diseases such as liver conditions, sepsis, trauma or be iatrogenic, related to therapies or their side effects.   Hospital associated venous thromboembolic (VTE) events remain common despite well known risk factors and effective prophylactic treatments. There are a number of blood biomarkers associated with coagulopathies, as well as genetic tests and treatments.  This dataset focuses on the acute presentation of coagulopathies, including in people with known bleeding/clotting disorders and in people for present with a new clotting or bleeding events during an acute presentation.\n\nPIONEER geography\nThe West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix.  University Hospitals Birmingham NHS Foundation Trust is a Comprehensive Care Haemophilia Centre (CCC) and cares for a wide range of inherited bleeding disorders, including Haemophilia A and B, von Willebrand Disorder and other clotting factor and platelet disorders.  UHB also has a mandated VTE risk and prescription prompt in the medical clerking, capturing risk factors and contraindications for anticoagulation.\n\nEHR. UHB is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.  \n\nScope: All patients admitted with coagulopathy or bleeding disorders (chronic or acute) from 2000 onwards.  The dataset includes highly granular patient demographics & co-morbidities taken from ICD-10 & SNOMED-CT codes.  Serial, structured data pertaining to acute care process (timings, staff grades, specialty review, wards), presenting complaint, diagnosis of TE or bleeds, clotting parameters, D-Dimers, acuity, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations), all blood results, imaging reports, all prescribed & administered treatments (fluids, blood products, procedures), all outcomes.  \n\nAvailable supplementary data:  Matched controls; ambulance, synthetic data. \n\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://www.pioneerdatahub.co.uk/wp-content/uploads/Coagulopathy-Non-OMOP-infographic-V1.pdf']}",81c54c5a-ceb1-487c-820a-437b4dd002ca,https://web.www.healthdatagateway.org/dataset/81c54c5a-ceb1-487c-820a-437b4dd002ca,"{'access': {'deliveryLeadTime': 'LESS 1 WEEK', 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'accessRequestCost': 'www.pioneerdatahub.co.uk/data/data-services-costs/', 'jurisdiction': 'GB', 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'dataProcessor': 'NOT APPLICABLE'}, 'formatAndStandards': {'vocabularyEncodingScheme': ['OPCS4', 'SNOMED CT', 'ICD10'], 'format': ['SQL'], 'conformsTo': 'LOCAL', 'language': 'en'}, 'usage': {'dataUseLimitation': 'GENERAL RESEARCH USE', 'resourceCreator': 'This publication  uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)', 'dataUseRequirements': 'PROJECT SPECIFIC RESTRICTIONS'}}","{'origin': {'source': 'EPR', 'purpose': 'CARE', 'collectionSituation': 'IN-PATIENTS'}, 'temporal': {'distributionReleaseDate': '2020-12-21', 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"{'title': 'Inflammatory Bowel Disease datasets - Data profiling GWM', 'publisher': {'contactPoint': 'Sam.Rising@nottingham.ac.uk', 'identifier': '6214e1ff39af25bbdff24338', 'memberOf': 'ALLIANCE', 'name': 'NIHR Nottingham Biomedical Research Centre'}, 'keywords': ['Inflammatory Bowel Disease', ""Crohn's disease"", 'Imaging', 'bio-sample', 'Active', 'inactive', 'Patient information'], 'abstract': 'Imaging and bio-sample data sets related to patients with active and inactive Inflammatory Bowel Disease', 'contactPoint': 'mszgwm@exmail.nottingham.ac.uk'}",c3a75213-e310-4d32-81bb-fe9cff43ef2e,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '81d82bed-37f3-4975-ac21-5fcc1090853f'},{'description': 'Imaging and bio-sample data sets related to patients with active and inactive Inflammatory Bowel Disease'},81d82bed-37f3-4975-ac21-5fcc1090853f,https://web.www.healthdatagateway.org/dataset/81d82bed-37f3-4975-ac21-5fcc1090853f,"{'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['DICOM'], 'format': ['Image'], 'language': ['en']}, 'access': {'jurisdiction': ['GB-ENG'], 'dataController': 'Gordon Moran', 'accessRights': ['In Progress']}}","{'temporal': {'startDate': '2015-01-01', 'timeLag': 'NOT APPLICABLE', 'accrualPeriodicity': 'IRREGULAR', 'endDate': '2022-03-10'}}",2022-04-29T13:51:08Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '200', 'disambiguatingDescription': 'DICOM', 'observationDate': '04/03/2022', 'measuredProperty': 'Count'}]",1.0.0,,2022-04-29T13:51:09Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Research Donors Ltd', 'keywords': ['Research Donors Ltd', 'Collection', 'Blood', 'UKCRC Tissue Directory', 'Fit and well'], 'publisher': {'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE', 'contactPoint': 'administration@researchdonors.co.uk'}, 'doiName': 'Not Available', 'abstract': 'Collection of samples and data across the following diseases: Fit and well', 'contactPoint': 'administration@researchdonors.co.uk'}",fcb62cb3-c876-47a3-961e-fb27c6f718fa,"{'spatial': 'England', 'typicalAgeRange': 'Not Known', 'physicalSampleAvailability': ['IN PROGRESS']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': 'ea07f115-9f70-4c21-a373-247a1ca906f0', '3.0.0': '826114ca-2563-4c0c-b023-3417ead32956', '0.0.1': 'a191fdaf-eb55-4394-aacd-8ae1a005925b', '1.0.0': 'f10304ff-cdba-46d6-8371-ce1df324d32b', 'latest': '826114ca-2563-4c0c-b023-3417ead32956'}","{'description': 'For researchers   \nBlood collection\nWe collect blood from donors aged between 18-60, who have been screened to ensure that it is safe for them to donate, that they are in good health, and not taking medications that might interfere with experiments.\nDonors will have given consent for their samples to be used in a wide range of biomedical research applications, including genetic research and that undertaken by commercial organisations.\nWe are also able to collect samples from specific donors, for example within a certain age range, ethnicity or with a specific blood group. We can collect samples into a wide range of anticoagulant tubes, blood bags and other devices as required.\nProcessing\nWe use advanced technologies in our laboratory to test donated blood samples and to process them into the formats which are most useful to researchers. These include:\nWhole blood\n From a single tube of whole blood in a specific anticoagulant tube, up to a full bag of blood we can collect the exact volume of blood you need from donors best suited to your study and deliver it within precisely defined timeframes at the best temperature for your need.\nBuffy coat\n We routinely process whole blood units into buffy coat preparations which are used as a source of PBMCs by our clients. We can also process smaller volumes of blood from blood collection tubes into buffy coat.\nPlasma\n We can either collect a specific volume of blood in the anticoagulant of your choice and prepare plasma, or you can source plasma samples that we have banked from a wide selection of donors for screening purposes.\nSerum\n We can either collect a specific volume of blood and prepare serum to suit your needs, or you can select from serum samples that we have previously banked from a wide selection of donors.\nPBMCs\n We are preparing PBMCs from whole units of blood within a very short timeframe from venepuncture (typically processing begins within 1 hour). PBMCs are produced using a density centrifugation, characterized and frozen in a proprietary freezing solution designed to maximise cell viability.\nCustom services\n We can develop specific processes to suit your exact requirements, so please get in contact if there is something specific you need for your research', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",826114ca-2563-4c0c-b023-3417ead32956,https://web.www.healthdatagateway.org/dataset/826114ca-2563-4c0c-b023-3417ead32956,"{'formatAndStandards': {'vocabularyEncodingScheme': ['NULL'], 'language': ['en'], 'conformsTo': ['NULL'], 'format': ['In Progress']}, 'access': {'accessRequestCost': 'Not specified', 'jurisdiction': 'GB-ENG', 'dataController': 'QMS ISO 9001', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'dataProcessor': 'Not Applicable', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED'}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}}","{'temporal': {'startDate': '2018-01-01', 'distributionReleaseDate': '2019-11-28', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:16:38Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:13:06Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'NHS Tayside and Fife Immunology (Extractable)', 'keywords': ['Immunology ', 'HIC'], 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d1f', 'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE'}, 'contactPoint': 'hicsupport@dundee.ac.uk', 'abstract': 'NHS Tayside and NHS Fife laboratory data. Tayside 1999 – Current; Fife: 2005 - Current.'}",39055449-c074-4b58-adb2-b1c0d2441c4d,"{'typicalAgeRange': '0-150', 'followup': 'UNKNOWN', 'spatial': ['https://www.geonames.org/2636157/tayside-region.html'], 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'c00f43de-5b36-4db8-80ec-66d61b216dc5', '3.0.0': '8286eef9-0533-488e-bf19-8fc0fa1dd00b', '1.0.0': '660ae034-5631-4fdb-8af5-cf39015c12f8', '2.0.0': 'f57d92d9-5288-4b4d-9790-49863e8b9232', 'latest': '8286eef9-0533-488e-bf19-8fc0fa1dd00b'}","{'description': 'This data is provided in a format based upon the SCI-Store system. This is a complex dataset which is supplied in a hierarchical form, this extract is a flattening of that hierarchy by HIC.', 'isPartOf': 'University of Dundee Health Informatics Centre'}",8286eef9-0533-488e-bf19-8fc0fa1dd00b,https://web.www.healthdatagateway.org/dataset/8286eef9-0533-488e-bf19-8fc0fa1dd00b,"{'access': {'accessRights': ['https://www.dundee.ac.uk/hic/governanceapprovalsupport/'], 'deliveryLeadTime': 'OTHER', 'accessService': 'HIC has implemented a remote-access ""Safe Haven"" environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details are available via the following link:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/', 'jurisdiction': ['GB-SCT'], 'dataController': 'University of Dundee'}, 'usage': {'dataUseRequirements': ['DISCLOSURE CONTROL'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'format': ['Database']}}","{'temporal': {'distributionReleaseDate': '2021-09-14', 'timeLag': 'NOT APPLICABLE', 'accrualPeriodicity': 'STATIC', 'endDate': '2018-08-11', 'startDate': '1999-01-02'}, 'origin': {'source': ['ELECTRONIC SURVEY'], 'purpose': ['CARE'], 'collectionSituation': ['PRIMARY CARE']}}",2020-06-03T12:56:51Z,"[{'observedNode': 'PERSONS', 'measuredValue': '3003000', 'disambiguatingDescription': '3003000 patients in the dataset', 'observationDate': '14/09/2021', 'measuredProperty': 'COUNT'}]",3.0.0,,2021-09-17T16:28:01Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 20, 'structuralMetadata.columnName': 20, 'structuralMetadata.columnDescription': 20, 'structuralMetadata.dataType': 20, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '58f44778-adac-480f-b0e1-ae2651de18b5', 'description': 'This data is provided in a format based upon the SCI-Store system. This is a complex dataset which is supplied in a hierarchical form, this extract is a flattening of that hierarchy by HIC.', 'name': 'Immunology (Extractable Immunology)', 'dataElementsCount': 20, 'dataElements': '266681c6-4c6e-4d4d-8b15-254dc28715db, 608e6efc-95c2-4fd9-9ea4-1a9fab0a84ec, 8566a937-e444-4cfb-a3ba-8eead2f8684f, d5c59511-7df8-4737-96c7-780c3c4471f0, cd57c389-8ef7-4d5b-9871-7e369c30fe84, 5e76f7cc-f867-4b19-8eea-1e4b4b65429d, d136d6d6-bb04-4e20-917e-bb1afedad77e, 9fc8c2f3-f5b2-47fe-b376-4e2e53263140, 7deece3d-187c-4f8a-bf38-43d488c2e09d, 5539d8cd-0792-4cd0-898a-987f13aad1e4, a8ea80fa-6051-41fb-817b-4791797ffc7e, 4b3f1e5d-17b7-4e45-a246-3404c98d7610, 971e93df-caa9-4d32-9920-33e081fa0101, 1c99f9c8-a88a-4a1e-b945-c713b01ddf45, f69e7c49-bd7b-4a5e-bbcf-c8bf9dd47a91, 36a80ff7-c77e-4e2b-8a1d-f6cf93ad5f98, 7fc09396-949c-4ac3-9601-46cf933c4acc, 8c755489-061e-4b57-b67e-c3c9d6cb0c11, e2988805-84bb-4895-8f9b-7f7e271061d4, 5d229273-c3bd-4725-b730-188774c8bd79'}]}"
"{'title': 'Reasons for delay in seeking care for pneumonia in children under five', 'abstract': 'Our aim is to understand the factors responsible for delayed care seeking for pneumonia in selected communities in Pakistan with an objective to develop interventions involving counseling provided by LHW’s to bring about positive behavior change.', 'publisher': {'identifier': '607db9c2e1f9d3704d570ce6', 'name': 'BREATHE', 'memberOf': 'HUB'}, 'contactPoint': 'RESPIRE@ed.ac.uk', 'keywords': ['Caregivers', 'BREATHE', 'Pneumonia', 'RESPIRE', 'Pakistan']}",46f50b9b-b8e2-4ff1-a1b3-779174c3d032,"{'spatial': ['https://www.geonames.org/1168579/islamic-republic-of-pakistan.html'], 'typicalAgeRange': '18-150', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '2186362b-2442-4e36-80d5-b2205bf87b95', '4.0.0': '828bc515-6b42-4492-a77e-cf20226ba041', '2.0.0': '09e8e407-82b4-4ed4-b296-53810472cbe9', '3.0.0': 'c9162927-0dbc-423c-a681-1ad7a43bfe9c', '0.0.1': '985467cb-0381-4e5c-b725-2e89e7e96d27', 'latest': '828bc515-6b42-4492-a77e-cf20226ba041'}","{'description': 'Around 36% of deaths due to pneumonia in children under five occur at level of the household without ever reaching a healthcare provider. Our aim is to understand the factors responsible for delayed care seeking for pneumonia in selected communities in Pakistan with an objective to develop interventions involving counseling provided by LHW’s to bring about positive behavior change. Qualitative in depth interviews with mothers of under five children and focus group discussions with fathers and grandmothers of under five children were conducted.Data was collected from respondents residing in urban and rural settings from selected communities in Punjab, KPK, Sindh, Federal and AJK.\n\nFor further information, see: https://www.ed.ac.uk/usher/respire/acute-respiratory-disorders/care-seeking-pneumonia', 'isPartOf': 'BREATHE', 'associatedMedia': ['https://www.ed.ac.uk/usher/respire/acute-respiratory-disorders/care-seeking-pneumonia']}",828bc515-6b42-4492-a77e-cf20226ba041,https://web.www.healthdatagateway.org/dataset/828bc515-6b42-4492-a77e-cf20226ba041,"{'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': ['RESPIRE Collaboration']}, 'access': {'accessService': 'Access is managed on a project-by-project basis. Contact the RESPIRE team', 'accessRights': ['https://www.ed.ac.uk/usher/respire/about/projects'], 'jurisdiction': ['PK'], 'dataProcessor': 'RESPIRE', 'dataController': 'RESPIRE'}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'format': ['PDF'], 'vocabularyEncodingScheme': ['LOCAL']}}","{'temporal': {'timeLag': 'NOT APPLICABLE', 'accrualPeriodicity': 'STATIC', 'endDate': '2020-03-14', 'startDate': '2018-12-15'}}",2020-08-05T18:22:48Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '1', 'observationDate': '14/03/2020', 'measuredProperty': 'Count'}]",4.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-08-17T15:41:00Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Northern Ireland Biobank (NIB)', 'contactPoint': 'nibiobank@qub.ac.uk', 'abstract': 'Collection of samples and data across the following diseases: Carcinoma in situ of prostate, Fit and well, Malignant neoplasm of endometrium of corpus uteri (disorder), Malignant tumour of breast, Malignant tumour of colon, Malignant tumour of ovary.', 'publisher': {'contactPoint': 'nibiobank@qub.ac.uk', 'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE'}, 'keywords': ['Malignant neoplasm of endometrium of corpus uteri (disorder)', 'Northern Ireland', 'Carcinoma in situ of prostate', 'UKCRC Tissue Directory', 'Malignant tumour of breast', 'Malignant tumour of ovary', 'NIB', 'Fit and well', 'Biobank', 'Malignant tumour of colon'], 'doiName': 'Not Available'}",c6e1ea88-f5bf-4a57-953f-688f313fcb04,"{'spatial': 'Northern Ireland', 'typicalAgeRange': '15-150', 'physicalSampleAvailability': ['PLASMA', 'SERUM', 'TISSUE', 'WHOLE BLOOD']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '489237e6-0031-468e-80fb-df9d013e7771', '3.0.0': '82f4cf19-9e6a-4c31-8cc3-085f3d44ba44', '1.0.0': 'fa7748c6-047f-4e64-8058-3c5de269e130', '2.0.0': '6983134e-c920-47db-957b-47e873644eb0', 'latest': '82f4cf19-9e6a-4c31-8cc3-085f3d44ba44'}","{'description': 'Northern Ireland Biobank was established in 2010 to collect, store and distribute human samples for translational research and is primarily funded by the Northern Ireland Health and Social Care Research & Development Division of the Public Health Agency.  Cancer Research UK (CR-UK), the Friends of the Cancer Centre and Prostate Cancer UK have also provided financial support. The NIB complies with approvals from both the Office of Research Ethics in Northern Ireland and HSC R&D governance to host and distribute cohorts of quality assured biological samples linked with well-defined clinical and pathological data sets.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",82f4cf19-9e6a-4c31-8cc3-085f3d44ba44,https://web.www.healthdatagateway.org/dataset/82f4cf19-9e6a-4c31-8cc3-085f3d44ba44,"{'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}, 'access': {'jurisdiction': 'GB-NIR', 'dataProcessor': 'Not Applicable', 'accessRequestCost': 'Not specified', 'accessRights': 'Please contact the publisher using Contact Point details provided.', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED.', 'dataController': ""Queen's University Belfast""}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}}","{'temporal': {'startDate': '2011-01-01', 'distributionReleaseDate': '2018-05-30', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:16:34Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:09:20Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Hypertonic saline nasal irrigation and gargling for suspected COVID-19', 'keywords': ['SALINE', 'NASAL', 'WASHING', 'GARGLING', 'treatment', 'Recovery', 'COVID-19', 'SARS-CoV2'], 'publisher': {'name': 'BREATHE', 'identifier': '607db9c2e1f9d3704d570ce6', 'memberOf': 'HUB'}, 'contactPoint': 'RESPIRE@ed.ac.uk', 'abstract': 'Pragmatic web-based Bayesian adaptive randomised controlled trial using hypertonic saline. This data was collected in a study that tries to find out if nasal washing and gargling with salt-water helps individuals get better faster.'}",574cf7bc-dd70-4508-a66d-ac59d8d06639,"{'spatial': ['https://www.geonames.org/1168579/islamic-republic-of-pakistan.html'], 'typicalAgeRange': '18-65'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '830c22bb-4321-4fa3-ba04-be9b30518877'},"{'description': 'COVID-19 and the ‘common cold’ are both caused by viruses that get into the respiratory tract. Some studies with patients with the common cold have found that nasal washing and gargling with salt-water may be helpful in reducing the length of the illness . However, we do not know if this same benefit is also seen in patients with suspected or confirmed COVID-19. This study will help us find out if nasal washing and gargling with salt-water are helpful in COVID-19. The study involved randomly selected individuals who fulfil the criteria of having the following symptoms: (i) Respiratory symptoms, such as cough and shortness of breath, (ii) Fever, (iii) Muscle pain, (iv) Headache, (v) Sore throat, (vi) New loss of taste or smell, (vii) Severe fatigue. \n\nIndividuals who have one or more symptoms of SARS-CoV2 are encouraged to signup for the study on a website. They fill a few forms are then divided randomly into a control and treatment group. Control group participants are advised to follow the standard treatment suggested by Government of Pakistan. The treatment group also follows the standard recommendations but along it perform saline nasal wash a few times a day. The participants of both groups fill a form everyday to record their symptoms for 14 days and then an end of study form. The data shared records the responses of the participants that were collected digitally.', 'isPartOf': 'BREATHE', 'associatedMedia': ['https://www.ed.ac.uk/usher/respire/']}",830c22bb-4321-4fa3-ba04-be9b30518877,https://web.www.healthdatagateway.org/dataset/830c22bb-4321-4fa3-ba04-be9b30518877,"{'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL'], 'format': ['CSV']}, 'usage': {'resourceCreator': ['RESPIRE']}, 'access': {'accessService': 'Access is managed on a project-by-project basis. Contact the RESPIRE Collaboration.', 'dataProcessor': 'RESPIRE Collaboration', 'accessRights': ['https://www.ed.ac.uk/usher/respire/about/projects'], 'dataController': 'RESPIRE Collaboration', 'deliveryLeadTime': 'OTHER', 'jurisdiction': ['PK', 'GB-ENG', 'GB-SCT']}}","{'temporal': {'timeLag': 'NOT APPLICABLE', 'startDate': '2021-05-01', 'endDate': '2021-11-30', 'accrualPeriodicity': 'STATIC'}, 'origin': {'purpose': ['STUDY'], 'collectionSituation': ['OTHER']}}",2021-10-19T16:05:40Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '1', 'disambiguatingDescription': 'Observations detail not provided for inclusion here and default values used in mandatory fields', 'observationDate': '30/11/2021', 'measuredProperty': 'Count'}]",1.0.0,,2021-10-19T16:05:40Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Covid-19 Tests', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d1f', 'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE'}, 'abstract': 'Covid 19 Test Results', 'contactPoint': 'hicsupport@dundee.ac.uk', 'keywords': ['COVID-19', 'TESTING', 'Tayside', 'Fife', 'HIC', 'SCOTLAND']}",53585c9c-f588-41f8-b493-3d271a2794a8,"{'followup': 'UNKNOWN', 'spatial': ['United Kingdom,Scotland'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150', 'pathway': 'Secondary care records for Tayside and Fife'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '83e2e155-1845-4bfd-a0c0-9e81b0a41397'},"{'description': 'Health Protection Scotland (HPS), part of Public Health Scotland (PHS), is leading the Enhanced Surveillance of COVID-19 in Scotland (ESoCiS) programme on behalf of Scottish Government gathering a wide variety of data about COVID-19 from a range of sources, to learn more about the virus and gain an understanding of how it is spreading through the population in Scotland.   \nData is via ECOSS (health protection system) and the Test and Protect datasets. NHS Digital have been providing a feed of the UK Gov data into NSS IT which then populates the systems for a full picture.', 'isPartOf': 'University of Dundee Health Informatics Centre'}",83e2e155-1845-4bfd-a0c0-9e81b0a41397,https://web.www.healthdatagateway.org/dataset/83e2e155-1845-4bfd-a0c0-9e81b0a41397,"{'usage': {'dataUseRequirements': ['DISCLOSURE CONTROL'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['NHS Fife & NHS Tayside'], 'investigations': ['']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'format': ['Database'], 'conformsTo': ['LOCAL']}, 'access': {'accessService': 'HIC has implemented a remote-access Trusted Research Environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a 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"{'title': 'Deriving and validating a clinical prediction rule for the diagnosis of asthma in primary care', 'publisher': {'contactPoint': 'SAILDatabank@swansea.ac.uk', 'name': 'BREATHE', 'memberOf': 'HUB'}, 'abstract': 'Asthma is common in the UK. Accurate diagnosis is essential for good asthma management. Yet uncertainty about the best way to diagnose asthma can lead to missed diagnoses and under-treatment, or over-diagnosis leading to unnecessary treatmen.', 'keywords': ['ALSPAC', ' OPRCD', ' Asthma', ' Diagnosis', ' Primary care', ' Prediction Model'], 'contactPoint': 'luke.daines@ed.ac.uk', 'doiName': 'https://doi.org/10.17605/OSF.IO/FU4GN19, https://doi.org/10.12688/wellcomeopenres.15751.1 \nhttps://doi.org/10.12688/wellcomeopenres.15751.1'}",b0a68ee7-742d-45dc-aae9-4be4e1655fc0,"{'typicalAgeRange': '0-24', 'spatial': 'https://www.geonames.org/countries/GB/united-kingdom.html', 'physicalSampleAvailability': ['NOT AVAILABLE\xa0']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '44a6eda9-f4a3-40c4-893b-cc60e69ac278', '1.0.0': '842e8c5c-a298-4942-9ac4-f95d1a5f87b3', 'latest': '842e8c5c-a298-4942-9ac4-f95d1a5f87b3'}","{'description': ""<p>Asthma is common in the UK, causing considerable illness, healthcare usage, and public expense. Accurate diagnosis is essential for good asthma management. Yet, uncertainty about the best way to diagnose asthma can lead to missed diagnoses and under-treatment, or over-diagnosis leading to unnecessary treatment and healthcare costs. To make it easier for doctors and nurses to identify and interpret important information gathered from patient suspected of having asthma, existing research database 'Avon Longitudinal Study of Parents and Children' (ALSPAC) will be used to identify feautres which predict who has asthma. This data contains information on a wide-range of socioeconomic, lifestyle, clinical, anthropometric and biological data on all family members repeatedly. The rule will be tested on anonymous routine data from UK GP's 'Optimum Patient Care Research Database'.</p>\n\n<p>ALPSAC: http://www.bristol.ac.uk/alspac\nOPCRD: https://opcrd.co.uk/</p>"", 'isPartOf': 'AUCKAR'}",842e8c5c-a298-4942-9ac4-f95d1a5f87b3,https://web.www.healthdatagateway.org/dataset/842e8c5c-a298-4942-9ac4-f95d1a5f87b3,"{'access': {'dataController': 'BREATHE', 'dataProcessor': 'NOT APPLICABLE', 'deliveryLeadTime': 'VARIABLE', 'jurisdiction': ['GB-ENG', 'GB-SCT', 'GB-WLS'], 'accessRights': ['To be determined upon data access request'], 'accessService': 'To be determined upon data access request'}, 'formatAndStandards': {'conformsTo': 'LOCAL', 'vocabularyEncodingScheme': 'LOCAL', 'language': 'en'}, 'usage': {'isReferencedBy': ['Daines, L., Bonnett, L.J., Boyd, A., Turner, S., Lewis, S., Sheikh, A. and Pinnock, H., 2020. Protocol for the derivation and validation of a clinical prediction model to support the diagnosis of asthma in children and young people in primary care. Wellcome Open Research, 5.'], 'dataUseLimitation': 'GENERAL RESEARCH USE', 'resourceCreator': 'University of Bristol (ALSPAC)\n Optinum Patient Care (OPCRD)'}}","{'temporal': {'distributionReleaseDate': '2018-06-30', 'accrualPeriodicity': 'OTHER', 'endDate': '2018-06-30', 'startDate': '1991-04-01'}, 'origin': {'collectionSituation': ['OTHER'], 'purpose': ['STUDY']}}",2021-04-14T09:33:26Z,,1.0.0,"{'qualifiedRelation': ['https://web.www.healthdatagateway.org/dataset/9c07be99-54a1-4a23-8de2-492e8dfea55a', ' https://web.www.healthdatagateway.org/dataset/ae4b8371-d037-46e8-bdcd-bf3de08ef38e']}",2021-04-14T21:55:10Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Oncology Clinical Trials Office, University of Oxford', 'abstract': ""Collection of samples and data across the following diseases: Barrett's oesophagus (disorder), Malignant tumour of oesophagus, Malignant tumour of ovary, Malignant tumour of pancreas."", 'doiName': 'Not Available', 'publisher': {'memberOf': 'ALLIANCE', 'contactPoint': 'octo-enquiries@oncology.ox.ac.uk', 'name': 'TISSUE DIRECTORY'}, 'keywords': ['Malignant tumour of pancreas', 'OCTO', 'Office', 'Clinical', 'UKCRC Tissue Directory', 'Trials', ""Barrett's oesophagus (disorder)"", 'Oncology', 'Malignant tumour of oesophagus', 'Malignant tumour of ovary', 'University of Oxford'], 'contactPoint': 'octo-enquiries@oncology.ox.ac.uk'}",4a65f6d6-f2e4-4d98-a3a4-94a32206836d,"{'physicalSampleAvailability': ['CORE BIOPSY', 'PERIPHERAL BLOOD CELLS', 'PLASMA', 'SERUM', 'TISSUE', 'WHOLE BLOOD'], 'spatial': 'England', 'typicalAgeRange': '15-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'c8a83c86-07c7-472b-ac5b-ccb8917de871', '3.0.0': '8466ec6f-8a4c-4286-8138-04c35e12b1f8', '1.0.0': '6dfa04da-e54b-445f-b451-877a67c9a3f0', '2.0.0': '952d4422-3f03-46e6-9dbd-1bf0f54b7e3a', 'latest': '8466ec6f-8a4c-4286-8138-04c35e12b1f8'}","{'description': 'OCTO was established in 2002 to run trials concerned with the practical application of high quality research into innovative and effective cancer therapies and prevention strategies.\nOur portfolio of trials includes a range of projects from first in human drug trials through to large Phase III clinical studies. Studies assess interventions including radiotherapy, drug combinations and novel imaging techniques.\nTumour types include: colorectal, oesophageal, melanoma, lung, breast, cervical, haematology, and bone sarcoma, in both adjuvant and advanced disease.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",8466ec6f-8a4c-4286-8138-04c35e12b1f8,https://web.www.healthdatagateway.org/dataset/8466ec6f-8a4c-4286-8138-04c35e12b1f8,"{'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}, 'access': {'accessRights': 'Please contact the publisher using Contact Point details provided.', 'jurisdiction': 'GB-ENG', 'accessRequestCost': 'Not specified', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED.', 'dataProcessor': 'Not Applicable', 'dataController': 'University of Oxford'}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2005-01-01'}}",2020-01-13T17:16:35Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:11:02Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Audit of Psychosis - Audit on Early Intervention in Psychosis services -  patient experience survey', 'keywords': ['Psychosis', 'Patient Experience', 'Oct Nov 2019', 'NAP - EIP', 'Audit'], 'publisher': {'contactPoint': 'DataSharing@hqip.org.uk', 'name': 'HQIP', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'DataSharing@hqip.org.uk', 'abstract': 'Survey data of people who have been treated in EIP services in October and November 2019, about the care they have received, and how they feel about it.'}",c3e63860-bd61-4154-ab5f-ca927fb029c4,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'de55b8d3-9b96-4568-b862-871aa1c3318e', '3.0.0': '849d46e6-49a6-4456-a5ae-990c02012bf2', '1.0.0': '4aee8306-28f8-4a6f-ba8f-769a63add1ec', '2.0.0': '50631db6-126e-4b3a-8035-444b66ba4afa', 'latest': '849d46e6-49a6-4456-a5ae-990c02012bf2'}","{'description': 'National Audit of Psychosis - Audit on Early Intervention in Psychosis services -  patient experience survey.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",849d46e6-49a6-4456-a5ae-990c02012bf2,https://web.www.healthdatagateway.org/dataset/849d46e6-49a6-4456-a5ae-990c02012bf2,"{'access': {'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data', 'deliveryLeadTime': 'OTHER', 'jurisdiction': 'GB-GBN'}, 'formatAndStandards': {'language': ['en']}}",,2020-01-13T10:41:29Z,,3.0.0,,2021-04-14T08:11:44Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'COMPARE', 'abstract': 'The COMPARE bioresource comprises 30,000 English blood donors, on whom genetic and blood cell trait data have been generated.', 'contactPoint': 'srf42@medschl.cam.ac.uk', 'publisher': {'contactPoint': 'srf42@medschl.cam.ac.uk', 'memberOf': 'OTHER', 'name': 'The University of Cambridge'}, 'keywords': ['Genetics, blood cell']}",8cbb73e2-a2c4-4caf-8dcd-6ac3795bb996,"{'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM', 'WHOLE BLOOD'], 'spatial': 'England', 'followup': 'OTHER', 'typicalAgeRange': '18-80'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '84b6d047-2a05-4fc0-8537-809dbb3d18ed'},"{'description': None, 'isPartOf': 'NOT APPLICABLE'}",84b6d047-2a05-4fc0-8537-809dbb3d18ed,https://web.www.healthdatagateway.org/dataset/84b6d047-2a05-4fc0-8537-809dbb3d18ed,"{'access': {'accessRequestCost': 'Cost recovery.', 'dataController': 'The University of Cambridge', 'jurisdiction': 'GB-ENG', 'dataProcessor': 'The University of Cambridge', 'accessRights': ['http://www.donorhealth-btru.nihr.ac.uk/wp-content/uploads/2020/04/Data-Access-Policy-v1.0-14Apr2020.pdf'], 'deliveryLeadTime': '2-6 MONTHS'}, 'formatAndStandards': {'language': 'en'}, 'usage': {'resourceCreator': 'COMPARE must be acknowledged in all publications using these data. Further details will be issued through the Data Access Committee.', 'dataUseRequirements': ['NOT FOR PROFIT USE', 'RETURN TO DATABASE OR RESOURCE', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': 'GENERAL RESEARCH USE'}}","{'origin': {'collectionSituation': 'OTHER', 'source': ['ELECTRONIC SURVEY', 'OTHER'], 'purpose': 'TRIAL'}, 'temporal': {'timeLag': 'NOT APPLICABLE', 'accrualPeriodicity': 'OTHER', 'startDate': '2016-02-01'}}",2020-12-23T11:38:40Z,,0.0.1,,2021-01-20T09:08:33Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'North West London Coordinate My Care (NWL CMC)', 'publisher': {'name': 'DISCOVER NOW', 'contactPoint': 'researchers@registerfordiscover.org.uk', 'memberOf': 'HUB'}, 'doiName': 'In Progress', 'abstract': 'The NWL CMC linked table is an innovative NHS service that builds medical care around the wishes of each patient. Patients registered with a NWL General Practice can create plans with their GP and share with healthcare professionals treating them.', 'keywords': ['CMC', 'Discover-NOW', 'Coordinate My Care', 'End of Life', 'Integrated Care', 'Pathway', 'Real World data', 'Linked longitundinal'], 'contactPoint': 'researchers@registerfordiscover.org.uk'}",c853b41b-fbd1-4896-b0fb-85303109fec4,"{'followup': '> 10 YEARS', 'pathway': 'This dataset covers patients across all pathway and information related to their CMC record including resuscitation details', 'spatial': 'NHS Brent CCG; NHS Central London CCG; NHS Ealing CCG; NHS Hammersmith &Fulham CCG; NHS Harrow CCG; NHS Hillingdon CCG; NHS Hounslow CCG; NHS West London CCG', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'd30304ab-9f5d-478a-8bac-afcda09ef2e8', '2.0.0': '850f99cb-f091-4f10-86ee-06a3eaa7df53', '0.0.1': 'af660e81-bb96-4e85-99a8-b85147c6ba79', 'latest': '850f99cb-f091-4f10-86ee-06a3eaa7df53'}","{'description': 'List of patients with CMC care plan (end of life care plan).', 'associatedMedia': ['https://imperialcollegehealthpartners.com/discover-now/north-west-london-covid-19-data-repository/', 'https://www.nwlondonccgs.nhs.uk/professionals/whole-systems-integrated-care-wsic-dashboards-and-information-sharing/information-de-identified-users'], 'isPartOf': 'CMC'}",850f99cb-f091-4f10-86ee-06a3eaa7df53,https://web.www.healthdatagateway.org/dataset/850f99cb-f091-4f10-86ee-06a3eaa7df53,"{'access': {'deliveryLeadTime': '1-2 MONTHS', 'jurisdiction': 'GB', 'accessRequestCost': 'In Progress', 'accessService': ""Researchers will have access to a VDI environment with a specific username and password. The researchers will get access to the datasets that is present in the hub's catalogue and would be able to carry out their research within the safe haven. There are restrictions applied which prevents the researchers from taking data out of the safe haven, once the research/analysis is completed the admin team will need to be contacted for taking the analysis off the safe haven"", 'dataController': 'Joint data controller model across North West London', 'accessRights': ['https://imperialcollegehealthpartners.com/discover-now/nwl-covid-data-access/'], 'dataProcessor': 'NHS BRENT CCG'}, 'usage': {'dataUseLimitation': 'NO RESTRICTION', 'dataUseRequirements': ['COLLABORATION REQUIRED', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'investigations': ['https://www.registerfordiscover.org.uk/researchers/discover-for-researchers-and-industry'], 'resourceCreator': 'NHS Brent CCG\nDiscover-NOW', 'isReferencedBy': ['Not Available']}, 'formatAndStandards': {'language': 'en', 'conformsTo': ['LOCAL', 'OTHER'], 'format': ['Excel', 'SQL', 'Tableau', 'R'], 'vocabularyEncodingScheme': 'LOCAL'}}","{'temporal': {'startDate': '2012-07-25', 'timeLag': '1-2 MONTHS', 'accrualPeriodicity': 'MONTHLY', 'distributionReleaseDate': '2020-05-06'}, 'origin': {'source': 'EPR', 'purpose': ['CARE', 'ADMINISTRATIVE'], 'collectionSituation': 'OTHER'}}",2020-06-12T14:07:37Z,"[{'observedNode': 'Persons', 'measuredValue': ' 19,056 ', 'disambiguatingDescription': '', 'observationDate': '2020-12-08', 'measuredProperty': 'Count'}]",2.0.0,"{'qualifiedRelation': ['This dataset can be linked with all other datasets available in our metadata catalogue as every patient will be identified using a unique patient key that can be used to link'], 'derivation': ['Long Term Conditions Electronic Frailty Index Q-Admissions Patient Segments Risk Segments']}",2021-03-01T10:15:41Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 10, 'structuralMetadata.columnName': 10, 'structuralMetadata.columnDescription': 10, 'structuralMetadata.dataType': 10, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '961c2492-28fe-41b3-ad9a-0b764908881b', 'description': 'List of patients with CMC care plan (end of life care plan)', 'name': 'CMC Data', 'dataElementsCount': 10, 'dataElements': '0a175440-6fc5-4a1c-8016-45d82b00c25d, 5173118b-5dbd-4093-8175-5a0baa60f296, de89cc93-3444-4f86-af7c-88669e3c1c2e, a4d3ae2e-e6c9-4df0-a072-a135c416ada7, 7a55b068-6a21-4cbb-8735-0a8ddf49b47b, 8ad93804-e671-47bc-9db1-2c3c9cb48c7d, 46328dd5-1cb1-4c9d-a1be-9c754da1435c, 566ba8c1-fd6a-4964-aaec-d2f31403373e, 3eacb074-5699-417f-9d8d-1f5d72e71a47, 583797a2-34b6-46fb-92bf-35efde6979ba'}]}"
"{'title': 'Hospitalised Community Acquired Pneumonia granular pathway and outcome data', 'abstract': 'Over 100K patients hospitalised with Community Acquired Pneumonia (CAP) from January 2000. Granular care pathways. Serial physiology, blood biomarkers, outcome data. Deeply phenotyped. Multi morbidity, investigations, interventions and outcomes.', 'contactPoint': 'PIONEER@UHB.NHS.UK', 'publisher': {'name': 'PIONEER', 'identifier': '607db9c5e1f9d3704d570d5f', 'memberOf': 'HUB'}, 'keywords': ['Community Acquired Pneumonia', 'Sepsis', 'IV Fluids', 'Machine learning', 'offline reinforcement learning', 'physiology', 'CAP', 'Artificial Intelligence', 'Critical Care', 'Older adults', 'Epidemiology', 'Mortality', 'Antibiotics', 'antimicrobial treatments', 'pathways', 'Neutrophil function', 'Infection', 'CURB score', 'NEWS2', 'acuity']}",6225bc5d-ace2-498f-8a90-2d671771bc65,"{'typicalAgeRange': '18-115', 'spatial': ['United Kingdom,England,West Midlands'], 'pathway': 'Data is representative of the multi-ethnicity population within the West Midlands (42% non white). Data includes all patients admitted during this timeframe, with National data Opt Outs applied, and therefore is representative of admissions to secondary care. Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': '1 - 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '8559e83d-ba93-4c98-af86-286f87f54a14'},"{'description': 'Background \n\nCommunity acquired pneumonia (CAP) is a leading cause of hospital admission, and in older adults has high rates of mortality and complications. CAP is associated with increased long-term mortality and loss of independence for older adults. CAP typically affects older adults with co-morbidities.  Complications such as sepsis, and empyema (infected fluid around the lung) prolong hospital admission, result in additional interventions in hospital and have higher mortality than CAP alone. The causative agents for CAP are often poorly identified in real world clinical practice.  \n\nThe treatment of patients with CAP is complex. Key decisions relate to the antibiotics used, the way antibiotics are given (in a tablet or by a drip) and the place of care (home, hospital and in hospital, a normal ward or intensive care).  These data will allow analyses on differing antimicrobial treatments and outcomes, as well as differing pathways of care.  This data has been constructed to support machine learning including algorithm generation and testing models. \n\nPIONEER geography \nThe West Midlands (WM) has a population of 5.9 million and includes a diverse ethnic and socio-economic mix.  \n\nEHR. UHB is one of the largest NHS Trusts in England, providing direct acute services and specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds and an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary and secondary care record (Your Care Connected) and a patient portal “My Health”. \n\nScope: All patients admitted to hospital from 2000 because of Community Acquired Pneumonia. Longitudinal and individually linked, so that the preceding and subsequent health journey can be mapped and healthcare utilisation prior to and after admission understood. The dataset includes highly granular patient demographics, co-morbidities taken from ICD-10 and SNOMED-CT codes. Serial, structured data pertaining to process of care (timings and admissions), presenting complaints, therapy, ventilation route, assessments components (AMT10, falls, MMS, thrombosis and waterlow), physiology readings (temperature, blood pressure, respiratory rate, NEWS2 score, oxygen saturations, AVPU scale and others), Sample analysis results (bilirubin, urea, albumin, platelets, white blood cells and others) drug administered and all outcomes. Linked images available (radiographs, CT scans, MRI). \n\nAvailable supplementary data: CAP admission data from 2000 onwards. Matched controls; ambulance, OMOP data, synthetic data. \n\nAvailable supplementary support: Analytics, Model build, validation and refinement; A.I.; Data partner support for ETL (extract, transform and load) process, Clinical expertise, Patient and end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.'}",8559e83d-ba93-4c98-af86-286f87f54a14,https://web.www.healthdatagateway.org/dataset/8559e83d-ba93-4c98-af86-286f87f54a14,"{'usage': {'resourceCreator': ['This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS']}, 'access': {'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'jurisdiction': ['GB-ENG'], 'dataProcessor': 'NOT APPLICABLE', 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'deliveryLeadTime': '1-2 MONTHS', 'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/']}, 'formatAndStandards': {'format': ['SQL'], 'conformsTo': ['LOCAL'], 'language': ['en'], 'vocabularyEncodingScheme': ['SNOMED CT', 'ICD10']}}","{'origin': {'collectionSituation': ['ACCIDENT AND EMERGENCY', 'IN-PATIENTS'], 'purpose': ['CARE'], 'source': ['EPR']}, 'temporal': {'accrualPeriodicity': 'QUARTERLY', 'startDate': '2000-01-01', 'timeLag': 'OTHER', 'endDate': '2022-01-31', 'distributionReleaseDate': '2022-04-25'}}",2022-05-24T10:15:34Z,"[{'measuredProperty': 'Count', 'observedNode': 'EVENTS', 'measuredValue': '139462', 'disambiguatingDescription': '139,462 admissions for community acquired pneumonia from 01/01/2000 to 31/01/2022', 'observationDate': '25/04/2022'}]",1.0.0,{'derivation': ['Not 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"{'title': 'Cystic Fibrosis Patient Tendon Rupture', 'contactPoint': 'registry@cysticfibrosis.org.uk', 'abstract': 'The UK Cystic Fibrosis Registry Tendon Rupture is made up of data items relating to patient tendon rupture with reference to treatment and location of the ruptured tendon.', 'doiName': '10.1093/ije/dyx196', 'publisher': {'contactPoint': 'registry@cysticfibrosis.org.uk', 'name': 'CYSTIC FIBROSIS TRUST', 'memberOf': 'ALLIANCE'}, 'keywords': ['CYSTIC FIBROSIS']}",4fcc8b11-2b9b-4f68-b51a-978749d89acc,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'UK', 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '6c6c46a8-b9b5-4137-a329-1e21030b9efb', '4.0.0': '8638e095-a609-463f-b36e-c4cac4519660', '3.0.0': 'e432737f-43c0-43c1-aef5-71cb204d770c', '0.0.1': '548c4dbd-dda9-4923-b3a9-b2ec649dcd91', '1.0.0': 'c3514408-4c4d-41ae-8af1-d32ba8594b00', 'latest': '8638e095-a609-463f-b36e-c4cac4519660'}","{'description': ""The UK CF Registry is a centralised database of all 60 CF centres across the UK. Data are manually entered in calendar years by CF clinical teams for the 99% of people with a diagnosis of CF who consent to their data being donated to the Registry. Data are entered onto a secure web-portal. For more information please see www.cysticfibrosis.org.uk/registry and 'Data Resource Profile: The UK CF Registry' published in the International Journal of Epidemiology (2018 Feb 1;47(1)9-10e)."", 'isPartOf': 'No Group'}",8638e095-a609-463f-b36e-c4cac4519660,https://web.www.healthdatagateway.org/dataset/8638e095-a609-463f-b36e-c4cac4519660,"{'access': {'deliveryLeadTime': '16 WEEKS (8 WEEKS FOR COMMITTEE DECISION AND 8 WEEKS FOR DATA EXTRACTION AND PROCESSING)', 'accessRequestCost': 'Whilst the UK CF Registry does not charge for data, it must recoup costs of data handling (including extract and cleaning), project management, and analysis (where applicable) on behalf of third parties. The charging structure outlined below is designed to be fair, proportionate, and transparent whilst furthering the Registry’s aim of stimulating research use of the data for the benefit of people with cystic fibrosis. \n\nhttps://www.cysticfibrosis.org.uk/the-work-we-do/uk-cf-registry/apply-for-data-from-the-uk-cf-registry', 'dataController': 'Cystic Fibrosis Trust', 'accessRights': 'https://www.cysticfibrosis.org.uk/the-work-we-do/uk-cf-registry/apply-for-data-from-the-uk-cf-registry', 'jurisdiction': 'GB', 'dataProcessor': 'Cystic Fibrosis Trust'}, 'usage': {'isReferencedBy': [""'Data Resource Profile: The UK CF Registry' published in the International Journal of Epidemiology (2018 Feb 1;47(1)9-10e)""], 'resourceCreator': 'Cystic Fibrosis Trust'}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'format': ['csv'], 'language': ['en'], 'conformsTo': ['LOCAL']}}","{'temporal': {'startDate': '1996-01-01', 'distributionReleaseDate': '2019-09-01', 'endDate': '2019-09-01', 'accrualPeriodicity': 'ANNUAL'}}",2020-01-10T17:00:50Z,,4.0.0,"{'qualifiedRelation': ['All our datasets are linked by a common identifier. No external linkages.'], 'derivation': ['Not Applicable']}",2021-02-21T15:21:54Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 21, 'structuralMetadata.columnName': 21, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 21, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '9156e0a9-c3e6-40d5-bd82-7b946ee85d6c', 'name': 'Tendon Rupture', 'dataElementsCount': 21, 'dataElements': '4b869178-38ec-414d-aabb-3d55f1d33ade, 3ce58be0-e4f7-41ed-9428-4a65c331bdb4, 25d1fb8a-fc3b-4435-bd51-d5a22c6dacdf, bc46a1e3-c2fd-40b7-bd91-2fe140e79230, 449f8761-8a11-422e-917d-9f5030350401, 50030434-1d42-4ae1-8603-e48fe7b1e70d, a5b6e558-f9c8-44e7-a5b2-cd60c7d437c9, a2139a8c-0121-4b4b-8c80-f4893d64810f, 08c4144b-4df2-4154-8752-22afdcaeb0ea, 9eeeae4f-ce5f-4e29-8a7a-26501a83c0b6, 75f0c6ee-bf15-45b2-8f81-75413e4a3f32, f9888b76-c917-41e4-9bba-140b1f62f9ce, 03aceba2-70df-4fc6-b010-d2c20fae0c0f, 792cc709-4a3d-4936-9f7c-61b8956fee8e, b02fea0c-2aab-4c44-b14d-ae35a38ee041, a11f31e2-7812-4acd-9861-782be13ae9c8, 39565d81-7ea2-4ee3-804a-6444dbd5107c, bf123bb9-06a9-4246-8110-c04608c6d8a4, 84ae1702-d00c-4920-b372-58b460914967, dd657e1f-09ae-4cf6-994f-32fc0bfc3454, 526094c8-67c5-4ecc-8a67-8d2dabc50692'}]}"
"{'title': 'Oxford Musculoskeletal Biobank', 'abstract': 'Collection of samples and data across the following diseases: Giant cell arteritis (disorder), Osteoarthritis.', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY', 'contactPoint': 'martin.taylor@ndorms.ox.ac.uk'}, 'doiName': 'Not Available', 'keywords': ['Osteoarthritis', 'OMB', 'UKCRC Tissue Directory', 'Oxford', 'Musculoskeletal', 'Giant cell arteritis (disorder)', 'Biobank'], 'contactPoint': 'martin.taylor@ndorms.ox.ac.uk'}",ccd6e59d-3582-4f47-a4cd-f5845192d75c,"{'physicalSampleAvailability': ['IN PROGRESS'], 'spatial': 'England', 'typicalAgeRange': 'Not Known'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '71380809-28e7-4efd-8401-f96f4af2e191', '3.0.0': '865f0e79-f862-493b-b863-b39b777d60ca', '1.0.0': '08966e3b-b740-4230-a951-833b505a0ed2', '2.0.0': 'f5ed34fa-154a-4613-a253-277547cfd8ca', 'latest': '865f0e79-f862-493b-b863-b39b777d60ca'}","{'description': 'The Oxford Musculoskeletal Biobank (OMB) is a resource of tissue and blood samples donated by patients for use in medical research (primarily musculoskeletal). The Biobank provides a simple and efficient way to collect and store samples according to regulatory requirements, and it ensures fair access to the samples. Samples will usually be used for research studies which may contribute to increasing the knowledge and understanding of musculoskeletal diseases in order to improve diagnosis and treatment, and ultimately patient care.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",865f0e79-f862-493b-b863-b39b777d60ca,https://web.www.healthdatagateway.org/dataset/865f0e79-f862-493b-b863-b39b777d60ca,"{'access': {'accessRights': 'Please contact the publisher using Contact Point details provided.', 'dataController': 'University of Oxford', 'jurisdiction': 'GB-ENG', 'accessRequestCost': 'Not specified', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED.', 'dataProcessor': 'Not Applicable'}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}, 'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}}","{'temporal': {'startDate': '2010-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:16:35Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T16:11:04Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Its Not JUST Idiopathic pulmonary fibrosis Study (INJUSTIS)', 'contactPoint': 'breathe.saildatabank@swansea.ac.uk', 'doiName': '10.1136/bmjresp-2019-000439', 'publisher': {'contactPoint': 'breathe.saildatabank@swansea.ac.uk', 'name': 'BREATHE', 'memberOf': 'HUB'}, 'keywords': ['Idiopathic pulmonary fibrosis', 'INJUSTIS', 'LUNG DISEASE', 'COHORT', 'BREATHE'], 'abstract': 'The Its Not JUST Idiopathic pulmonary fibrosis Study (INJUSTIS) is a multicentre, prospective, observational cohort study aiming to identify genetic, serum and other biomarkers that are shared among patients with progressive pulmonary fibrosis.'}",cc6f926a-90cf-4083-84e7-131d1e63813b,"{'typicalAgeRange': '15-150', 'pathway': 'Study', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'United Kingdom', 'followup': '1 - 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'f26238d5-8543-4048-8948-43b465244aed', '3.0.0': '8665b36e-f9a5-4062-ba56-d33fecfe3376', '0.0.1': 'c539e376-8681-4fe7-a83d-62982bc3cbee', '2.0.0': 'edc8f0c6-64f8-4f6d-a1dd-41e05033d54e', 'latest': '8665b36e-f9a5-4062-ba56-d33fecfe3376'}","{'description': ""The It's Not JUST Idiopathic pulmonary fibrosis Study (INJUSTIS) is a multicentre, prospective, observational cohort study. The aims of this study are to identify genetic, serum and other biomarkers that may identify specific molecular mechanisms, reflecting disease endotypes that are shared among patients with progressive pulmonary fibrosis regardless of aetiology. Furthermore, it is anticipated that these biomarkers will help predict fibrotic activity that may identify patterns of disease behaviour with greater accuracy than current clinical phenotyping.\n\n200 participants with the multidisciplinary team confirmed fibrotic lung disease (50 each of rheumatoid-interstitial lung disease (ILD), asbestosis, chronic hypersensitivity pneumonitis and unclassifiable ILD) and 50 idiopathic pulmonary fibrosis participants, recruited as positive controls, will be followed up for 2 years. Participants will have blood samples, lung function tests, quality of life questionnaires and a subgroup will be offered bronchoscopy. Participants will also be given the option of undertaking blinded home handheld spirometry for the first 3 months of the study. The primary end point will be identification of a biomarker that predicts disease progression, defined as 10% relative change in forced vital capacity (FVC) or death at 12 months."", 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://bmjopenrespres.bmj.com/content/6/1/e000439']}",8665b36e-f9a5-4062-ba56-d33fecfe3376,https://web.www.healthdatagateway.org/dataset/8665b36e-f9a5-4062-ba56-d33fecfe3376,"{'usage': {'dataUseLimitation': 'GENERAL RESEARCH USE', 'isReferencedBy': ['Khan F, Stewart I, Howard L, et al. 2019. The Its Not JUST Idiopathic pulmonary fibrosis Study (INJUSTIS): description of the protocol for a multicentre prospective observational cohort study identifying biomarkers of progressive fibrotic lung disease. https://doi.org/10.1136/bmjresp-2019-000439. BMJ Open Respiratory Research'], 'dataUseRequirements': 'PROJECT SPECIFIC RESTRICTIONS', 'resourceCreator': 'University of Nottingham'}, 'access': {'dataProcessor': 'BREATHE', 'accessRights': ['In Progress'], 'dataController': 'BREATHE', 'accessService': 'Enquiries to SAIL Databank or INJUSTIS team', 'deliveryLeadTime': 'OTHER', 'jurisdiction': 'GB'}, 'formatAndStandards': {'conformsTo': 'LOCAL', 'format': ['Not Applicable'], 'vocabularyEncodingScheme': ['LOCAL', 'NHS NATIONAL CODES'], 'language': 'en'}}","{'origin': {'purpose': ['STUDY', 'DISEASE REGISTRY'], 'source': 'OTHER'}, 'temporal': {'distributionReleaseDate': '2019-06-04', 'accrualPeriodicity': 'ANNUAL', 'startDate': '2018-11-11', 'timeLag': 'NOT APPLICABLE'}}",2020-01-13T15:48:22Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-03-03T15:00:14Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Quality of Life of Cancer Survivors: Pilot Patient Reported Outcomes (GOLD)', 'contactPoint': 'enquiries@cprd.com', 'publisher': {'name': 'CPRD', 'identifier': '607db9c2e1f9d3704d570cee', 'memberOf': 'ALLIANCE'}, 'keywords': ['Cancer Survivor', 'Quality of Life'], 'abstract': 'CPRD GOLD linked Quality of Life of Cancer Survivors pilot survey (QOLP) data from survivors of breast, colorectal, prostate cancer or non-Hodgkin’s lymphoma, diagnosed 2006-2010. 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"{'title': 'EMEP4UK Pollution', 'keywords': ['BREATHE', 'MODELLING', 'ENVIRONMENTAL', 'EMEP4UK'], 'publisher': {'memberOf': 'HUB', 'name': 'BREATHE', 'contactPoint': 'breathe.saildatabank@swansea.ac.uk'}, 'contactPoint': 'breathe.saildatabank@swansea.ac.uk', 'abstract': 'The EMEP4UK model framework consists of an atmospheric chemistry transport model (ACTM) which simulates hourly to annual average atmospheric composition and deposition of various pollutants and the weather research and forecast model (WRF).'}",eb76598f-e228-413c-82f3-231809062611,"{'spatial': 'United Kingdom and beyond', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'bfeb4179-af6d-4797-af19-bdd7caa5d8f3', '4.0.0': '8821748d-9d8b-4787-91cc-0a58c5ab890d', '1.0.0': '49a10d95-814b-4f46-8f74-79cebc3609a1', '2.0.0': 'c6335780-afe7-437f-b0ca-cee8ff7cdc9d', '3.0.0': '79116473-bda2-413c-82ad-ba2b86e5076f', 'latest': '8821748d-9d8b-4787-91cc-0a58c5ab890d'}","{'description': 'The EMEP4UK model framework consists of an atmospheric chemistry transport model (ACTM) which simulates hourly to annual average atmospheric composition and deposition of various pollutants and the weather research and forecast model (WRF). Dry and wet deposition of pollutants are routinely calculated by the model. Coverage is comprehensive - EMEP4UK is capable of representing the UK hourly atmospheric composition at a horizontal scale ranging from 100 km to 1 km on pollutants.', 'isPartOf': 'N/A'}",8821748d-9d8b-4787-91cc-0a58c5ab890d,https://web.www.healthdatagateway.org/dataset/8821748d-9d8b-4787-91cc-0a58c5ab890d,"{'usage': {'resourceCreator': 'The Centre for Ecology and Hydrology (CEH)'}, 'access': {'deliveryLeadTime': 'OTHER', 'dataController': 'UK Centre for Ecology & Hydrology', 'jurisdiction': 'GB', 'accessRights': ['Available upon request'], 'dataProcessor': 'UK Centre for Ecology & Hydrology'}, 'formatAndStandards': {'language': 'en'}}","{'temporal': {'accrualPeriodicity': 'CONTINUOUS', 'startDate': '1905-06-23'}}",2020-01-13T15:48:22Z,,4.0.0,,2021-04-14T08:24:35Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'University of Southampton Faculty of Medicine Tissue Bank', 'abstract': 'Samples & data for following disorders: Malignant lymphoma ,Malignant liver neoplasm,Malignant skin neoplasm, Malignant kidney tumour,Malignant prostate tumour,Malignant thyroid gland tumour,Malignant breast tumour and others.\nFull list in Description…', 'publisher': {'name': 'TISSUE DIRECTORY', 'contactPoint': 'kp1@soton.ac.uk', 'memberOf': 'ALLIANCE'}, 'doiName': 'Not Available', 'keywords': ['Malignant liver neoplasm', 'Malignant prostate tumour', 'HTA', 'Tissue Bank', 'UKCRC Tissue Directory', 'University of Southampton', 'Malignant breast tumour', 'Malignant skin neoplasm', 'Malignant lymphoma', 'Faculty of Medicine', 'Malignant kidney tumour', 'Malignant thyroid gland tumour'], 'contactPoint': 'kp1@soton.ac.uk'}",786563e9-5377-4d18-8d32-65ff14d53987,"{'typicalAgeRange': '40-150', 'physicalSampleAvailability': ['PERIPHERAL BLOOD CELLS', 'PLASMA', 'PRIMARY CELLS', 'SERUM', 'TISSUE', 'WHOLE BLOOD'], 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '4e019521-f2d6-4f98-bd2a-449614b244c7', '3.0.0': '88576066-fb5f-43e2-8af4-0904630b2f1b', '2.0.0': '201602df-7432-4710-98a7-18f59e4f211e', '1.0.0': 'b158c274-a3e2-41cb-8d12-5ae611be5e3f', 'latest': '88576066-fb5f-43e2-8af4-0904630b2f1b'}","{'description': 'The Tissue Bank is licensed by the Human Tissue Authority (HTA) to source, organise, collect, prepare, store and distribute a diverse collection of human tissues and biological products.\nAll tissue is collected with patient consent and distributed anonymously only to National Research Ethics Service (NRES) approved studies. This valuable resource is available  to aid the study of cancer biology and other associated research. The Tissue Bank allows for rapid access to a plethora of biological materials supported by an inventory management system. Tissues currently available include normal and malignant snap frozen tissue, FFPE blocks, fresh biopsy tissues, blood products and biological fluids. Collections are organized by Tissue Bank staff and include a wide variety of cancer classifications. The Tissue Bank currently holds over 100,000 vials.\nWe provide access to collection of samples and data across the following diseases: \n•\tMalignant lymphoma (disorder)\n•\tMalignant neoplasm of liver\n•\tMalignant neoplasm of skin\n•\tMalignant tumour of kidney (disorder)\n•\tMalignant tumour of prostate (disorder)\n•\tMalignant tumour of thyroid gland (disorder)\n•\tMalignant tumour of breast\n•\tMalignant tumour of colon\n•\tMalignant tumour of lung\n•\tMalignant tumour of ovary\n•\tOsteosarcoma of bone', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",88576066-fb5f-43e2-8af4-0904630b2f1b,https://web.www.healthdatagateway.org/dataset/88576066-fb5f-43e2-8af4-0904630b2f1b,"{'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}, 'access': {'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'accessRequestCost': 'Not specified', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'dataController': 'University of Southampton', 'dataProcessor': 'Not Applicable', 'jurisdiction': 'GB-ENG'}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2000-01-01'}}",2020-01-13T17:14:20Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:17:47Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
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Note, mandatory varicose vein surgery and groin-hernia surgery national PROMs collections ended on 1 October 2017.', 'isPartOf': 'CPRD Aurum', 'associatedMedia': ['https://www.cprd.com/linked-data']}",88bf4a0e-28ea-4124-8121-f20aed9147de,https://web.www.healthdatagateway.org/dataset/88bf4a0e-28ea-4124-8121-f20aed9147de,"{'usage': {'dataUseRequirements': ['GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'NO LINKAGE', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'isReferencedBy': ['[]'], 'investigations': ['https://www.cprd.com/protocol-list'], 'resourceCreator': ['NHS Digital']}, 'access': {'accessRights': ['HTTPS://CPRD.COM/DATA-ACCESS'], 'accessService': 'Access to CPRD data, including UK Primary Care Data, and linked data such as Hospital Episode Statistics, is subject to protocol approval via CPRD’s Research Data Governance (RDG) Process. 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"{'title': 'Human Biomaterials Resource Centre', 'abstract': 'Collection of samples and data across the following diseases: Complete trisomy 21 syndrome (disorder)', 'contactPoint': 'hbrc-tissuebank@contacts.bham.ac.uk', 'publisher': {'contactPoint': 'hbrc-tissuebank@contacts.bham.ac.uk', 'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY'}, 'doiName': 'Not Available', 'keywords': ['Complete trisomy 21 syndrome (disorder)', 'Biomaterials', 'HBRC', 'UKCRC Tissue Directory', 'Human']}",2f085ac6-d33d-4b9b-8a99-624cc51c3f17,"{'physicalSampleAvailability': ['PM TISSUE'], 'spatial': 'England', 'typicalAgeRange': '0-4'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'f97e7e63-d8f9-48c2-a3f7-8d4130adae7e', '3.0.0': '89aac17d-f8a1-4ddc-9495-4adc278234a9', '1.0.0': 'be8bd620-e7a8-49be-89e7-c1b345682157', '2.0.0': '236108a2-5e2c-4acb-86e7-6ec793aef8ab', 'latest': '89aac17d-f8a1-4ddc-9495-4adc278234a9'}","{'description': 'The HBRC is an HTA-licensed biorepository dedicated to the collection of appropriately consented high quality human biomaterials, their processing, storage and distribution to biomedical researchers. The HBRC resides within the purpose-built Advanced Therapies Facility (ATF) within the College of Medical and Dental Sciences (CMDS) at the University of Birmingham (UoB). The ATF also houses both cell and gene therapy manufacturing units.\nSamples are collected, processed and stored (or released) from patients in a variety of disease settings in response to local demand and research strategies in order to facilitate existing research and enable future research areas to be developed. Samples may comprise adult or paediatric tissue which is waste, or surplus to diagnosis taken at the time of surgery or treatment, additional samples taken specifically for research purposes, material taken from patients enrolled in clinical trials, and control material. The HBRC works with local researchers and carries out bespoke tissue collections. All samples can be annotated with the appropriate clinical data which makes them scientifically useful. \nAlthough the HBRC is primarily a resource for local researchers within CMDS and local NHS Trusts, applications from other UK research groups and the commercial sector are also considered. The policy and procedures associated with the review of these applications, and the subsequent release of samples and associated data, are the same for both internal and external applicants. All samples and associated data are released for research in a fully anonymised form, and a Tissue Transfer Agreement ensures that they will only be used for the purposes approved at release and will not be transferred without written permission. In order to enhance the value of the HBRC collection, every attempt is made to secure the return of useful research data following the completion of research studies.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",89aac17d-f8a1-4ddc-9495-4adc278234a9,https://web.www.healthdatagateway.org/dataset/89aac17d-f8a1-4ddc-9495-4adc278234a9,"{'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}, 'access': {'jurisdiction': 'GB-ENG', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'dataController': 'University of Birmingham', 'dataProcessor': 'Not Applicable', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'accessRequestCost': 'Not specified'}}","{'temporal': {'startDate': '2018-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:05:20Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T15:59:45Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'CPRD COVID-19 Symptoms and Risk Factors Synthetic Dataset', 'doiName': 'https://doi.org/10.48329/yk2n-sz66\xa0', 'keywords': ['COVID-19', 'Synthetic', 'Primary care'], 'contactPoint': 'enquiries@cprd.com', 'abstract': 'This synthetic dataset is based on anonymised real primary care patient data extracted from the CPRD Aurum database. The dataset focuses on patients presenting to primary care with symptoms indicative of COVID-19.', 'publisher': {'name': 'CPRD', 'memberOf': 'ALLIANCE', 'identifier': '607db9c2e1f9d3704d570cee'}}",a48c65e2-a4e0-4d05-9e9c-fc84e050dea0,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150', 'spatial': ['https://www.geonames.org/countries/GB/united-kingdom.html'], 'pathway': 'Primary care', 'followup': 'UNKNOWN'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '21b6b27d-fe1b-4e7c-bae6-32d734d28a22', '2.0.0': '89fe9e07-0d2f-4363-83fe-bad3c732eb20', '1.0.0': '977ca75e-32da-4e60-a2e5-2bdf534a5986', 'latest': '89fe9e07-0d2f-4363-83fe-bad3c732eb20'}","{'description': 'This wholly synthetic dataset is based on real anonymised primary care patient data extracted from the CPRD Aurum database. Researchers will not be able to access the real anonymised patient data extract which were used as the basis for the synthetic dataset generation to preserve patient privacy.\n\nThe dataset focuses on patients presenting to primary care with symptoms indicative of COVID-19 (confirmed/suspected COVID-19) and control patients with negative COVID-19 test results. The dataset includes data on sociodemographic and clinical risk factors. The ‘ground truth’ CPRD Aurum data extract used as the basis for generating this synthetic dataset included data till 13/04/2021 on patients with either suspected or confirmed COVID-19 as ascertained from the primary care record. The ground truth data extract was subject to data pre-processing and as such, the synthetic dataset based on this, does not reflect the structure of the source CPRD Aurum database.\n\nThe development of this synthetic dataset was funded by NHS X using the synthetic data generation and evaluation framework developed by CPRD under a grant from the Regulators’ Pioneer Fund launched by The Department for Business, Energy and Industrial Strategy (BEIS) and managed by Innovate UK. The methodology used to generate and evaluate this synthetic dataset is outlined in Wang et al. 2019 (DOI Bookmark:10.1109/CBMS.2019.00036).', 'associatedMedia': ['www.cprd.com/content/synthetic-data'], 'isPartOf': 'CPRD Aurum'}",89fe9e07-0d2f-4363-83fe-bad3c732eb20,https://web.www.healthdatagateway.org/dataset/89fe9e07-0d2f-4363-83fe-bad3c732eb20,"{'usage': {'dataUseRequirements': ['GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'resourceCreator': ['CPRD'], 'isReferencedBy': ['Wang,Z,Myles,P,Tucker,A. Generating and evaluating cross‐sectional synthetic electronic healthcare data: Preserving data utility and patient privacy. Computational Intelligence. 2021; 1 - 33. https://doi.org/10.1111/coin.12427'], 'investigations': ['https://www.cprd.com/protocol-list'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'NO LINKAGE', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY']}, 'access': {'dataProcessor': 'CPRD', 'accessService': 'Access to CPRD data, including UK Primary Care Data, and linked data such as Hospital Episode Statistics, is subject to protocol approval via CPRD’s Research Data Governance (RDG) Process. Independent scientific and patient advice is provided by Expert Review Committees (ERCs) and the Central Advisory Committee (CAC): https://www.cprd.com/research-applications', 'accessRequestCost': ['https://www.cprd.com/pricing'], 'deliveryLeadTime': '1-2 MONTHS', 'jurisdiction': ['GB-GBN'], 'dataController': 'Clinical Practice Research Datalink (CPRD)', 'accessRights': ['HTTPS://CPRD.COM/DATA-ACCESS']}, 'formatAndStandards': {'format': ['Tab-delimited-text'], 'language': ['en'], 'vocabularyEncodingScheme': ['SNOMED CT'], 'conformsTo': ['NHS DATA DICTIONARY']}}","{'temporal': {'distributionReleaseDate': '2021-12-01', 'endDate': '2021-04-13', 'startDate': '2019-12-03', 'accrualPeriodicity': 'OTHER', 'timeLag': 'NOT APPLICABLE'}, 'origin': {'collectionSituation': ['OTHER'], 'purpose': ['STUDY'], 'source': ['EPR', 'OTHER']}}",2021-03-30T17:04:43Z,"[{'observedNode': 'PERSONS', 'measuredValue': 4173000, 'disambiguatingDescription': 'Population size', 'observationDate': '01/12/2021', 'measuredProperty': 'COUNT'}]",2.0.0,"{'qualifiedRelation': ['CPRD Aurum (see https://cprd.com/primary-care)', 'https://web.www.healthdatagateway.org/dataset/ef42201e-deb1-4675-896a-8a0162fe52a8'], 'tools': ['https://www.computer.org/csdl/proceedings-article/cbms/2019/228600a126/1cdNZZBJaV2'], 'derivation': ['Not Applicable']}",2022-02-18T11:57:07Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 46, 'structuralMetadata.columnName': 46, 'structuralMetadata.columnDescription': 46, 'structuralMetadata.dataType': 46, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '99d7ed26-e9a4-4b98-840d-a2b1832f4c51', 'description': 'The dataset for the Synthetic data (file xxx_yyyCovidSynData.txt) is in a comma separated values (csv) format. It is separated by the character ‘,’. In the title of the file, the “xxx” refers to the version number and it can be between 001 and 999. The “yyy” refers to the number of versions of the ground truth file.', 'name': 'Synthetic COVID', 'dataElementsCount': 46, 'dataElements': '07aad13d-5d3b-40b7-9ada-125bafbf0579, b2493165-257d-4901-84b4-12fa1c1a3ee0, 033663b1-4b75-4270-9ba5-63bbdd40380e, 51a03369-990c-4cde-a5cf-65a5ebb560ab, c151da85-ea48-412d-8929-3c2cc863e71d, 7c3c7616-ff42-4753-8f1d-59b8c2cf42b3, 9e238a90-930b-4fc0-82d9-b9baa3b14c0d, cbc88f49-cf75-4f10-8517-160a84e57e76, 318c3a04-b077-48d9-ba17-376638b6691d, 89270474-fa69-4b89-aa13-6ab925e83121, 50b900b9-af9a-4870-9a25-f33be5a6149c, fa7d2029-3a6c-4aae-b77c-4fe3b3bf96c6, a620321b-c39e-46a6-8755-587242d155e1, 20bc1f6f-ccf0-4248-b07b-7e1502cf7c56, cd6dfb91-96e4-4290-b30e-48cb90cfd0df, 5ece5fbc-b658-4231-8ade-f5ba45d1ccb7, 7a760601-0dde-40ab-bfed-ab88c37379cf, 59052061-1687-490e-a28f-3140d78f0aca, ed6ff7ab-c7e7-4f82-ae06-9bb8d2002bd0, 44451e0f-f823-439e-be24-222607e59e9b, 949f0325-6f36-466a-b5f5-8970f038139d, 104015ec-0467-4066-b7f7-c38af3d85be3, 182b80a0-91af-45a1-84b9-d1692337935e, f2415bad-25fb-464d-a929-25d67b5c270e, ac259697-df6a-4ffd-8fb4-2a7cc6c04599, a929e5f0-aa34-441a-9bed-3a484608c010, 2eae820d-c272-4872-8442-63f6a61b1abc, ec8cd4b7-5fa9-4596-8fc7-44d8f3bf9e56, 64b2e416-da4f-4c73-bf9d-b1366e1fc6c9, f4954d0e-1e32-4ae6-a6d2-e5cc871726dc, 4c28ba61-bedd-420c-a02f-ffdec56ed0e2, fe8e84e6-bd77-452e-a716-6fccacb54ccb, a5148476-0356-4993-bc2a-d9ac9074fb72, 70e9398a-4990-4ea9-b019-d2f87efed2c8, 50dff2da-b3f5-4fe4-b564-ba2b6364b1fd, 84600f18-498f-4344-aabf-e4e59024d026, b058695a-8ad7-4a36-9b5a-f8b31fdf976b, d73998ae-8421-4f94-853f-57c5bbb583d5, 3e47fba5-a1f9-45df-810d-27945fa05880, d0daf7b2-a1f6-4d6d-b696-be8637b26008, 9229fde1-0949-425a-b574-1315672ceab5, 085e53d7-9ad9-47c8-8182-8295ce8997e8, 3ce280cb-e2eb-4d26-bedc-1096b5a9d484, c2c7e998-a99b-41b9-bc3c-a121a9bcc577, e62294cb-3a7e-4a6b-b934-740c201f970d, bd357f04-533e-4ec5-825f-9d3fe873d48d'}]}"
"{'title': 'Studies Supported by NIHR CRN, ICD10 Coded, with Summary Site Recruitment Data', 'keywords': ['Trials, Studies, NIHR, Clinical Research, ICD10, Research Participation, HRCS, NHS Trust, GP Practice, NIHR CRN'], 'publisher': {'memberOf': 'ALLIANCE', 'name': 'NIHR CLINICAL RESEARCH NETWORK', 'identifier': '608921f2813359fb2eea45ac'}, 'abstract': 'All non-commercial studies supported by NIHR CRN to date with HRCS and ICD10 codings where present. For each study, there is a list of all NHS Trusts and GP Practices which have recruited participants for studies and the total number of participants/month.', 'contactPoint': 'crncc.ig@nihr.ac.uk'}",02397c83-62e6-4ec2-8366-89d211739564,"{'spatial': 'https://www.geonames.org/countries/GB/united-kingdom.html', 'pathway': 'This dataset is not representative of the patient pathway', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '8a0d67e2-6daa-4ebe-913b-eb5ede8801ba'},"{'description': 'This dataset comprises summary records of all non-commercial clinical research projects which have been supported* by the National Institute for Research Clinical Research Network [CRN]. The majority of these studies have been coded according to the disease(s) or condition(s) they are investigating. This classification has been done by a clinical coder using ICD10 and HRCS** codes.\n\nAccompanying this information is a list of all the NHS Trusts and GP Practices which have recruited participants for these studies with the number of participants recruited each month. The Trusts and GP Practices are identified by name and ODS Code.\n\n\n*Studies receive CRN support through a formal process based on criteria set by DHSC (https://www.nihr.ac.uk/documents/eligibility-for-nihr-clinical-research-network-support/23746). For the purposes of this extract it includes all studies added to the NHR CRN Portfolio since 1st January 2008.\n**UKCRC Health Research Classification System Health Categories.', 'isPartOf': 'NOT APPLICABLE'}",8a0d67e2-6daa-4ebe-913b-eb5ede8801ba,https://web.www.healthdatagateway.org/dataset/8a0d67e2-6daa-4ebe-913b-eb5ede8801ba,"{'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['USER SPECIFIC RESTRICTION', 'PUBLICATION REQUIRED'], 'investigations': [''], 'resourceCreator': ['National Institute for Health Research Research Clinical Research Network']}, 'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['ODS', 'ICD10', 'LOCAL', 'OTHER'], 'conformsTo': ['LOCAL'], 'format': ['Comma Separated Values']}, 'access': {'accessRights': ['https://sites.google.com/nihr.ac.uk/nihrcrndatasharing/home'], 'dataController': 'The Department of Health and Social Care', 'deliveryLeadTime': '1-2 WEEKS', 'accessRequestCost': ['None'], 'jurisdiction': ['GB-GB'], 'accessService': 'At present, there is no data access environment, but there is a process for requesting a copy of the dataset. Please use this link: https://sites.google.com/nihr.ac.uk/nihrcrndatasharing/home to complete a data access request.\n\nOn approval of an application for access a file containing the data will be sent by email to the applicant.', 'dataProcessor': 'National Institute for Health Research Research Clinical Research Network'}}","{'origin': {'source': ['OTHER'], 'collectionSituation': ['OTHER'], 'purpose': ['ADMINISTRATIVE']}, 'temporal': {'accrualPeriodicity': 'IRREGULAR', 'startDate': '2008-01-01', 'timeLag': 'LESS 1 WEEK'}}",2021-05-26T14:14:28Z,"[{'observedNode': 'EVENTS', 'measuredValue': '7883974', 'disambiguatingDescription': 'The data set is concerned with the number of consents to join clinical research which have been taken. Hence the observed node in this case is the consent event. 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"{'title': 'National Joint Registry - Primary Knee Replacement dataset', 'publisher': {'name': 'HQIP', 'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d23'}, 'contactPoint': 'research@njr.org.uk', 'keywords': ['Replacement', 'Knee', 'NJR', 'Joint', 'Primary', 'Registry'], 'abstract': 'The NJR datasets collect continuous, prospective data on patients undergoing primary and revision total joint replacement (hip, knee, shoulder, elbow and ankle). The dataset covers the period 2003 to present and covers the UK and beyond'}",d517e6fc-9a88-4647-b787-dcbed3635885,"{'spatial': ['https://www.geonames.org/3042225/isle-of-man.html', 'https://www.geonames.org/3042363/guernsey.html', 'https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html', 'https://www.geonames.org/2641364/northern-ireland.html'], 'followup': 'UNKNOWN', 'pathway': 'Data is representative of the patient pathway. Readmissions for reasons other than revision surgery are not collected.', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'b4d7e5b9-e903-4bd1-a98f-b722a60fc47e', '4.0.0': '8a4d097a-3ef2-4452-b6e0-98e2baebb427', '3.0.0': 'dd2b5b8c-a2b5-48f2-a2b2-0432d54a0486', '2.0.0': 'f4915e4b-639c-45ae-9b0f-afab547e1104', '1.0.0': '9bc3ace3-cfbb-4c2a-b523-adede4b7e00b', 'latest': '8a4d097a-3ef2-4452-b6e0-98e2baebb427'}","{'description': ""The National Joint Registry for England, Wales, Northern Ireland and the Isle of Man is a database containing details of all primary and revision total hip, knee, shoulder, elbow and ankle replacement procedures carried out in NHS and independent sector hospitals in England, Wales, Northern Ireland and the Isle of Man.  Primary hip replacement has its own specific dataset for procedures.\nInitially this data is collected during a patient's time at hospital as part of bespoke data collection to support the NJR . This is submitted to NEC Software Solutions (contracted to the NJR) for processing and is used to monitor the quality and safety of patient care and outcomes. \nThis same data can also be processed and used for non-clinical purposes, such as research and planning health services. Because these uses are not to do with direct patient care, they are called 'secondary uses'. This is the NJR research ready data set.\nNJR data covers all procedures carried out in NHS and independent sector hospitals  in England, Wales (from 2003), Northern Ireland )from 2013), the Isle of Man (from 2015) and the States of Guernsey (from 2019).\nEach NJR record contains a wide range of information about an individual patient treated at an NHS or independent sector hospital, including:\n• clinical information about surgical indications and operations\n• patient information, such as age group and gender\n• component information, such as the brand and size of prosthesis used\n• outcomes, such as whether a revision procedure has been undertaken\nNJR apply a strict statistical disclosure control in accordance with the NHS Digital protocol, to all published NJR data. This suppresses small numbers to stop people identifying themselves and others, to ensure that patient confidentiality is maintained.\nWho NJR data is for\nNJR can provide data for the purpose of healthcare analysis to the NHS, government and others including:\n• national bodies and regulators, such as the Department of Health, NHS England, Public Health England, NHS Improvement and the CQC\n• local Clinical Commissioning Groups (CCGs)\n• provider organisations\n• government departments\n• researchers and commercial healthcare bodies\n• National Institute for Clinical Excellence (NICE)\n• patients, service users and carers\n• the media\nUses of the statistics\nThe statistics are known to be used for:\n• national policy making\n• benchmarking performance against other hospital providers or CCGs  \n• academic research\n• analysing service usage and planning change\n• providing advice to ministers and answering a wide range of parliamentary questions\n• national and local press articles\n• international comparison\nMore information can be found at http://www.njrcentre.org.uk/njrcentre/"", 'isPartOf': 'NJR', 'associatedMedia': ['https://www.njrcentre.org.uk/njrcentre/Research/Research-requests']}",8a4d097a-3ef2-4452-b6e0-98e2baebb427,https://web.www.healthdatagateway.org/dataset/8a4d097a-3ef2-4452-b6e0-98e2baebb427,"{'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'format': ['Tab delimited file made available via NJR Data Access Portal'], 'vocabularyEncodingScheme': ['LOCAL']}, 'access': {'deliveryLeadTime': 'VARIABLE', 'jurisdiction': ['GB-EAW'], 'dataProcessor': 'NEC Software Solutions', 'accessRights': ['http://www.njrcentre.org.uk/njrcentre/Research/Research-requests', 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England', 'accessRequestCost': ['http://www.njrcentre.org.uk/njrcentre/Portals/0/NJR%20cost%20recovery%20policy%20April%202019%20v1.0.pdf?ver=2019-04-04-105011-240']}, 'usage': {'dataUseLimitation': ['NO RESTRICTION'], 'resourceCreator': [""the study title should be followed by the suffix: ‘An analysis from the National Joint Registry'. 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"{'title': 'COVID-19 Consolidated Deaths', 'doiName': 'In Progress', 'keywords': ['Covid-19', 'CDDS', 'SAIL', 'NCS', 'National Core Study', 'COVID-19'], 'publisher': {'contactPoint': 'SAILDatabank@swansea.ac.uk', 'memberOf': 'ALLIANCE', 'name': 'SAIL'}, 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'abstract': 'COVID-19 Consolidated Deaths dataset. Similar to the usual Annual deaths extract (SAIL Databank), except this dataset contains additional information with relevance to deaths where Covid-19 is attributable.'}",70e37f44-5c3e-4c83-a42a-89b3476d1d45,"{'pathway': 'Covid-19 specific deaths', 'spatial': 'Wales', 'typicalAgeRange': '0-150', 'followup': 'OTHER', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': 'c809126e-315b-4bcc-8fa3-741317bf9a4e', '3.0.0': '8bbcf9f4-a3c4-4f26-aa0e-c5c46457afa3', '1.0.0': 'ea3f0b0e-d91a-479f-a44e-010d86ddaf3f', '0.0.1': 'efc2bb06-d502-4424-ac92-72834459fbaa', 'latest': '8bbcf9f4-a3c4-4f26-aa0e-c5c46457afa3'}","{'description': 'COVID-19 Consolidated Deaths dataset.\n\nThis dataset contains more Covid-19 related information than the standard deaths extract (ADDE).', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://saildatabank.com/about-us/overview/']}",8bbcf9f4-a3c4-4f26-aa0e-c5c46457afa3,https://web.www.healthdatagateway.org/dataset/8bbcf9f4-a3c4-4f26-aa0e-c5c46457afa3,"{'access': {'dataController': 'SAIL Databank', 'accessRequestCost': 'Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.', 'dataProcessor': 'SAIL Databank', 'jurisdiction': 'GB-WLS', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'deliveryLeadTime': '2-6 MONTHS', 'accessRights': ['https://saildatabank.com/application-process/']}, 'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': 'GENERAL RESEARCH USE', 'isReferencedBy': ['Lyons, J., Akbari, A., Torabi, F., Davies, G. I., North, L., Griffiths, R., Bailey, R., Hollinghurst, J., Fry, R., Turner, S. L., Thompson, D., Rafferty, J., Mizen, A., Orton, C., Thompson, S., Au-Yeung, L., Cross, L., Gravenor, M. B., Brophy, S., Lucini, B., … Lyons, R. (2020). Understanding and responding to COVID-19 in Wales: protocol for a privacy-protecting data platform for enhanced epidemiology and evaluation of interventions. BMJ open, 10(10), e043010. https://doi.org/10.1136/bmjopen-2020-043010'], 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'resourceCreator': 'NHS Wales’ Informatics Service (NWIS)'}, 'formatAndStandards': {'vocabularyEncodingScheme': 'LOCAL', 'format': ['SQL database table'], 'language': 'en', 'conformsTo': 'LOCAL'}}","{'temporal': {'accrualPeriodicity': 'DAILY', 'endDate': '2020-08-18', 'distributionReleaseDate': '2020-04-29', 'timeLag': 'NO TIMELAG', 'startDate': '2019-01-01'}, 'origin': {'source': 'OTHER', 'collectionSituation': 'OTHER', 'purpose': 'ADMINISTRATIVE'}}",2020-08-20T16:18:25Z,,3.0.0,"{'qualifiedRelation': ['Linkable at the person level to any dataset with SAIL anonymised linkage field.'], 'derivation': ['Not Available'], 'tools': ['https://conceptlibrary.saildatabank.com/']}",2021-04-09T18:29:38Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 29, 'structuralMetadata.columnName': 29, 'structuralMetadata.columnDescription': 29, 'structuralMetadata.dataType': 29, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '361b1de1-1a92-4492-9ec7-5394cc595669', 'description': 'Covid-19 consolidated deaths data', 'name': 'DF_COVID_DEATHS_CONSOLIDATED', 'dataElementsCount': 29, 'dataElements': 'b76acfa5-0451-4ea2-9833-b0675692c720, 1ceb0a42-ccc8-4a40-ac9a-a96dd88f0b2f, 65a5ad2f-666d-4c13-90c6-b5587822d6f7, deadb185-f9ee-4e3a-87d9-2787d56f8ba1, 94922447-7fe1-4498-8d74-404e4fe2a6b8, dce6f2f0-9537-4687-a982-66499b856f9a, f6bb191e-d30d-4ba9-81f2-d30ba8cb1c76, 1bb44c0d-70a1-47cf-a9e5-7f950245c335, 3c8e1112-9d25-432c-9d2d-a68670566495, de5ade12-e5cf-42d9-9863-fe9d4ea7245c, 29959da4-c07b-4f5d-9894-b2e31ba22e68, fd94fedd-6f6e-4d22-b03c-a0b47f275959, 5a36bd6b-9321-49d1-adc9-1470e1cb562b, 67720fe4-1486-4baf-84cc-e35dc0351899, b7072193-3c2b-49ca-bd20-53aaa652e209, f1632bf0-f37c-4f72-81b4-a2a75d566459, 3b35caac-f294-47e8-acf0-a2822890aa70, 6c488185-20c6-444c-a88a-50ef6996e61f, 0ed98e51-1501-45b9-8bf7-75e5ce708859, 8589441c-469b-425a-9783-e461b64c764b, 2be014ca-8c74-48c1-b32a-cefed1ddc52a, 528d7081-d07c-4d1c-836a-ba1ee81981de, 149ab8f3-ec0a-42c4-81b2-fe05465dbc45, e2ad7994-e740-4609-995c-f2b350e89517, 579e6154-a869-421e-a538-f549c90feef9, 626624d9-9276-4807-8a90-180960f0f83b, 57b7f0d4-b76a-46c4-acd6-1998eb209e65, f261014e-5020-479b-98d7-8f9419e89e15, 3d9d6ee3-598b-4778-98e8-12d350baccf5'}]}"
"{'title': 'National Joint Registry - Revision Ankle Replacement dataset', 'contactPoint': 'research@njr.org.uk', 'publisher': {'identifier': '607db9c4e1f9d3704d570d23', 'name': 'HQIP', 'memberOf': 'ALLIANCE'}, 'abstract': 'The NJR datasets collect continuous, prospective data on patients undergoing primary and revision total joint replacement (hip, knee, shoulder, elbow and ankle). The dataset covers the period 2003 to present and covers the UK and beyond', 'keywords': ['Joint', 'Ankle', 'Revised', 'Replacement', 'NJR', 'Registry']}",b4f076d2-c9a3-49ba-84f4-94148dc8511a,"{'followup': 'UNKNOWN', 'spatial': ['https://www.geonames.org/3042225/isle-of-man.html', 'https://www.geonames.org/3042363/guernsey.html', 'https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html', 'https://www.geonames.org/2641364/northern-ireland.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150', 'pathway': 'Data is representative of the patient pathway. Readmissions for reasons other than revision surgery are not collected.'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '06f69eb7-2a70-45c6-bc6d-f5c759cb25cf', '4.0.0': '8bbfbc8c-dad2-4a0b-b255-4aae3687a371', '1.0.0': '0d5f09d4-6fee-4e51-b193-ca0d8fa2193a', '2.0.0': '2c0e04bc-2f16-4903-90dc-c9d57ab40efb', '3.0.0': '69547543-ca00-455c-872d-a176191d5ada', 'latest': '8bbfbc8c-dad2-4a0b-b255-4aae3687a371'}","{'description': ""The National Joint Registry for England, Wales, Northern Ireland and the Isle of Man is a database containing details of all primary and revision total hip, knee, shoulder, elbow and ankle replacement procedures carried out in NHS and independent sector hospitals in England, Wales, Northern Ireland and the Isle of Man.  Primary hip replacement has its own specific dataset for procedures.\nInitially this data is collected during a patient's time at hospital as part of bespoke data collection to support the NJR . This is submitted to NEC Software Solutions (contracted to the NJR) for processing and is used to monitor the quality and safety of patient care and outcomes. \nThis same data can also be processed and used for non-clinical purposes, such as research and planning health services. Because these uses are not to do with direct patient care, they are called 'secondary uses'. This is the NJR research ready data set.\nNJR data covers all procedures carried out in NHS and independent sector hospitals  in England, Wales (from 2003), Northern Ireland )from 2013), the Isle of Man (from 2015) and the States of Guernsey (from 2019).\nEach NJR record contains a wide range of information about an individual patient treated at an NHS or independent sector hospital, including:\n• clinical information about surgical indications and operations\n• patient information, such as age group and gender\n• component information, such as the brand and size of prosthesis used\n• outcomes, such as whether a revision procedure has been undertaken\nNJR apply a strict statistical disclosure control in accordance with the NHS Digital protocol, to all published NJR data. This suppresses small numbers to stop people identifying themselves and others, to ensure that patient confidentiality is maintained.\nWho NJR data is for\nNJR can provide data for the purpose of healthcare analysis to the NHS, government and others including:\n• national bodies and regulators, such as the Department of Health, NHS England, Public Health England, NHS Improvement and the CQC\n• local Clinical Commissioning Groups (CCGs)\n• provider organisations\n• government departments\n• researchers and commercial healthcare bodies\n• National Institute for Clinical Excellence (NICE)\n• patients, service users and carers\n• the media\nUses of the statistics\nThe statistics are known to be used for:\n• national policy making\n• benchmarking performance against other hospital providers or CCGs  \n• academic research\n• analysing service usage and planning change\n• providing advice to ministers and answering a wide range of parliamentary questions\n• national and local press articles\n• international comparison\nMore information can be found at http://www.njrcentre.org.uk/njrcentre/"", 'associatedMedia': ['https://www.njrcentre.org.uk/njrcentre/Research/Research-requests'], 'isPartOf': 'NJR'}",8bbfbc8c-dad2-4a0b-b255-4aae3687a371,https://web.www.healthdatagateway.org/dataset/8bbfbc8c-dad2-4a0b-b255-4aae3687a371,"{'access': {'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England', 'dataProcessor': 'NEC Software Solutions', 'accessRights': ['http://www.njrcentre.org.uk/njrcentre/Research/Research-requests', 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'jurisdiction': ['GB-EAW'], 'accessRequestCost': ['http://www.njrcentre.org.uk/njrcentre/Portals/0/NJR%20cost%20recovery%20policy%20April%202019%20v1.0.pdf?ver=2019-04-04-105011-240'], 'deliveryLeadTime': 'VARIABLE'}, 'formatAndStandards': {'language': ['en'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL'], 'format': ['Tab delimited file made available via NJR Data Access Portal']}, 'usage': {'investigations': ['https://www.njrcentre.org.uk/njrcentre/Research/Research-Portfolio'], 'dataUseLimitation': ['NO RESTRICTION'], 'resourceCreator': ['""the study title should be followed by the suffix: ‘An analysis from the National Joint Registry\'.'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS']}}","{'origin': {'collectionSituation': ['IN-PATIENTS', 'PRIVATE'], 'source': ['EPR', 'ELECTRONIC SURVEY', 'PAPER BASED'], 'purpose': ['AUDIT', 'DISEASE REGISTRY', 'OTHER']}, 'temporal': {'startDate': '2010-04-01', 'timeLag': 'VARIABLE', 'accrualPeriodicity': 'CONTINUOUS'}}",2020-01-13T14:55:22Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '3016279', 'disambiguatingDescription': 'total number of NJR records analysed for the 2019 annual report', 'observationDate': '01/09/2020', 'measuredProperty': 'Count'}]",4.0.0,"{'derivation': ['Not available'], 'qualifiedRelation': ['HES - available subject to additional permissions', 'National PROMS - available subject to additional permissions', 'National PROMS - available subject to additional permissions']}",2022-01-07T11:20:38Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 48, 'structuralMetadata.columnName': 48, 'structuralMetadata.columnDescription': 48, 'structuralMetadata.dataType': 48, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'ffc81712-4d8b-4fa6-b8b5-f2a8bffcb7a9', 'description': 'Data fields for NJR revision ankle replacement dataset', 'name': 'National Joint Registry Revision Ankle Replacement Dataset', 'dataElementsCount': 48, 'dataElements': 'ee58ff75-f1ec-4185-ba50-b6eaf0511e99, 08e7de62-a8b3-414d-a878-31dd8a021c11, 108ee464-4ef3-491a-9f85-e1bb71ba85c6, 1c90d99d-4566-4db5-b3cf-1c2d76743481, 4123ad3e-a8ec-4f9b-9fd9-6c188a3e1f3a, 67631013-7640-44b7-8cdd-05a98c76b15a, c62486df-244f-4c32-a7d5-c876f669129a, 6deb3031-65c2-4975-b0eb-2d9d15c664bf, e3d0e217-daed-476e-b2cf-ec4ee00b1315, 92634fc8-b241-4191-ad9c-a00c5bdac94d, ca60f6b1-4c1a-4a3c-9dd3-4949c05955de, a001a13b-6e67-463c-80fa-3dc539231c87, bce7cfc9-1c28-4314-9429-b24eb3dbcd5e, ee0b98b0-164a-4807-932d-197e3ec82b64, 0bf324e0-9af2-430a-bcc2-d344a62e88e9, c5fe4ed9-48d0-40ee-9c81-f4632e832160, 4e803984-d166-4481-b0bb-fc554daaf557, a9c5300d-ef12-4eae-ab38-355b903268a1, 4513fd19-f4c9-4386-b403-15bcbc34a2f3, fd05cca1-8853-4f1e-89ef-c4fa91629d76, 843570f9-56ff-4e2e-be14-ef7c19f2e3fb, 4c9c0f52-98a2-4f87-8192-408194ad0fe6, c822e1a3-66a2-4919-8f25-7f87c8834874, a5479e7c-9243-46aa-8e28-7c98c24182e0, 780017d0-b6ea-4fd7-ba9a-be4be90f11a0, f5cf4cae-945d-4cb9-8665-2f685023676f, d3b5e2bf-1048-4282-8e0b-7bc9e1e4a016, 511a054f-ccc0-4813-843d-6a8dda8602bf, db7f060d-d6e9-4e61-96ff-7d4b47e685c8, 6141cb60-ebb5-4f9c-b5cd-134bf3374537, e7903574-1a67-407e-bea9-c71f619dcfe9, ccf84708-d6be-48bc-b5b3-2aa225663577, 37e8d9df-30c0-4464-a327-3b752775f6d0, bf29ae3b-8725-4647-be19-fec868adf545, 85fc6ded-c17c-4b3e-b135-162c9723a635, dc92450e-4b10-4f07-8e50-0ea1da208fea, fb9f4dc1-52d0-47ce-b09b-bea081899ca1, bf97bc43-2ceb-4bc9-b812-c86d4737ad29, 3501f06d-8384-458a-94a6-90313dcd60bc, 6e8d7321-4e0e-4228-bd15-4f3f51eb306b, 4c82dc06-a8d0-4b46-b6b2-a99c9f51108e, 16af1438-deba-47ce-a5b8-c114448955b3, 8d8e60a3-67c3-41ff-a203-6eace3634e70, 31dd3850-939f-47ed-8086-ee6c1a0452bd, d6f4ad01-b5c8-4f4e-8f2b-20f5c391aef9, 1145b72a-b074-41d4-92cb-6df75752003e, d3815c14-016f-465d-a0f3-4d0c28d3bdf0, 45c76e5f-d8c7-450b-b962-4d858ab65c44'}]}"
"{'title': 'A dataset of monitored patient safety indicators in 3 acute hospital settings', 'abstract': 'Monthly nursing quality and safety key indicator data (numerator and denominator) across 3 hospital sites. Data prior and post migration to a new electronic health system (EHS) to enable the impact on patient safety and clinical quality to be measured.', 'publisher': {'memberOf': 'HUB', 'identifier': '607db9c5e1f9d3704d570d5f', 'name': 'PIONEER'}, 'contactPoint': 'PIONEER@UHB.NHS.UK', 'keywords': ['Acute Care', 'patient pathways', 'patient safety', 'Quality Outcomes', 'Admissions', 'Computerised Point of Entry System', 'Clinical efficiency', 'Electronic Health Records', 'Indicators', ' drugs', 'medicines', 'observations', 'blood pressure', 'pulse rate', 'oxygen saturations', 'Prescriptions', 'drug administrations', 'late doses', 'missed doses']}",4985feee-3c91-47be-a122-2e13073bdac9,"{'followup': '1 - 10 YEARS', 'typicalAgeRange': '17-110', 'spatial': ['United Kingdom,England,West Midlands'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Data is representative of the multi-ethnicity population within the West Midlands (42% non white). Data includes all patients admitted during this timeframe, with National data Opt Outs applied, and therefore is representative of admissions to secondary care. Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '8bffc58f-c78c-43c4-b74b-c94479a76f91'},"{'description': 'Background. Electronic Health Records (EHRs) embedded into hospital systems have been reported to have benefits including reductions in patient safety events.\n\nThe dataset includes the summarised performance of three key clinical indicators. These nursing indicators are based on clinical quality and patient safety. Data is provided prior and post migration to a fully integrated Electronic Health System (EHS) with monthly numerator and denominators. The data covers the implementation at three hospital sites in Birmingham. Further supporting data can be requested from PIONEER to analyse the impact on patient safety and key outcomes such a mortality, length of stay, escalation to intensive care and readmissions.\n\nPIONEER geography: The West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix.\n\nElectronic Health Record. UHB is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems) and this record includes the adoption of the EHR at two new hospital sites, a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.\n\nScope: The dataset includes summarised data for performance of three clinical indicators, primarily:\n\n- Late/Missed Antibiotics – this is the prescribed dose administered on time, late or missed by ward area each month.\n\n- Late/Missed Non-Antibiotics – this is the prescribed medication (excluding antibiotics) which have been administered on time, administered late or missed by ward area each month.\n\n- 12 Hour Observations – a measure to assess that a patient has a full set of physiological observations taken every 12 hours. These include temperature, blood pressure, respiratory rate and oxygen saturations. The data within this dataset are only the compliance count, but PIONEER has full results available on request.\n\nAvailable supplementary data: Matched controls; synthetic data.\n\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.'}",8bffc58f-c78c-43c4-b74b-c94479a76f91,https://web.www.healthdatagateway.org/dataset/8bffc58f-c78c-43c4-b74b-c94479a76f91,"{'formatAndStandards': {'format': ['SQL'], 'vocabularyEncodingScheme': ['SNOMED CT', 'ICD10', 'NHS NATIONAL CODES', 'LOCAL'], 'conformsTo': ['LOCAL'], 'language': ['en']}, 'access': {'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/'], 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  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"{'title': 'Sectra PACS', 'publisher': {'memberOf': 'ALLIANCE', 'contactPoint': 'surjeet.janjuha@nhs.net', 'name': 'BARTS HEALTH'}, 'abstract': 'Sectra is the Imaging system used by Trusts Radiology department across all sites. Datasets are available for both the PACS data model and the RIS data model', 'contactPoint': 'surjeet.janjuha@nhs.net'}",10bf4c08-6702-44fe-8faa-1280dea6b0c9,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '6189c8d6-c2aa-4a5f-8c35-ea9fd5a0af39', '2.0.0': '8c7abca7-4292-4d1f-b311-c132a7adf109', '1.0.0': '04f4604e-6d0b-4100-977b-59c3b69b0cfc', 'latest': '8c7abca7-4292-4d1f-b311-c132a7adf109'}","{'description': None, 'isPartOf': 'N/A'}",8c7abca7-4292-4d1f-b311-c132a7adf109,https://web.www.healthdatagateway.org/dataset/8c7abca7-4292-4d1f-b311-c132a7adf109,"{'access': {'accessRights': 'Available locally within Trust corporate Data Warehouse System and authorised access by Trust staff only.', 'deliveryLeadTime': 'OTHER'}}",,2020-01-13T16:54:43Z,,2.0.0,,2021-02-21T15:18:38Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Falls and Fragility Fracture Audit Programme Fracture Liaison Service Database clinical dataset', 'keywords': ['Fall', 'Database', 'Fracture Liaison Service', 'Fragility', 'FFFAP', 'Clinical Dataset', 'Audit'], 'publisher': {'name': 'HQIP', 'contactPoint': 'DataSharing@hqip.org.uk', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'DataSharing@hqip.org.uk', 'abstract': 'The FLS-DB is a continuously-ascertained, record-level dataset from England and Wales on the patterns of assessment and treatment for osteoporosis and falls, across primary and secondary care, in patients who have sustained a fragility fracture.'}",d94a604c-5733-4f07-93bb-e77b6ea2313f,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '28af95d7-fbf0-4a78-a280-71711803a529', '3.0.0': '8c8cf129-e87c-46b3-8812-19e07578ee89', '1.0.0': '7cc39c86-682f-4cb9-a979-19b11876d521', '2.0.0': '237e724d-03b2-478c-a92d-85a1baa6ae53', 'latest': '8c8cf129-e87c-46b3-8812-19e07578ee89'}","{'description': 'The FLS-DB is a continuously ascertained, record-level dataset which commenced in January 2016. It contains data from England and Wales on the patterns of assessment and treatment for osteoporosis and falls, across primary and secondary care, in patients who have sustained a fragility fracture.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",8c8cf129-e87c-46b3-8812-19e07578ee89,https://web.www.healthdatagateway.org/dataset/8c8cf129-e87c-46b3-8812-19e07578ee89,"{'formatAndStandards': {'language': ['en']}, 'access': {'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data\nhttps://www.rcplondon.ac.uk/guidelines-policy/applying-work-falls-and-fragility-fracture-audit-programme-data', 'deliveryLeadTime': 'OTHER', 'jurisdiction': 'GB-GBN'}}",,2020-01-13T14:55:17Z,,3.0.0,,2021-04-14T08:14:17Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Cancer Patient Experience Survey (CPES) for CPRD Aurum', 'contactPoint': 'enquiries@cprd.com', 'publisher': {'identifier': '607db9c2e1f9d3704d570cee', 'memberOf': 'ALLIANCE', 'name': 'CPRD'}, 'abstract': 'CPRD Aurum linked Cancer Patient Experience Survey (CPES) data on initial GP visit, through diagnosis/treatment, to the ongoing management of cancer. Note, these data are no longer routinely available; contact enquiries@cprd.com to discuss.', 'keywords': ['Cancer', 'Patient experience', 'CPES']}",fded6e24-8fef-47a4-a65e-9455bed043d3,"{'spatial': ['https://www.geonames.org/6269131/england.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'OTHER', 'pathway': 'Cancer registration data are collected from a range of health care provider systems and other services.', 'typicalAgeRange': '0-115'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'3.0.0': 'd90830f4-5aaa-4075-8c8d-839627224d16', '5.0.0': '8d00d72e-d10a-4cbc-8f81-95339b25c517', '2.0.0': '4bdc64a4-9636-45de-82b3-cdcc8479e7ec', '4.0.0': '2fee4aae-94c4-40b2-9e35-4f9558a5b223', '1.0.0': 'd585c355-025f-4a10-ad81-26b12d8cf70d', '0.0.1': '1d972a74-e55a-4ca3-a414-c9ce94868428', 'latest': '8d00d72e-d10a-4cbc-8f81-95339b25c517'}","{'description': 'CPRD Aurum linked Cancer Patient Experience Survey (CPES) data include information from patients who have responded to the CPES about their cancer journey from their initial GP visit prior to diagnosis, through diagnosis and treatment and to the ongoing management of their cancer.', 'associatedMedia': ['https://www.cprd.com/linked-data'], 'isPartOf': 'CPRD Aurum'}",8d00d72e-d10a-4cbc-8f81-95339b25c517,https://web.www.healthdatagateway.org/dataset/8d00d72e-d10a-4cbc-8f81-95339b25c517,"{'access': {'accessRights': ['HTTPS://CPRD.COM/DATA-ACCESS'], 'accessRequestCost': ['https://www.cprd.com/pricing'], 'accessService': 'Access to CPRD data, including UK Primary Care Data, and linked data such as Hospital Episode Statistics, is subject to protocol approval via CPRD’s Research Data Governance (RDG) Process. Independent scientific and patient advice is provided by Expert Review Committees (ERCs) and the Central Advisory Committee (CAC): https://www.cprd.com/research-applications', 'dataProcessor': 'CPRD', 'dataController': 'Clinical Practice Research Datalink (CPRD)', 'deliveryLeadTime': 'VARIABLE', 'jurisdiction': ['GB-ENG']}, 'formatAndStandards': {'format': ['Tab delimited text'], 'conformsTo': ['OTHER'], 'language': ['en'], 'vocabularyEncodingScheme': ['OTHER']}, 'usage': {'investigations': ['https://www.cprd.com/protocol-list'], 'resourceCreator': ['Public Health England (PHE) via the National Cancer Registration and Analysis Service (NCRAS)'], 'dataUseRequirements': ['GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'isReferencedBy': ['[]'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'NO LINKAGE', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY']}}","{'temporal': {'accrualPeriodicity': 'QUARTERLY', 'endDate': '2018-12-31', 'distributionReleaseDate': '2020-12-11', 'startDate': '2001-10-20', 'timeLag': 'MORE 6 MONTHS'}, 'origin': {'purpose': ['CARE', 'DISEASE REGISTRY'], 'source': ['ELECTRONIC SURVEY'], 'collectionSituation': ['IN-PATIENTS', 'OTHER']}}",2020-01-10T18:12:20Z,"[{'observedNode': 'PERSONS', 'measuredValue': 3255865, 'disambiguatingDescription': 'Number of CPRD Aurum patients matched to a single cancer identifier', 'observationDate': '06/09/2021', 'measuredProperty': 'Count'}]",5.0.0,"{'derivation': ['N/A'], 'qualifiedRelation': ['[]'], 'tools': ['[]']}",2022-02-18T10:20:23Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
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Data are only provided by CPRD when part of a data extract is linked to CPRD GOLD.\n\nhttps://www.cprd.com/linked-data'}, 'formatAndStandards': {'conformsTo': 'OTHER', 'format': ['Tab delimited text'], 'vocabularyEncodingScheme': 'OTHER', 'language': 'en'}, 'usage': {'investigations': ['https://www.cprd.com/protocol-list'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'NO LINKAGE', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'dataUseRequirements': ['GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'resourceCreator': 'Public Health England (PHE) via the National Cancer Registration and Analysis Service (NCRAS)'}}","{'origin': {'collectionSituation': ['IN-PATIENTS', 'OTHER'], 'source': 'ELECTRONIC SURVEY', 'purpose': ['CARE', 'DISEASE REGISTRY']}, 'temporal': {'startDate': '2006-07-01', 'accrualPeriodicity': 'QUARTERLY', 'distributionReleaseDate': '2020-12-11', 'endDate': 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"{'title': 'Deaths – Date of Death', 'abstract': 'This dataset provides the definitive date of death for patients in Scotland.', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d1f', 'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE'}, 'contactPoint': 'hicsupport@dundee.ac.uk', 'keywords': ['Scotland', 'Death', 'Date', 'GRO', 'HIC']}",faf2fc49-d09f-4ea2-a2cb-b1d30fffa406,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Death data is sourced from either the Scottish General Registry Office or the Community Health Index data feeds.', 'followup': 'UNKNOWN', 'spatial': 'https://www.geonames.org/2638360/scotland.html', 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '8d33b7a7-151a-4e2e-b87f-b14371e0cb37'},"{'description': 'This dataset combines the death status from various sources into a single dataset with rules applied to decide which date of death is more accurate when the information differs between sources. Tayside Circa. 1980 – Current; Fife: 2009 - Current.', 'isPartOf': 'University of Dundee Health Informatics Centre'}",8d33b7a7-151a-4e2e-b87f-b14371e0cb37,https://web.www.healthdatagateway.org/dataset/8d33b7a7-151a-4e2e-b87f-b14371e0cb37,"{'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['Public Health Scotland'], 'dataUseRequirements': ['DISCLOSURE CONTROL']}, 'access': {'accessRequestCost': ['Quotation available on request'], 'accessService': 'HIC has implemented a remote-access Trusted Research Environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details are available via the following link:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/', 'deliveryLeadTime': 'OTHER', 'dataController': 'Local NHS boards', 'dataProcessor': 'University of Dundee, Health Informatics Centre', 'accessRights': ['https://www.dundee.ac.uk/hic/governanceservice/'], 'jurisdiction': ['GB-SCT']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'format': ['CSV', 'Database'], 'language': ['en'], 'conformsTo': ['LOCAL']}}","{'origin': {'source': ['OTHER'], 'purpose': ['ADMINISTRATIVE'], 'collectionSituation': ['OTHER']}, 'temporal': {'distributionReleaseDate': '2021-07-15', 'accrualPeriodicity': 'CONTINUOUS', 'timeLag': '1-2 WEEKS', 'startDate': '2000-01-01'}}",2021-11-19T16:08:14Z,"[{'observedNode': 'PERSONS', 'measuredValue': '2507000', 'disambiguatingDescription': '2,507,000 patients in the dataset', 'observationDate': '12/11/2021', 'measuredProperty': 'Count'}, {'observedNode': 'EVENTS', 'measuredValue': '2200000', 'disambiguatingDescription': '2.2 million dates of death', 'observationDate': '15/07/2021', 'measuredProperty': 'Count'}]",4.0.0,,2021-11-19T16:08:14Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 5, 'structuralMetadata.columnName': 5, 'structuralMetadata.columnDescription': 5, 'structuralMetadata.dataType': 5, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '96c08f03-a9f2-4dbb-9226-20196ae02c22', 'description': 'Patient death dates derived from the Community Health Index (CHI) and General Registry Office (GRO) datasets.', 'name': 'CHI_Deaths', 'dataElementsCount': 5, 'dataElements': 'a45435d5-fca9-4890-830e-7af24b2cf652, 1bcb0014-2ff4-4150-9f32-2e7dee6a71e5, 3d0e4f45-6102-473d-a34c-b3503ae887b4, b0f493a6-f907-4395-868c-4fcd4a6ee307, 9341d702-6bd7-43f8-9ebb-1d1d4f58a460'}]}"
"{'title': 'Developing and evaluating interventions to improve asthma care: HEAL ASTHMA', 'publisher': {'name': 'BREATHE', 'identifier': '607db9c2e1f9d3704d570ce6', 'memberOf': 'HUB'}, 'contactPoint': 'RESPIRE@ed.ac.uk', 'abstract': 'We aim to assess the feasibility of delivering a supported self-management incorporating an adapted pictorial asthma action plan for adult patients with asthma in a public primary care clinic in the Klang District, Selangor State, Malaysia.', 'keywords': ['asthma control', 'heal', 'practice', 'Klang', 'asthma', 'feasibility study', 'Malaysia', 'RESPIRE', 'patients', 'BREATHE', 'pictorial asthma action plan']}",216924f0-585e-4842-a165-78cf9e0af0aa,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/1733045/malaysia.html'], 'typicalAgeRange': '18-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '150ff738-40ad-45a4-b8c3-a25c4ce2d2f7', '3.0.0': '8da6766c-df44-4414-a858-4415e473ea76', '1.0.0': '079a7a2a-04d7-4fc9-80e9-b9ef3a49cd36', '0.0.2': 'f73627e3-bd7c-4be2-81b4-3baf846ab787', 'latest': '8da6766c-df44-4414-a858-4415e473ea76'}","{'description': 'We aim to assess the feasibility of delivering a supported self-management incorporating an adapted pictorial asthma action plan for adult patients with asthma in clinical practice in a public primary care clinic in the Klang District, Selangor State, Malaysia. Dataset contains follow-up responses at one-, three- and six-months post intervention. \n\nSupported self-management has been shown to reduce asthma-related morbidity and mortality in high-income countries, but poor health literacy (especially in low- and middle-income countries) is a potential barrier to its effectiveness. This study aims to assess the feasibility of delivering supported self-management incorporating an adapted pictorial asthma action plan for adult patients with asthma attending a public primary care clinic in Malaysia. This study will proceed in two phases: 1) adaptation of the pictorial asthma action plan (AAP); and 2) a feasibility study including  feasibility of assessing costs. Following the adaptation of the AAP, we assess the feasibility of using the AAP to support self-management in adults with asthma. In a pre-post study, 70 patients aged 18 years and above with physician-diagnosed asthma and currently prescribed inhaled corticosteroids will be recruited. Our proposed primary outcome is asthma control (Global Initiative for Asthma symptom control). A pre-piloted questionnaire will be used to collect baseline data on socio-demography, healthcare utilisation and expenditure, health literacy, clinical parameters (body mass index; peak expiratory flow rate).  Follow-up will be at 1, 3, and 6 months. \n\nThe protocol was approved by the Medical Research Ethics Committee, Ministry of Health Malaysia and registered with National Medical Research Registry (NMRR-18-2683-43494). The study trial registration number is ISRCTN87128530 (Pre-results).', 'isPartOf': 'BREATHE', 'associatedMedia': ['https://www.ed.ac.uk/usher/respire/chronic-respiratory-disorders/asthma-care']}",8da6766c-df44-4414-a858-4415e473ea76,https://web.www.healthdatagateway.org/dataset/8da6766c-df44-4414-a858-4415e473ea76,"{'access': {'dataController': 'RESPIRE', 'deliveryLeadTime': 'OTHER', 'accessRights': ['https://www.ed.ac.uk/usher/respire/about/projects'], 'jurisdiction': ['MY'], 'dataProcessor': 'RESPIRE', 'accessService': 'Access is managed on a project-by-project basis. Contact the RESPIRE team:'}, 'usage': {'resourceCreator': ['RESPIRE Collaboration']}, 'formatAndStandards': {'language': ['en'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL'], 'format': ['text']}}","{'temporal': {'accrualPeriodicity': 'STATIC', 'timeLag': 'NOT APPLICABLE', 'endDate': '2021-03-31', 'startDate': '2018-08-01'}}",2020-10-27T09:41:40Z,"[{'observedNode': 'PERSONS', 'measuredValue': '70', 'measuredProperty': 'Count', 'observationDate': '31/03/2021'}]",3.0.0,"{'qualifiedRelation': ['Klang Asthma Cohort: Developing and evaluating interventions at patient and practice level to improve asthma care (University of Malaysia)'], 'derivation': ['Not Available']}",2021-10-22T13:08:52Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Asthma and COPD Audit Programme (NACAP): Wales primary care dataset', 'keywords': ['Audit', 'NACAP', 'Asthma', 'COPD', 'Primary Care', 'Workstream Resources'], 'publisher': {'name': 'HQIP', 'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d23'}, 'abstract': 'Read and SNOMED coded data from general practice computer systems in Wales on asthma (adult and paediatric) and COPD is extracted. All patients over  35 with a diagnosis of COPD and all adults and children with a diagnosis of asthma in Wales are included.', 'contactPoint': 'DataSharing@hqip.org.uk'}",8a3ec96a-0600-4c6d-8761-9d277f07b9da,"{'typicalAgeRange': '0-100', 'followup': 'UNKNOWN', 'pathway': 'Information on asthma (adult and paediatric) and COPD patient care is extracted from GP practice record systems in Wales. All patients over the age of 35 with a diagnosis of COPD and all adults and children with a diagnosis of asthma in Wales are included.', 'spatial': ['https://www.geonames.org/2634895/wales.html'], 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '8daf5886-4813-465d-9145-3585a8c584bb'},"{'description': 'Dataset of record level Read and SNOMED coded data from general practice computer systems in Wales extracted in June 2019. Data is included on all patients over the age of 18 recorded to have asthma or COPD and includes patient demographics, investigation and diagnostic information as well as smoking, treatment and the provision of personalised asthma plans.', 'associatedMedia': ['https://www.hqip.org.uk/a-z-of-nca/national-asthma-and-copd-audit-programme-nacap/'], 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",8daf5886-4813-465d-9145-3585a8c584bb,https://web.www.healthdatagateway.org/dataset/8daf5886-4813-465d-9145-3585a8c584bb,"{'access': {'deliveryLeadTime': 'VARIABLE', 'jurisdiction': ['GB-EAW'], 'dataProcessor': 'Data processors include: Informatica Systems Ltd – who facilitate the extraction of data from general practices, Imperial College London – who provide statistical data analysis services, NHS Wales Informatics Service (NWIS) – who provide data reporting services for general practices via the GP Information Portal, Royal College of Physicians – who manage the audit and produce national and local reporting outputs. For more information please see information governance FAQs found on the primary care resources page: www.rcplondon.ac.uk/nacap-pc-resources', 'dataController': 'Healthcare Quality Improvement Partnership and Digital Health and Care Wales', 'accessRequestCost': ['https://www.rcplondon.ac.uk/projects/outputs/national-asthma-and-copd-audit-programme-nacap-resources', 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'accessRights': ['https://www.rcplondon.ac.uk/projects/outputs/national-asthma-and-copd-audit-programme-nacap-resources', 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data']}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'format': ['Excel', 'CSV'], 'vocabularyEncodingScheme': ['READ', 'SNOMED CT'], 'language': ['en']}, 'usage': {'dataUseLimitation': ['NO RESTRICTION'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'resourceCreator': ['Data has been provided by the Healthcare Quality Improvement Partnership from the National Asthma and COPD Audit Programme']}}","{'temporal': {'startDate': '2018-11-01', 'accrualPeriodicity': 'OTHER', 'timeLag': 'VARIABLE'}, 'origin': {'source': ['EPR'], 'collectionSituation': ['PRIMARY CARE'], 'purpose': ['AUDIT']}}",2021-11-12T10:23:13Z,"[{'observedNode': 'EVENTS', 'measuredValue': 47, 'disambiguatingDescription': 'percentage of GP practices in Wales from whom data was extracted', 'observationDate': '24/06/2021', 'measuredProperty': 'percentage'}]",5.0.0,"{'qualifiedRelation': ['None'], 'derivation': ['Not Available']}",2021-11-12T10:23:13Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Evaluating the Genetic Factors Associated with Non-Alcoholic Steatohepatitis.', 'abstract': 'Comparing the features of people with fatty liver (NASH/ASH) to those of people with no disease with the aim to develop new non-invasive tests to diagnose fatty liver disease, NASH/ASH and predict disease progression, as an alternative to liver biopsy.', 'contactPoint': 'francois.arvin-berod@nuh.nhs.uk', 'publisher': {'name': 'Research and Innovation at Nottingham University Hospitals, NHS Trust', 'memberOf': 'ALLIANCE', 'identifier': '6229d9ed19d9bc228c5b2b45'}, 'keywords': ['NAFLD', 'Biomarkers', 'Genetic variants', 'Digestive Diseases', 'Liver Diseases', 'NASH', 'ASH']}",c0e3e61c-000c-43bb-9dd1-55698198a8b6,"{'physicalSampleAvailability': ['DNA', 'AVAILABILITY TO BE CONFIRMED'], 'spatial': ['United Kingdom,England,East Midlands'], 'typicalAgeRange': '18-150', 'followup': 'OTHER', 'pathway': 'Not representative of care pathway. Recruited consecutively from secondary care.'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '797e6fb3-bf82-4513-8db3-bcae5f17316e', '2.0.0': '8e2a9ef9-bc60-4743-be2d-af453b091b38', 'latest': '8e2a9ef9-bc60-4743-be2d-af453b091b38'}","{'description': 'https://nddcbru.org.uk/Fatty-Liver-and-Steatohepatitis-Study', 'associatedMedia': [''], 'isPartOf': 'NOT APPLICABLE'}",8e2a9ef9-bc60-4743-be2d-af453b091b38,https://web.www.healthdatagateway.org/dataset/8e2a9ef9-bc60-4743-be2d-af453b091b38,"{'formatAndStandards': {'format': ['Tab-delimited text', 'csv', 'Excel', 'CDISC ODM XML', 'CDISC Transactional ODP XML', 'SAS', 'JSON'], 'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'conformsTo': ['CDISC', 'OTHER']}, 'usage': {'resourceCreator': ['', '', '', '', '', '', '', '', '', '', '', '', '', '', '', ''], 'dataUseRequirements': ['COLLABORATION REQUIRED', 'ETHICS APPROVAL REQUIRED'], 'dataUseLimitation': ['RESEARCH USE ONLY']}, 'access': {'dataProcessor': 'nPhase LTD. (REDCap Cloud EDC)', 'jurisdiction': ['GB-ENG'], 'dataController': 'Nottingham University Hospitals, NHS Trust', 'accessRights': ['In Progress']}}","{'origin': {'purpose': ['STUDY'], 'collectionSituation': ['OTHER'], 'source': ['EPR', 'PAPER BASED']}, 'temporal': {'timeLag': 'VARIABLE', 'accrualPeriodicity': 'IRREGULAR', 'startDate': '2021-05-05'}}",2022-03-30T09:21:57Z,"[{'observedNode': 'PERSONS', 'measuredValue': '113', 'disambiguatingDescription': 'Patients meeting recruitment criteria', 'observationDate': '16/03/2022', 'measuredProperty': 'Count'}, {'observedNode': 'EVENTS', 'measuredValue': '112', 'disambiguatingDescription': 'Fibroscan', 'observationDate': '16/03/2022', 'measuredProperty': 'Count'}]",2.0.0,"{'qualifiedRelation': [''], 'derivation': ['Not Known']}",2022-04-04T13:46:38Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'REal-time Assessment of Community Transmission (REACT-2)', 'publisher': {'contactPoint': 'react.access@imperial.ac.uk', 'memberOf': 'ALLIANCE', 'name': 'IMPERIAL COLLEGE LONDON'}, 'abstract': 'REal-time Assessment of Community Transmission (REACT-2) started in May 2020 to determine the prevalence of and trends in antibodies levels in study participants. This study involves approximately 150,000 unique people.', 'contactPoint': 'react.access@imperial.ac.uk', 'keywords': ['COVID', 'COVID-19', 'Coronavirus', 'Serology', 'CO-CONNECT', 'REACT', 'REACT-2', 'REACT 2', 'SARS-CoV-2', 'antibody', 'antibodies']}",25003f25-384c-4264-9c8f-dd8734ee5595,"{'typicalAgeRange': '18-65', 'followup': 'OTHER', 'physicalSampleAvailability': ['SERUM'], 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '51094348-d8b0-43bb-a743-40fa4d22da30', '1.0.0': '8e5e3ebe-c0ae-458f-bc75-a5a3368d4c2d', 'latest': '8e5e3ebe-c0ae-458f-bc75-a5a3368d4c2d'}","{'description': 'REal-time Assessment of Community Transmission (REACT-2) started in May 2020 to determine the prevalence of and trends in antibodies levels in study participants. This study involves approximately 150,000 unique people who use a finger prick test over 6 week periods, with additional information collected on contact with known cases to assess an infection point prevalence at national, regional and local levels. Within REACT 2 there is also a study on usability and efficacy of different tests.\n\nImperial College London is leading a major programme of home testing for COVID-19 to track the progress of the infection across England. Called REACT, the programme was commissioned by the Department of Health and Social Care, and is being carried out in partnership with Imperial College Healthcare NHS Trust and Ipsos MORI.\n\nREACT-2 is a world largest surveillance study undertaken in England that examines the prevalence of antibodies in the community. The study focusses on finger prick self-testing at home by individuals aged 18 or over.The findings will provide the government with a better understanding of the use of antibody tests at home as well as assess the trends in antibody levels and how they vary across different population subgroups. 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Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'deliveryLeadTime': '2-6 MONTHS'}, 'formatAndStandards': {'conformsTo': ['OTHER'], 'format': ['SQL database table'], 'vocabularyEncodingScheme': ['OTHER'], 'language': ['en']}}","{'temporal': {'accrualPeriodicity': 'ANNUAL', 'distributionReleaseDate': '2019-12-11', 'timeLag': 'OTHER', 'endDate': '2019-05-31', 'startDate': '2016-04-01'}, 'origin': {'purpose': ['ADMINISTRATIVE'], 'source': ['EPR'], 'collectionSituation': ['COMMUNITY']}}",2021-09-13T14:24:28Z,"[{'observedNode': 'EVENTS', 'measuredValue': '3000000', 'observationDate': '01/09/2021', 'measuredProperty': 'Count', 'disambiguatingDescription': 'Approx 70-80% coverage of Welsh population through GP registrations.'}]",5.0.0,"{'qualifiedRelation': ['Yes. 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"{'title': 'Welsh Longitudinal General Practice Dataset (WLGP) - Welsh Primary Care', 'abstract': 'Attendance and clinical information for all general practice interactions: includes patients symptoms, investigations, diagnoses, prescribed medication and referrals to tertiary care.', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'SAIL', 'identifier': '5f3f98068af2ef61552e1d75'}, 'keywords': ['Primary care', 'GP', 'SAIL', 'NCS', 'National Core Study', 'COVID-19', 'WLGP', 'core'], 'contactPoint': 'SAILDatabank@swansea.ac.uk'}",33fc3ffd-aa4c-4a16-a32f-0c900aaea3d2,"{'pathway': 'Primary Care', 'spatial': ['https://www.geonames.org/2634895/wales.html'], 'followup': '1 - 10 YEARS', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '8f2cb486-6a3b-418e-8fb4-b85bc454eaf3'},"{'description': 'This dataset covers 78% of the population of Wales and is linkable with anonymised fields for individuals and GPs to other datasets, including bespoke project specific cohorts. Each GP practice uses a clinical information system to maintain an electronic health record for each of their patients; capturing the signs, symptoms, test results, diagnoses, prescribed treatment, referrals for specialist treatment and social aspects relating to the patients home environment.\n\nThe majority of the data is entered by the clinician during the patient consultation. Test results are electronically transferred from secondary care systems.\n\nThere are no standard rules for recording data within primary care clinical information systems. Therefore, each individual clinician can record information in their own way. The majority use Read Code Terminology, however, sometimes this is applied behind the scenes by the clinical system and sometimes local codes are used. Read codes are not as precise as ICD 10 or OPCS codes.\n\nCoding standards have been agreed on for conditions monitored by the QOF (Quality Outcomes Framework) returns. Since the implementation of QOF these conditions have been coded in a more consistent way.\n\nTime coverage varies between each practice.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://saildatabank.com/about-us/overview/']}",8f2cb486-6a3b-418e-8fb4-b85bc454eaf3,https://web.www.healthdatagateway.org/dataset/8f2cb486-6a3b-418e-8fb4-b85bc454eaf3,"{'formatAndStandards': {'language': ['en'], 'format': ['SQL database table'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['READ']}, 'access': {'dataProcessor': 'SAIL Databank', 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'accessRights': ['https://saildatabank.com/application-process/'], 'dataController': 'SAIL Databank', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'jurisdiction': ['GB']}, 'usage': {'isReferencedBy': ['Akbari et al (2018) Analysis of factors associated with changing general practice in the first 14 years of life in Wales using linked cohort and primary care records: implications for using primary care databanks for life course research. https://doi.org/10.23889/ijpds.v3i4.818'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'resourceCreator': ['Welsh General Practices that have signed up to SAIL']}}","{'temporal': {'endDate': '2021-07-01', 'accrualPeriodicity': 'MONTHLY', 'distributionReleaseDate': '2021-05-07', 'timeLag': 'LESS 1 WEEK', 'startDate': '2000-01-01'}, 'origin': {'purpose': ['DISEASE REGISTRY'], 'source': ['EPR'], 'collectionSituation': ['IN-PATIENTS']}}",2021-12-21T13:30:38Z,"[{'measuredValue': '3500000', 'observedNode': 'PERSONS', 'observationDate': '14/05/2021', 'measuredProperty': 'Count'}]",12.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Yes. 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Table includes number of specifics for example numeric sequence denoting the order of multiple records for a specific event. 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"{'title': 'Unscheduled Care Data Mart', 'abstract': 'The data mart links data from (NHS 24, Scottish Ambulance Service, Out of Hours Primary Care, Emergency Department, Acute, Mental Health and Deaths) to show a Continuous Unscheduled Care Pathway (CUP) for records with a valid CHI number.', 'keywords': ['Unscheduled Care', 'NHS Scotland', 'Ambulance', 'Out of Hours', 'A&E', 'NCS', 'CO-CONNECT', 'National Core Study', 'COVID-19'], 'contactPoint': 'phs.edris@phs.scot', 'publisher': {'identifier': '5f8992a97150a1b050be0712', 'name': 'PUBLIC HEALTH SCOTLAND', 'memberOf': 'ALLIANCE'}}",a265af2e-40fc-4759-af61-eab293cdad5a,"{'followup': 'OTHER', 'spatial': ['https://www.geonames.org/2638360/scotland.html'], 'pathway': 'Secondary care data only', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '8f54b1ad-b8cd-44a3-94d7-c98133ca913d'},"{'description': 'The Unscheduled Care Data Mart (UCD) is a collaboration between Public Health Scotland (PHS), NHS 24 and Scottish Ambulance Service (SAS). The data mart links data from (NHS 24, Scottish Ambulance Service, Out of Hours Primary Care, Emergency Department, Acute, Mental Health and Deaths) to show a patient journey for records with a valid CHI number. This data will help understand the full patient journey through emergency and urgent care services e.g. from first contact by telephone with NHS 24, transport by ambulance to an A&E department and then emergency hospital admission.\n\nPROVISIONAL DATA: NHS24/SAS SUBMITTED DAILY. A&E DATA (MONTHLY). INPATIENT ADMISSIONS (MONTHLY)', 'isPartOf': 'Unscheduled Care'}",8f54b1ad-b8cd-44a3-94d7-c98133ca913d,https://web.www.healthdatagateway.org/dataset/8f54b1ad-b8cd-44a3-94d7-c98133ca913d,"{'access': {'accessRights': ['https://www.informationgovernance.scot.nhs.uk/pbpphsc/', 'https://www.isdscotland.org/Products-and-Services/eDRIS/', 'https://publichealthscotland.scot/contact-us/bespoke-data-analysis-requests/'], 'jurisdiction': ['GB'], 'deliveryLeadTime': 'VARIABLE', 'dataProcessor': 'National Services Scotland', 'accessService': 'Scottish National Data Safe Haven - https://www.isdscotland.org/Products-and-Services/eDRIS/', 'accessRequestCost': ['Research Projects - https://www.isdscotland.org/Products-and-Services/eDRIS/', 'Bespoke data analysis requests - https://publichealthscotland.scot/contact-us/bespoke-data-analysis-requests/'], 'dataController': 'Public Health Scotland / National Records Scotland / Scottish Ambulance Service / NHS 24'}, 'usage': {'dataUseRequirements': ['GEOGRAPHICAL RESTRICTIONS'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['Public Health Scotland', 'National Services Scotland', 'Scottish Ambulance Service', 'NHS24', 'GP OOH']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['NHS SCOTLAND NATIONAL CODES'], 'conformsTo': ['NHS SCOTLAND DATA DICTIONARY'], 'language': ['en'], 'format': ['text', 'csv']}}","{'temporal': {'timeLag': '1-2 MONTHS', 'accrualPeriodicity': 'OTHER', 'startDate': '2001-11-20', 'distributionReleaseDate': '2020-09-01'}, 'origin': {'purpose': ['CARE'], 'collectionSituation': ['ACCIDENT AND EMERGENCY', 'IN-PATIENTS', 'OTHER'], 'source': ['EPR', 'OTHER']}}",2021-10-15T12:47:53Z,"[{'observedNode': 'EVENTS', 'measuredValue': '13708599', 'disambiguatingDescription': 'NHS24 calls', 'observationDate': '20/01/2021', 'measuredProperty': 'count'}, {'observedNode': 'EVENTS', 'measuredValue': '6461925', 'disambiguatingDescription': 'Incidents', 'observationDate': '20/01/2021', 'measuredProperty': 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"{'title': 'The impact of hospitalised patients with COPD: from admission to outcome', 'publisher': {'name': 'PIONEER', 'contactPoint': 'PIONEER@UHB.NHS.UK', 'memberOf': 'HUB'}, 'doiName': 'https://web.www.healthdatagateway.org/dataset/780bf7d0-9ee1-4641-a74f-dc148e361970', 'contactPoint': 'PIONEER@UHB.NHS.UK', 'keywords': ['COPD', 'chronic bronchitis', 'emphysema', 'NHS', 'acute', 'exacerbation', 'COVID', 'pneumonia', 'pneumonitis', 'NEWS2', 'deterioration', 'alert', 'SEWS', 'nebuliser', 'prednisolone', 'steroids', 'corticosteriods', 'oxygen', 'non-invasive ventilation', 'patient', 'acute hospitals', 'inpatient', 'ethnicity', 'multimorbidity', 'blood', 'biomarkers', 'physiology', 'demographics', 'treatments', 'therapies', 'interventions', 'outcomes', 'death', 'longitudinal', 'vital signs'], 'abstract': 'Patients admitted with a COPD related event. Granular care pathways. Multi-morbidity, investigations, interventions and treatments.   Serial physiology, blood biomarkers, physiotherapy, outcome. Deeply phenotyped.'}",780bf7d0-9ee1-4641-a74f-dc148e361970,"{'followup': 'OTHER', 'spatial': 'West Midlands Region, UK', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'The West Midlands (WM) has a population of 5.9million & includes a diverse ethnic, socio-economic mix. There is a higher than average percentage of minority ethnic groups with Birmingham having a population which is >40% non-white. WM has a large number of elderly residents.  There is social deprivation and Birmingham’s population suffers with particularly high rates of COPD; as well as high rates of physical inactivity, obesity, smoking, hypertension, ischaemic heart disease & diabetes.  There are also high levels of rare diseases, especially immunometabolic conditions.   The patients included in this dataset are representative of this diverse population and also include a wide age-range.  University Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & 100 ITU beds. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.   This dataset includes the patient journey from admission to hospital to outcome for patients with known COPD or where a diagnosis of COPD was made or suspected on admission. The data includes granular demography and co-morbidity, presenting symptoms and diagnoses, serial physiology and blood biomarkers, all investigations, all prescribed and administered treatments and outcomes.   It can be supplemented with preceding and following health care contacts, to understand the risk for the acute admission and the subsequent impact on health after discharge. Although primarily secondary care, this dataset can be supplemented with ambulance and primary care data on request.  PIONEER can also offer synthetic data, images and access to a secure Trusted Research Environment for analytics and AI.   PIONEER can assist with analytics, model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.', 'typicalAgeRange': '15-110'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '8a4a4d14-8763-42c9-bad9-5a2def63638e', '1.0.0': '8fac682b-96be-4e21-a2a9-5fe66c3b35ff', 'latest': '8fac682b-96be-4e21-a2a9-5fe66c3b35ff'}","{'description': 'The impact of hospitalised patients with COPD: from admission to outcome\n\nDataset 13.0\n\nBackground.\nChronic obstructive pulmonary disease (COPD) is a debilitating lung condition characterised by progressive lung function limitation.   COPD is an umbrella term and encompasses a spectrum of pathophysiologies including chronic bronchitis, small airways disease and emphysema.  COPD caused an estimated 3 million deaths worldwide in 2016, and is estimated to be the third leading cause of death worldwide.  People with COPD experience flares in their symptoms, termed exacerbations.  Exacerbations are associated with increased mortality, morbidity, a faster decline in lung function and other systemic illness such as heart attacks and strokes.  Despite this impact, COPD exacerbations are poorly characterised and have been without novel treatments for >30 years.\n\nPIONEER geography\nThe West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix. There is a higher than average percentage of minority ethnic groups. The West Midlands has a high prevalence of COPD, reflecting the high rates of smoking and industrial exposure. Each day >100,000 people are treated in hospital, see their GP or are cared for by the NHS.\n\nEHR. University Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & 100 ITU beds. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”. \n\nScope: All hospitalised patients admitted to UHB with an exacerbation of COPD from Jan 2000 - 2021.  Longitudinal & individually linked, so that the preceding & subsequent health journey can be mapped & healthcare utilisation prior to & after admission understood.  The dataset includes ICD-10 & SNOMED-CT codes pertaining to COPD and COPD exacerbations, as well as all co-morbid conditions.  Serial, structured data pertaining to process of care (timings, staff grades, specialty review, wards), presenting complaint, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations), all blood results, microbiology, all prescribed & administered treatments (NIV, nebulisers, antibiotics), all outcomes.  Linked images available (radiographs, CT).\n\nAvailable supplementary data:\nAmbulance, 111, 999 data, synthetic data. Non-COPD “controls”\n\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user accs, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://www.pioneerdatahub.co.uk/wp-content/uploads/COPD-Non-OMOP-infographic-V1.pdf']}",8fac682b-96be-4e21-a2a9-5fe66c3b35ff,https://web.www.healthdatagateway.org/dataset/8fac682b-96be-4e21-a2a9-5fe66c3b35ff,"{'formatAndStandards': {'language': 'en', 'conformsTo': 'LOCAL', 'format': ['SQL'], 'vocabularyEncodingScheme': ['OPCS4', 'SNOMED CT', 'ICD10']}, 'usage': {'resourceCreator': 'This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)', 'dataUseLimitation': 'GENERAL RESEARCH USE', 'dataUseRequirements': 'PROJECT SPECIFIC RESTRICTIONS'}, 'access': {'dataProcessor': 'NOT APPLICABLE', 'jurisdiction': 'GB-GBN', 'deliveryLeadTime': '1-2 WEEKS', 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'accessRequestCost': 'www.pioneerdatahub.co.uk/data/data-services-costs/', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust'}}","{'temporal': {'timeLag': 'OTHER', 'endDate': '2020-11-17', 'distributionReleaseDate': '2020-12-21', 'startDate': '2015-01-01', 'accrualPeriodicity': 'QUARTERLY'}, 'origin': {'source': 'EPR', 'purpose': 'CARE', 'collectionSituation': 'IN-PATIENTS'}}",2021-02-19T18:56:10Z,"[{'observedNode': 'Events', 'measuredValue': '26003 spells in dataset from 01.01.2015 to 17.11.2020', 'disambiguatingDescription': 'Not applicable', 'observationDate': '2020-12-21', 'measuredProperty': 'Count'}]",1.0.0,,2021-02-25T14:34:15Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 7, 'structuralMetadata.tableName': 7, 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"{'title': 'Eye images and retinopathy grades in diabetic eye screening', 'publisher': {'name': 'INSIGHT', 'identifier': '5f8437a3b7dec2a83e8cceba', 'memberOf': 'HUB'}, 'keywords': ['Background Diabetic Retinopathy', 'Diabetic Retinopathy', 'Digital Retinal Photography', 'Digital Surveillance', 'Clinically Significant Macular Oedema', 'Diabetic retinopathy', 'Diabetic Maculopathy', 'Diabetes Mellitus Type 1', 'Diabetes Mellitus Type 2', 'Fundus Photographs', 'Grading', 'Gestational Diabetes', 'Haemorrhage', 'Hospital Eye Service', 'Images', 'Photograph', 'Photo', 'Optic Disc', 'macula', 'Grade', 'outcomes', 'Microaneurysm', 'Non-Proliferative Diabetic Retinopathy', 'Normal', 'New Vessels', 'Proliferative Diabetic Retinopathy', 'Retina', 'Screening', 'Screening Programme'], 'abstract': 'The dataset is a longitudinal dataset consisting of eye images and retinopathy grades from those who\xa0are screened for diabetic retinopathy in the\xa0Birmingham, Solihull and Black Country DR screening program.', 'contactPoint': 'enquiries@insight.hdrhub.org'}",3b1bb176-e22f-402a-b863-730d05b22021,"{'spatial': ['https://www.geonames.org/11591953/west-midlands.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '12-110', 'pathway': 'The Birmingham, Solihull and Black Country dataset is representative of the patient pathway for community screening and grading of diabetic eye disease. It covers standard UK Public Health England Diabetic Eye Screening requirements and will include patients receiving screening through the standard model, routine diabetic screening, surveillance and slit lamp examination.', 'followup': '> 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '8fc6bf25-df25-429f-be41-b7d5ffd4ff15'},"{'description': 'Background\nDiabetes mellitus affects over 3.9 million people in the United Kingdom (UK), with over 2.6 million people in England alone. Diabetic retinopathy (DR) is a common microvascular complication of type 1 and type 2 diabetes and remains a major cause of vision loss and blindness in those of working age. The National Institute for Health and Care Excellence recommendations are for annual screening using digital retinal photography for all patients with diabetes aged 12 years and over until such time as specialist surveillance or referral to Hospital Eye Services (HES) is required. \n\nBirmingham, Solihull and Black Country DR screening program is a member of the National Health Service (NHS) Diabetic Eye Screening Programme.  This dataset contains routine community annual longitudinal screening patient results of over 200000 patients with screening results per patient ranging from 1 year to 15 years. Key data included in this imaging dataset are:\n• Fundal photographs\n• The national screening diabetic grade category (seven categories from R0M0 to R3M1)\n• Screening Outcome (digital surveillance and time; referral to HES)\n\nGeography\nBirmingham, Solihull and Black Country is set within the West Midlands and has a population of circa 5.9million.  The region includes a diverse ethnic, and socio-economic mix, with a higher than UK average of minority ethnic groups. It has a large number of elderly residents but is the youngest population in the UK. There are particularly high rates of diabetes, physical inactivity, obesity, and smoking.\n\nData source:  The Birmingham, Solihull and Black Country Data Set, University Hospitals Birmingham NHS Foundation Trust, Birmingham, United Kingdom. They manage over 200,000 patients, with longitudinal follow-up up to 15 years, making this the largest urban diabetic screening scheme in Europe.', 'isPartOf': 'Not Applicable', 'associatedMedia': ['https://www.insight.hdrhub.org/about-us']}",8fc6bf25-df25-429f-be41-b7d5ffd4ff15,https://web.www.healthdatagateway.org/dataset/8fc6bf25-df25-429f-be41-b7d5ffd4ff15,"{'usage': {'resourceCreator': ['University Hospitals Birmingham NHS Foundation Trust'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS'], 'isReferencedBy': ['https://www.gov.uk/government/publications/diabetic-eye-screening-retinal-image-grading-criteria', ' https://www.retinalscreening.co.uk/'], 'investigations': ['']}, 'access': {'jurisdiction': ['GB-ENG', 'GB-GB'], 'dataProcessor': 'NOT APPLICABLE', 'accessRequestCost': ['https://www.insight.hdrhub.org/'], 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'deliveryLeadTime': '2-6 MONTHS', 'accessService': 'INSIGHT adheres to HDRUK data access principles including the five SAFES; anonymised data is provided into an agreed Trusted Research Environment such as the PIONEER Microsoft Azure TRE at University Hospitals Birmingham NHSFT or equivalent external safe environment, under data license.', 'accessRights': ['https://www.insight.hdrhub.org/']}, 'formatAndStandards': {'conformsTo': ['LOCAL', 'HL7 CCOW'], 'language': ['en'], 'vocabularyEncodingScheme': ['NHS NATIONAL CODES'], 'format': ['SQL', 'CSV', 'Images']}}","{'temporal': {'timeLag': '2-4 WEEKS', 'accrualPeriodicity': 'ANNUAL', 'startDate': '2020-11-30', 'distributionReleaseDate': '2021-10-01', 'endDate': '2021-03-31'}, 'origin': {'source': ['EPR'], 'collectionSituation': ['CLINIC', 'IN-PATIENTS', 'OUTPATIENTS'], 'purpose': ['CARE']}}",2021-10-22T14:13:57Z,"[{'observedNode': 'EVENTS', 'measuredValue': '200000', 'disambiguatingDescription': 'Over 200,000 patients \n\n2.5 million grading events at any level\n1.68 million gradings including ophthalmology referrals\n1 million final grades from community screens\n0ver 6 million images over 15 years\n', 'observationDate': '01/10/2021', 'measuredProperty': 'Count'}]",1.0.0,"{'qualifiedRelation': ['None'], 'derivation': ['Not Available'], 'tools': ['https://www.gov.uk/government/publications/diabetic-eye-screening-retinal-image-grading-criteria']}",2021-10-22T14:13:57Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 6, 'structuralMetadata.tableName': 6, 'structuralMetadata.tableDescription': 6, 'structuralMetadata.dataElementsCount': 58, 'structuralMetadata.columnName': 58, 'structuralMetadata.columnDescription': 58, 'structuralMetadata.dataType': 58, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '2ccd98bd-ac93-44b7-955c-d3d96514bdda', 'description': 'patient pregnancy data', 'name': 'Pregnancy', 'dataElementsCount': 9, 'dataElements': 'db9045a4-b1e1-4103-a031-46e5ded1247e, 7802a2d4-5bdd-4f2e-975e-39fdb1d08b23, 523dd20a-9883-47f6-8638-c91f4505712f, 3e4814a4-60d9-4319-8172-c60ba7455b2d, 2dbd8ddd-7ae8-4626-80cd-c3ea0d8833b9, be3767d6-3344-4c8f-a65d-bdc1d1cddf63, 3243a348-1ea0-4de6-a04b-c1ecdf96da2f, 4510185c-768e-45aa-aa3d-80afd8888c3c, 9afd3d72-0965-419c-92e0-ced1c92867f2'}, {'id': '1001b51d-2f18-4946-85d1-60776465144b', 'description': 'supporting data for grading and other patient marker', 'name': 'Observations', 'dataElementsCount': 10, 'dataElements': '4c383be5-57fd-4706-b721-df9b1c459f56, bdb692f1-9e98-4fcb-81cc-11f5e5535325, d8485465-4f8d-43c0-816d-20efa6d653fe, 7ecfb7e4-20c3-43f7-b51c-1204272ae484, 8494219f-6023-4c03-9d96-81d4cc4a81cc, f2301fbe-8e2d-4a99-81cf-debae61c050c, f435b4c2-538b-4347-95f3-cd0d6be27597, 9ff72ef7-d41e-4e22-9c59-f023e3fd685e, 0455d5bd-0ea8-4948-93d6-d697a79c4b4c, ad6e0b04-58ec-430e-924c-5370d89c15a8'}, {'id': '0aec3b4a-a188-4d41-902f-c5b322331a11', 'description': 'Initial Screening data', 'name': 'Screening', 'dataElementsCount': 7, 'dataElements': 'd6ee4629-ae03-4d49-bc4f-d5661ef98ce5, 723c46fe-1121-464a-8c47-fb0c0fa75169, 0c080719-f5f6-4893-af35-ca3e3b170207, 6c9b395a-e284-4e26-b327-b67c953064c6, b5abbde7-021c-4721-bfe8-75e61b3b223e, af11f688-2512-458d-a342-6df35ff46fa9, 3676b3fb-77b5-4902-b460-cba6dd347fc8'}, {'id': '7cbd5cd5-b06c-48eb-8fb5-06c78b2903c9', 'description': 'patient demographics details', 'name': 'Demographics', 'dataElementsCount': 14, 'dataElements': '379bfd2e-088e-4e0c-889e-dd85dc9256a1, 82cf82fe-6954-4e0f-ac59-f925c0278a2c, a7a486c4-a61d-438d-8d41-63db66ffcf08, 25f15b9c-67c3-4981-9019-3e456cc0e489, 83f0ab4a-df1b-458b-a80b-d014591abe77, 5eedabaf-0f94-476e-b9ed-b74b3f4d399b, df422102-3e05-4716-8c83-48b438c85fc5, aa1f111b-6f72-434e-b171-fad533d46196, db9f87de-1d20-40df-97d2-f9412375d474, 1c1b11e2-5857-4880-9a44-720c136b25b8, 7f4ee5f3-6d52-489e-a2a6-9f40f55ef7b2, 17a489b0-c974-41d8-a219-a57c6d06e658, 3cd6cc5c-bc72-4a2d-bcfd-7897cab174ef, 8d6b0f35-c680-4a44-9eaf-7fbebdc99066'}, {'id': 'f1642ca2-63c3-4818-a771-f257ea1ebf53', 'description': 'Data for Grading', 'name': 'Grading', 'dataElementsCount': 13, 'dataElements': 'b9b1078d-eeff-445f-b950-c3b83183d064, 26383d07-64ef-4b90-b211-9a5b96b27a8e, ddcdeba1-215d-414c-9dde-80b3e49fe364, fec9a6a4-3cad-41a8-bf68-764e4c0618c8, 5a2dbf51-fdac-4f8a-8015-d412f7852176, e529b069-0435-4fa4-a56a-848bb3a00add, b07c86b1-d18d-4a3f-8025-85ec3cac4985, 35f264c1-8bd7-43af-a3ec-31828dace5a0, f0783910-f679-404e-8007-c64a456cb0c7, 9e039f76-e54e-4f0a-b0f5-284f91582aad, 00c32bdc-2765-406c-b0a9-a4f278ecc8be, 5864fb86-2dec-4dec-aa63-0efa4f0b5b6b, 17e989e9-40af-462e-b2c1-72acffdcb2c2'}, {'id': '24cc9dfd-3c1b-4a8e-a9cb-a591592c345a', 'description': 'patient history', 'name': 'Social History', 'dataElementsCount': 5, 'dataElements': 'fd601230-ff66-48de-b414-85a461f78070, f31d41ea-e9f0-49bc-82e2-0cf448c6d5f3, 74f11bb4-031e-408b-a394-b56430511f46, e966a126-61d6-4106-918e-5924d6174ab6, cafad036-6c68-4a5b-98ed-7890e8be8c94'}]}"
"{'title': 'Rural-Urban classification for CPRD Aurum', 'keywords': ['Area level', 'Rural-Urban'], 'publisher': {'memberOf': 'ALLIANCE', 'name': 'CPRD', 'identifier': '607db9c2e1f9d3704d570cee'}, 'doiName': 'https://doi.org/10.48329/aytt-h222', 'abstract': 'CPRD Aurum linked Rural-Urban classification data differentiate between rural and urban areas at the small area level, mapped to the postcode of the GP practice or patient.', 'contactPoint': 'enquiries@cprd.com'}",b7d24b82-f8a4-4838-844c-ecd86ddf5db2,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2635167/united-kingdom.html'], 'followup': 'OTHER', 'typicalAgeRange': '0-115'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': 'a6ea007a-f01d-468e-94a7-55695a27b111', '5.0.0': '90671a93-53ba-44fe-90f5-b1e138a6819b', '4.0.0': 'e149e0c4-7edd-4e9c-af9d-2b3b2baef9bd', '3.0.0': '2d23ad3c-0541-453c-8bf7-9dc42e1aba65', '1.0.0': '42e99673-2c75-4878-b346-ddd912bdbf5f', '0.0.1': '6b2495ab-cddf-4f15-8197-487d4256dd76', 'latest': '90671a93-53ba-44fe-90f5-b1e138a6819b'}","{'description': 'CPRD Aurum linked Rural-Urban classification data differentiate between rural and urban areas at the small area level. It may be important to distinguish between rural and urban areas when investigating differences in social and economic characteristics of small areas. Populations can vary in their composition between urban and rural areas, as can access to services, employment and educational opportunities, and quality of life. \nThe measures available for patient (England only) and practice postcode\xa0are: 2011 England and Wales Rural-Urban classification; 2015 Northern Ireland Rural-Urban classification; 2016 Scottish Rural-Urban classification.', 'associatedMedia': ['https://www.cprd.com/linked-data'], 'isPartOf': 'CPRD Aurum'}",90671a93-53ba-44fe-90f5-b1e138a6819b,https://web.www.healthdatagateway.org/dataset/90671a93-53ba-44fe-90f5-b1e138a6819b,"{'access': {'accessRights': ['HTTPS://CPRD.COM/DATA-ACCESS'], 'accessService': 'Access to CPRD data, including UK Primary Care Data, and linked data such as Hospital Episode Statistics, is subject to protocol approval via CPRD’s Research Data Governance (RDG) Process. Independent scientific and patient advice is provided by Expert Review Committees (ERCs) and the Central Advisory Committee (CAC): https://www.cprd.com/research-applications', 'jurisdiction': ['GB-GBN'], 'dataController': 'Clinical Practice Research Datalink (CPRD)', 'accessRequestCost': ['https://www.cprd.com/pricing'], 'deliveryLeadTime': 'VARIABLE', 'dataProcessor': 'CPRD'}, 'usage': {'isReferencedBy': ['[]'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'NO LINKAGE', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'dataUseRequirements': ['GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'investigations': ['https://www.cprd.com/protocol-list']}, 'formatAndStandards': {'format': ['Tab delimited text'], 'vocabularyEncodingScheme': ['OTHER'], 'conformsTo': ['OTHER'], 'language': ['en']}}","{'temporal': {'endDate': '2022-02-07', 'distributionReleaseDate': '2022-02-04', 'timeLag': 'NOT APPLICABLE', 'accrualPeriodicity': 'QUARTERLY', 'startDate': '1987-01-01'}, 'origin': {'purpose': ['OTHER'], 'source': ['OTHER'], 'collectionSituation': ['OTHER']}}",2020-01-10T18:12:21Z,"[{'observedNode': 'PERSONS', 'measuredValue': 45811089, 'disambiguatingDescription': 'Number of CPRD Aurum patients eligible for postcode linkage', 'observationDate': '04/02/2022', 'measuredProperty': 'Count'}]",5.0.0,"{'qualifiedRelation': ['CPRD Aurum', 'CPRD Aurum SGSS', 'CPRD Aurum CHESS', 'CPRD Aurum ICNARC', 'Death Registration data for CPRD Aurum', 'HES Admitted Patient Care data for CPRD Aurum', 'HES Outpatient data for CPRD Aurum', 'HES Accident and Emergency data for CPRD Aurum', 'HES Diagnostic Imaging Dataset for CPRD Aurum', 'Patient postcode linked deprivation measures for CPRD Aurum', 'Practice postcode linked deprivation measures for CPRD Aurum', 'Cancer registration data for CPRD Aurum', 'National Radiotherapy Dataset (RTDS) for CPRD Aurum,Systemic Anti-Cancer Treatment (SACT) data for CPRD Aurum', 'Mental Health Dataset (MHDS) for CPRD Aurum'], 'tools': ['[]'], 'derivation': ['N/A']}",2022-02-18T11:59:56Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 2, 'structuralMetadata.tableName': 2, 'structuralMetadata.tableDescription': 2, 'structuralMetadata.dataElementsCount': 9, 'structuralMetadata.columnName': 9, 'structuralMetadata.columnDescription': 9, 'structuralMetadata.dataType': 9, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'e2c38937-6394-4de8-b336-070cf1d3332d', 'description': 'Rural Urban Classification (2011 LSOA boundaries)', 'name': 'Practice', 'dataElementsCount': 6, 'dataElements': '7fc6c5e4-33f0-4f7b-a21e-21892f10e284, e5b60288-7b87-4c82-b67e-c157edd369d5, b9864eba-c8ec-47b1-a66b-b12dda92f7e7, f8c5d394-f9fc-42a6-8bfa-d0b96bed787d, f1fb129c-a05b-400c-90b7-7db260a15151, 4683804e-ced3-49af-b5c3-5d0b3ea0ab91'}, {'id': 'fc88a9b4-ea76-47a8-bb45-a386a3fbc738', 'description': 'England and Wales Rural Urban Classification (2011 LSOA boundaries)', 'name': 'Patient', 'dataElementsCount': 3, 'dataElements': 'df1de4fc-570e-496a-b5fb-fd92ac982425, 8eab1951-3a80-4aa9-9567-58b7457fd5df, 032e79b5-d62c-4485-ba60-423de4a8b266'}]}"
"{'title': 'COVID-19 COG-UK Viral Genome (variant strain data)', 'contactPoint': 'srs.customer.support@ons.gov.uk', 'publisher': {'memberOf': 'NCS', 'identifier': '5fc12be363eaab9e68dae76e', 'name': 'OFFICE FOR NATIONAL STATISTICS'}, 'abstract': 'COVID-19 COG-UK Viral Genome (variant strain data)', 'keywords': ['COVID-19', 'health', 'NCS', 'National Core Study']}",9a36f3f8-3b7e-4e61-8993-b9cc2734fcb8,"{'pathway': 'NOT APPLICABLE', 'spatial': ['https://www.geonames.org/6269131/', 'https://www.geonames.org/2634895/'], 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'UNKNOWN'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '8faa89ff-6af8-40d4-9afe-54a14a9d22f1', '2.0.0': '90ace555-da01-4940-a3ef-78bb83976ff0', 'latest': '90ace555-da01-4940-a3ef-78bb83976ff0'}",{'description': 'COVID-19 COG-UK Viral Genome (variant strain data)'},90ace555-da01-4940-a3ef-78bb83976ff0,https://web.www.healthdatagateway.org/dataset/90ace555-da01-4940-a3ef-78bb83976ff0,"{'access': {'dataController': 'Public Health England', 'accessRequestCost': ['Available at no cost at the point of use'], 'jurisdiction': ['GB-GB'], 'accessRights': ['https://www.ons.gov.uk/aboutus/whatwedo/statistics/requestingstatistics/approvedresearcherscheme'], 'deliveryLeadTime': '1-2 MONTHS', 'accessService': 'The Office for National Statistics Secure Research Service (SRS) gives accredited researchers secure access to de-identified, unpublished data in order to work on research projects for the public good.   Most datasets are available to access through remote access to the SRS. In some instances, the data can only be accessed from an approved safe setting. \n\nFor more information, visit: https://www.ons.gov.uk/aboutus/whatwedo/statistics/requestingstatistics/approvedresearcherscheme', 'dataProcessor': 'Office for National Statistics'}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'format': ['CSV'], 'conformsTo': ['LOCAL']}, 'usage': {'dataUseRequirements': ['ETHICS APPROVAL REQUIRED', 'PROJECT SPECIFIC RESTRICTIONS', 'PUBLICATION REQUIRED', 'NOT FOR PROFIT USE'], 'dataUseLimitation': ['RESEARCH USE ONLY']}}","{'temporal': {'startDate': '2020-01-01', 'timeLag': 'OTHER', 'accrualPeriodicity': 'WEEKLY'}}",2021-07-01T11:18:05Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '197000', 'disambiguatingDescription': 'Over 197,000 observations in the first iteration of the data', 'observationDate': '01/07/2021', 'measuredProperty': 'Count'}]",2.0.0,,2021-09-24T10:21:11Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 6, 'structuralMetadata.columnName': 6, 'structuralMetadata.columnDescription': 6, 'structuralMetadata.dataType': 6, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'dae37249-a28b-4530-a89b-ecc15e4e04cf', 'description': 'COVID-19 COG-UK Viral Genome', 'name': 'COVID-19 COG-UK Viral Genome', 'dataElementsCount': 6, 'dataElements': '90a44623-6dbd-4598-9c76-025c04864cce, 62afa344-01aa-4741-8bb4-bb198483fc94, cb19abab-c4fb-410f-9f0c-847fe3b1531f, f725b4f9-6755-4c20-8fa7-f39bffdf220e, d5f71100-1c46-477b-93b7-72b0bc997171, 8c8ac46d-c98e-4b8e-8a9d-29f8ba724116'}]}"
"{'title': 'RAPID (Hospital Stay Level Data)', 'contactPoint': 'phs.edris@phs.scot', 'keywords': ['inpatient', 'hospital admissions', 'RAPID', 'National Core Study', 'COVID-19', 'NCS'], 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '5f8992a97150a1b050be0712', 'name': 'PUBLIC HEALTH SCOTLAND'}, 'abstract': 'The Rapid Preliminary Inpatient Data (RAPID) dataset contains the underlying admissions data which is used by System Watch. It enables access to the hospital admissions data  submitted in its unprocessed state e.g. it does not contain predictions.'}",1fc57971-5af5-499e-a500-4ffbb087f0c4,"{'typicalAgeRange': '0-150', 'followup': 'OTHER', 'spatial': ['https://www.geonames.org/2638360/scotland.html'], 'pathway': 'All of secondary care in relation to hospital stays', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '31e377bf-7c6c-4bc0-95f4-a4626cfa5807', '4.0.0': '90db47a7-d082-4778-884c-78f9b6c7e57f', '1.0.0': '380cbddb-e64e-42b9-a364-47c550262b6a', '3.0.0': 'cca8ff71-fc4e-4544-9345-e87f6c0b3f2d', '2.0.0': '50e341b3-11cb-4ea3-afd0-be193c0df91f', 'latest': '90db47a7-d082-4778-884c-78f9b6c7e57f'}","{'description': ""The data collection known as 'System Watch' was developed in 2001 to meet the requirements of the System Watch product, which monitors and predicts emergency admissions and bed occupancy in mainland NHS Boards. The data collection is now known as 'RAPID'. 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'usage': {'resourceCreator': ['None'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'NOT FOR PROFIT USE'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}, 'formatAndStandards': {'conformsTo': ['NHS SCOTLAND DATA DICTIONARY'], 'format': ['text/csv'], 'vocabularyEncodingScheme': ['ICD10'], 'language': ['en']}}","{'temporal': {'distributionReleaseDate': '2020-11-17', 'startDate': '2015-05-01', 'timeLag': '1-2 WEEKS', 'accrualPeriodicity': 'WEEKLY'}, 'origin': {'collectionSituation': ['IN-PATIENTS'], 'purpose': ['CARE', 'ADMINISTRATIVE'], 'source': ['EPR']}}",2020-10-13T13:28:20Z,"[{'observedNode': 'EVENTS', 'measuredValue': '6067069', 'disambiguatingDescription': 'Stays', 'observationDate': '05/02/2021', 'measuredProperty': 'Count'}, {'observedNode': 'EVENTS', 'measuredValue': '8140208', 'disambiguatingDescription': 'Episodes', 'observationDate': '05/02/2021', 'measuredProperty': 'Count'}]",4.0.0,,2021-10-28T14:37:21Z,"{'structuralMetadataCount': 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"{'title': 'Prescribing Information System (PIS)', 'publisher': {'identifier': '5f8992a97150a1b050be0712', 'memberOf': 'ALLIANCE', 'name': 'PUBLIC HEALTH SCOTLAND'}, 'keywords': ['NCS', 'perscriptions', 'Scotland', 'medicines', 'pharmaceuticals ', 'CO-CONNECT', 'National Core Study', 'COVID-19'], 'contactPoint': 'phs.edris@phs.scot', 'abstract': 'The Prescribing Information System (PIS) is the definitive data source for all prescribing relating to all medicines and their costs that are prescribed and dispensed in the community in Scotland.'}",22e3943e-edb5-44a1-9e4e-22b0f7a31767,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150', 'spatial': ['https://www.geonames.org/2638360/scotland.html'], 'pathway': 'Primary & community dispensed prescriptions', 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'ece37096-e8b9-4f61-bd0f-574afe1dacba', '7.0.0': '90f44ae7-8394-4fe5-8c1e-c9aa5bf0edf1', '3.0.0': '561f0fd2-ced6-4f05-a801-b6338dbc548b', '2.0.0': '78793409-9d58-4e81-ae91-a281fee85fc9', '4.0.0': '0b794715-53f3-422f-817a-92be3392c735', '6.0.0': 'b5ecf3e9-f910-4713-81e0-acd3ca6c1cd9', '0.0.1': 'a7b98781-4676-47da-b96e-d114fb7459d0', '5.0.0': '0cb92a4a-cc82-4c33-98f7-06ba93818c50', 'latest': '90f44ae7-8394-4fe5-8c1e-c9aa5bf0edf1'}","{'description': 'The information is supplied by Practitioner & Counter Fraud Services Division (P&CFS) who is responsible for the processing and pricing of all prescriptions dispensed in Scotland. These data are augmented with information on prescriptions written in Scotland that were dispensed elsewhere in the United Kingdom. GP’s write the vast majority of these prescriptions, with the remainder written by other authorised prescribers such as nurses and dentists. Also included in the dataset are prescriptions written in hospitals that are dispensed in the community. Note that prescriptions dispensed within hospitals are not included. Data includes CHI number, prescriber and dispenser details for community prescribing, costs and drug information. Data on practices (e.g. list size), organisational structures (e.g. practices within Community Health Partnerships (CHPs) and NHS Boards), prescribable items (e.g. manufacturer, formulation code, strength) are also included.\nAround 100 million data items are loaded per annum.', 'associatedMedia': ['https://www.ndc.scot.nhs.uk/National-Datasets/data.asp?SubID=9'], 'isPartOf': 'Prescribing'}",90f44ae7-8394-4fe5-8c1e-c9aa5bf0edf1,https://web.www.healthdatagateway.org/dataset/90f44ae7-8394-4fe5-8c1e-c9aa5bf0edf1,"{'access': {'jurisdiction': ['GB'], 'deliveryLeadTime': 'VARIABLE', 'dataProcessor': 'National Services Scotland', 'dataController': 'Public Health Scotland / National Records Scotland', 'accessRights': ['https://www.informationgovernance.scot.nhs.uk/pbpphsc/', 'https://www.isdscotland.org/Products-and-Services/eDRIS/', 'https://publichealthscotland.scot/contact-us/bespoke-data-analysis-requests/'], 'accessRequestCost': ['Research Projects - https://www.isdscotland.org/Products-and-Services/eDRIS/', 'Bespoke data analysis requests - https://publichealthscotland.scot/contact-us/bespoke-data-analysis-requests/'], 'accessService': 'Scottish National Data Safe Haven - https://www.isdscotland.org/Products-and-Services/eDRIS/'}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['COLLABORATION REQUIRED', 'INSTITUTION SPECIFIC RESTRICTIONS', 'NOT FOR PROFIT USE'], 'resourceCreator': ['Public Health Scotland', 'National Services Scotland', 'Scottish Ambulance Service', 'NHS24', 'GP OOH'], 'isReferencedBy': ['https://doi.org/10.1093/ije/dyw060']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['DM+D'], 'language': ['en'], 'format': ['text', 'csv'], 'conformsTo': ['OTHER']}}","{'temporal': {'distributionReleaseDate': '2020-09-01', 'startDate': '2009-01-01', 'timeLag': '1-2 MONTHS', 'accrualPeriodicity': 'MONTHLY'}, 'origin': {'source': ['OTHER'], 'purpose': ['CARE'], 'collectionSituation': ['PRIMARY CARE']}}",2020-01-10T22:06:52Z,"[{'observedNode': 'EVENTS', 'measuredValue': '606553380', 'disambiguatingDescription': 'dispensed items', 'observationDate': '24/12/2020', 'measuredProperty': 'count'}, {'observedNode': 'EVENTS', 'measuredValue': '608430467', 'disambiguatingDescription': 'prescribed items', 'observationDate': '24/12/2020', 'measuredProperty': 'count'}, {'observedNode': 'EVENTS', 'measuredValue': '606412372', 'disambiguatingDescription': 'paid items', 'observationDate': '24/12/2020', 'measuredProperty': 'count'}]",7.0.0,"{'qualifiedRelation': ['UK Biobank', 'Million Women Study (http://www.millionwomenstudy.org/introduction/)']}",2021-10-15T12:52:50Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 19, 'structuralMetadata.tableName': 19, 'structuralMetadata.tableDescription': 19, 'structuralMetadata.dataElementsCount': 141, 'structuralMetadata.columnName': 141, 'structuralMetadata.columnDescription': 141, 'structuralMetadata.dataType': 141, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'f73caffc-3ada-46e3-853f-406f5551a82a', 'description': 'This class contains measures and flags relating to prescribed, dispensed or paid information', 'name': 'Prescribed/Dispensed/Paid Items', 'dataElementsCount': 8, 'dataElements': '35095d77-939f-45e0-821b-53630dc3ebe4, 92adb8be-34e0-470e-a557-e2cd9f86f9ea, 96657881-be93-4c49-a87c-a764cc3cc98d, 845a98c7-e45d-49e4-b6cc-0eb51e1bf047, 3ee2dac5-f699-40b1-a225-df103c80da15, efd29ab0-ca42-4ef5-9a2a-50ec9a1d65b5, 6556496d-2b98-4a6c-b3c2-c686566c8cfd, d67d7791-63b8-4a81-b20e-0fdc55c241d1'}, {'id': '91616bed-e222-49ad-bf5c-9a408ee9d877', 'description': 'This class contains information about the prescriber', 'name': 'Prescriber - Presciber Location', 'dataElementsCount': 5, 'dataElements': '39e0dca6-fee2-4544-8b4f-655509ee805e, bfcd6610-fd1e-47d3-981f-10412d3defa8, 72839cd6-4247-430e-8b46-0d00cb0df3e4, 7289ae1c-390c-4cc4-a0d8-40592c716a54, 29af6883-2a2d-4006-8944-8589197e01b4'}, {'id': '7c815a59-8486-47d9-86e9-bcfa3a06cdb3', 'description': 'from December 2009 onwards. Only available where the prescription has an eDispensed message', 'name': 'e-Dispensed Items', 'dataElementsCount': 4, 'dataElements': '110aea61-8e9d-4fa8-8b6f-cef6ebacba6d, d93dfc04-a2de-4036-8bbc-ec5d2daad4ec, d3356790-0b82-4020-abe9-0ac6fb3ddc83, 26757719-6899-406e-afa9-8820c10f82c7'}, {'id': '314ca83a-8a72-4710-93f6-ab6d47b3ec7a', 'description': ""The index is an area based measure, calculated at data zone level and has seven domains (income, employment, education, housing, health, crime and geographical access). These have been combined into an overall index. Please note that SIMD values may appear for records prior to 1999, however ISD recommendations are to use SIMD for trend analyses from 1999 onwards. For trend analyses back to 1991, use the 2001 census based Carstairs deprivation. \nFor trend analyses back to before 1991, use the 1991 census based Carstairs deprivation. See the ISD website for further information. \nPlease indicate which SIMD version you would like for each selected variable. \n \nNote on change in ordering of quintiles and deciles \nFollowing the release of the SIMD 2009, ISD changed their ordering of quintiles and deciles to fit with the method that is used by the Scottish Government \n(SG). For SIMD 2009, SIMD 2012 and future releases, the method is now: 1 = MOST deprived, 5 or 10 = LEAST deprived \n \n ISD analyses based on SIMD 2006 or SIMD 2004 will be left in their current format:  1 = LEAST deprived; 5 or 10 = MOST deprived.  \nTo avoid confusion, deprivation categories should always be fully labelled. For example, for SIMD 2012, 'decile 1 (most deprived)'… 'decile 10 (least deprived)'. \nFor time trend analyses combining SIMD 2004/2006 with SIMD 2009/2012 it is important to treat all deciles and quintiles in the same way. SIMD 2004/2006 deciles/quintiles should be reversed from 1=LEAST deprived, 5 or 10=MOST deprived to 1=MOST deprived, 5 or 10=LEAST deprived in order to keep the same convention for the deciles and quintiles throughout the analysis."", 'name': 'Scottish Index of Multiple Deprivation (SIMD)', 'dataElementsCount': 9, 'dataElements': 'e0a51cbf-bc5c-451e-aa1f-bfa0b3f60344, 8d4697fb-a87f-45a0-963c-ebc28dc421e3, 3fc2205f-70af-47da-929c-b3f044d90b0d, 81a298d6-092c-410c-a4f6-7419dc3e347c, cd2e0516-10e8-4525-91a8-2506319c6032, a6f9b55a-6721-4198-81af-44ad9374dd9a, 9370b11a-eb23-42f6-9d3d-18209f333ff7, 9ead59b3-8f05-44bf-81d5-7d1b42175452, e9ebd8cb-b966-42ba-91bb-6daf28ac6d69'}, {'id': 'aa986fee-7a63-462f-8541-93c32d87514b', 'description': 'Details from 1992 until March 2004. Only summaries are available - CHI was not captured in this time period so the data is not linkable.', 'name': 'Prescription Summaries measures', 'dataElementsCount': 6, 'dataElements': 'fd351fba-1967-46d2-bc47-6cfbd1239cfe, c6ca71d2-ddd8-4b89-a4e9-734b10045f1f, 776705e0-e257-4dab-a60d-036eee8b3115, ab5bc5e7-d247-4b7a-bc4b-f039f5551081, ebe8bb91-6b55-4950-97f0-bf656cea10d2, de26013b-822b-4781-80a2-97e939082d62'}, {'id': '567b94c5-bb72-4d05-bee3-40c00b876549', 'description': 'Details relating to the location where the dispensing took place', 'name': 'Dispenser Location', 'dataElementsCount': 2, 'dataElements': 'd397c37e-6520-475d-8de9-14d125f19679, bc730b85-7e11-432a-a80d-dc47b3617096'}, {'id': '799a9cf8-0970-48fc-95da-ccdd92c717bc', 'description': 'Exemption types associated with prescription form', 'name': 'Exemption Type', 'dataElementsCount': 3, 'dataElements': '936e60a3-c81c-4bfe-a4cd-e28a9603ab05, 9435cea6-f1a3-4ef1-84e1-ef2b82ed126f, 5fd631a3-39ba-4538-b0d7-ba0b8cd9c82e'}, {'id': 'b458e568-1c18-4705-99c0-f3972b949ee3', 'description': 'Patient attributes', 'name': 'Patient attributes', 'dataElementsCount': 5, 'dataElements': '1d0b434a-9472-4564-be65-9eddd572bfb4, 27780307-899b-4a76-a738-c501a8a0d267, 826276be-11f7-4cf7-aa4d-59fa09cba622, 5bbcbc8b-af31-4731-b1f9-49760fb9819e, c6098f0e-cae8-49e8-afff-cf1a7f8d07be'}, {'id': '60787841-6216-4eb8-a01b-16d272251832', 'description': 'See ISD website for further details of the different geographical or organisational areas and codes. \n\nPlease select the geographical details below, and indicate which location you would like them in relation to: \n•\tLocation in which the prescribing took place \n•\tLocation in which the dispensing took place \n•\tThe patient’s home residence - geography details relating to the home address of the patient are ‘time stamped’ so that the relevant address information can be applied to the prescribing or dispensing activity of interest', 'name': 'Geography', 'dataElementsCount': 17, 'dataElements': '0f123f51-21c9-40c9-8426-34a0c0ece31f, 6c5c2c59-f429-46f1-8fdd-7e4d32292eac, f3954b68-f2ac-41f8-a3b6-1753de3a9340, 0c89db9c-f4c1-4324-8441-cfed8c6178f9, 6e49939c-514c-4313-9db6-7249d0649a8d, a40b072e-bf80-432c-8291-25d676fa1f38, 46432137-f0ee-43fa-97ed-7d5ec35d909a, 34731151-6835-4448-a7b0-dffac020cf67, de893a5b-1e4b-46bf-a27e-614c433a766b, 27231f0c-497b-4d73-8f0f-da2d7a575651, 55a66edf-acbd-4236-bee7-0a58006c9956, de7d4e61-2262-4616-b07b-fc345555cf6e, 4daa0574-fff3-4bf0-b766-cdf3fe1fc363, 689d8d4b-7ef4-4da5-9799-751240572d6f, 478e3b0c-1316-4875-9a1a-3b398139548a, ca08f17b-553f-4550-be86-02bd1b49e2c7, 8af9556f-bec9-4a33-8d2c-9e18c1b5302d'}, {'id': '712ccec0-e874-4bd1-9f72-4fe8c3c42f82', 'description': 'Please select the NHS organisation details below, and indicate which location you would like them in relation to: \n•\tLocation in which the prescribing took place \n•\tLocation in which the dispensing took place \n•\tThe patient’s home residence - geography details relating to the home address of the patient are ‘time stamped’ so that the relevant address information can be applied to the prescribing or dispensing activity of interest', 'name': 'NHS Organisation', 'dataElementsCount': 6, 'dataElements': '2bfffefb-e42c-4674-b1f7-becad6665706, dba0cec9-0643-42ff-8659-e35adb8e1784, 001f4c7a-17cf-41eb-ae54-d5c423069bda, 35622dd0-0359-4220-92b8-f801c99286d6, bf555b32-2600-4c81-8b88-b59fa38a8b8d, 08909884-260b-414e-91d9-a9825c720b43'}, {'id': '56cab91c-c5c9-40b0-a583-2c405656c31e', 'description': 'Prescription form types', 'name': 'Form Type', 'dataElementsCount': 2, 'dataElements': 'e09680c0-79ab-48ee-a533-405c3202459c, 614df235-4228-4294-be3a-4af468ef42f8'}, {'id': '6e3018d3-58af-4dc6-a252-79f1024ae6f6', 'description': 'Details relating to the prescribing individual', 'name': 'Prescriber - Presciber Individual', 'dataElementsCount': 7, 'dataElements': 'c89c58c9-1474-4c65-809d-406cc22e09c6, 97a411ab-27d0-4d11-a99d-d87d1ba83411, bb85d676-140a-4176-92cb-cdecbe3565d8, ecc85769-c05c-4edf-97ea-df86436e3c71, 631a1feb-ff68-4759-80f6-31361fc07063, f5587026-070f-49a9-8b12-70a28e3911e4, f91183be-9be3-44b3-855c-d6dde590d9b1'}, {'id': '395383fb-dd7a-4f8f-9fdf-f47a1347f1c6', 'description': 'This is available as prescribed, dispensed or paid date, as described below. Please indicate which date type you would like for each variable selected. \n•\tPrescribed date: If an electronic message was used by PSD for payment purposes, then the actual date the e-prescription was written will be stored. If an electronic message was not used then the prescribed date will be defaulted to be the same as the ‘Paid Date’.  \n•\tDispensed date: If an electronic message was used by PSD for payment purposes, then the actual date the e-prescription was dispensed will be stored. If an electronic message was not used then the dispensed date will be defaulted to be the same as the ‘Paid Date’.  \n•\tPaid date: The date on which the prescription item was submitted for payment to PSD (always the last day of the month).', 'name': 'Prescription Date', 'dataElementsCount': 12, 'dataElements': 'e0de466a-0f8c-485b-b597-a1299503d50c, 27002612-ca4a-4778-8305-833f84bfad97, a87e17b9-7e39-459e-88b3-a9d0164fbbfb, 611abbcc-22b7-42bb-bfad-b2341bca4cfb, c094c647-4e2c-4eb0-a507-e153678817c5, 55cc4927-0025-4062-a8d3-64aa8747b590, 18a24b34-e36d-40e6-bfba-10caae6e0e2d, 73c9cef6-8b8b-4d94-92b3-fe53de7b0f66, 31cd2409-d3c2-4e7c-b390-a91507d30a24, 517b9acf-72b0-443e-8cfc-ac0f23b4711a, f921dd08-1c89-4deb-a2e6-45938b4196f9, d4503076-fb44-428d-8eab-3ee7019f9bbc'}, {'id': '65aa7739-fd20-45b3-be3c-624ac8e5d1a7', 'description': 'Details from 1992 until March 2004. Only summaries are available - CHI was not captured in this time period so the data is not linkable.', 'name': 'Prescription Summaries Time objects', 'dataElementsCount': 11, 'dataElements': '1c8d2437-033b-4544-9957-2516e0246b99, e310e825-5458-4363-99ae-c01142a82fc0, 5095a30d-5c1d-4df5-80d3-abf61103226b, 2b1ec7dc-5c5a-4d7e-9bc7-60746acdbc63, c9a6cc59-33f0-41e7-bf1d-123c85f99d62, ea5c4d17-781a-4a8b-9aa4-f2c81eeabab4, e57676a4-514e-4c09-91a5-8d685b5f4c7b, 7810e2d5-f82f-412d-aab4-ef1c524e1f85, f603c85c-9bbb-46f1-9b96-db84ddb8f698, e8336d9d-9a51-430e-85dc-0c917da6dafa, 5e00dbbb-e39b-43cf-8be5-93a4e901152c'}, {'id': '54fcf83d-4526-4a53-8106-50b134ffceda', 'description': 'used to identify prescribable items with specific attributes', 'name': 'Indicators', 'dataElementsCount': 18, 'dataElements': 'abe61554-6d57-4183-8417-0fe1c7a9a4e8, ee308543-4ee8-4dab-8234-dc57d2816df6, e3de4939-9d09-46fc-a7ad-63819330a899, 6f52e1d5-88d9-4cc7-bdc1-a2ea85e8af55, e416d3f6-b43a-407c-aec7-f3860afc749c, e454dfaa-6b80-4ab1-9db9-aa0a33882fc6, bb1c9548-43b2-450d-bbde-4d1d55db897d, df31fa92-4df2-4bdb-9204-62bb9d69c7d0, 2f33d130-3e49-4038-a698-e2b18860281e, 072ea3e1-8ec1-4292-b13e-09940931404b, 40d631d3-1685-4cdc-ba95-7a1b11d6d68c, 62956ceb-8407-40fc-8b3c-4db2016e6c9c, 6f5e5e95-0d88-46bc-8c8c-499fd726195b, 9a9314fc-d13a-4cf8-bcd1-15d9894a3928, 492b3300-abdf-459c-b8bb-818597b99518, 0ffe5e12-5032-4eb5-b0aa-3cd4ab60e0c3, 8ca43623-22d8-4368-a74e-ee2a456ddbf8, a8b60bc0-9fab-40ee-b588-4aa6398a4df2'}, {'id': '06c5a18d-e092-4232-bfea-268729550bbe', 'description': 'The Carstairs Deprivation Score is an area based measure, calculated at postcode sector level and is derived from four 1991/2001 census variables: overcrowding, male unemployment, social class and car ownership. See the ISD website for further information. \nPlease indicate which Carstairs version you would like for each selected variable. The higher the score, the more deprived the area. \t2 digits', 'name': 'The Carstairs Deprivation Index', 'dataElementsCount': 5, 'dataElements': '64e3f9b1-888b-4e07-8389-bd9dcda09ac7, 492da748-4cd5-4319-a2ee-b7281354b4db, 7405e49a-9d2b-4aee-909d-ad7760d18e22, 80b5f65e-915f-4304-a9d3-d8a1979c3b4d, 664aefa0-29ea-46a3-b109-30058c108fd3'}, {'id': '101dee68-cb0a-4e0b-bac8-99c98efa81e6', 'description': 'BNF codes in PIS are a coding/classification system developed by NHS England and based around the document numbering system of the BNF and extended to give unique codes down to preparation level. \ne.g. BNF item code 0601011A0BBADAC \n \nChapter 6: Endocrine System \nSection 1: Drugs used in diabetes \nSubsection 1: Insulins \nParagraph 1: Short-acting insulins \nUnique code: In this case gives the information that this is insulin aspart, Novorapid® Flexpen®, prefilled disposable injection device, 100 units/ml, 3mls \nThe BNF hierarchy in use is based upon the BNF edition published in the preceding September.  Codes are updated in line with that but codes/hierarchies that no longer appear in the published BNF are retained in the BNF classification that we use.  In addition, the hierarchy is built into the code and so, where there are a large number of drugs and preparations within a particular area of the hierarchy, there can be too many to be coded into that hierarchy.  In these cases, additional codes and hierarchies not actually present in the published BNF can be created. Items found in the appendices of the BNF (e.g. nutritional supplements) will usually appear in additional chapters created in the BNF hierarchy.', 'name': 'BNF - British National Formulary Drug Codes', 'dataElementsCount': 11, 'dataElements': '876d3e9c-4efa-4b6b-83bc-e384bdf46406, b9d771ce-94ce-45f9-9feb-c278c136a129, 75fe125b-c968-43d6-8a58-4684192068d3, 07714493-5621-436a-995d-cd2dea84d410, a3ea9f91-8bea-40f3-beb6-9f488dc34cc8, 359beb95-24df-44b1-81e2-027a542100d7, 2e3b1822-1144-4a45-9279-7841b27c7256, 57f47866-b261-4a70-bba5-16c7b1be6e0e, 5ff05c76-aeff-4afa-af6a-6de41e46000a, 1bc128be-99c6-4d11-8851-e9a8e3622cbd, 8de3a2e9-b039-450b-830e-593494084658'}, {'id': 'b16b654b-6084-47c0-9449-482e5fbb7eab', 'description': 'Information relating to the prescribable item', 'name': 'Prescribable Item Details', 'dataElementsCount': 7, 'dataElements': 'e2cfeaae-f0c1-4914-acaa-59c43706c7a5, 89eb0de6-8e41-4381-b053-9ebc4753b2e6, 743c8d7b-c90a-4bb8-9576-ef8f2e107cd1, 3ecc8528-3d31-4dec-adcb-96823e578326, 7dc442fa-f156-4541-9c29-53e5a59d98a7, 3e0fa69c-40be-49dc-953f-92756f11c55a, 2807356d-3bf2-49f1-8900-6cfd899c12f8'}, {'id': '9d9ed4b4-5253-47db-bdb5-bd068981088d', 'description': 'from April 2009 onwards. Only available where the prescription has an ePrescribed message.', 'name': 'e-Prescribed Items', 'dataElementsCount': 3, 'dataElements': 'dc510996-8106-4c52-861d-5423012a857a, dfe898ce-47a9-4645-b96e-2355e601bf03, b2a4ae39-ecdc-4a71-a37c-3511ed25dca0'}]}"
"{'title': 'Bloodwise Childhood Leukaemia Cell Bank', 'publisher': {'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE', 'contactPoint': 'enquiries@cellbank.org.uk'}, 'contactPoint': 'enquiries@cellbank.org.uk', 'abstract': 'Collection of samples and data across the following diseases: Fit and well, Leukaemia, disease', 'doiName': 'Not Available', 'keywords': ['Bank', 'Paediatric', 'UKCRC Tissue Directory', 'Fit and Well', 'Disease', 'Bloodwise', 'Leukaemia', 'Childhood', 'Cell']}",93baeb13-cc4b-47fd-9dae-5ae5277cba54,"{'spatial': 'England', 'physicalSampleAvailability': ['DNA', 'PLASMA', 'PRIMARY CELLS', 'WHOLE BLOOD'], 'typicalAgeRange': '0-4'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '4ff4ad92-fa0c-4ed4-8303-dc8ee5a6cad0', '3.0.0': '914321d0-1d86-4974-a38d-97469f9ff2cd', '2.0.0': '406e7ae7-554b-4807-b3a5-a4d81316cf9c', '1.0.0': '5512431b-4996-416f-a132-12e135ba1c7e', 'latest': '914321d0-1d86-4974-a38d-97469f9ff2cd'}","{'description': 'The Bloodwise Childhood Leukaemia Cell Bank is a national collection of samples from children and young people with paediatric haematological malignancies. It is very well annotated with demographic, clinical and genetic features. This annotation enables identification and curation of very rare subgroups. There is a range of sample types including viable cells and DNA from bone marrow, plasma and CSF supporting many different types of project. \nThe Bank is open to international as well as UK-based researchers where at least one of the investigators is based at a UK university or NHS institution. Applications are reviewed rapidly by an independent review panel. Our team can give help and advice at all stages of the application from initial enquiry to dispatch of samples. \nThe Bank also holds a collection of HLA typed cord blood which are subject to the same review process.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",914321d0-1d86-4974-a38d-97469f9ff2cd,https://web.www.healthdatagateway.org/dataset/914321d0-1d86-4974-a38d-97469f9ff2cd,"{'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}, 'access': {'dataProcessor': 'Not Applicable', 'dataController': 'Cell Bank Steering Committee', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'accessRequestCost': 'Not specified', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'jurisdiction': 'GB-ENG'}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}}","{'temporal': {'distributionReleaseDate': '2019-09-20', 'accrualPeriodicity': 'IN PROGRESS', 'startDate': '1997-01-01'}}",2020-01-13T17:04:31Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T15:55:47Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Demographic risk factors, biomarkers, physiology for Acute Compartment Syndrome', 'keywords': ['Acute Compartment Syndrome', 'Microvasculature', 'Intra-compartmental pressure', 'Mycocytes', 'Haemodynamics', 'Haemorrhage', 'Machine learning', 'Ischaemia', 'Orthopaedic', 'Trauma', 'Physical parameters', 'Biological parameters', 'Data drive model', 'Surgery', 'Emergency', 'lactate', 'creatine kinase', 'Procedure', 'fasciotomy', 'theatre', 'Prescriptions', 'Diagnosis', 'Outcome', 'Death', 'antibiotics'], 'publisher': {'identifier': '607db9c5e1f9d3704d570d5f', 'name': 'PIONEER', 'memberOf': 'HUB'}, 'contactPoint': 'PIONEER@UHB.NHS.UK', 'abstract': 'Demography, physiology, injury status, muscle and blood biomarkers for Acute compartment syndrome patients, including intra-compartmental pressure and tissue oxygenation data alongside clinical observations and treatments.'}",60c1557a-4541-429f-bbe5-f9edbdb34f8a,"{'typicalAgeRange': '10-110', 'spatial': ['https://www.geonames.org/2634343/west-midlands.html'], 'pathway': 'Data is representative of the multi-ethnicity population within the West Midlands (42% non white). Data includes all patients admitted during this timeframe, with National data Opt Outs applied, and therefore is representative of admissions to secondary care. Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.', 'followup': '1 - 10 YEARS', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '9147f060-0210-40a6-a557-ce744a63f912'},"{'description': 'Acute compartment syndrome (ACS) is an emergency orthopaedic condition wherein a rapid rise in compartmental pressure compromises blood perfusion to the tissues leading to ischaemia and muscle necrosis.  This serious condition is often misdiagnosed or associated with significant diagnostic delay, and can lead to limb amputations and death.\n\nThe most common causes of ACS are high impact trauma, especially fractures of the lower limbs which account for 40% of ACS cases. ACS is a challenge to diagnose and treat effectively, with differing clinical thresholds being utilised which can result in unnecessary osteotomy.  The highly granular data for over 800 patients with ACS provide the following key parameters to support critical research into this condition:\n\n1)\tPatient data (injury type, location, age, sex, pain levels, pre-injury status and comorbidities)\n2)\tPhysiological parameters (intracompartmental pressure, pH, tissue oxygenation, compartment hardness)\n3)\tMuscle biomarkers (creatine kinase, myoglobin, lactate dehydrogenase)\n4)\tBlood vessel damage biomarkers (glycocalyx shedding markers, endothelial permeability markers)\n\nPIONEER geography: The West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix. \n\nUHB is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.\n\nScope: Enabling data-driven research and machine learning models towards improving the diagnosis of Acute compartment syndrome. Longitudinal & individually linked, so that the preceding & subsequent health journey can be mapped & healthcare utilisation prior to & after admission understood. The dataset includes highly granular patient demographics, physiological parameters, muscle biomarkers, blood biomarkers and co-morbidities taken from ICD-10 & SNOMED-CT codes. Serial, structured data pertaining to process of care (timings and admissions), presenting complaint, lab analysis results (creatinine, eGFR, troponin, CRP, INR, ABG glucose), systolic and diastolic blood pressures, procedures and surgery details. \n\nAvailable supplementary data: Matched controls; ambulance, OMOP data, synthetic data.\n\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.'}",9147f060-0210-40a6-a557-ce744a63f912,https://web.www.healthdatagateway.org/dataset/9147f060-0210-40a6-a557-ce744a63f912,"{'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS']}, 'formatAndStandards': {'format': ['SQL'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['SNOMED CT', 'ICD10', 'OPCS4'], 'language': ['en']}, 'access': {'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'dataProcessor': 'NOT APPLICABLE', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/'], 'jurisdiction': ['GB-ENG'], 'deliveryLeadTime': '1-2 MONTHS'}}","{'temporal': {'distributionReleaseDate': '2022-01-14', 'endDate': '2021-07-27', 'accrualPeriodicity': 'QUARTERLY', 'startDate': '2004-07-08', 'timeLag': 'OTHER'}, 'origin': {'collectionSituation': ['IN-PATIENTS', 'ACCIDENT AND EMERGENCY', 'OUTPATIENTS'], 'source': ['EPR'], 'purpose': ['CARE']}}",2022-02-15T11:26:59Z,"[{'measuredProperty': 'Count', 'observedNode': 'EVENTS', 'measuredValue': '812', 'disambiguatingDescription': '812 spells for patients with Acute compartment syndrome between 08-07-2004 and 27-07-2021', 'observationDate': '14/01/2022'}]",1.0.0,{'derivation': ['Not Available']},2022-02-15T11:26:59Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 6, 'structuralMetadata.tableName': 6, 'structuralMetadata.tableDescription': 6, 'structuralMetadata.dataElementsCount': 79, 'structuralMetadata.columnName': 79, 'structuralMetadata.columnDescription': 79, 'structuralMetadata.dataType': 79, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '8481230f-bddc-47ae-97a9-9c91161092de', 'description': 'Surgery details for each spell', 'name': 'PDR45Surgery', 'dataElementsCount': 14, 'dataElements': '6c2cdc7f-a145-42f1-8a4f-2824a3dc493e, 6d0c0c07-cc10-4d93-89ce-69650082494b, 522d8210-ff6d-4c27-85d4-86537eedb9df, 38adebc2-c7c2-490d-878c-2d5cf1fd9461, 82606b48-2ea6-4841-9843-09a0d01b6112, 4cc401fa-8c13-4c30-be6c-b34326fc545c, 8e2562a7-7c34-484e-b593-823f1655cf8c, 96ab63b9-182b-4e73-9372-a90b46cc419a, 1296fbf7-967c-4c04-bdee-ff7ef544a8ce, 8d6296b2-8c11-41bc-8b44-44387703f171, 3098be51-e456-4ded-9fe1-6216529ac465, 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"{'title': 'National Asthma and COPD Audit Programme (NACAP): Pulmonary rehabilitation - clinical audit', 'keywords': ['Asthma', 'COPD', 'Clinical', 'Pulmonary Rehabilitation', 'NACAP', 'Audit'], 'contactPoint': 'DataSharing@hqip.org.uk', 'abstract': 'A continuously ascertained, record level dataset of patients attending pulmonary rehabilitation services in England Scotland and Wales. Includes patient demographics, referral information, assessment, programme enrollment, discharge.', 'publisher': {'name': 'HQIP', 'contactPoint': 'DataSharing@hqip.org.uk', 'memberOf': 'ALLIANCE'}}",3afbb83d-d47b-43b3-a202-0d3081e5d294,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'e36abed6-1b0e-493e-b79d-b5e32a73cbfe', '4.0.0': '91b2fdab-1d0e-41a1-a9cc-1ebb536c7ee5', '1.0.0': '79f92971-3f19-40cf-b34f-21e8f694a13d', '2.0.0': 'ea164f7f-766b-4af2-8afc-34db490c12d0', '3.0.0': '0bb202c7-80e8-4532-8042-1351576e6c94', 'latest': '91b2fdab-1d0e-41a1-a9cc-1ebb536c7ee5'}","{'description': 'A continuously ascertained, record level dataset of patients attending pulmonary rehabilitation services in England Scotland and Wales. Data collection commenced in March 2019 and includes patient demographics, referral information, assessment, programme enrolment, discharge.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",91b2fdab-1d0e-41a1-a9cc-1ebb536c7ee5,https://web.www.healthdatagateway.org/dataset/91b2fdab-1d0e-41a1-a9cc-1ebb536c7ee5,"{'formatAndStandards': {'language': ['en']}, 'access': {'jurisdiction': 'GB-GBN', 'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data\nhttps://www.rcplondon.ac.uk/projects/outputs/national-asthma-and-copd-audit-programme-nacap-resources', 'deliveryLeadTime': 'OTHER'}}",,2020-01-13T14:55:16Z,,4.0.0,,2021-04-14T08:13:30Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'NHS Tayside Virology', 'contactPoint': 'hicsupport@dundee.ac.uk', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE', 'identifier': '607db9c4e1f9d3704d570d1f'}, 'abstract': 'Scottish laboratory data covering virology tests from the Tayside regions.', 'keywords': ['Virology', 'NHS', 'Tayside', 'HIC', 'LIMS', 'Scotland']}",855a84b2-9d58-4b2b-a450-b6c6d534e403,"{'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'ALL primary and secondary care LIMS records for Tayside & Fife', 'followup': 'UNKNOWN', 'spatial': ['United Kingdom,Scotland']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '91f116fc-07f5-47cd-bdbd-f8b68629f98f'},"{'description': 'This covers lab tests for a large variety of virus antigen and antibody data, including covid19 from 2010 onwards.', 'isPartOf': 'University of Dundee Health Informatics Centre'}",91f116fc-07f5-47cd-bdbd-f8b68629f98f,https://web.www.healthdatagateway.org/dataset/91f116fc-07f5-47cd-bdbd-f8b68629f98f,"{'usage': {'resourceCreator': ['NHS Tayside and Fife'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['DISCLOSURE CONTROL']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'format': ['CSV', 'Database'], 'conformsTo': ['LOCAL'], 'language': ['en']}, 'access': {'deliveryLeadTime': '2-4 WEEKS', 'jurisdiction': ['GB-SCT'], 'dataProcessor': 'University of Dundee, Health Informatics Centre', 'accessRequestCost': ['Quotation available on request'], 'accessService': 'HIC has implemented a remote-access Trusted Research Environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details are available via the following link:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/', 'accessRights': ['https://www.dundee.ac.uk/hic/governanceapprovalsupport/'], 'dataController': 'Local NHS boards'}}","{'temporal': {'distributionReleaseDate': '2021-07-15', 'startDate': '2010-01-01', 'accrualPeriodicity': 'CONTINUOUS', 'timeLag': '1-2 WEEKS'}, 'origin': {'source': ['LIMS'], 'purpose': ['CARE'], 'collectionSituation': ['SERVICES']}}",2022-04-04T10:11:46Z,"[{'observedNode': 'PERSONS', 'measuredValue': '341000', 'disambiguatingDescription': '341,000 patients in the dataset', 'observationDate': '11/11/2021', 'measuredProperty': 'Count'}, {'observedNode': 'EVENTS', 'measuredValue': '2991000', 'disambiguatingDescription': '2,991,000 records in the dataset', 'observationDate': '11/11/2021', 'measuredProperty': 'Count'}]",6.0.0,,2022-04-04T10:11:47Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 46, 'structuralMetadata.columnName': 46, 'structuralMetadata.columnDescription': 46, 'structuralMetadata.dataType': 46, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '583d9f92-0353-4ecf-b3bf-5834d99eb79a', 'description': 'Tayside labs virology data. 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"{'title': 'Seasonal Influenza Vaccine Effectiveness II', 'publisher': {'name': 'BREATHE', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'memberOf': 'HUB'}, 'contactPoint': 'colin.simpson@vuw.ac.nz', 'doiName': 'DOI: 10.1136/bmjopen-2016-014200', 'keywords': ['SIVE', ' AUCKAR'], 'abstract': 'The aim of this study is to examine the safety and effectiveness of the live attenuated seasonal influenza vaccine programme in children and the inactivated seasonal influenza vaccination programme among different age and at-risk groups of people.'}",50b47298-d935-4990-a002-e26b6bb26d30,"{'spatial': 'https://www.geonames.org/countries/GB/united-kingdom.html', 'typicalAgeRange': '0-100'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '91f1aef1-7dfe-4cb3-86ab-15e09f91e969'},"{'description': '<p>Please see: <a href=""https://bmjopen.bmj.com/content/7/2/e014200"">this link for full description</a></p>', 'isPartOf': 'AUCKAR'}",91f1aef1-7dfe-4cb3-86ab-15e09f91e969,https://web.www.healthdatagateway.org/dataset/91f1aef1-7dfe-4cb3-86ab-15e09f91e969,"{'access': {'jurisdiction': ['GB-ENG', 'GB-SCT', 'GB-WLS'], 'deliveryLeadTime': 'VARIABLE', 'accessService': 'To be determined upon data access request', 'accessRights': ['To be determined upon data access request'], 'dataProcessor': 'NOT APPLICABLE', 'dataController': 'BREATHE'}, 'usage': {'dataUseLimitation': 'GENERAL RESEARCH USE', 'isReferencedBy': ['https://bmjopen.bmj.com/content/7/2/e014200'], 'resourceCreator': 'University of Edinburgh'}, 'formatAndStandards': {'format': ['text/xls', ' text/csv'], 'conformsTo': 'LOCAL', 'vocabularyEncodingScheme': 'LOCAL', 'language': 'en'}}","{'temporal': {'startDate': '2000-01-01', 'accrualPeriodicity': 'STATIC', 'endDate': '2016-12-31', 'distributionReleaseDate': '2017-07-01'}, 'origin': {'collectionSituation': 'OTHER', 'purpose': 'STUDY'}}",2021-04-09T15:35:18Z,,0.0.1,,2021-04-09T15:32:12Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Estimate the cost of care, quality of life and wider societal burden due to COPD', 'publisher': {'name': 'BREATHE', 'memberOf': 'HUB', 'identifier': '607db9c2e1f9d3704d570ce6'}, 'keywords': ['RESPIRE', 'BREATHE', 'COST', 'QUALITY', 'BURDEN', 'COPD'], 'contactPoint': 'RESPIRE@ed.ac.uk', 'abstract': 'In this study, family, health system and societal perspective will be adopted which will be useful for informing policy decisions to local stakeholders and this data will be used to generate evidence to write further large studies.'}",ee6013d6-5584-4275-b124-3113ee5ad37d,"{'typicalAgeRange': '40-150', 'pathway': 'NOT APPLICABLE', 'followup': 'UNKNOWN'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '53e34fec-d1f3-47b2-bac7-89a1ad18c352', '2.0.0': '922f72c0-e3cb-4d89-a56f-50d938a87630', 'latest': '922f72c0-e3cb-4d89-a56f-50d938a87630'}","{'description': 'The burden to the patient with Chronic obstructive pulmonary disease (COPD) is high, both in terms of health-related quality of life and health status. Exacerbations are associated with significant mortality, lead to frequent hospitalisation, and are a major determinant of COPD costs. Due to the natural history of COPD and its relentlessly progressive nature it needs long-term care, which means the range of medical and/or social services designed to help people with disabilities or chronic care needs. Hence designing the method to measure direct medical cost, direct non-medical cost, indirect cost and loss of productivity collectively, with reference to COPD, would be value-added information.\n\nIn this study, family, health system and societal perspective will be adopted which will be useful for informing policy decisions to local stakeholders and this data will be used to generate evidence to write further large studies. Interviews would be conducted for key stakeholders in the community to understand the burden of COPD to the society. Mixed method approach will give a comprehensive data to design the measure for estimating cost of illness for COPD for future cost of illness studies.\n\nFor more information, please see : https://www.ed.ac.uk/usher/respire/chronic-respiratory-disorders/estimating-the-costs-of-care-quality-of-life-and-w', 'isPartOf': 'BREATHE'}",922f72c0-e3cb-4d89-a56f-50d938a87630,https://web.www.healthdatagateway.org/dataset/922f72c0-e3cb-4d89-a56f-50d938a87630,"{'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'format': ['text'], 'language': ['en'], 'conformsTo': ['OTHER']}, 'access': {'dataController': 'Not supplied / RESPIRE (default value)', 'accessRights': ['https://www.ed.ac.uk/usher/respire'], 'accessService': 'Access is managed on a project-by-project basis. Contact the RESPIRE team.', 'jurisdiction': ['IN']}, 'usage': {'resourceCreator': ['RESPIRE Collaboration']}}","{'temporal': {'endDate': '2021-06-30', 'distributionReleaseDate': '2021-06-30', 'accrualPeriodicity': 'STATIC', 'startDate': '2020-01-01', 'timeLag': 'NOT APPLICABLE'}, 'origin': {'collectionSituation': ['COMMUNITY']}}",2021-08-09T12:44:24Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '1', 'observationDate': '30/06/2021', 'measuredProperty': 'Count'}]",2.0.0,,2021-10-19T15:56:28Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Joint Registry - Revision Elbow Replacement dataset', 'contactPoint': 'research@njr.org.uk', 'keywords': ['Joint', 'Revised', 'Elbow', 'Replacement', 'NJR', 'Registry'], 'publisher': {'identifier': '607db9c4e1f9d3704d570d23', 'memberOf': 'ALLIANCE', 'name': 'HQIP'}, 'abstract': 'The NJR datasets collect continuous, prospective data on patients undergoing primary and revision total joint replacement (hip, knee, shoulder, elbow and ankle). The dataset covers the period 2003 to present and covers the UK and beyond'}",12babf2b-42e8-4b1e-9143-3475a07bb343,"{'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/3042225/isle-of-man.html', 'https://www.geonames.org/3042363/guernsey.html', 'https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html', 'https://www.geonames.org/2641364/northern-ireland.html'], 'followup': 'UNKNOWN', 'pathway': 'Data is representative of the patient pathway. Readmissions for reasons other than revision surgery are not collected.'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'ea2a725e-29a8-43be-9a44-c6c08319b3ac', '4.0.0': '925feb2c-195f-460c-bae7-f17ea652fd5d', '2.0.0': '6d1b9b23-1197-4857-9b17-9e26cb0633e8', '1.0.0': '56a0e9e1-4587-4d18-8a57-759ae2f7c499', '3.0.0': 'aa3ba46a-9494-45f9-987d-fae9c5e9f759', 'latest': '925feb2c-195f-460c-bae7-f17ea652fd5d'}","{'description': ""The National Joint Registry for England, Wales, Northern Ireland and the Isle of Man is a database containing details of all primary and revision total hip, knee, shoulder, elbow and ankle replacement procedures carried out in NHS and independent sector hospitals in England, Wales, Northern Ireland and the Isle of Man.  Primary hip replacement has its own specific dataset for procedures.\nInitially this data is collected during a patient's time at hospital as part of bespoke data collection to support the NJR . This is submitted to NEC Software Solutions (contracted to the NJR) for processing and is used to monitor the quality and safety of patient care and outcomes. \nThis same data can also be processed and used for non-clinical purposes, such as research and planning health services. Because these uses are not to do with direct patient care, they are called 'secondary uses'. This is the NJR research ready data set.\nNJR data covers all procedures carried out in NHS and independent sector hospitals  in England, Wales (from 2003), Northern Ireland )from 2013), the Isle of Man (from 2015) and the States of Guernsey (from 2019).\nEach NJR record contains a wide range of information about an individual patient treated at an NHS or independent sector hospital, including:\n• clinical information about surgical indications and operations\n• patient information, such as age group and gender\n• component information, such as the brand and size of prosthesis used\n• outcomes, such as whether a revision procedure has been undertaken\nNJR apply a strict statistical disclosure control in accordance with the NHS Digital protocol, to all published NJR data. This suppresses small numbers to stop people identifying themselves and others, to ensure that patient confidentiality is maintained.\nWho NJR data is for\nNJR can provide data for the purpose of healthcare analysis to the NHS, government and others including:\n• national bodies and regulators, such as the Department of Health, NHS England, Public Health England, NHS Improvement and the CQC\n• local Clinical Commissioning Groups (CCGs)\n• provider organisations\n• government departments\n• researchers and commercial healthcare bodies\n• National Institute for Clinical Excellence (NICE)\n• patients, service users and carers\n• the media\nUses of the statistics\nThe statistics are known to be used for:\n• national policy making\n• benchmarking performance against other hospital providers or CCGs  \n• academic research\n• analysing service usage and planning change\n• providing advice to ministers and answering a wide range of parliamentary questions\n• national and local press articles\n• international comparison\nMore information can be found at http://www.njrcentre.org.uk/njrcentre/"", 'isPartOf': 'NJR', 'associatedMedia': ['https://www.njrcentre.org.uk/njrcentre/Research/Research-requests']}",925feb2c-195f-460c-bae7-f17ea652fd5d,https://web.www.healthdatagateway.org/dataset/925feb2c-195f-460c-bae7-f17ea652fd5d,"{'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'format': ['Tab delimited file made available via NJR Data Access Portal']}, 'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['NO RESTRICTION'], 'resourceCreator': [""the study title should be followed by the suffix: ‘An analysis from the National Joint Registry'. ""], 'investigations': ['https://www.njrcentre.org.uk/njrcentre/Research/Research-Portfolio']}, 'access': {'dataProcessor': 'NEC Software Solutions', 'deliveryLeadTime': 'VARIABLE', 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England', 'jurisdiction': ['GB-EAW'], 'accessRequestCost': ['http://www.njrcentre.org.uk/njrcentre/Portals/0/NJR%20cost%20recovery%20policy%20April%202019%20v1.0.pdf?ver=2019-04-04-105011-240'], 'accessRights': ['http://www.njrcentre.org.uk/njrcentre/Research/Research-requests', 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data']}}","{'temporal': {'startDate': '2012-04-01', 'accrualPeriodicity': 'CONTINUOUS', 'timeLag': 'VARIABLE'}, 'origin': {'collectionSituation': ['IN-PATIENTS', 'PRIVATE'], 'source': ['EPR', 'ELECTRONIC SURVEY', 'PAPER BASED'], 'purpose': ['AUDIT', 'DISEASE REGISTRY', 'OTHER']}}",2020-01-13T14:55:22Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '3016279', 'disambiguatingDescription': 'total number of NJR records analysed for the 2019 annual report\n', 'observationDate': '01/09/2020', 'measuredProperty': 'Count'}]",4.0.0,"{'qualifiedRelation': [' HES - available subject to additional permissions', 'National PROMS - available subject to additional permissions', 'National PROMS - available subject to additional permissions'], 'derivation': ['Not available']}",2022-01-07T11:20:30Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 32, 'structuralMetadata.columnName': 32, 'structuralMetadata.columnDescription': 32, 'structuralMetadata.dataType': 32, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '163ab0ce-14ad-47a3-958a-7923d7dd98b6', 'description': 'Data fields for NJR revision elbow replacement dataset', 'name': 'National Joint Registry Revision Elbow Replacement Dataset', 'dataElementsCount': 32, 'dataElements': 'c872382e-5490-4ef2-8483-cccd91433333, 38221a40-f836-4249-8f92-6965dc862c8c, 428df315-cc6f-4ca1-b919-c6e041f06fb6, fefd3a1a-3a99-4321-b8dd-9ba95f458962, b1c4a8bd-b440-464a-a424-b15e693b899f, 1375e9e6-cd83-4c6e-bf9f-cd1c344b2999, 63e25aea-7ac5-4e12-9fa6-fdb638fa4ce4, a7eb0392-1cfe-452e-82d8-be44746f33cb, 9b279e9f-5c9e-474f-8b3c-8f5cade5a2ee, 8429d7cd-b4fa-4be5-a5d6-6eacde8b070e, 78e3cef5-9396-48b6-917f-4221a27e3c0a, a934bd44-aa94-488c-8753-99653cb56c63, 5c57f34f-7afb-4fdd-a935-7c5b43df2b1d, 5f045ddc-affb-4830-9c58-80c3265b03ab, c0414d62-10fb-40b3-8951-5b0ccb3e4173, 5c6efdfc-c3a5-4650-aa2d-ea60ac72e8a0, 47338dec-a699-4791-9d04-dc3a6a5a2311, 07cd8171-da60-4a34-8cb8-74db2ab569b2, 9bd2c708-3ed0-4d9d-a0d5-3d237a998eda, fc87b0d6-a000-4eaa-8461-3f7c58cfc528, c9c92148-c0b3-4fde-8e8f-8bb74e614b92, f812ed4f-4079-4a79-82f9-3a09b725d57b, 4c501b9e-74ba-47a0-b6d4-2a6afa840b59, 668076b7-1a4c-4f78-9c21-22e302d44e45, 4b9c8826-116b-4c6a-83a0-73eb183ef917, 3553737e-6fde-45f0-b5d1-4d0f13cf9206, 1bb980c4-180e-47eb-bafd-32a270cfdc73, 06070086-a7bd-48c5-9026-a7d4a1294d2a, e9c36782-e509-4cf7-bc6b-0544c1fb8a30, 716638a6-e23b-4286-bef7-259e4b399f2f, 6f5c863c-1646-4003-96d6-170027cefc53, 9477d2ac-de93-475c-8534-a0f9acae42fd'}]}"
"{'title': 'Omega 3 Cohort', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c6e1f9d3704d570d93', 'name': 'UNIVERSITY OF NOTTINGHAM'}, 'contactPoint': 'mszav@exmail.nottingham.ac.uk', 'abstract': 'A nutritional interventional study of middle-aged women with body pain, anxiety, depression, fatigue QoL serum and faecal biomarkers and baseline and follow-up.', 'keywords': ['Pain Hub', 'Alleviate', 'Pain']}",a1bcea4c-89dd-4cdb-978c-43db676ed73c,{'spatial': ['https://www.geonames.org/6269131/england.html']},"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '41b771ab-1d2c-4948-9523-ad4416c2782a', '2.0.0': '927beb63-f650-4972-a3ad-af8e29dc26a5', 'latest': '927beb63-f650-4972-a3ad-af8e29dc26a5'}","{'description': 'Prebiotics are compounds in food that benefit health via affecting the gut microbiome. Omega-3 fatty acids have been associated with differences in gut microbiome composition and are widely accepted to have health benefits, although recent large trials have been inconclusive. We carried out a 6-week dietary intervention comparing the effects of daily supplementation with 500 mg of omega-3 versus 20 g of a well-characterized prebiotic, inulin. Inulin supplementation resulted in large increases in Bifidobacterium and Lachnospiraceae. In contrast, omega-3 supplementation resulted in significant increases in Coprococcus spp. and Bacteroides spp, and significant decreases in the fatty-liver associated Collinsella spp. On the other hand, similar to the results with inulin supplementation which resulted in significant increases in butyrate, iso-valerate, and iso-butyrate (p < .004), omega-3 supplementation resulted in significant increases in iso-butyrate and isovalerate (p < .002) and nearly significant increases in butyrate (p < .053). Coprococcus, which was significantly increased post-supplementation with omega-3, was found to be positively associated with iso-butyric acid (Beta (SE) = 0.69 (0.02), P = 1.4 x 10-3) and negatively associated with triglyceride-rich lipoproteins such as VLDL (Beta (SE) = -0.381 (0.01), P = .001) and VLDL-TG (Beta (SE) = -0.372 (0.04), P = .001) after adjusting for confounders. Dietary omega-3 alters gut microbiome composition and some of its cardiovascular effects appear to be potentially mediated by its effect on gut microbial fermentation products indicating that it may be a prebiotic nutrient.', 'associatedMedia': ['https://pubmed.ncbi.nlm.nih.gov/33382352/']}",927beb63-f650-4972-a3ad-af8e29dc26a5,https://web.www.healthdatagateway.org/dataset/927beb63-f650-4972-a3ad-af8e29dc26a5,"{'access': {'dataController': 'University of Nottingham', 'accessRights': ['http://localhost'], 'jurisdiction': ['GB-ENG']}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'format': ['csv'], 'vocabularyEncodingScheme': ['LOCAL']}, 'usage': {'investigations': ['https://pubmed.ncbi.nlm.nih.gov/33382352/']}}","{'temporal': {'startDate': '2021-01-01', 'accrualPeriodicity': 'STATIC', 'timeLag': 'NOT APPLICABLE'}, 'origin': {'purpose': ['TRIAL']}}",2021-09-27T15:07:49Z,"[{'observedNode': 'PERSONS', 'measuredValue': '75', 'observationDate': '27/09/2021', 'measuredProperty': 'Count'}]",2.0.0,,2021-10-11T16:28:28Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Yorkshire Specialist Register of Cancer in Children and Young People', 'publisher': {'contactPoint': 'datacan@uclpartners.com', 'name': 'DATA-CAN', 'memberOf': 'HUB'}, 'contactPoint': 'datacan@uclpartners.com', 'abstract': 'A regional asset for Yorkshire and Humber Data, a population-based database of all children and young people (0–29 yrs) diagnosed with cancer residing in the Yorkshire and Humber region in England (10,000 tumour registrations in children aged 0-14 years.', 'keywords': ['CANCER', 'Yorkshire', 'register', 'specialist', 'children']}",93582beb-e45a-47b6-aeab-d26f583e4c3b,"{'typicalAgeRange': '0-29', 'physicalSampleAvailability': ['BONE MARROW', 'CANCER CELL LINES', 'DNA', 'PLASMA'], 'pathway': 'Secondary care pathway, with an intention to link primary care datasets', 'spatial': 'https://www.geonames.org/11591951/yorkshire-and-the-humber.html', 'followup': '1 - 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '8e2892c2-19db-4922-85fe-60364e53f812', '4.0.0': '931efe47-04eb-4ff3-aa62-97e2e4007aed', '1.0.0': 'a9d39767-d8ee-4bf7-ac4c-c443cfa4d02d', '0.0.1': 'eb90a9f3-d3ed-4eee-8fb2-7da6185d3d02', '3.0.0': 'b765d514-1642-4762-a521-73463c977094', 'latest': '931efe47-04eb-4ff3-aa62-97e2e4007aed'}","{'description': 'A regional asset for Yorkshire and Humber Data, a population-based database of all children and young people (0–29 years) diagnosed with cancer residing in the Yorkshire and Humber region in England (10,000 tumour registrations in children aged 0-14 years since 1974 and Adolescents and Young Adults aged 15-29 years since 1990). The database contains detailed information on clinical prognostic factors including detailed treatment and stage information. A unique quality of the Yorkshire Register is that it has pre-linked data with hospital admissions datasets including inpatient, outpatient, A&E, Mental Health HES which has been used to explore long-term morbidity in the cohort. Primary care linked data have been requested and are pending. Linked educational attainment and unemployment/social benefits data are currently being sought (ethical approval in place). Demand is largely underpinned by ongoing epidemiological and cancer\noutcomes requests from University postgraduate researchers, PGT students, and other children’s tumour registers. However, pharma has also requested some of the registry data. Ethics and Research Governance are all current, the former approved as a Research Database by the Northern & Yorkshire MREC (Ref MREC 0/3/1) from which data can be requested by external researchers, and approval from the Health Research Authority Confidentiality Advisory Group to process identifiable patient data without consent (Ref—CAG 1-07(b)/2014). The Register goes beyond the dataset held by NCRAS in having much more rich and detailed treatment histories of every patient through active follow-up so beyond the traditional 6-month window since diagnosis used by NCRAS, as well as more complete tumour staging information. Register also records any cancer recurrence alongside any subsequent treatment received. \n\nThe Yorkshire Specialist Register of Cancer in Children and Young People exists primarily to underpin epidemiological research examining the patterns and causes of cancer in children and young people and to facilitate health services research describing the patient experience in the context of care received by health professionals. The YSRCCYP is an established information resource for local clinicians and commissioners, and forms the basis for national and international collaborative research.\nThe core aims of the YSRCCYP are to:\n•\tMaintain the accurate and complete collection of clinical and socio-demographic data on children, teenagers and young adults with cancer in Yorkshire, specifically information not otherwise available from other routine NHS sources.\n•\tInvestigate the effectiveness of healthcare delivery for children and young people, specifically the impact on survival and long-term health.\n•\tUndertake epidemiological research, comprising incidence and survival analyses.\n•\tDescribe environmental risk factors for childhood and young adult cancer.\n\nExample of three recent research studies by the Yorkshire Register research team are as follows:\n\n1. Respiratory morbidity in young people surviving cancer: Population based study of hospital admissions, treatment related risk factors and subsequent mortality\n(Smith et al, 2019)\n\nRespiratory diseases are a major cause of late morbidity and mortality amongst childhood cancer survivors. This population-based study provides comprehensive analysis of hospitalisations for respiratory conditions, the associated risks of admission by earlier cancer treatment and trends in readmissions and subsequent mortality in long-term survivors of cancers diagnosed under 30 years. The risk of hospitalisation was significantly higher in cancer survivors compared to the general population. Treatment with chemotherapy with known lung toxicity was associated with an increased risk of admissions for all respiratory disease especially pneumonia. Subsequent mortality was highest in those admitted for pneumonia compared to other respiratory conditions.\n\n2. Long term survival after childhood acute lymphoblastic leukaemia: population-based trends in cure and relapse by clinical characteristics\n(Smith et al, 2018)\n\nStatistical “cure models” provide additional metrics useful to identify and describe trends in survival. Additional measures include the proportion cured which is a summary of the long term survival and the median survival of the uncured which give information on those who are not long-term survivors. In this study we used a statistical cure model to explore trends in long-term survival and relapse for childhood acute lymphoblastic leukaemia (ALL) over time and by clinical characteristics. The proportion of patients cured, defined either by overall survival or relapse free survival, has increased over time while there was slight decrease in the median survival time of the uncured. We also observed a significant reduction in the risk of relapse over time.\n\n3. Comparison of ethnic group classification using naming analysis and routinely collected data\n(Smith et al, 2017)\n\nIn this study we compared cancer incidence trends using different methods for assigning ethnic groups to individuals: 1 – using ethnic group recorded in hospital medical records, 2 – using a naming software program to assign an ethnic group based on the ethnic origins of the individuals and 3 – using a combination of both processes. We found that using different methods of assigning ethnicity can result in different estimates of ethnic variation in cancer incidence. Combining ethnicity from multiple sources results in a more complete estimate of ethnicity than the use of one single source.\n\nhttps://medicinehealth.leeds.ac.uk/leeds-institute-cardiovascular-metabolic-medicine/doc/yorkshire-specialist-register-cancer-children-young-people', 'associatedMedia': ['https://link.springer.com/article/10.1007/s11764-020-00939-y', 'https://link.springer.com/content/pdf/10.1007/s11764-020-00939-y.pdf', 'https://europepmc.org/article/MED/32939686', 'https://online.boneandjoint.org.uk/doi/full/10.1302/1863-2548.11.170142', 'https://www.sciencedirect.com/science/article/abs/pii/S187778212030045X?via%3Dihub', 'https://onlinelibrary.wiley.com/doi/pdf/10.1002/ijc.32066', 'https://bmjopen.bmj.com/content/7/9/e016332?cpetoc=&utm_source=TrendMD&utm_medium=cpc&utm_campaign=BMJOp_TrendMD-0#main-content', 'https://bmjopen.bmj.com/content/9/5/e027204', 'https://core.ac.uk/download/pdf/199223946.pdf', 'https://clinicaltrials.gov/ct2/show/NCT02598401', 'https://www.researchgate.net/publication/333718450_British_OsteoNEcrosis_Study_BONES_protocol_a_prospective_cohort_study_to_examine_the_natural_history_of_osteonecrosis_in_older_children_teenagers_and_young_adults_with_acute_lymphoblastic_leukaemia_an', 'https://obgyn.onlinelibrary.wiley.com/doi/full/10.1111/aogs.13584?af=R', 'https://pubmed.ncbi.nlm.nih.gov/30247205/', 'https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6276864/', 'https://journals.lww.com/epidem/Fulltext/2019/01000/The_Association_Between_Childhood_Leukemia_and.11.aspx'], 'isPartOf': 'NOT APPLICABLE'}",931efe47-04eb-4ff3-aa62-97e2e4007aed,https://web.www.healthdatagateway.org/dataset/931efe47-04eb-4ff3-aa62-97e2e4007aed,"{'usage': {'resourceCreator': 'Professor Richard Fletbower\nUniversity of Leeds', 'dataUseLimitation': 'GENERAL RESEARCH USE', 'isReferencedBy': ['Clements C, Cromie KJ, Smith L, Feltbower RG, Hughes N, Glaser AW. Risk stratification of young adult survivors of cancer to estimate hospital morbidity burden: applicability of a pediatric therapy-based approach.J Cancer Surviv 2020 (In Press). doi:10.1007/s11764-020-00939-y.', 'Amin NL, Kraft J, Fishlock A, White A, Holton C, Kinsey S, James B, Feltbower RG. Surgical management of symptomatic osteonecrosis and utility of core decompression of the femoral head in young people with acute lymphoblastic leukaemia recruited into UKALL 2003. The Bone and Joint Journal 2020 (In press). ', 'Smith L, Glaser AW, Greenwood DC, Feltbower RG. Cumulative burden of subsequent neoplasms, cardiovascular and respiratory morbidity in young people surviving cancer. Cancer Epidemiol 2020;66:101711.', 'Amin NL, Kinsey S, Feltbower R, Kraft J, Whitehead E, Velangi M, James B. British OsteoNEcrosis Study (BONES) protocol: a prospective cohort study to examine the natural history of osteonecrosis in older children, teenagers and young adults with acute lymphoblastic leukaemia and lymphoblastic lymphoma. BMJ Open 2019;9:e027204. doi:10.1136/bmjopen-2018-027204.', 'Newton, HL, Friend, AJ, Feltbower, R, Hayden, CJ, Picton, HM and Glaser, AW. Survival from cancer in young people: An overview of late effects focusing on reproductive health. Acta Obstetricia et Gynecologica Scandinavica 2019; 98: 573-582. doi:10.1111/aogs.13584.', 'Smith L, Glaser AW, Peckham D, Greenwood DC, Feltbower RG. Respiratory morbidity in young people surviving cancer: population-based study of hospital admissions, treatment-related risk factors and subsequent mortality. Int J Cancer 2018;145:20-28. doi:10.1002/ijc.32066 ', 'Berrie L, Ellison GT, Norman PD, Baxter PD, Feltbower RG, Tennant PW, Gilthorpe MS. The association between childhood leukemia and population mixing: an artifact of focusing on clusters? Epidemiology 2018;30:75-82. doi: 10.1097/EDE.0000000000000921', 'Smith L, Pini S, Ferrari A, Yeomanson D, Hough R, Riis Olsen P, Gofti-Laroche L, Fleming T, Elliott M, Feltbower R, Kertesz G, Stark D. Pathways to diagnosis for Teenagers and Young Adults with cancer in European nations – a pilot study. Journal of Adolescent and Young Adult Oncology 2018; 7:604-611. doi:10.1089/jayao.2018.0045', 'Smith L, Glaser AW, Kinsey SE, Greenwood DC, Chilton L, Moorman AV, Feltbower RG. Long-term survival after childhood acute lymphoblastic leukaemia: population-based trends in cure and relapse by clinical characteristics. British Journal of Haematology 2018;182:851-858. doi.org/10.1111/bjh.15424.', 'Friend AJ, Feltbower RG, Hughes EJ, Dye KP and Glaser AW, Mental Health of Long Term Survivors of Childhood and Young Adult Cancer: A Systematic Review. International Journal of Cancer 2018;143:1279-1286. doi:10.1002/ijc.31337', 'Smith L, Norman P, Kapetanstrataki M, Fleming S, Fraser LK, Parslow RC, Feltbower RG. Comparison of ethnic group classification using naming analysis and routinely collected data: application to cancer incidence trends in children and young people. BMJ Open 2017;7:e016332. doi:10.1136/bmjopen-2017-016332.', 'Fairley L, Stark DP, Yeomanson D, Kinsey SE, Glaser AW, Picton SV, Evans L, Feltbower RG. Access to Principal Treatment Centres and survival rates for children and young people with cancer in Yorkshire, UK. BMC Cancer 2017;17:168. doi:10.1186/s12885-017-3160-5.', 'Furness CL, Smith L, Morris E, Brocklehurst C, Daly S, Hough RE. Cancer Patient Experience in the Teenage and Young Adult Population: Key issues and trends over time. An analysis of the national UK National Cancer Patient Experience Surveys 2010-2014. Journal of Adolescent and Young Adult Oncology 2017;6:450-458. doi:10.1089/jayao.2016.0058.', 'Amin NL, Feltbower RG, Kinsey S, et al. Osteonecrosis in patients with acute lymphoblastic leukaemia: a national questionnaire study. BMJ Paediatrics Open 2017;1:e000122. doi:10.1136/ bmjpo-2017-000122.', 'Friend, AJ, Feltbower, RG, Newton, HL, Picton, HM and Glaser, AW. Late effects of childhood cancer. The Lancet 2018;391:1772. doi:10.1016/S0140-6736(18)30572-5.', 'Friend AJ, Feltbower RG, Hughes EJ, Dye KP, Glaser AW. Mental Health of Long Term Survivors of Childhood and Young Adult Cancer: A Systematic Review. International Journal of Cancer 2018;143:1279–1286. doi:10.1002/ijc.31337.', 'van Laar M, Kinsey SE, Feltbower RG. Survival of Childhood Acute Lymphoid Leukaemia in Yorkshire by Clinical Trial Era, 1990-2011. Br J Haematol 2015; 171: 116-9.', 'Imam A, Fairley LF, Parslow RC, Feltbower RG. Population mixing and incidence of cancers in adolescents and young adults between 1990 and 2013 in Yorkshire, UK. Ca Cause Control 2016; 27: 1287-1292.'], 'investigations': ['https://dev.fundingawards.nihr.ac.uk/award/NIHR300693', 'https://www.health.org.uk/funding-and-partnerships/programmes/augur-an-open-source-interactive-cancer-analytics-web-app', 'https://www.theysolditanyway.com/organisations/university_of_leeds/'], 'dataUseRequirements': ['ETHICS APPROVAL REQUIRED', 'INSTITUTION SPECIFIC RESTRICTIONS', 'NOT FOR PROFIT USE', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION']}, 'access': {'accessRights': ['Through Leeds Institute for Data Analytics (LIDA). The Register resides with a MS SQL server relational database architecture. The dataset sits within the SEEDsecure area at UoL and is available to others through a UoL safe haven environment.', 'Cancer Register info / data request forms by email:  r.g.feltbower@leeds.ac.uk  ', 'https://lida.leeds.ac.uk/data/'], 'deliveryLeadTime': '2-4 WEEKS', 'accessRequestCost': 'This has not yet been defined and will be developed on a case by case basis initially.', 'accessService': 'The data can be accessed through the Yorkshire Specialist Register of Cancer in Children and Young People (YSRCCYP),  registry of well over 10,500 patients diagnosed with cancer in the region. Also the national data source which comprise the Systemic Anti-Cancer Therapy (SACT) dataset ,collecting chemotherapy prescribing data from all hospitals in England. 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The register also records any cancer recurrence alongside any subsequent treatment received.'], 'tools': ['https://www.health.org.uk/funding-and-partnerships/programmes/augur-an-open-source-interactive-cancer-analytics-web-app']}",2021-02-17T17:14:18Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 8, 'structuralMetadata.tableName': 8, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 143, 'structuralMetadata.columnName': 143, 'structuralMetadata.columnDescription': 143, 'structuralMetadata.dataType': 143, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '29a8b6a1-1f8e-4261-bc18-b50998535793', 'name': 'dbo.tblPatientHospitalConsultant', 'dataElementsCount': 6, 'dataElements': '9c13aaea-cbaf-4143-b6a7-3ad4419f2a9c, 654123bd-5673-4728-aac6-5d3d58aa61b4, 087e40bb-c24b-49c6-ae92-fe9f0c74c26a, 05832976-524c-4fc2-841c-fb4a110d9f71, c35a7f96-d99a-432a-b497-4848857e0ee4, bc67fab0-45b5-4e13-aabd-8e8121f24b03'}, {'id': 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"{'title': 'National Survey for Wales', 'publisher': {'memberOf': 'ALLIANCE', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'name': 'SAIL'}, 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'keywords': ['National Survey', 'SAIL'], 'doiName': 'In Progress', 'abstract': 'National Survey for Wales questionnaire responses following consent to link. NSWD superceded Welsh Health Survey in 2015.'}",bcca421a-9077-4c47-9daa-b1bc030d3dee,"{'pathway': 'Not Available', 'typicalAgeRange': '0-15', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'Wales', 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '8c242a76-98d9-434d-8a03-4c07abc5ca15', '4.0.0': '9360bc6c-2a7d-4415-869d-3e853c558f4d', '3.0.0': 'ee78ce42-7f1f-4c97-80cc-ea6ad628e5da', '2.0.0': 'bc2a13c8-fd0f-495e-a224-88dfb12a4953', '0.0.1': '927fa5cd-2fd9-4355-8e1e-7315e1ac2f58', 'latest': '9360bc6c-2a7d-4415-869d-3e853c558f4d'}","{'description': 'The Welsh Health Survey informs local government, NHS, and nationwide health strategy.\n\nThe Welsh Health Survey (WHS) collects information on the health and health-related lifestyles of people living in Wales. It is a major source of information about the health of people in Wales, the way the NHS is used, and behaviours that can affect health, such as smoking and alcohol consumption.\n\nData for the WHS is collected via face-to-face-interviews and self-completion questionnaires. The sampling unit for the WHS are households, however all adults within households were asked to take part. Families with children under the age of 16 are eligible, however where the household has 3 or more children, up to two children between the ages of 0 and 15 are randomly selected for inclusion in the study. Interviews are used to collect data at the household level, with questionnaires distributed to household members. Information on the household type and employment status of the household reference person are collected, and the interviewer is asked to comment on the condition of the property. Separate self-completion questionnaires are used to collect data for adults and young people (aged 13-15), whilst adults/guardians are required to complete questionnaires on behalf of children younger than 13 years old.\n\nThe WHS data, as provided via the UK Data Archive, is split into two separate datasets, these relating to adults – 16 and older – and children. The WHS can be analysed at both the individual and household level, with appropriate weights being supplied for each. The dataset provides a household identifier which allows for adult-child records to be combined for research exploring ‘household’ health or the links between parental and child health, for example.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/'], 'isPartOf': 'NOT APPLICABLE'}",9360bc6c-2a7d-4415-869d-3e853c558f4d,https://web.www.healthdatagateway.org/dataset/9360bc6c-2a7d-4415-869d-3e853c558f4d,"{'formatAndStandards': {'vocabularyEncodingScheme': 'NHS WALES NATIONAL CODES', 'language': 'en', 'conformsTo': 'OTHER', 'format': ['SQL database table']}, 'usage': {'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'isReferencedBy': ['Ahern, A., Jones, M. (2017) An Investigation into the use of Health Services in Wales by those who Self–report Disability using Linked Data https://doi.org/10.23889/ijpds.v1i1.159'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'RESEARCH SPECIFIC RESTRICTIONS'], 'resourceCreator': ['Welsh Government'], 'dataUseRequirements': 'PROJECT SPECIFIC RESTRICTIONS'}, 'access': {'deliveryLeadTime': '2-6 MONTHS', 'accessRequestCost': 'Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.', 'dataProcessor': 'SAIL Databank', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'jurisdiction': 'GB', 'dataController': 'NHS Wales’ Informatics Service (NWIS)', 'accessRights': ['https://saildatabank.com/application-process/']}}","{'temporal': {'startDate': '2015-06-16', 'accrualPeriodicity': 'ANNUAL', 'distributionReleaseDate': '2019-03-31', 'timeLag': '1-2 MONTHS', 'endDate': '2019-03-31'}, 'origin': {'collectionSituation': 'OTHER', 'source': ['ELECTRONIC SURVEY', 'OTHER'], 'purpose': ['STUDY', 'ADMINISTRATIVE']}}",2020-01-13T14:47:28Z,,4.0.0,"{'tools': ['https://conceptlibrary.saildatabank.com/'], 'derivation': ['Not Available'], 'qualifiedRelation': ['Yes. 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"{'title': 'Exploring psychological issues of primary care teams in Malaysia amidst COVID-19', 'publisher': {'memberOf': 'HUB', 'identifier': '607db9c2e1f9d3704d570ce6', 'name': 'BREATHE'}, 'contactPoint': 'RESPIRE@ed.ac.uk', 'keywords': ['COVID-19', 'psychological', 'Malaysia', 'RESPIRE', 'BREATHE', 'primary care'], 'abstract': 'We aim to explore the impact of the COVID-19 pandemic on psychological stress and well-being of primary healthcare workers (HCWs) in Malaysia.'}",64f78a5f-268f-4951-9c91-f7e7130baffa,"{'spatial': ['https://www.geonames.org/1733045/malaysia.html'], 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '37eb2884-d7df-489f-a3ad-f02f1e510475', '2.0.0': '94188672-a44d-4ae3-8bb3-f249891a5af7', '1.0.0': '5609036d-966f-4a2a-a3dd-d558f760b9a6', 'latest': '94188672-a44d-4ae3-8bb3-f249891a5af7'}","{'description': 'We aim to explore the impact of the COVID-19 pandemic on psychological stress and well-being of primary healthcare workers (HCWs) in Malaysia. This research will provide information on psychological issues faced by primary care team who are the front liner facing this pandemic. It will provide insight to approaches to support their psychosocial needs, which in turn will help prepare other countries yet to face this pandemic and the next unforeseen pandemic and provide equitable access to the needs of these HCWs. Quick dissemination to policy holders on the findings will influence early support given to HCWs after the current first wave and potentially in a future second wave.\n\nFor further information, see: https://www.ed.ac.uk/usher/respire/covid-19/psychological-issues-primary-care-teams', 'isPartOf': 'BREATHE'}",94188672-a44d-4ae3-8bb3-f249891a5af7,https://web.www.healthdatagateway.org/dataset/94188672-a44d-4ae3-8bb3-f249891a5af7,"{'access': {'accessService': 'Access is managed on a project-by-project basis. Contact the RESPIRE team:', 'accessRights': ['https://www.ed.ac.uk/usher/respire/about/projects'], 'dataController': 'RESPIRE', 'dataProcessor': 'RESPIRE', 'jurisdiction': ['MY']}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'format': ['text'], 'vocabularyEncodingScheme': ['LOCAL']}, 'usage': {'resourceCreator': ['RESPIRE Collaboration']}}","{'temporal': {'timeLag': 'NOT APPLICABLE', 'startDate': '2020-05-05', 'endDate': '2020-12-31', 'accrualPeriodicity': 'STATIC'}}",2020-09-18T12:30:14Z,[{}],2.0.0,,2021-08-27T10:39:23Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Unified Renal Translational Research Enterprise (NURTuRE)', 'doiName': 'Not Available', 'abstract': 'Collection of samples and data across the following diseases: Chronic kidney disease (disorder), Nephrotic syndrome (disorder).', 'publisher': {'contactPoint': 'elainedavies@kidneyresearchuk.org', 'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE'}, 'keywords': ['Translational', 'Research', 'NURTuRE', 'Nephrotic syndrome (disorder)', 'Unified', 'National', 'UKCRC Tissue Directory', 'Enterprise', 'Chronic kidney disease (disorder)', 'Renal'], 'contactPoint': 'elainedavies@kidneyresearchuk.org'}",15f07cef-f4cc-4a50-90bc-9fd40f8b6327,"{'spatial': 'England', 'typicalAgeRange': 'Not Known', 'physicalSampleAvailability': ['IN PROGRESS']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'fad8db9f-e33c-432f-831b-09ad62d5b07b', '3.0.0': '9445e723-655a-43d0-a4e5-50313d98eac0', '1.0.0': '14890617-2c54-4ccf-82bc-2b2a8c1450c2', '2.0.0': '81a515f5-5f4d-480e-b5ce-24faa7026c00', 'latest': '9445e723-655a-43d0-a4e5-50313d98eac0'}","{'description': ""The NURTuRE project was devised to create a national kidney biobank as recommended in the UK Renal Research Strategy 2016. \nStrategic Aims: To work towards achieving this NURTuRE will:\n1.\t Create a national Kidney Bio Bank for collection and storage of biological samples from 3,000 CKD patients and up > 800 NS patients, to provide a strategic resource for fundamental and translational research.\n2.\tDevelop and implement proactive UK protocol driven cohort studies in CKD and NS to investigate determinants of and risk factors for clinically important adverse outcomes.\n3.\tEngage patient cohorts, with consent to approach for any future research study.\nNURTuRE Objectives:\n1.\tThe provision of comprehensive clinical and laboratory data from cohort studies.\n2.\tThe provision of high quality bio-samples with centralised storage/retrieval.\n3.\tTo carry out core biomarker analysis of biopsy specimens in biofluids of all patients recruited and parallel assessment.\n4.\tFollow-up specimen collection. \nFirst patient recruitment - By 31 June 2017  \nCKD - baseline and 100 % follow up collections '“ over 2 years\nNS: baseline and 20% follow up - over 3 years.\nHealthy Volunteers - baseline"", 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",9445e723-655a-43d0-a4e5-50313d98eac0,https://web.www.healthdatagateway.org/dataset/9445e723-655a-43d0-a4e5-50313d98eac0,"{'access': {'dataController': 'University of Bristol and University of Nottingham', 'accessRights': 'Please contact the publisher using Contact Point details provided.', 'dataProcessor': 'Not Applicable', 'jurisdiction': 'GB-ENG', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED.', 'accessRequestCost': 'Not specified'}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2017-01-01'}}",2020-01-13T17:16:32Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T16:09:09Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Covid Vaccination Dataset (CVVD)', 'publisher': {'identifier': '5f3f98068af2ef61552e1d75', 'name': 'SAIL', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'abstract': 'This dataset covers all patients and vaccinations administered or planned for Covid-19, in or funded by the NHS.', 'keywords': ['Covid', 'COVID-19', 'NCS', 'National Core Study', 'CVVD', 'core']}",471f101c-a45e-4620-8710-be3036a46fba,"{'pathway': 'Covid-19', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-120', 'spatial': ['https://www.geonames.org/2634895/wales.html'], 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'3.0.0': '6c220417-f85b-4538-b1c8-ec9d0582aa8f', '5.0.0': '94c7dca9-a96f-4e77-b156-96676a701834', '2.0.0': '69010d13-7242-45ca-b549-47b918d36f27', '1.0.0': '511b96dd-3808-4131-9755-252944784f52', '0.0.1': '7abfb023-50f3-4851-8bae-4abe41d25c1d', '4.0.0': 'fddd0686-1742-45ce-85d8-684a66aa7b30', 'latest': '94c7dca9-a96f-4e77-b156-96676a701834'}","{'description': 'This dataset covers all patients and vaccinations administered or planned for Covid-19, in or funded by the NHS. Dataset is a de-identified record-level data of people who have received a vaccination for COVID-19, including details of the type of vaccine and date of vaccination.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://www.youtube.com/watch?v=ZK9-Jw3uVkw', 'https://www.hdruk.ac.uk/news/covid-19-vaccine-data-listed-and-available-to-request-through-hdr-innovation-gateway/?utm_source=hive&utm_medium=email']}",94c7dca9-a96f-4e77-b156-96676a701834,https://web.www.healthdatagateway.org/dataset/94c7dca9-a96f-4e77-b156-96676a701834,"{'usage': {'isReferencedBy': ['Not Available'], 'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'USER SPECIFIC RESTRICTION'], 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'resourceCreator': ['DHCW']}, 'access': {'dataProcessor': 'SAIL Databank', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'dataController': 'SAIL Databank', 'deliveryLeadTime': '2-6 MONTHS', 'jurisdiction': ['GB-GBN'], 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'accessRights': ['https://saildatabank.com/application-process/']}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'format': ['SQL database table'], 'vocabularyEncodingScheme': ['LOCAL']}}","{'temporal': {'startDate': '2020-12-08', 'timeLag': 'LESS 1 WEEK', 'endDate': '2021-08-02', 'accrualPeriodicity': 'DAILY'}, 'origin': {'purpose': ['CARE'], 'source': ['EPR'], 'collectionSituation': ['OTHER']}}",2021-02-15T18:15:27Z,"[{'observedNode': 'PERSONS', 'measuredValue': '2683983', 'observationDate': '29/09/2021', 'measuredProperty': 'Count'}]",5.0.0,"{'derivation': ['Not Available\n'], 'tools': ['https://conceptlibrary.saildatabank.com/'], 'qualifiedRelation': ['Yes. 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"{'title': 'BioDock', 'abstract': 'Collection of samples and data across the following diseases: Fit and well', 'publisher': {'name': 'TISSUE DIRECTORY', 'contactPoint': 'info@bio-dock.com', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'info@bio-dock.com', 'doiName': 'Not Available', 'keywords': ['Fit and Well', 'Biodock', 'UKCRC Tissue Directory']}",ecb82441-286f-408d-880c-9239a25fb5cd,"{'typicalAgeRange': '0-10', 'physicalSampleAvailability': ['IMMORTALIZED CELL LINES'], 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'b75bf03e-daa1-480e-ba6d-9e6718347458', '3.0.0': '94e28efd-a976-4748-81fd-956a598c26cb', '1.0.0': '2a05b233-8e46-4123-9088-825878b9f446', '2.0.0': '2f57c592-c65c-4d1c-b92d-d19d2a11c02e', 'latest': '94e28efd-a976-4748-81fd-956a598c26cb'}","{'description': 'Proud to be an industry leader in cryogenic storage. Our state-of-the-art facilities are based in the UK and Switzerland. Storing over 500,000 samples from over 70 different countries.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",94e28efd-a976-4748-81fd-956a598c26cb,https://web.www.healthdatagateway.org/dataset/94e28efd-a976-4748-81fd-956a598c26cb,"{'access': {'jurisdiction': 'GB-ENG', 'accessRequestCost': 'Not specified', 'dataProcessor': 'Not Applicable', 'dataController': 'BioDock', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED'}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}, 'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}}","{'temporal': {'startDate': '2016-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:04:31Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T15:55:46Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Unscheduled Care Datamart', 'publisher': {'memberOf': 'ALLIANCE', 'contactPoint': 'phs.edris@phs.scot', 'name': 'PUBLIC HEALTH SCOTLAND'}, 'abstract': 'The data mart links data from (NHS 24, Scottish Ambulance Service, Out of Hours Primary Care, Emergency Department, Acute, Mental Health and Deaths) to show a Continuous Unscheduled Care Pathway (CUP) for records with a valid CHI number.', 'keywords': ['Unscheduled Care', 'NHS Scotland', 'Ambulance', 'Out of Hours', 'A&E', 'NCS', 'CO-CONNECT', 'National Core Study', 'COVID-19'], 'contactPoint': 'phs.edris@phs.scot'}",a265af2e-40fc-4759-af61-eab293cdad5a,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'https://www.geonames.org/2638360/scotland.html', 'followup': 'OTHER', 'typicalAgeRange': '0-150', 'pathway': 'Secondary care data only'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '3d52da95-a310-4982-b9ba-ff5c69e77ac0', '5.0.0': '94f983ec-af41-451a-af5d-657ac58207c6', '2.0.0': 'be170751-3ab2-4cb6-a59f-d5d5867e0bfd', '1.0.0': '6343ec82-2c73-4269-b2dc-0f5358c618d5', '3.0.0': '117aa9f5-db76-48f9-9dd2-19e2d00a1b45', '4.0.0': '02dceba1-65c7-49e8-a3e2-05e71c1a3033', 'latest': '94f983ec-af41-451a-af5d-657ac58207c6'}","{'description': 'The Unscheduled Care Data Mart (UCD) is a collaboration between PHI ISD (Public Health Information, Information Services Division), NHS 24 and Scottish Ambulance Service (SAS). 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"{'title': 'RAPPER', 'contactPoint': 'rapper@manchester.ac.uk', 'publisher': {'contactPoint': 'rapper@manchester.ac.uk', 'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE'}, 'keywords': ['Malignant tumour of prostate (disorder)', 'SNPs', 'RAPPER', 'UKCRC Tissue Directory', 'Malignant tumour of breast', 'Malignant tumour of cervix', 'Malignant neoplasm of upper respiratory tract (disorder)', 'Radiogenomics'], 'doiName': 'Not Available', 'abstract': 'Collection of samples and data across the following diseases: Malignant neoplasm of upper respiratory tract (disorder), Malignant tumour of cervix, Malignant tumour of prostate (disorder), Malignant tumour of breast.'}",76d26f0f-0136-4ae5-8be9-37782a70bac5,"{'spatial': 'England', 'physicalSampleAvailability': ['DNA', 'WHOLE BLOOD'], 'typicalAgeRange': '40-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'e0f842c0-036b-4112-a667-e7e341690e67', '3.0.0': '94fab6d3-9753-4ffd-ade2-02d199d93f94', '1.0.0': '466d160b-4068-48be-a6be-80d534cf26bd', '2.0.0': 'b0886a0c-7ddc-4c2b-a499-afd7262fbe56', 'latest': '94fab6d3-9753-4ffd-ade2-02d199d93f94'}","{'description': 'RAPPER (Radiogenomics: Assessment of Polymorphisms for Predicting the Effects of Radiotherapy) is a national radiogenomics study investigating the association between common genetic variation determined by single nucleotide polymorphisms (SNPs) and radiation toxicity.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",94fab6d3-9753-4ffd-ade2-02d199d93f94,https://web.www.healthdatagateway.org/dataset/94fab6d3-9753-4ffd-ade2-02d199d93f94,"{'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}, 'access': {'dataProcessor': 'Not Applicable', 'dataController': 'University of Manchester', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED.', 'accessRequestCost': 'Not specified', 'accessRights': 'Please contact the publisher using Contact Point details provided.', 'jurisdiction': 'GB-ENG'}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2005-01-01', 'distributionReleaseDate': '2018-09-04'}}",2020-01-13T17:16:37Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T16:11:17Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'GP dataset - Welsh Primary Care', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'keywords': ['Primary care', 'GP', 'SAIL', 'NCS', 'National Core Study', 'COVID-19'], 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '5f3f98068af2ef61552e1d75', 'name': 'SAIL'}, 'abstract': 'Attendance and clinical information for all general practice interactions: includes patients symptoms, investigations, diagnoses, prescribed medication and referrals to tertiary care.'}",33fc3ffd-aa4c-4a16-a32f-0c900aaea3d2,"{'followup': '1 - 10 YEARS', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150', 'pathway': 'Primary Care'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'7.0.0': 'a806b304-1008-4fea-887a-15e49c42161d', '8.0.0': '953f6cc1-bd69-4fbc-a91b-d33f6c7aa6ca', '6.0.0': 'a79dbdef-eac1-49d7-9fdb-150ed5340481', '5.0.0': '3bd6cd26-edc2-420a-86c5-f3e05606edfd', '4.0.0': '7909f8a5-5440-4b9a-843f-cb48cd1f7e08', '2.0.0': '04f4b94d-d3d3-4adf-9efe-5c7796dc6e3b', '3.0.0': '20ae5699-abe2-4c98-9249-5dbba7770b30', '1.0.0': 'e8f6c9e8-6a5c-4117-9b9d-070e74162dd0', '0.0.1': '0f23b27c-2e82-4abe-a673-9a8d92807219', 'latest': '953f6cc1-bd69-4fbc-a91b-d33f6c7aa6ca'}","{'description': 'This dataset covers 78% of the population of Wales and is linkable with anonymised fields for individuals and GPs to other datasets, including bespoke project specific cohorts. Each GP practice uses a clinical information system to maintain an electronic health record for each of their patients; capturing the signs, symptoms, test results, diagnoses, prescribed treatment, referrals for specialist treatment and social aspects relating to the patients home environment.\n\nThe majority of the data is entered by the clinician during the patient consultation. Test results are electronically transferred from secondary care systems.\n\nThere are no standard rules for recording data within primary care clinical information systems. Therefore, each individual clinician can record information in their own way. The majority use Read Code Terminology, however, sometimes this is applied behind the scenes by the clinical system and sometimes local codes are used. Read codes are not as precise as ICD 10 or OPCS codes.\n\nCoding standards have been agreed on for conditions monitored by the QOF (Quality Outcomes Framework) returns. Since the implementation of QOF these conditions have been coded in a more consistent way.\n\nTime coverage varies between each practice.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://saildatabank.com/about-us/overview/']}",953f6cc1-bd69-4fbc-a91b-d33f6c7aa6ca,https://web.www.healthdatagateway.org/dataset/953f6cc1-bd69-4fbc-a91b-d33f6c7aa6ca,"{'access': {'dataController': 'SAIL Databank', 'accessRights': ['https://saildatabank.com/application-process/'], 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'dataProcessor': 'SAIL Databank', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'jurisdiction': ['GB']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['READ'], 'language': ['en'], 'conformsTo': ['LOCAL'], 'format': ['SQL database table']}, 'usage': {'isReferencedBy': ['Akbari et al (2018) Analysis of factors associated with changing general practice in the first 14 years of life in Wales using linked cohort and primary care records: implications for using primary care databanks for life course research. https://doi.org/10.23889/ijpds.v3i4.818'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['Welsh General Practices that have signed up to SAIL'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION']}}","{'temporal': {'endDate': '2022-12-31', 'accrualPeriodicity': 'MONTHLY', 'timeLag': 'LESS 1 WEEK', 'startDate': '2000-01-01', 'distributionReleaseDate': '2021-05-07'}, 'origin': {'purpose': ['DISEASE REGISTRY'], 'source': ['EPR'], 'collectionSituation': ['IN-PATIENTS']}}",2020-01-13T14:47:30Z,"[{'measuredValue': '3500000', 'observedNode': 'PERSONS', 'observationDate': '14/05/2021', 'measuredProperty': 'Count'}]",8.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Yes. 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Table includes number of specifics for example numeric sequence denoting the order of multiple records for a specific event. Data otherwise shows primary care information related to the codes and clinical information recorded during an event and/or treatment of an individual patient, and the dates for each, by GP Practice Code and Local Number for the patient. https://bmcmedinformdecismak.biomedcentral.com/articles/10.1186/1472-6947-9-3', 'name': 'GP_EVENT_CLEANSED', 'dataElementsCount': 14, 'dataElements': '6cc52066-89f5-41e6-87a6-27ee24e0dbbe, cdddc5e6-7aba-476e-9ec4-06f8005a1537, 58850474-8954-4fb4-af5e-43c562a20422, 43137663-883d-488f-a49a-11b26c48830d, 8b41ba98-a182-44c2-9252-0efb385aca9d, 74aded0c-210a-4ddd-bb50-1bd082546929, cffbbe8d-07f3-451a-9a32-a3b4cef23214, 8a9f126d-0c76-407c-8ff6-fcf89f51d091, e8ab8554-d8e6-4f33-b5e0-4d6ada5d1066, 28c9f69e-da50-41e0-bbcd-1094009640be, 117c9fa1-70fa-4ed2-9ed3-c3a870ab25f3, b6226a25-a8d2-429b-b357-0b4b293ca4ed, bfffb4f7-c146-4c4d-ba73-c26a2a116dac, 12bae517-421f-47bd-b0a9-27beffba9963'}, {'id': 'd161127d-35d2-45f7-8468-a549cb4d2756', 'description': 'Cleansed version of PATIENT_ALF; merged with versions of the data to fill gaps. 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"{'title': '4 Country ChrOnic Respiratory Disease study: PILOT PHASE, Islamabad', 'keywords': ['RESPIRE', 'BREATHE', 'Disease', 'Chronic', 'Respiratory'], 'contactPoint': 'RESPIRE@ed.ac.uk', 'publisher': {'memberOf': 'HUB', 'name': 'BREATHE', 'identifier': '607db9c2e1f9d3704d570ce6'}, 'abstract': 'We collected clinical data of two groups of patients. We initially recruited 100 participants and then collected further data of a subset of 43 of these participants. Details are given in the description.'}",a6ea6185-2e2e-4738-b7f1-dc052eae902e,"{'typicalAgeRange': '18-150', 'spatial': ['https://www.geonames.org/1176615/islamabad.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '95b26238-3379-4188-ad6c-a09657b77648'},"{'description': '""In this project, we collected clinical data of two groups of patients. We initially recruited 100 participants and collected some initial data. This data was then passed to the team led by Sandeep Salvi in India, who requested AAIP to collect further details from 43 of these 100 participants. Hence the 43 participants from whom further data was collected was a subset of the overall 100 participants that were initially recruited by AAIP.  We will describe them one by one below:\nGroup of 100 persons\nFor this group of persons, we collected the following information:\n•\tClinical histories of study participants stored in excel files including sensitive information like gender and age.\n•\tThe results of their breathing tests (Spirometry readings) as excel graphs converted to PDFs.\nSubgroup of 43 patients\nOut of these 100 people, 43 were recommended by the researchers (Prof Sandeep Salvi) for further investigation, and the following additional data was collected. \n1.\tX-ray reports as image files.\n2.\tX-ray images\n3.\tClinical notes of specialist doctors when they examined these group of patients. These will be image files of their handwritten notes. \n\nAll highly sensitive information in clinical histories like name and phone number, address etc have been replaced with numeric codes to avoid any risk to privacy""'}",95b26238-3379-4188-ad6c-a09657b77648,https://web.www.healthdatagateway.org/dataset/95b26238-3379-4188-ad6c-a09657b77648,"{'access': {'dataController': 'RESPIRE', 'accessRights': ['https://ed.ac.uk.usher/respire/about/projects'], 'dataProcessor': 'RESPIRE', 'jurisdiction': ['PK'], 'accessService': 'Access is managed on a project-by-project basis. Contact the RESPIRE Collaboration.'}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'format': ['text'], 'conformsTo': ['LOCAL']}, 'usage': {'resourceCreator': ['RESPIRE Collaboration']}}","{'temporal': {'startDate': '2018-09-01', 'endDate': '2019-08-31', 'timeLag': 'NOT APPLICABLE', 'accrualPeriodicity': 'STATIC'}}",2021-08-19T11:50:00Z,"[{'observedNode': 'PERSONS', 'measuredValue': '100', 'observationDate': '31/08/2019', 'measuredProperty': 'Count'}]",1.0.0,,2021-08-19T11:50:00Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'VIVALDI 2', 'abstract': 'UCL researchers have set up a national research study called “Vivaldi” with Four Seasons healthcare and the Department of Health and Social Care. The aim is to find out how many care home staff and residents have have have been infected with COVID-19.', 'contactPoint': 'vivaldi.covid19@ucl.ac.uk', 'publisher': {'contactPoint': 'vivaldi.covid19@ucl.ac.uk', 'name': 'UNIVERSITY COLLEGE LONDON', 'memberOf': 'OTHER'}, 'keywords': ['COVID', 'COVID-19', 'Coronavirus', 'Serology', 'CO-CONNECT', 'VIVALDI', 'VIVALDI 2', 'SARS-CoV-2']}",12f1ffbc-0ddd-4d6e-b126-2cccf6738658,{'spatial': 'England'},"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '5392adf9-8c7a-41dc-97a3-2b25ba5e4566', '1.0.0': '96c73136-da1b-43de-9fd1-9d5e63631b14', 'latest': '96c73136-da1b-43de-9fd1-9d5e63631b14'}","{'description': 'The study will be expanding to other providers and care homes across England and will provide a detailed picture of prevalence, seroprevalence, transmission and potential immunity over time.By testing around 6500 staff and 5000 residents across >100 care homes in England, we will estimate the proportion who have been infected with COVID-19 in the past and have antibodies, and the proportion who are infected now. These tests will be repeated over time to learn how COVID-19 spreads in care homes and how long the antibody response lasts and whether this helps to prevent re-infection with the virus.  In those who are currently infected, we will also collect information on who is experiencing symptoms to help us to understand how this affects spread of infection within care homes. We will find out about how infection spreads between care homes, the community and hospitals by linking the information we collect to national data on hospital admissions and deaths.\n\nN.B.: The data within the VIVALDI 2 dataset is being examined and cleaned to improve its quality, this is ongoing work.', 'associatedMedia': ['https://www.ucl.ac.uk/health-informatics/research/vivaldi-study'], 'isPartOf': 'NOT APPLICABLE'}",96c73136-da1b-43de-9fd1-9d5e63631b14,https://web.www.healthdatagateway.org/dataset/96c73136-da1b-43de-9fd1-9d5e63631b14,"{'formatAndStandards': {'format': ['other/xlsx'], 'language': 'en', 'vocabularyEncodingScheme': 'LOCAL', 'conformsTo': 'OMOP'}, 'access': {'accessRights': ['https://www.ucl.ac.uk/health-informatics/research/vivaldi-study/vivaldi-privacy-notice'], 'dataController': 'data-protection@ucl.ac.uk', 'deliveryLeadTime': 'OTHER', 'jurisdiction': 'GB-ENG'}}","{'temporal': {'accrualPeriodicity': 'OTHER', 'endDate': '2021-11-01', 'startDate': '2020-06-01', 'timeLag': 'VARIABLE'}, 'origin': {'purpose': 'STUDY', 'source': ['ELECTRONIC SURVEY', 'PAPER BASED'], 'collectionSituation': ['COMMUNITY', 'HOME']}}",2021-02-19T18:08:29Z,,1.0.0,,2021-02-25T17:51:33Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 4, 'structuralMetadata.tableName': 4, 'structuralMetadata.tableDescription': 4, 'structuralMetadata.dataElementsCount': 62, 'structuralMetadata.columnName': 62, 'structuralMetadata.columnDescription': 62, 'structuralMetadata.dataType': 62, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '560221bf-1f95-4932-8bf0-cc39f763b8e3', 'description': '7 days following swab', 'name': '7_days_following_swab', 'dataElementsCount': 15, 'dataElements': '0d27b216-d938-486d-83d1-5fa8980e1098, 006423ff-9750-41b6-b80c-db90633e93cc, c7d47359-8d73-4009-b348-3b6a049f2e5e, 8a5aaa18-c79c-47be-a64a-af2066b1f1f5, 2cdfa2d7-17dd-4460-b221-dee51ce6d87f, 4c9b66b4-ab45-4f75-ba62-ba5599949f9f, 19fd25ea-ab3c-4c0b-9a10-71859cbf3c92, adf6595f-afdd-4287-a4da-20d1440f38d2, 255449e2-e83c-45fc-9328-d477fa1f0abf, 01477798-9f86-4284-86ee-a5b98963d957, b825b653-f0cb-439b-98b0-9d96113d8946, 604a5635-3152-41db-96fc-908945431a0b, 6fd26abc-a273-43e7-b8c2-57bf6bf8b1b6, 53a52293-10c1-43a9-8b75-24bcee562fb1, 848c6713-e359-43e3-8e6d-306bcdd14865'}, {'id': '996c29f1-fa8a-4769-bd51-e2fb3c2c7087', 'description': 'Data Collection', 'name': 'Data_Collection', 'dataElementsCount': 11, 'dataElements': '9272b2e8-ba34-4e87-9ab2-74b3c77f3445, 54bb0ed1-f663-48e1-ac89-8e776a996e5a, a66a2aca-c784-4191-91f8-3205c8cc4322, 817d8b50-df05-45de-a23d-45528f7ff2f7, a2adf545-e5d5-4841-aced-ba0575e80236, c8797f97-7ee4-4dc0-8fb3-abdb996f1ab5, daf59cb4-1cc2-4b0a-b5c5-41fe020bc100, 97a3574b-0dbb-4262-9191-bfc65adcafd2, 5f093b86-5421-4cd7-86b5-05003475a829, 1450c293-97a6-4907-b31e-6e704bf8f98a, a797d754-ef3f-427c-8b09-4ecd505e75f3'}, {'id': '1965f185-64f7-476c-9d6e-cf755cefe3df', 'description': 'Lab Participant', 'name': 'Lab_Participant', 'dataElementsCount': 13, 'dataElements': 'ecdeb46d-7e05-4331-b75a-8ccb1d3a6704, a3e67add-0307-45a7-97ba-6e58a4a53967, 44afcae9-a0c2-44be-a5da-7154e51e99c5, aeb93693-77b7-4fe0-a390-400ed42ce8a2, 90ae38da-3d22-4f30-b942-0a730235d818, c29e563c-a5c0-412b-8860-673869f474c4, ec11f41d-22a5-409a-8ee1-f941760d66f1, b01422ab-87f0-4472-a6a9-ff80f307a5d6, 06c296dd-37f4-4240-be9f-b4b4cda89606, 12fd6a1c-5eb1-45d1-b58a-3f78622d0bf4, e1551ef3-4b16-4599-8683-cc0cfd4a3dd3, 2aa53428-6f4f-4335-a549-002d2b2924fe, 07cd8fc9-ccb6-4ace-b524-fe4f60502b16'}, {'id': 'a37eeb46-2e25-46bb-9e36-0badc8619f2a', 'description': 'Day of Swab', 'name': 'Day_of_Swab', 'dataElementsCount': 23, 'dataElements': '2cde613c-9a26-4929-aac3-5400e992b69b, 79241b8b-9f6c-42b4-a992-89fb0239c30d, 7c858a3f-9d69-4e84-969e-b4c96805023c, faf20e1a-d166-4b90-ba40-4de7e35a9649, 21ff2923-d705-48a3-acfe-2b83d29e740e, 26bd8b89-d3a7-42c0-85e1-e7a01fb656f2, e712f0b7-7d90-432b-b825-4360126a863c, 142a585a-e833-4ff4-9827-d07dbf7cc18b, 04ba5b14-058e-425f-961d-4008dc2a259c, 7ce881d0-ae9f-490a-9b89-11a3900a0a00, e7022b56-3af0-4cb7-9a93-2fb2a09f6c6f, d2407f6a-389e-4e7f-a4cb-6bb62b89f0b3, 641a8dc5-033f-49c7-a5d9-be43e38884e0, 39cb624e-7402-4f91-9c26-afa175d2a76a, df7f7a1d-0736-4285-b1dd-47e3c3a3352b, c2fab211-80f5-411d-a719-e41820cee985, c9d30ff3-fa27-43b7-b350-47044f0296ad, 43cb501a-4293-47cf-9e5c-2a6edb8dd46d, fb7ace1d-bdf2-4b44-86af-2e0f5c91e391, 5cc68566-06c0-4533-a4e5-780fca1cad76, b73896b0-01d3-4518-85ed-48dc3af59240, 13d5b72f-3330-43ef-91c2-0251137c1bff, 84be1f7c-bf4a-434f-9694-612e292903bf'}]}"
"{'title': 'SAIL Dementia e-Cohort', 'doiName': 'In Progress', 'keywords': ['Dementia', 'SAIL', 'SDEC'], 'abstract': 'This dataset contains information about dementia cohorts in relation to comorbidities.', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'SAIL', 'contactPoint': 'SAILDatabank@swansea.ac.uk'}, 'contactPoint': 'SAILDatabank@swansea.ac.uk'}",f48b7c05-6a44-480c-84c6-4f7a684f29f8,"{'followup': '1 - 10 YEARS', 'typicalAgeRange': '18-150', 'spatial': 'Wales', 'pathway': 'Primary care', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '6e2c66c5-8884-4deb-ad67-949c80a214d6', '1.0.0': '9709ee81-c5f1-4c01-a1ac-51ae2a0a60f3', 'latest': '9709ee81-c5f1-4c01-a1ac-51ae2a0a60f3'}","{'description': 'This dataset contains information about dementia cohorts in relation to comorbidities.', 'isPartOf': 'Not Applicable', 'associatedMedia': ['https://saildatabank.com/about-us/overview/']}",9709ee81-c5f1-4c01-a1ac-51ae2a0a60f3,https://web.www.healthdatagateway.org/dataset/9709ee81-c5f1-4c01-a1ac-51ae2a0a60f3,"{'formatAndStandards': {'format': ['SQL database table'], 'conformsTo': 'LOCAL', 'vocabularyEncodingScheme': ['READ', 'ICD10', 'ICD9'], 'language': 'en'}, 'access': {'dataController': 'SAIL Databank', 'deliveryLeadTime': '2-6 MONTHS', 'accessRequestCost': 'Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.', 'accessRights': ['https://saildatabank.com/application-process/'], 'jurisdiction': 'GB', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). 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"{'title': 'FFFAP -  National Hip Fracture Database Facilities Survey 2019', 'contactPoint': 'DataSharing@hqip.org.uk', 'abstract': ""Dataset contains information on all patients admitted to hospital with hip fractures.  Includes multiple aspects of patients' care including time to orthogeriatric assessment, time to surgery, assessment of delirium and discharge destination."", 'publisher': {'identifier': '607db9c4e1f9d3704d570d23', 'name': 'HQIP', 'memberOf': 'ALLIANCE'}, 'keywords': ['Audit', 'FFFAP', 'Fall', 'Fragility', 'Hip Fracture', 'Database', 'Facilities Survey 2019']}",025c9e8a-938b-4886-9e03-fcad90fe7157,"{'followup': '0 - 6 MONTHS', 'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '60-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '97771ec7-2abb-4d6e-b630-77c61a5e314a'},"{'description': 'The NHFD FA is an annual survey of all trauma centres in the UK. It includes data on the support for clinical governance, organisation of theatres and care bundles that are used. Full datasets available on request: NHFD@rcplondon.ac.uk', 'associatedMedia': ['https://www.hqip.org.uk/a-z-of-nca/falls-and-fragility-fractures-includes-the-hip-fracture-database/#.YKJrbahKiUk'], 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",97771ec7-2abb-4d6e-b630-77c61a5e314a,https://web.www.healthdatagateway.org/dataset/97771ec7-2abb-4d6e-b630-77c61a5e314a,"{'access': {'accessRequestCost': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data', 'https://www.rcplondon.ac.uk/guidelines-policy/applying-work-falls-and-fragility-fracture-audit-programme-data'], 'accessRights': ['https://www.rcplondon.ac.uk/guidelines-policy/applying-work-falls-and-fragility-fracture-audit-programme-data', 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England', 'deliveryLeadTime': 'VARIABLE', 'dataProcessor': 'RCP London and Crown Informatics', 'jurisdiction': ['GB-EAW']}, 'usage': {'dataUseLimitation': ['NO RESTRICTION'], 'resourceCreator': ['Data has been provided by the Healthcare Quality Improvement Partnership from the Falls and Fragility Fractures Audit Programme'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE']}, 'formatAndStandards': {'conformsTo': ['OTHER'], 'vocabularyEncodingScheme': ['OTHER'], 'format': ['CSV'], 'language': ['en']}}","{'origin': {'collectionSituation': ['IN-PATIENTS'], 'purpose': ['AUDIT'], 'source': ['ELECTRONIC SURVEY', 'OTHER']}, 'temporal': {'accrualPeriodicity': 'ANNUAL', 'startDate': '2019-01-01', 'endDate': '2019-01-31', 'timeLag': 'VARIABLE'}}",2021-11-29T21:30:18Z,"[{'observedNode': 'EVENTS', 'measuredValue': 100, 'disambiguatingDescription': 'Percent of acute trusts / health boards in England and Wales submitting data to the NHFD', 'observationDate': '01/05/2018', 'measuredProperty': 'count'}]",4.0.0,"{'qualifiedRelation': ['Data linked with that from other custodians may be available, but the release of linked data will be subject to the separate permission of all relevant data controllers.'], 'derivation': ['Not known']}",2021-11-29T21:30:18Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
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"{'title': 'Characterisation of hospitalised COPD exacerbations using real world data', 'publisher': {'memberOf': 'HUB', 'identifier': '607db9c5e1f9d3704d570d5f', 'name': 'PIONEER'}, 'keywords': ['COVID-19', 'COPD', 'Chronic Obstructive Pulmonary Disease', ' Death', 'Mortality', 'Intensive Care', 'Hospital Admissions', 'Exacerbation', 'Coricosteroids'], 'contactPoint': 'PIONEER@UHB.NHS.UK', 'abstract': 'Chronic Obstructive Pulmonary Disease (COPD) patients admitted or using hospital services. Granular care pathways. Multi-morbidity, investigations, interventions, treatments. Serial physiology, blood biomarkers, physiotherapy, outcome. Deeply phenotyped.'}",f6f2978d-4a49-4dd9-8615-78d28e6dc83c,"{'typicalAgeRange': '15-105', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Data is representative of the multi-ethnicity population within the West Midlands (42% non white).  Data includes all patients admitted during this timeframe, with National data Opt Outs applied, and therefore is representative of admissions to secondary care.  Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.', 'followup': '1 - 10 YEARS', 'spatial': ['https://www.geonames.org/2634343/west-midlands.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '25237b18-98ef-4f94-862d-df0ed3f9d322', '2.0.0': '9836e0e1-5ea2-4dc4-be5a-24e390b7fa33', 'latest': '9836e0e1-5ea2-4dc4-be5a-24e390b7fa33'}","{'description': 'Chronic respiratory diseases remain one of the leading causes of death from non-communicable disease, with the majority of deaths due to Chronic Obstructive Pulmonary Disease (COPD). COPD presents a significant healthcare burden and is detrimental to quality of life. Currently, there are no disease modifying treatments.\n\nFurther to the burden of stable COPD, patients experience acute exacerbations (AECOPD), defined as an acute worsening of symptoms which requires a change in treatment.  These are important events, associated with increased mortality, morbidity and long-term health impacts. Patients who exacerbate frequently are more likely to have a faster decline in lung function, have a lower quality of life and experience adverse cardiovascular events.  Whilst there are therapies to reduce exacerbation frequency and treat the acute event, options have limited efficacy and have not changed in overall drug class for many years.\n\nExacerbations are defined by the severity of the symptoms and the treatments involved – so a severe exacerbation is one which requires hospitalisation.  However, in our ageing and increasingly frail population, hospitalisation can be required for even a minor event, if a person is already struggling to cope at home.\n\nPIONEER geography \nThe West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix. \n\nEHR. UHB is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.\n\nScope: All hospitalised patients admitted to UHB between January 2018 to January 2020 curated to focus on COPD exacerbations. Longitudinal & individually linked, so that the preceding & subsequent health journey can be mapped & healthcare utilisation prior to & after admission understood. The dataset includes highly granular patient demographics & co-morbidities taken from ICD-10 & SNOMED-CT codes. Serial, structured data pertaining to acute care process (timings, staff grades, specialty review, wards), presenting complaint, acuity, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations), all blood results, imaging reports, all prescribed & administered treatments (fluids, blood products, procedures), all outcomes.\n\nAvailable supplementary data: Matched controls; ambulance, synthetic data, differing time periods including/excluding COVID-19 pandemic periods.\n\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://www.pioneerdatahub.co.uk/wp-content/uploads/COPD-Exacerbations-infographic-V3-page-001.jpg']}",9836e0e1-5ea2-4dc4-be5a-24e390b7fa33,https://web.www.healthdatagateway.org/dataset/9836e0e1-5ea2-4dc4-be5a-24e390b7fa33,"{'usage': {'resourceCreator': ['This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'isReferencedBy': ['NOT APPLICABLE'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}, 'access': {'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/'], 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'deliveryLeadTime': '1-2 MONTHS', 'dataProcessor': 'NOT APPLICABLE', 'jurisdiction': ['GB-ENG', 'GB-SCT']}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'vocabularyEncodingScheme': ['SNOMED CT', 'ICD10', 'OPCS4'], 'format': ['SQL']}}","{'temporal': {'accrualPeriodicity': 'QUARTERLY', 'endDate': '2020-01-01', 'timeLag': 'OTHER', 'startDate': '2018-01-01', 'distributionReleaseDate': '2021-05-27'}, 'origin': {'collectionSituation': ['ACCIDENT AND EMERGENCY', 'IN-PATIENTS', 'OUTPATIENTS'], 'purpose': ['CARE'], 'source': ['EPR']}}",2021-12-20T12:48:28Z,"[{'observedNode': 'EVENTS', 'measuredValue': '14852', 'disambiguatingDescription': '14,852 Spells of hospitalised COPD exacerbations', 'observationDate': '27/05/2021', 'measuredProperty': 'Count'}]",2.0.0,{'derivation': ['NOT AVAILABLE']},2022-01-14T10:12:55Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 6, 'structuralMetadata.tableName': 6, 'structuralMetadata.tableDescription': 6, 'structuralMetadata.dataElementsCount': 143, 'structuralMetadata.columnName': 143, 'structuralMetadata.columnDescription': 143, 'structuralMetadata.dataType': 143, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '29c2597c-7a70-4829-b61b-cd902f03d181', 'description': 'Dnar Teal details for each spell', 'name': 'AlobaidiDnarTeal', 'dataElementsCount': 7, 'dataElements': '96393162-f131-49b5-86a5-d9a6be26c6f5, b54e351f-db80-4120-bcb6-7fbeba18a822, a8681f50-7a62-4314-9fe2-f70981d2157b, 66b00200-5ccd-4dec-ad9b-742e78e4c32b, a8c19ee9-9f69-440f-8e9d-e2bc1c7fb8d2, 5c3c9af3-56e9-48bc-b7ae-ca8769f08a78, 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"{'title': 'RATHL Trial', 'doiName': 'Not Available', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY', 'contactPoint': 'ctc.rathl@ucl.ac.uk'}, 'keywords': ['FDG-PET', 'Hodgkin lymphoma', 'Trial', 'ABVD', 'UKCRC Tissue Directory', 'Malignant lymphoma (disorder)', 'RATHL'], 'abstract': 'Collection of samples and data across the following diseases: Malignant lymphoma (disorder)', 'contactPoint': 'ctc.rathl@ucl.ac.uk'}",e5ec63dd-4da5-4119-99c8-5cc79045618c,"{'typicalAgeRange': '15-150', 'physicalSampleAvailability': ['IN PROGRESS'], 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '7bacd2bb-9312-492e-9412-c06205e3e711', '3.0.0': '99812cec-ea1c-4979-8e00-32df5bad000b', '2.0.0': 'c83d2206-3778-400b-9b26-27c7588af930', '1.0.0': 'ba3bc001-4ab6-411e-a86a-5254fc37399a', 'latest': '99812cec-ea1c-4979-8e00-32df5bad000b'}","{'description': 'RATHL is a multicentre, randomised, phase III trial comparing treatment outcome for patients with advanced Hodgkin lymphoma, using FDG-PET imaging after 2 cycles of ABVD to determine response and subsequent management.\nRecruitment target: 1200 patients\nPatients received 2 cycles of ABVD and then had a PET-CT scan.    PET negative patients were randomised to either ABVD or AVD for a further 4 cycles.  PET positive patients received either BEACOPP-14, for 4-6 cycles or BEACOPP escalated, for 3-4 cycles.\nSamples collected for trial:  Formalin fixed paraffin embedded tumour block - sent to HMDS, Leeds.  Blood sample to be analysed at site.  Blood sample - sent to Simpson Centre for Reproductive Health, Edinburgh.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",99812cec-ea1c-4979-8e00-32df5bad000b,https://web.www.healthdatagateway.org/dataset/99812cec-ea1c-4979-8e00-32df5bad000b,"{'access': {'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'dataProcessor': 'Not Applicable', 'jurisdiction': 'GB-ENG', 'dataController': 'University College London', 'accessRequestCost': 'Not specified', 'accessRights': 'Please contact the publisher using Contact Point details provided'}, 'formatAndStandards': {'conformsTo': ['NULL'], 'language': ['en'], 'format': ['In Progress'], 'vocabularyEncodingScheme': ['NULL']}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2008-01-01'}}",2020-01-13T17:16:38Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:13:02Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Clinical characteristics of hospitalised primary biliary cholangitis patients', 'publisher': {'memberOf': 'HUB', 'name': 'PIONEER', 'identifier': '607db9c5e1f9d3704d570d5f'}, 'keywords': ['Patient outcomes', 'Primary Biliary Cholangitis', 'rare disease', 'Machine learning', 'Artificial Intelligence', 'Data science', 'Treatment responses', ' biopsy', 'Liver', 'autoimmune', 'Gall Bladder', 'Hepato-pancreato biliary'], 'contactPoint': 'PIONEER@UHB.NHS.UK', 'abstract': 'Patients with hospitalised Primary Biliary Cholangitis (PBC) from 2000 to date. Granular care pathways. Deeply phenotyped. Serial physiology, blood markers, outcome data. Demography, multi-morbidity, investigations and treatments.'}",ee315149-c131-4b7c-b88a-9d4a3e1f7948,"{'followup': '1 - 10 YEARS', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['United Kingdom,England,West Midlands'], 'typicalAgeRange': '18-110', 'pathway': 'Data is representative of the multi-ethnicity population within the West Midlands (42% non white). Data includes all patients admitted during this timeframe, with National data Opt Outs applied, and therefore is representative of admissions to secondary care. Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '9991ac9c-0aab-4588-a862-eaab2e60a1f7'},"{'description': 'Background \n\nPrimary biliary cholangitis (PBC) is a rare, autoimmune cholestatic liver disease that puts patients at risk of life-threatening complications. PBC is primarily a disease of women, affecting approximately one in 1,000 women over the age of 40. \n\nWith an estimated total prevalence in the UK of ~3.9 per 10,000 of the population, equating to around 19,175 people in England, the survival of PBC patients is significantly worse than the general population if left untreated. \n\nMany patients are diagnosed after multiple acute care admissions, with tummy pain, jaundice or scarring of the liver.  The diagnosis can still be missed here, putting patients at increased risk of liver complications and even death. \n\nThis dataset focuses on describing the demographic, clinical and laboratory characteristics of PBC patients.   \n\nPIONEER geography: The West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix.  \n\nEHR. UHB is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”. \n\nScope: All patients from 2000 onwards, curated to focus on Primary Biliary Cholangitis (PBC). Longitudinal & individually linked, so that the preceding & subsequent health journey can be mapped & healthcare utilisation prior to & after admission understood. The dataset includes highly granular patient demographics, co-morbidities taken from ICD-10 & SNOMED-CT codes. Serial, structured data pertaining to process of care (admissions, wards and discharge outcomes), presenting complaints, all physiology readings (pulse, temperature, blood pressure, respiratory rates, oxygen saturations), all sample analysis results, all prescribed & administered treatments, along with chemotherapy data and all outcomes.'}",9991ac9c-0aab-4588-a862-eaab2e60a1f7,https://web.www.healthdatagateway.org/dataset/9991ac9c-0aab-4588-a862-eaab2e60a1f7,"{'formatAndStandards': {'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['ICD10'], 'format': ['SQL'], 'language': ['en']}, 'access': {'dataProcessor': 'NOT APPLICABLE', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/'], 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'jurisdiction': ['GB-ENG'], 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'deliveryLeadTime': '1-2 MONTHS'}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS']}}","{'origin': {'source': ['EPR'], 'purpose': ['CARE'], 'collectionSituation': ['ACCIDENT AND EMERGENCY', 'OUTPATIENTS', 'IN-PATIENTS']}, 'temporal': {'distributionReleaseDate': '2022-02-21', 'startDate': '2000-03-30', 'endDate': '2022-02-01', 'timeLag': 'OTHER', 'accrualPeriodicity': 'QUARTERLY'}}",2022-05-24T10:17:14Z,"[{'measuredProperty': 'Count', 'observedNode': 'EVENTS', 'measuredValue': '5625', 'disambiguatingDescription': '5,625 admissions between 30-03-2000 and 01-02-2022', 'observationDate': '21/02/2022'}]",1.0.0,{'derivation': ['Not Available']},2022-05-24T10:17:14Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 13, 'structuralMetadata.tableName': 13, 'structuralMetadata.tableDescription': 13, 'structuralMetadata.dataElementsCount': 125, 'structuralMetadata.columnName': 125, 'structuralMetadata.columnDescription': 125, 'structuralMetadata.dataType': 125, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '6731754e-959f-47fa-9cc5-6bea66b2f0e3', 'description': 'Patients Drug Administration Details', 'name': 'PDR031DrugAdministration', 'dataElementsCount': 16, 'dataElements': '024432ca-c0b1-4dc6-a0fb-e623e16925b4, 3f810d24-9d20-4fa4-8e4c-f70a1e2721bc, 4925335d-ef1c-43e3-b882-816a0a0515da, 04054a68-64a0-42eb-b06c-bf4421be0e2e, 7cf3b1ac-b542-423c-a4d9-98cb1b6eee31, 0d8f1865-5ef8-46a1-91f9-71a488d41cdb, 64faa705-d1f7-4f5f-b925-f96943f4c211, d92a89d1-c298-4e49-a3b0-470dbba50360, e1270071-8295-4e3d-89b1-bc2d354b6269, 52f1249c-b307-4599-ba17-f0ef468a71c5, c05c85c2-dd2e-4b0b-9f7d-755d04cedb8a, 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"{'title': 'Sars-CoV-2 Immunity & REinfection EvaluatioN (SIREN)', 'keywords': ['COVID', 'COVID-19', 'Coronavirus', 'Serology', 'CO-CONNECT', 'SIREN', 'SARS-CoV-2', 'reinfection', 'vaccine'], 'publisher': {'name': 'PUBLIC HEALTH ENGLAND', 'memberOf': 'ALLIANCE', 'identifier': '607db9c5e1f9d3704d570d63'}, 'contactPoint': 'SIREN@PHE.gov.uk', 'abstract': 'Large-scale study testing blood samples and swabs obtained from healthcare workers who work in a clinical setting to see if infection with COVID-19 protects them from future episodes of infection.'}",8e0221d4-dcfa-4580-834b-f44421fca3b5,"{'followup': '6 - 12 MONTHS', 'spatial': 'https://www.geonames.org/6269131/england.html', 'pathway': 'Coverage of healthcare workers primarily in acute trusts.', 'typicalAgeRange': '18-150', 'physicalSampleAvailability': ['AVAILABILITY TO BE CONFIRMED']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '3aed4a4b-a98a-48c0-939f-dadd9f97bccc', '3.0.0': '99b505ee-44c6-497d-b30b-3ce80eba4047', '2.0.0': 'a638f8a0-3527-49a8-a269-06db49f051c6', '1.0.0': '642c7603-6bf5-4794-9fd4-7ed6488be93d', 'latest': '99b505ee-44c6-497d-b30b-3ce80eba4047'}","{'description': 'This is a large-scale study testing blood samples and swabs obtained from healthcare workers who work in a clinical setting to see if infection with COVID-19 protects them from future episodes of infection. It was set up by PHE in April 2020 in response to the need to assess the risk of re-infection in those who have tested positive for antibodies. Since the introduction of COVID-19 vaccination among healthcare workers, it is also a leading source of information on vaccine effectiveness.\n\nThe aim of SIREN is to establish whether healthcare workers who test positive for COVID-19 antibodies are protected from future episodes of infection.  We will follow healthcare workers for at least a year and study their immune response to the virus causing COVID-19. We will do this by collecting baseline data, such as their history of COVID-19 infection and potential exposure to the virus via an online survey.  Continued details of exposure and any new symptoms is monitored in regular follow-up surveys. A swab test (PCR) is completed every other  every other week in order to detect mild cases of COVID-19 or cases without symptoms.  Blood samples are taken each month to determine whether individuals have antibodies.  Since January 2021, vaccination data has been collected, in order to inform vaccine effectiveness estimates among healthcare workers.\n\nPublic Health England is not currently accepting requests to access this dataset.', 'associatedMedia': ['https://snapsurvey.phe.org.uk/siren/'], 'isPartOf': 'NOT APPLICABLE'}",99b505ee-44c6-497d-b30b-3ce80eba4047,https://web.www.healthdatagateway.org/dataset/99b505ee-44c6-497d-b30b-3ce80eba4047,"{'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['OMOP'], 'language': ['en'], 'format': ['other, xlsx']}, 'access': {'accessService': 'Access to SIREN data is currently not supported. You are encouraged to sign up to the PHE Office for Data Release newsletter for updates on data availability and access routes.', 'accessRights': ['www.gov.uk/government/publications/accessing-public-health-england-data/about-the-phe-odr-and-accessing-data'], 'jurisdiction': ['GB-ENG'], 'dataController': 'Public Health England'}, 'usage': {'resourceCreator': ['Public Health England']}}","{'origin': {'source': ['EPR', 'ELECTRONIC SURVEY', 'LIMS', 'PAPER BASED'], 'collectionSituation': ['CLINIC'], 'purpose': ['STUDY']}, 'temporal': {'accrualPeriodicity': 'OTHER', 'startDate': '2020-05-20', 'timeLag': 'VARIABLE'}}",2021-02-23T18:43:34Z,"[{'observedNode': 'PERSONS', 'observationDate': '01/03/2020', 'measuredProperty': 'TBC', 'measuredValue': '49282'}]",3.0.0,,2021-06-04T09:29:53Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 7, 'structuralMetadata.tableName': 7, 'structuralMetadata.tableDescription': 7, 'structuralMetadata.dataElementsCount': 278, 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"{'title': 'Blended learning for primary care physicians on COPD in Bangladesh', 'contactPoint': 'RESPIRE@ed.ac.uk', 'publisher': {'memberOf': 'HUB', 'name': 'BREATHE', 'identifier': '607db9c2e1f9d3704d570ce6'}, 'keywords': ['RESPIRE', ' Bangladesh', ' bubble continuous positive airway pressure', ' bcpap', ' treatment', ' children', ' severe', ' pneumonia'], 'abstract': 'The aim is to explore the use of both face-to-face and online methods (blended learning) for the training of primary care doctors in COPD in Bangladesh.'}",3907a55f-104b-4533-ba21-69bd5f08ce8f,"{'typicalAgeRange': '28-52', 'spatial': 'https://www.geonames.org/1210997/bangladesh.html'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '3d8c1942-ba41-44aa-8ca8-9051a878ec44', '1.0.0': '9a836aa8-60c7-4911-943e-477b0ae8bbb8', 'latest': '9a836aa8-60c7-4911-943e-477b0ae8bbb8'}","{'description': 'The aim is to explore the use of both face-to-face and online methods (blended learning) for the training of primary care doctors in COPD in Bangladesh.  We will assess the feasibility of the blended approach, comparing exam scores with usual face-to-face training and exploring participants’ thoughts following the training.\n\nIn Bangladesh, more than 6.5 million people over the age of 40 have Chronic Obstructive Pulmonary Disease (COPD). COPD is often under diagnosed and not well managed by doctors in primary care practices in Bangladesh.\n\nCOPD training for doctors takes about 40 hours and because primary care is so busy, doctors often can’t attend training as there would be no-one to see patients while they are away from the practice.\n\nCombining online learning, with the standard face-to-face training, would reduce the time away from practice.\n\nThe aim is to explore the use of both face-to-face and online methods (blended learning) for the training of primary care doctors in COPD in Bangladesh. We will assess the feasibility of the blended approach, comparing exam scores with usual face-to-face training and exploring participants’ thoughts following the training.\n\nFor further information, see: https://www.ed.ac.uk/usher/respire/respire-fellowships/md-nazim-uzzaman', 'isPartOf': 'RESPIRE', 'associatedMedia': ['https://www.ed.ac.uk/usher/respire/respire-fellowships/md-nazim-uzzaman']}",9a836aa8-60c7-4911-943e-477b0ae8bbb8,https://web.www.healthdatagateway.org/dataset/9a836aa8-60c7-4911-943e-477b0ae8bbb8,"{'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'format': ['text'], 'vocabularyEncodingScheme': ['LOCAL']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['RESPIRE']}, 'access': {'dataController': 'BREATHE', 'dataProcessor': 'NOT APPLICABLE', 'accessRights': ['https://www.ed.ac.uk/usher/respire/contact-us'], 'jurisdiction': ['GB-ENG', 'GB-SCT', 'GB-WLS'], 'accessService': 'Access service varies on a project-by-project basis. Contact the RESPIRE team for further in formation', 'deliveryLeadTime': 'VARIABLE'}}","{'temporal': {'distributionReleaseDate': '2020-04-30', 'timeLag': 'NOT APPLICABLE', 'startDate': '2019-05-01', 'accrualPeriodicity': 'STATIC', 'endDate': '2020-04-30'}, 'origin': {'purpose': ['STUDY'], 'collectionSituation': ['COMMUNITY']}}",2021-04-09T15:30:19Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '1', 'observationDate': '30/04/2020', 'measuredProperty': 'Count'}]",1.0.0,,2021-08-11T08:25:03Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
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"{'title': 'Neovascular age related macular degeneration at University Hospitals Birmingham', 'contactPoint': 'enquiries@insight.hdrhub.org', 'publisher': {'identifier': '5f8437a3b7dec2a83e8cceba', 'memberOf': 'HUB', 'name': 'INSIGHT'}, 'abstract': 'The University Hospitals Birmingham (UHB)\xa0\xa0Age-related Macular Degeneration (AMD) dataset is a longitudinal dataset consisting of routinely collected clinical metadata from patients receiving treatment for AMD at UHB, from 2007 to the present.\xa0', 'keywords': ['Age-Related Macular Degeneration', 'Choroidal Neovascularization', 'Choroidal Neovascular Membrane', 'Occult', 'Classic', 'Exudative Age-Related Macular Degeneration', 'Geographic Atrophy', 'Drusen', 'Neovascular Age Related Macular Degeneration', 'Dry', 'Wet', 'Intravitreal Anti-Vegf Injections', 'Subretinal Fibrosis', 'Disciform Scar', 'Sub-Rpe Neovascularization', 'Lucentis', 'Ranibizumab', 'Eylea', 'Aflibercept', 'Etdrs', 'Haemorrhage', 'macula', 'Retina', 'Retinal Angiomatous Proliferation', 'Referral', 'Vision', 'Visual Acuity', 'Visual Distortion', 'Metamorphopsia', 'Micropsia', 'Scotoma', 'Sight Loss', 'Sight Impairment', 'Antioxidant Supplementation', 'Mineral Supplementation', 'Verteporfin Photodynamic Therapy', 'Laser', 'Avastin']}",89c2c798-2e0f-4235-9cd9-e2347f2dfc50,"{'typicalAgeRange': '50-110', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/11591953/west-midlands.html'], 'pathway': 'The UHB AMD dataset is representative of the patient pathway for diagnosis and treatment of wet AMD, and longitudinal follow-up.', 'followup': '> 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '9b356432-2650-4ded-aa75-657871b38fe3'},"{'description': 'Background:\nAge-related macular degeneration (AMD) is a degenerative disease of the human retina affecting individuals over the age of 55 years. AMD is the leading cause of blindness in industrialized countries. Worldwide, the number of people with AMD is predicted to increase from 196 million in 2020 to 288 million by 2040.  \n\nThe UHB AMD Dataset is a longitudinal dataset consisting of routinely collected imaging and clinical metadata from patients receiving treatment for age-related macular degeneration (AMD) at UHB, from 2007 to the present. \n\nThis dataset encompasses all patients at UHB who have received at least one injection of either Lucentis (ranibizumab) or Eylea (aflibercept) or avastin. This dataset will include data from both eyes in each case - for example, it will include data from fellow eyes that are not receiving injections. For these reasons, the dataset will include longitudinal data from a mixture of eyes with both “dry” and “wet” AMD. Clinical metadata includes demographic information, visual acuities (predominantly measured with Early Treatment Diabetic Retinopathy Study (ETDRS) charts), treatment, and outcomes.\n\nThis dataset is continuously updating, however, as of October 2021, it consisted of 15063 eyes receiving treatment for AMD. This is a large single centre database from patients with AMD and covers more than a decade of follow-up for these patients.\n\nGeography\nThe Queen Elizabeth Hospital is one of the largest single-site hospitals in the United Kingdom, with 1,215 inpatient beds.   Queen Elizabeth Hospital is part of one of the largest teaching trusts in England (University Hospitals Birmingham).  Set within the West Midlands and it has a catchment population of circa 5.9million.  The region includes a diverse ethnic, and socio-economic mix, with a higher than UK average of minority ethnic groups. It has a large number of elderly residents but is the youngest population in the UK. There are particularly high rates of diabetes, physical inactivity, obesity, and smoking.\n\nData source:  Ophthalmology department at Queen Elizabeth Hospital, University Hospitals Birmingham NHS Foundation Trust, Birmingham, United Kingdom.', 'associatedMedia': ['https://www.insight.hdrhub.org/about-us'], 'isPartOf': 'NOT APPLICABLE'}",9b356432-2650-4ded-aa75-657871b38fe3,https://web.www.healthdatagateway.org/dataset/9b356432-2650-4ded-aa75-657871b38fe3,"{'access': {'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'jurisdiction': ['GB-ENG', 'GB-GB', 'AF'], 'dataProcessor': 'NOT APPLICABLE', 'accessRights': ['https://www.insight.hdrhub.org/'], 'accessService': 'INSIGHT adheres to HDRUK data access principles including the five SAFES; anonymised data is provided into an agreed Trusted Research Environment such as the PIONEER Microsoft Azure TRE at University Hospitals Birmingham NHSFT or equivalent external safe environment, under data license.', 'accessRequestCost': ['https://www.insight.hdrhub.org/'], 'deliveryLeadTime': '2-6 MONTHS'}, 'formatAndStandards': {'language': ['en'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['NHS NATIONAL CODES'], 'format': ['SQL', 'CSV']}, 'usage': {'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS'], 'resourceCreator': ['University Hospitals Birmingham NHS Foundation Trust'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'isReferencedBy': ['Not Available']}}","{'origin': {'purpose': ['CARE'], 'collectionSituation': ['CLINIC', 'OUTPATIENTS', 'IN-PATIENTS'], 'source': ['EPR']}, 'temporal': {'startDate': '2007-06-01', 'accrualPeriodicity': 'ANNUAL', 'distributionReleaseDate': '2021-10-01', 'endDate': '2021-09-30', 'timeLag': '2-4 WEEKS'}}",2021-10-22T14:34:00Z,"[{'observedNode': 'EVENTS', 'measuredValue': '1361', 'disambiguatingDescription': '1361 patient\n15063 eyes receiving treatment \n', 'observationDate': '01/10/2021', 'measuredProperty': 'Count'}]",1.0.0,"{'qualifiedRelation': ['None'], 'derivation': ['Not Available']}",2021-10-22T14:34:00Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 5, 'structuralMetadata.tableName': 5, 'structuralMetadata.tableDescription': 5, 'structuralMetadata.dataElementsCount': 31, 'structuralMetadata.columnName': 31, 'structuralMetadata.columnDescription': 31, 'structuralMetadata.dataType': 31, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '5917f44d-8454-4ab3-a50c-e8b6bf0db290', 'description': 'This table contains the ocular surgery data', 'name': 'operation_procedure', 'dataElementsCount': 6, 'dataElements': '6c1ccce6-dec7-48cd-afef-84749fd12d42, 5abc137b-1d97-469a-9c40-13564d8d2b64, 55e16a4c-3e36-4760-8d0d-05527128ea53, 46b7815c-9582-4eff-82e1-fdc1621bf43b, cc53483c-37b2-4fe2-8cb3-d3746ccaf01f, 8243dd8b-f5f2-4008-9763-cf39b4415d1b'}, {'id': '6e7e9fc9-42ec-4998-9958-863652e430b5', 'description': 'This table contains the injection data', 'name': 'injections', 'dataElementsCount': 7, 'dataElements': '304859dc-39dc-48c6-8579-ebcfb7429a78, 80387ed3-2bca-4eab-ac5b-16a02d84bc47, 91eb85e6-12ff-48d8-b3d8-ba537e4563bc, f74edcfb-b254-4df3-8976-ad16c3ca347f, cabf79e8-2253-4d0b-aa36-4197960310f7, f971a454-d8c1-4575-82e1-453583d389d7, 028a5293-f77f-4f3f-8464-473d21db266d'}, {'id': '171fd314-190b-4003-b706-1362696f03d2', 'description': 'This table contains the OCT reading data', 'name': 'oct_readings', 'dataElementsCount': 5, 'dataElements': '6792fe54-f545-4985-8d93-f6f8c24bc602, fa07f885-8cc1-455f-b1e0-5021ff07d430, 09cbf038-7ffc-48b6-9d7d-a990313d6272, 88990602-058f-4611-9c02-bbbeb0707d67, 9fd2d740-00b5-4598-94a9-bd577b9ed6e9'}, {'id': 'cc809a08-5ae4-48e9-8b12-2cdd446f06b1', 'description': 'This table contains the demographic data', 'name': 'demographic', 'dataElementsCount': 6, 'dataElements': '76298861-70a4-47af-8e77-acb828f15189, 963ef23c-f23d-4397-9c0c-585ecb74d4aa, 9a339437-25b8-4e95-ad8f-dc69c955ae42, d4b45738-b329-458f-b704-24bd40930a4e, f1b0402e-f4fe-492d-bce1-9468edcc5708, 06bdcafe-f6d1-4513-a25f-de11222b06e6'}, {'id': 'f349ca0e-2056-4c6b-898f-038d2d998c58', 'description': 'This table contains the visual acuity data', 'name': 'visual_acuity', 'dataElementsCount': 7, 'dataElements': '123b5348-12bf-4d12-acd8-2dba502a54e6, 28748e3c-16b9-4852-82b9-3c62a755d8a8, ed20c04e-c6e6-4575-9056-2fa90bbc546f, abf95881-02a0-4a5e-bb61-1dd52f2c0089, 5585ceca-5c01-440d-b973-1dc8d581c047, d0a10dfa-810d-423f-bd64-459cb4a3b377, a95b9c8a-6b6b-47dc-a812-84bf148e4dec'}]}"
"{'title': 'National Cardiac Audit Programme - National Congenital Heart Disease Audit (NCHDA)', 'publisher': {'contactPoint': 'DataSharing@hqip.org.uk', 'name': 'HQIP', 'memberOf': 'ALLIANCE'}, 'keywords': ['Cardiac', 'Paediatric', 'Congenital', 'Heart', 'Disease', 'NCAP', 'Audit'], 'contactPoint': 'DataSharing@hqip.org.uk', 'abstract': 'The National Congenital Heart Disease Audit (NCHDA) dataset includes data from all centres undertaking paediatric and congenital cardiac surgery and interventional procedures, in the United Kingdom and Republic of Ireland.'}",2b640175-725a-465f-9aec-6794e6d27791,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '1571516a-5017-43f1-8cb9-80ffa11e6bb0', '3.0.0': '9b7d2306-35e2-44a3-a97d-0b0e03a15336', '1.0.0': '757841d4-9b7a-4d77-bfe2-5e9bd1d4ae72', '2.0.0': '46e4c3ba-dae2-453d-832a-88ea603110f1', 'latest': '9b7d2306-35e2-44a3-a97d-0b0e03a15336'}","{'description': 'The National Congenital Heart Disease Audit (NCHDA) dataset includes continuously ascertained record-level data from all centres undertaking paediatric and congenital cardiac surgery and interventional procedures, including electrophysiology, in the United Kingdom and Republic of Ireland (RoI). The dataset includes activity and outcomes including mortality and post-procedural complications, as well as information relating to antenatal diagnostic screening.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",9b7d2306-35e2-44a3-a97d-0b0e03a15336,https://web.www.healthdatagateway.org/dataset/9b7d2306-35e2-44a3-a97d-0b0e03a15336,"{'access': {'jurisdiction': 'GB-GBN', 'deliveryLeadTime': 'OTHER', 'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data\nhttps://www.nicor.org.uk/for-researchers/data-sharing-application-process/'}, 'formatAndStandards': {'language': ['en']}}",,2020-01-13T14:54:28Z,,3.0.0,,2021-04-14T08:12:38Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'PHM and Cancer Outcomes in the WYH Cancer Alliance', 'publisher': {'contactPoint': 'datacan@uclpartners.com', 'memberOf': 'HUB', 'name': 'DATA-CAN'}, 'abstract': 'The purpose of this data set is to enable the sharing of de-identified patient data, for the Population Health Management and Cancer Outcomes in the West Yorkshire and Harrogate Cancer Alliance (WY&H CA).', 'contactPoint': 'datacan@uclpartners.com', 'keywords': ['Cancer Outcomes', 'Population Health Management', 'Cancer Alliance'], 'doiName': 'In progress'}",bc839e9c-e303-4c3c-9c2c-9975602376e2,"{'pathway': 'Cancer Clinical Pathway: including cancer waiting times data (CWT), cancer outcomes and services dataset (COSD) and the Systemic Anticancer Treatment dataset (SACT) submissions and Radio Therapy (RT) Care by provider.', 'typicalAgeRange': '0-150', 'followup': '> 10 YEARS', 'spatial': 'West Yorkshire and Harrogate ICS', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '9bfba8a4-43c3-4356-93a5-3eb3b7bc247a'},"{'description': 'Improving cancer outcomes are an explicit priority for the WH&H CA.  The high-level outcomes of one-year survival, emergency presentation, stage at diagnosis, and patient experience have been endorsed by the alliance board and the system leadership of the Health and Care Partnership (ICS). The aims are to use data on outcomes to drive policy, service development and improvement and the use of granular data by tumour site to understand the impact of clinical decisions on patient outcomes and actively engage with clinicians through the Optimum Pathway Groups.\n\nThe Yorkshire and Humber LHCRE has developed and funded a secure, cloud-based environment to support the analysis of clinical data from across the region.  The LHCRE has prioritised cancer as one of its two key domains with a specific focus on population health analyses that can support the development and delivery of improved pathway of care. This capability will be used to develop a real time analysis of cancer data and its outcomes. \n\nThe work will be carried out in partnership with the NHS to ensure that the products of this capability links directly with the ability to influence decisions on resources used in WY&H CA to improve cancer outcomes.\n\nThe inputs required for this are the real-time (?7 days) data on cancer waiting times data (CWT), cancer outcomes and services dataset (COSD) and the Systemic Anticancer Treatment dataset (SACT) submissions and Radio Therapy (RT) Care by provider. These datasets are already captured by hospitals across the region and hence no new data collection is proposed at this time. These datasets will continue to be submitted to support national analyses supporting audit and registration. \n\nThe outputs will be developed as a suite of dashboards which will allow each provider and the alliance as a whole to monitor trends and changes in CWT, emergency presentation and stage at diagnosis by cancer type, and a rolling 3 and 12-month survival analysis.\n\nThe data will be handled within the Google Cloud Platform (GCP) in the following containers that are located in data centres in London, UK:', 'associatedMedia': ['https://canceralliance.wyhpartnership.co.uk/'], 'isPartOf': 'Cancer Outcomes and Services Dataset (COSD)'}",9bfba8a4-43c3-4356-93a5-3eb3b7bc247a,https://web.www.healthdatagateway.org/dataset/9bfba8a4-43c3-4356-93a5-3eb3b7bc247a,"{'formatAndStandards': {'vocabularyEncodingScheme': ['OPCS4', 'SNOMED CT', 'ICD10'], 'conformsTo': 'HL7 FHIR', 'language': 'en', 'format': ['text/csv', 'text/xml']}, 'access': {'dataController': 'West Yorkshire Cancer Alliance', 'accessRights': ['https://canceralliance.wyhpartnership.co.uk/', 'http://www.yhcr.org'], 'accessService': 'The outputs will be developed as a suite of dashboards which will allow each provider and the alliance as a whole to monitor trends and changes in CWT, emergency presentation and stage at diagnosis by cancer type, and a rolling 3 and 12-month survival analysis. The data will be handled within the Google Cloud Platform (GCP) in the following containers that are located in data centres in London, UK. 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"{'title': 'Domiciliary Social Care Worker (DSCW)', 'abstract': 'Domiciliary care workers provide care and support for individuals in their own homes. Workers provide a wide range of support from preventative services, reablement, support for independent living, support with social activities, etc, and end of life care', 'publisher': {'identifier': '5f3f98068af2ef61552e1d75', 'memberOf': 'ALLIANCE', 'name': 'SAIL'}, 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'keywords': ['SAIL', 'care', 'social care', 'care worker', 'core-res']}",0e38bbf4-c788-4a1a-9af8-a24821250154,"{'typicalAgeRange': '17-100', 'pathway': 'All pathways about social care', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2634895/wales.html'], 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '9c2356fe-409f-4a34-9fbf-663d2add3902'},"{'description': 'Domiciliary care workers provide care and support for individuals in their own homes. Workers provide a wide range of support from preventative services, reablement, support for independent living, support with social activities, education and employment, practical assistance with personal care and domestic tasks to end of life care. Workers may work in specialist services or with individuals with particular needs.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/'], 'isPartOf': 'NOT APPLICABLE'}",9c2356fe-409f-4a34-9fbf-663d2add3902,https://web.www.healthdatagateway.org/dataset/9c2356fe-409f-4a34-9fbf-663d2add3902,"{'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'resourceCreator': ['Social Care Wales'], 'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS'], 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/']}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'format': ['SQL database table'], 'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL']}, 'access': {'accessRights': ['https://saildatabank.com/application-process/'], 'dataController': 'Social Care Wales', 'jurisdiction': ['GB-WLS'], 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'dataProcessor': 'SAIL Databank', 'deliveryLeadTime': '2-6 MONTHS', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.'}}","{'origin': {'purpose': ['ADMINISTRATIVE', 'OTHER'], 'source': ['ELECTRONIC SURVEY'], 'collectionSituation': ['COMMUNITY', 'HOME', 'OTHER']}, 'temporal': {'startDate': '2004-09-01', 'accrualPeriodicity': 'IRREGULAR', 'timeLag': '2-6 MONTHS'}}",2021-09-13T14:33:22Z,"[{'observedNode': 'EVENTS', 'measuredValue': '3000000', 'disambiguatingDescription': 'Approx 70-80% coverage of Welsh population through GP registrations.', 'observationDate': '01/09/2021', 'measuredProperty': 'Count'}]",1.0.0,"{'qualifiedRelation': ['Yes. To any SAIL dataset & reference data.'], 'derivation': ['Not Available'], 'tools': ['https://conceptlibrary.saildatabank.com/']}",2021-09-13T14:33:22Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 2, 'structuralMetadata.tableName': 2, 'structuralMetadata.tableDescription': 2, 'structuralMetadata.dataElementsCount': 27, 'structuralMetadata.columnName': 27, 'structuralMetadata.columnDescription': 27, 'structuralMetadata.dataType': 27, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'c905a03d-7988-4962-b4b3-1d2ba4ea4339', 'description': '(blank)', 'name': 'DOMICILLARY_CARE_WORKFORCE_20201218', 'dataElementsCount': 13, 'dataElements': '0029c6f5-a47b-41a2-ae17-0eb39c9c90d1, 1322ab21-c566-4872-9264-290e82b1b71d, 5f947bfc-f3ca-4b1b-8050-e10fefdcefff, 0c4ef457-c64b-4909-914e-079d253a5196, 05aeaf20-5f80-4275-a421-c7e8df281830, e612e8d7-8eba-4d3c-ac62-20ec9f8c0859, 62b1968f-79dd-4d03-b6fb-d6c9dfbe023f, b6a59a07-cef3-4da3-b9b9-90a89034b28d, dc5820bc-c25a-444a-80d8-67a3886c3e51, 631e787e-1d1d-416a-a9ae-f9c1b069c4e4, 9b97376d-7aaa-4dfc-96e8-249e988013ef, e5b91ce3-71a5-4ce3-8742-b4db7da5fdde, 39a295e7-f40e-41a9-b3b4-a29b36bfafeb'}, {'id': '175e0ebf-58b7-4426-b765-2a6e77451696', 'description': '(blank)', 'name': 'DOMICILLARY_CARE_WORKFORCE_ALF_20201218', 'dataElementsCount': 14, 'dataElements': '27f628df-3ae1-47ed-b9ef-468dbc618188, 79f53ada-a729-4644-aceb-9dd583fde501, 1c6fdee0-8767-421a-9c58-9c51ffa8cb4f, 997bbf01-b5ff-490f-9cb9-e667c7f10a22, 16a77bfe-0c40-4b7b-bbdc-088198c2acb8, 217dea52-c1dd-4e8f-8254-709ed9dfd8c7, a254d60a-e656-4491-b716-cba327ec0402, 9b78e1c8-6e3a-482c-8a65-e2953c528c77, 84f9f2a5-93d9-475e-95ed-9a37ce618e14, f9771cc8-d74a-4f2d-9069-a45193631790, ccfbd1ab-9f4a-4ed5-b998-8799b8d31b41, 891084c0-21d8-4881-9175-d3d6e58054d8, b03c0185-be34-48fc-bea1-fa73144add24, fd70b2ef-368b-4925-b8ff-369b58fb0aec'}]}"
"{'title': 'Optimum Patient Care Research Database (OPCRD)', 'keywords': ['Primary Care', 'COPD', 'Asthma'], 'contactPoint': 'info@optimumpatientcare.org', 'publisher': {'name': 'OPTIMUM PATIENT CARE', 'identifier': '60c08fa84401b6d377682068', 'memberOf': 'OTHER'}, 'abstract': 'The Optimum Patient Care Research Database (OPCRD) is a database holding UK-sourced clinical data from more than 800 practices and contains deidentified primary care records of over 12 million patients.'}",ac755244-4143-4629-9170-a9e8fc98bb1e,"{'followup': '> 10 YEARS', 'pathway': 'The dataset contains primary care data and can be linked to secondary/inpatient care data.', 'spatial': 'https://www.geonames.org/2648147/great-britain.html', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '9c31bd50-e999-4d4d-bb9d-545c00fcf23e'},"{'description': 'About OPCRD\n\nOptimum Patient Care Research Database (OPCRD) is a real-world, longitudinal, research database that provides anonymised data to support scientific, medical, public health and exploratory research. OPCRD is established, funded and maintained by Optimum Patient Care Limited (OPC) – which is a not-for-profit social enterprise that has been providing quality improvement programmes and research support services to general practices across the UK since 2005.\n\nKey Features of OPCRD\n\nOPCRD has been purposefully designed to facilitate real-world data collection and address the growing demand for observational and pragmatic medical research, both in the UK and internationally. Data held in OPCRD is representative of routine clinical care and thus enables the study of ‘real-world’ effectiveness and health care utilisation patterns for chronic health conditions.\n\nOPCRD unique qualities which set it apart from other research data resources:\n•\tDe-identified electronic medical records of more than 12 million patients\n•\tOPCRD covers all major UK primary care clinical systems\n•\tOPCRD covers approximately 15% of the UK population\n•\tOne of the biggest primary care research networks in the world, with over 800 practices\n•\tLinked patient reported outcomes for over 70,000 patients including Covid-19 patient reported data\n•\tLinkage to secondary care data sources including Hospital Episode Statistics (HES)\n\nData Available in OPCRD\n\nOPCRD has received data contributions from over 800 practices and currently holds de-identified research ready data for over 12 million patients or data subjects. This includes longitudinal primary care patient data and any data relevant to the management of patients in primary care, and thus covers all conditions. The data is derived from both electronic health records (EHR) data and patient reported data from patient questionnaires delivered as part of quality improvement. OPCRD currently holds over 70,000 patient reported questionnaire data on Covid-19, asthma and COPD. \n\nApprovals and Governance\n\nOPCRD has NHS research ethics committee (REC) approval to provide anonymised data for scientific and medical research since 2010, with its most recent approval in 2020 (NHS HRA REC ref: 20/EM/0148). OPCRD is governed by the Anonymised Data Ethics and Protocols Transparency committee (ADEPT). All research conducted using anonymised data from OPCRD must gain prior approval from ADEPT. Proceeds from OPCRD data access fees and detailed feasibility assessments are re-invested into OPC services for the continued free provision of patient quality improvement programmes for contributing practices and patients.\n\nFor more information on OPCRD please visit: https://opcrd.co.uk/', 'associatedMedia': ['https://opcrd.co.uk/'], 'isPartOf': 'NOT APPLICABLE'}",9c31bd50-e999-4d4d-bb9d-545c00fcf23e,https://web.www.healthdatagateway.org/dataset/9c31bd50-e999-4d4d-bb9d-545c00fcf23e,"{'formatAndStandards': {'format': ['application/sql', 'text/csv'], 'language': ['en'], 'vocabularyEncodingScheme': ['READ', 'SNOMED CT', 'SNOMED RT'], 'conformsTo': ['LOCAL', 'OMOP']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['Optimum Patient Care (OPC)'], 'investigations': ['https://opcrd.co.uk/publications/#1610092607769-6a697f2a-d802', '', ''], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'PUBLICATION REQUIRED', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'isReferencedBy': ['-']}, 'access': {'accessRequestCost': ['https://opcrd.co.uk/licence-fees/'], 'jurisdiction': ['GB-ENG', 'GB-SCT', 'GB-WLS', 'GB-NIR'], 'accessRights': ['https://opcrd.co.uk/our-database/data-requests/'], 'dataProcessor': '-', 'dataController': 'Optimum Patient Care UK', 'accessService': 'To submit your application for data from OPCRD, please email datarequest@optimumpatientcare.org with your request.\n\nPlease include:\n\nThe organisation requesting data\n\nResearcher contact point\n\nData analysis deadline\n\nThe funding source\n\nADEPT Approval/Protocol Number – If Available\n\nENCEPP Registration Number – If Available\n\nAll licensed data will be accessible through a secure VPN connection to a client-dedicated SQL database server.', 'deliveryLeadTime': '2-4 WEEKS'}}","{'temporal': {'distributionReleaseDate': '2021-07-01', 'startDate': '2008-02-13', 'timeLag': '1-2 MONTHS', 'accrualPeriodicity': 'MONTHLY'}, 'origin': {'collectionSituation': ['PRIMARY CARE'], 'source': ['EPR', 'ELECTRONIC SURVEY'], 'purpose': ['STUDY', 'TRIAL', 'CARE']}}",2021-09-09T12:52:56Z,"[{'observedNode': 'PERSONS', 'observationDate': '02/07/2021', 'measuredProperty': 'Count', 'measuredValue': '12332510', 'disambiguatingDescription': 'The total number of patient records in the dataset.'}]",2.0.0,"{'derivation': ['NA'], 'tools': [''], 'qualifiedRelation': ['NA']}",2021-09-09T12:52:57Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 15, 'structuralMetadata.tableName': 15, 'structuralMetadata.tableDescription': 15, 'structuralMetadata.dataElementsCount': 146, 'structuralMetadata.columnName': 146, 'structuralMetadata.columnDescription': 146, 'structuralMetadata.dataType': 146, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '4fe8a3af-6ca6-4445-8c0e-268ba2f589ff', 'description': 'This table contains a lists of CCGs', 'name': 'd_ccg', 'dataElementsCount': 12, 'dataElements': '3ef55151-d380-48a4-b3cc-2e55dd46cf79, 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Each dose is linked to its corresponding medication in the therapy tables through the dose ID. This field is built manually by researchers and analysts interpreting the [text_dose] string. The interpretation is approximate and should be used with caution.', 'name': 'd_dosage_v2', 'dataElementsCount': 14, 'dataElements': '67cee996-00f1-43a8-bce6-04bbcf3247df, 4cb2c8a3-7342-4c08-a06f-6bbce8d6ee64, fb9f5c25-7d0e-473c-af10-667506a96bb1, 3e7449c5-e9bb-438e-b798-1b628adb4013, ee157248-1194-4da2-8b22-854eb5dd2547, 577720a9-1bb1-4db0-9b06-3998fe35d86e, e5d07a16-09f5-4f09-9bcb-457ae446a3a9, 4a1c29b2-756e-4d52-9c1d-bebea545f0d5, a341d8b5-ebcb-40c1-abdd-834640b0f06f, 6c02c5c9-f5ab-426f-b986-1597f673187a, 095bdc83-5000-43d8-9904-b5ce48707996, b59cd16d-4ecd-48b8-b67b-32c372c06f83, 164ea8f3-3bfc-4dbb-a065-6eb72ec12192, af85b1bf-5574-4702-aaa1-4a269e5c86fd'}, {'id': 'dfd9b55c-2edd-423e-a211-483a99c85aef', 'description': 'This table contains details on the medical practices recorded within the data, such as practice name, address and contact for the practices in the system.', 'name': 'd_practice', 'dataElementsCount': 11, 'dataElements': 'b14699cf-f46a-47a6-83ca-614a2dd548bc, 899eb741-5aa7-4ac4-a624-7b9c4596be49, ce6cd5a8-dbb7-46a2-a2a5-cc6943a019b8, c0c8994f-1176-48f4-911d-d5a70e1b0840, 35e4a4a7-c2bf-442a-a586-3a2b5180a5f1, 79a34da8-6f14-433f-b21a-88051f854df0, 6c04fcb1-2171-4649-bf1f-e2e3d7cc33da, 98ad3dd9-10c7-4076-99b4-7bac1087cf5a, 2d7ef10d-9a26-4317-a2a1-0e7196b6081e, eaca2f44-f5d2-40a1-b7bd-b700dfbe091b, 85cb2bda-e1c6-4fc6-ab3d-80be7d6291ed'}, {'id': 'e439cda9-42e3-4771-b95d-3c3f4cae5c24', 'description': 'This table contains details of all prescriptions (dispensed or not) and treatments issued in the GP system.', 'name': 'f_referral', 'dataElementsCount': 8, 'dataElements': 'eb0ae4d7-73ea-45e1-b16c-cc21d7d189ef, 8e6bea53-2ecd-4df6-9826-0f804efae956, 3dad8c64-1ca7-47c5-9137-b43492d55097, afed5d56-0acb-4d98-b357-7df233e68adc, 3460cd64-ad4a-4e22-899e-bbc9b1f306b2, 585bb385-2130-41d8-9dac-9a8ddeb55f9f, d16d67c2-8aea-4659-b131-33218a41e3f3, 8fcd10ea-fb0d-4c5d-ad78-9dc9efa98475'}, {'id': 'a71b07b9-bd38-4de3-aeff-f8e30a1c6472', 'description': 'This table contains the questions presented in various OPC questionnaires.', 'name': 'q_questions', 'dataElementsCount': 7, 'dataElements': 'b3dc1167-8713-4284-bc75-1eebbbb3d223, 4b8f3d20-1b0a-4bfb-a91d-f5e593b99310, c34473d2-496a-4475-bd02-714012f6ed75, 45783f71-742e-47e5-a5d5-53c82a279745, a5a67da3-3cc1-4c1f-85c5-443cdae6dfc4, a2f5cc6b-8c71-4603-b8c7-401a0bc35627, 4a1167a1-cb39-4145-8939-1858d23f7315'}, {'id': 'df51ae94-3a76-4267-8a0e-6995ad61ca7b', 'description': 'This table contains codes developed for legacy questionnaire responses.', 'name': 'f_quest_legacy_codes', 'dataElementsCount': 3, 'dataElements': 'e026c4ea-d053-49f5-adfe-54e8b5949d4d, ac34fb4e-1a69-4fc3-badf-6e2a99081413, 0427b4f7-e154-48ba-877c-5a3aa84b74df'}, {'id': '79ef4a97-5c2c-4e63-827f-c29894b79b61', 'description': 'This table contains an entry for each questionnaire completed by a patient.', 'name': 'q_questionnaires', 'dataElementsCount': 9, 'dataElements': 'a4e1a0dc-b422-43af-abb4-ab5ebc5aee0e, 08247f3e-394f-4057-a3f6-9f6e664884f7, 3052c2df-11aa-4f44-94a6-34273afb2f8d, 64082b3f-e1d3-401b-b539-283547093b15, b8cd1ad4-7878-49d8-b91b-cc3648985887, 6774268a-d556-4e82-9442-d38a2b9c42e5, c4b04d8b-b51a-4249-9e38-bcc0f053a420, 8349f00b-d052-4eaa-a46f-c0af74931f62, d26ed521-98c0-41cc-ac8f-bf6485c0b932'}]}"
"{'title': 'Extended Cohort for E-health, Environment and DNA (EXCEED)', 'doiName': 'In Progress', 'abstract': 'EXCEED is a longitudinal population-based cohort which facilitates investigation of genetic, environmental and lifestyle-related determinants of a broad range of diseases and of multiple morbidity.', 'publisher': {'name': 'BREATHE', 'memberOf': 'HUB', 'contactPoint': 'breathe.saildatabank@swansea.ac.uk'}, 'keywords': ['Genetic', 'Electronic', 'Lifestyle', 'Environment', 'Cohort', 'Population', 'EXCEED', 'BREATHE'], 'contactPoint': 'exceed@leicester.ac.uk'}",e22ddf52-7f9e-4072-ae61-cb722461b37d,"{'spatial': 'Midlands, UK', 'followup': '> 10 YEARS', 'pathway': 'The population includes only covers adults (over 18) who live within certain areas: Midlands, UK. Data is survey data, clinic assessments, and linkable to primary and secondary care.', 'typicalAgeRange': '18-70', 'physicalSampleAvailability': ['SALIVA', 'WHOLE BLOOD']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'3.0.0': '3ee52adc-b97e-4f7b-a251-a1c9841a380c', '4.0.0': '9ca6e8d2-98d2-4757-84e1-287585400e55', '0.0.1': '473583cf-b161-4c4f-b299-80907ebbb712', '1.0.0': 'e7a6c557-e285-4c3f-b621-3d6bb2324d9f', '2.0.0': '7efadcc6-2a28-48c7-8934-5859c56c7231', 'latest': '9ca6e8d2-98d2-4757-84e1-287585400e55'}","{'description': 'https://exceed.org.uk/\n\nEXCEED has been described in a cohort profile paper accessible here: https://academic.oup.com/ije/article/48/3/678/5485771\n \nEXCEED is a longitudinal population-based cohort which facilitates investigation of genetic, environmental and lifestyle-related determinants of a broad range of diseases and of multiple morbidity through data collected at baseline and via electronic healthcare record linkage. Recruitment has taken place in Leicester, Leicestershire and Rutland since 2013 and is ongoing, with >10,650 participants aged 30-69 to date. The population of Leicester is diverse and additional recruitment from the local South Asian community is ongoing. Participants provided a DNA sample, have consented to follow-up for up to 25 years through electronic health records and additional bespoke data collection is planned. Data available includes baseline demographics, anthropometry, spirometry, lifestyle factors (smoking and alcohol use) and longitudinal health information from primary care records, with additional linkage to other EHR datasets planned. Patients have consented to be contacted for recall-by-genotype and recall-by-phenotype sub-studies. Genome-wide genotype data are available via EGA for 5218 individuals.', 'associatedMedia': ['https://www.exceed.org.uk/pis/', 'https://www.exceed.org.uk/privacy/'], 'isPartOf': 'NOT APPLICABLE'}",9ca6e8d2-98d2-4757-84e1-287585400e55,https://web.www.healthdatagateway.org/dataset/9ca6e8d2-98d2-4757-84e1-287585400e55,"{'access': {'dataProcessor': 'BREATHE', 'deliveryLeadTime': '2-4 WEEKS', 'accessRights': ['https://saildatabank.com/application-process/', 'https://exceed.org.uk/research/'], 'dataController': 'BREATHE', 'jurisdiction': 'GB', 'accessRequestCost': 'Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements', 'accessService': 'SAIL Databank - https://saildatabank.com/'}, 'usage': {'resourceCreator': 'EXCEED', 'dataUseLimitation': 'RESEARCH SPECIFIC RESTRICTIONS', 'dataUseRequirements': 'PROJECT SPECIFIC RESTRICTIONS', 'investigations': ['https://doi.org/10.1038/s41588-018-0321-7', 'https://doi.org/10.1136/thoraxjnl-2019-213485', 'https://doi.org/10.1038/s41467-018-03109-y'], 'isReferencedBy': ['Catherine John, Nicola F Reeve, Robert C Free, Alexander T Williams, Ioanna Ntalla, Aliki-Eleni Farmaki, Jane Bethea, Linda M Barton, Nick Shrine, Chiara Batini, Richard Packer, Sarah Terry, Beverley Hargadon, Qingning Wang, Carl A Melbourne, Emma L Adams, Catherine E Bee, Kyla Harrington, José Miola, Nigel J Brunskill, Christopher E Brightling, Julian Barwell, Susan E Wallace, Ron Hsu, David J Shepherd, Edward J Hollox, Louise V Wain, Martin D Tobin, Cohort Profile: Extended Cohort for E-health, Environment and DNA (EXCEED), International Journal of Epidemiology, Volume 48, Issue 3, June 2019, Pages 678–679j']}, 'formatAndStandards': {'vocabularyEncodingScheme': 'READ', 'language': 'en', 'format': ['CSV']}}","{'temporal': {'endDate': '2018-08-03', 'distributionReleaseDate': '2019-12-16', 'timeLag': 'NOT APPLICABLE', 'accrualPeriodicity': 'ANNUAL', 'startDate': '1950-01-01'}, 'origin': {'source': ['EPR', 'ELECTRONIC SURVEY'], 'collectionSituation': ['CLINIC', 'PRIMARY CARE', 'ACCIDENT AND EMERGENCY', 'OUTPATIENTS', 'IN-PATIENTS', 'COMMUNITY', 'HOME'], 'purpose': 'STUDY'}}",2020-01-13T15:48:20Z,,4.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-03-03T15:03:51Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 12, 'structuralMetadata.columnName': 12, 'structuralMetadata.columnDescription': 12, 'structuralMetadata.dataType': 12, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '1387f845-1a23-449c-aac2-c9c8e5dfd95e', 'description': 'This table contains demographic data and information about possible diagnoses of both asthma and COPD for the EXCEED cohort.', 'name': 'DEMOGRAPHICS_EXCD', 'dataElementsCount': 12, 'dataElements': '00929c63-26e4-4464-afb3-91c07149cf6b, 05f4bab3-b102-47bd-9a41-771cb53db985, 04e0f805-c746-4bae-9669-e3eaf9d69364, c06debe9-cdfb-435c-9374-6d602718174a, f96781df-6754-42e1-af43-fcc37db0a0a3, df0328d5-d3b2-4ce0-9b27-77deb4f4c90b, 1c387246-b56f-4c3a-8767-a605b99253ac, 49cb4ddb-b0e9-4c66-b49d-fa06bd717603, 0a75a896-18bc-4e63-b5e1-70cae231d48c, d636914f-1005-400d-859b-4f9b576a75b9, aae39e2a-4599-4cb9-9aad-bf04c1dcc61b, 13a8d613-925a-4287-9db4-e47f261970cb'}]}"
"{'title': 'National Survey for Wales Dataset (NSWD)', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'publisher': {'name': 'SAIL', 'memberOf': 'ALLIANCE', 'identifier': '5f3f98068af2ef61552e1d75'}, 'keywords': ['National Survey', 'SAIL', 'core-res'], 'abstract': 'National Survey for Wales questionnaire responses following consent to link. NSWD superceded Welsh Health Survey in 2015.'}",bcca421a-9077-4c47-9daa-b1bc030d3dee,"{'spatial': ['https://www.geonames.org/2634895/wales.html'], 'followup': 'OTHER', 'pathway': 'Not Available', 'typicalAgeRange': '0-15', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '9cb83fb7-e8d7-436b-b847-e4759b9589c5'},"{'description': 'The Welsh Health Survey informs local government, NHS, and nationwide health strategy.\n\nThe Welsh Health Survey (WHS) collects information on the health and health-related lifestyles of people living in Wales. It is a major source of information about the health of people in Wales, the way the NHS is used, and behaviours that can affect health, such as smoking and alcohol consumption.\n\nData for the WHS is collected via face-to-face-interviews and self-completion questionnaires. The sampling unit for the WHS are households, however all adults within households were asked to take part. Families with children under the age of 16 are eligible, however where the household has 3 or more children, up to two children between the ages of 0 and 15 are randomly selected for inclusion in the study. Interviews are used to collect data at the household level, with questionnaires distributed to household members. Information on the household type and employment status of the household reference person are collected, and the interviewer is asked to comment on the condition of the property. Separate self-completion questionnaires are used to collect data for adults and young people (aged 13-15), whilst adults/guardians are required to complete questionnaires on behalf of children younger than 13 years old.\n\nThe WHS data, as provided via the UK Data Archive, is split into two separate datasets, these relating to adults – 16 and older – and children. The WHS can be analysed at both the individual and household level, with appropriate weights being supplied for each. The dataset provides a household identifier which allows for adult-child records to be combined for research exploring ‘household’ health or the links between parental and child health, for example.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/'], 'isPartOf': 'NOT APPLICABLE'}",9cb83fb7-e8d7-436b-b847-e4759b9589c5,https://web.www.healthdatagateway.org/dataset/9cb83fb7-e8d7-436b-b847-e4759b9589c5,"{'usage': {'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'RESEARCH SPECIFIC RESTRICTIONS'], 'resourceCreator': ['[""Welsh Government""]'], 'isReferencedBy': ['Ahern, A., Jones, M. (2017) An Investigation into the use of Health Services in Wales by those who Self–report Disability using Linked Data https://doi.org/10.23889/ijpds.v1i1.159']}, 'formatAndStandards': {'conformsTo': ['OTHER'], 'language': ['en'], 'vocabularyEncodingScheme': ['NHS WALES NATIONAL CODES'], 'format': ['SQL database table']}, 'access': {'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'jurisdiction': ['GB'], 'dataController': 'NHS Wales’ Informatics Service (NWIS)', 'accessRights': ['https://saildatabank.com/application-process/'], 'dataProcessor': 'SAIL Databank', 'deliveryLeadTime': '2-6 MONTHS'}}","{'temporal': {'distributionReleaseDate': '2019-03-31', 'endDate': '2019-03-31', 'startDate': '2015-06-16', 'timeLag': '1-2 MONTHS', 'accrualPeriodicity': 'ANNUAL'}, 'origin': {'purpose': ['STUDY', 'ADMINISTRATIVE'], 'source': ['ELECTRONIC SURVEY', 'OTHER'], 'collectionSituation': ['OTHER']}}",2021-09-13T14:58:18Z,"[{'observedNode': 'EVENTS', 'measuredValue': '3000000', 'observationDate': '01/09/2021', 'measuredProperty': 'Count', 'disambiguatingDescription': 'Approx 70-80% coverage of Welsh population through GP registrations.'}]",5.0.0,"{'qualifiedRelation': ['Yes. To any SAIL dataset & reference data'], 'derivation': ['Not Available'], 'tools': ['https://conceptlibrary.saildatabank.com/']}",2021-09-13T14:58:21Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 4, 'structuralMetadata.tableName': 4, 'structuralMetadata.tableDescription': 4, 'structuralMetadata.dataElementsCount': 2086, 'structuralMetadata.columnName': 2086, 'structuralMetadata.columnDescription': 2086, 'structuralMetadata.dataType': 2086, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '5669a95a-e83f-4470-bf04-dc82082f6fc6', 'description': 'SAIL Person Linkage Table', 'name': 'NSW_2018_19_ALF', 'dataElementsCount': 14, 'dataElements': 'a98eaa55-9d32-408b-8352-a642f7d497c4, dd134077-56de-4036-8705-7b1c577eda2a, e0b7925f-9c23-47fb-81df-2144ddf6f473, 52920fae-2de9-4e46-9218-211f745686ec, adb7e14b-2bcf-4f04-9ace-531401869f60, cf88f633-8391-4eca-9f05-d6f8b891e8dd, 47906e93-e360-4f53-b365-3f5a23e26b37, 42a8f72f-33a5-44fc-86a1-52c9eca8e645, 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"{'title': 'UK Renal Registry - Kidney PREM dataset', 'contactPoint': 'ukrr-research@renalregistry.nhs.uk', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '609bc283781cac1dbab2a385', 'name': 'RENAL ASSOCIATION'}, 'keywords': ['UK Renal Registry', 'kidney failure', 'CKD', 'Chronic kidney disease (disorder)', 'Acute kidney injury', 'AKI', 'Transplant', 'Dialysis', 'PREM', 'Patient reported experience measures', 'End-stage kidney disease', 'Kidney replacement therapy', 'KRT', 'RRT', 'Renal replacement therapy', 'Renal', 'Kidney'], 'abstract': 'Anonymous patient-level data for adults with CKD or an AKI on dialysis who are under the care of NHS hospital renal centres in England, Northern Ireland, Scotland and Wales. The data are collected annually via a national survey.'}",ea068fd4-1a96-4ed5-a010-8930afb968bb,"{'pathway': 'Adults who attend renal units and centres throughout the UK are invited to complete an anonymous annual paper-based or online survey that contains 39 questions relating to their experience of the care received for their kidney disease at their renal unit or centre.', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'https://www.geonames.org/2635167/united-kingdom-of-great-britain-and-northern-ireland.html', 'followup': '0 - 6 MONTHS', 'typicalAgeRange': '18-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '9cc82b97-d508-4cb9-98ca-0105aa897bb6'},"{'description': 'The dataset contains self-reported patient-level data for adults with chronic kidney disease (CKD) or an acute kidney injury (AKI) on dialysis who are under the care of NHS hospital renal centres in England, Northern Ireland, Scotland and Wales. The data are collected annually via a national survey. Kidney PREM data are anonymised and include socio-demographic information and 39 questions measuring patient experience of kidney care. The kidney PREM has been collected since 2016 and in 2019 almost 16,500 people treated at almost all of the UK’s adult renal centres participated. See here for further information: https://renal.org/audit-research/data-permissions/data/ukrr-ckd-patient-measures-dataset/kidney-prem-data', 'isPartOf': 'UK Renal Registry, The Renal Association', 'associatedMedia': ['https://renal.org/audit-research/data-permissions/data/ukrr-ckd-patient-measures-dataset/kidney-prem-data']}",9cc82b97-d508-4cb9-98ca-0105aa897bb6,https://web.www.healthdatagateway.org/dataset/9cc82b97-d508-4cb9-98ca-0105aa897bb6,"{'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'conformsTo': ['LOCAL'], 'format': ['csv or xlsx or sas7bdat']}, 'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'GEOGRAPHICAL RESTRICTIONS', 'NOT FOR PROFIT USE', 'TIME LIMIT ON USE', 'INSTITUTION SPECIFIC RESTRICTIONS', 'USER SPECIFIC RESTRICTION'], 'investigations': ['https://renal.org/audit-research/projects/ukrr'], 'resourceCreator': ['UK Renal Registry, The Renal Association'], 'isReferencedBy': ['https://renal.org/kidney-patient-reported-experience-measure'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}, 'access': {'accessRights': ['https://renal.org/audit-research/how-access-data/ukrr-data/apply-access-ukrr-data'], 'dataController': 'The Renal Association', 'jurisdiction': ['GB-GB'], 'deliveryLeadTime': '2-6 MONTHS', 'accessService': ""Data are released to researchers who have successfully gone through the UKRR's data application process. Prior to any data sharing with successful applicants, a fixed term data sharing agreement (DSA) is drawn up between the Renal Association and the recipient. This specifies the scope of the analyses permitted, the data items to be shared, the frequency of the data sharing, the names of the researchers and the time limit beyond which data must be destroyed."", 'accessRequestCost': ['Charges may apply for new aggregate data and extracts of pseudonymous patient level data. The charges are to recover the costs of managing the application process and preparing extracts of data. The costs depend on the level of service required from the UKRR and whether this is limited to a simple extract of data, or requires additional input such as methodological or statistical support. The UKRR can advise on costs once the expression of interest is received and applicants may also be requested to complete a costing form.']}}","{'origin': {'source': ['ELECTRONIC SURVEY', 'PAPER BASED'], 'purpose': ['CARE', 'DISEASE REGISTRY'], 'collectionSituation': ['CLINIC', 'OUTPATIENTS', 'HOME', 'COMMUNITY']}, 'temporal': {'accrualPeriodicity': 'ANNUAL', 'timeLag': '2-6 MONTHS', 'distributionReleaseDate': '2021-10-01', 'startDate': '2016-01-03'}}",2021-05-26T17:12:03Z,"[{'observedNode': 'PERSONS', 'measuredValue': '60000', 'observationDate': '01/10/2020', 'measuredProperty': 'Count'}]",1.0.0,"{'tools': ['https://renal.org/audit-research/data-permissions/data/ukrr-ckd-patient-measures-dataset/kidney-prem-data'], 'qualifiedRelation': [''], 'derivation': ['Not available']}",2021-06-04T09:23:01Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 46, 'structuralMetadata.columnName': 46, 'structuralMetadata.columnDescription': 46, 'structuralMetadata.dataType': 46, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '1905de34-17a5-448b-9712-1c6d26111f84', 'description': 'Anonymised patient-level data for adults with CKD or an AKI on dialysis who are under the care of NHS hospital renal centres in England, Northern Ireland, Scotland and Wales. 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"{'title': 'IBD NIHR BioResource: Sample holding', 'contactPoint': 'nbr@bioresource.nihr.ac.uk', 'abstract': 'NIHR BioResource samples are held at the NIHR National Biosample Centre in Milton Keynes. Metadata on what is available should become available through the UK CRC Tissue Directory, as mandated by Research Tissue Bank status.', 'publisher': {'memberOf': 'HUB', 'name': 'GUT REACTION', 'contactPoint': 'nbr@bioresource.nihr.ac.uk'}, 'keywords': [""Crohn's"", 'DNA', 'IBD', 'colitis', 'plasma', 'recall', 'samples', 'sera']}",f2af20f9-af84-40ce-8a07-7d095948653e,"{'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM'], 'followup': '1 - 10 YEARS', 'typicalAgeRange': '18-85', 'spatial': 'United Kingdom (https://www.geonames.org/2635167/united-kingdom.html)'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': 'c90e2a78-b57c-480f-938f-88d0ea374b08', '3.0.0': '9d4f445e-f81e-45d7-bd83-7e9f68199b4f', '1.0.0': '9bfcf24b-5b13-4997-9062-6c58583e69cd', '0.0.1': '9769ba9c-f856-4f7d-a324-9a1882d18515', 'latest': '9d4f445e-f81e-45d7-bd83-7e9f68199b4f'}","{'description': 'The NIHR IBD Bioresource comprises ~30k participants with Inflammatory Bowel Disease (IBD), which include the members of the HDR UK IBD Hub. The NIHR BioResource acquires samples at recruitment for each participant recruited. The preferred sample collection is 3 blood tubes – see https://bioresourcesupport.org.uk/live-samples/ - from which DNA can be extracted, and plasma and sera stored. In many clinics, the NIHR BioResource blood draw follows immediately the blood collection for routine healthcare purposes. In the case of children, less blood will be taken, down to 1mL. The Technical Metadata describes the standard used by RD-Connect, the EU-wide Rare Disease biobank consortium - https://samples.rd-connect.eu/menu/main/home. During 2020, this will be replaced by an API from the UK CRC Tissue Directory, as using this discovery tool is a condition of running a Research Tissue Bank in the UK.', 'isPartOf': 'Not Applicable'}",9d4f445e-f81e-45d7-bd83-7e9f68199b4f,https://web.www.healthdatagateway.org/dataset/9d4f445e-f81e-45d7-bd83-7e9f68199b4f,"{'access': {'jurisdiction': 'GB-GBN', 'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)', 'accessRequestCost': 'https://bioresource.nihr.ac.uk/using-our-bioresource/industry-researchers/industry-bioresource-usage-costs/', 'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)', 'deliveryLeadTime': '2-6 MONTHS', 'accessRights': ['https://bioresource.nihr.ac.uk/using-our-bioresource'], 'accessService': 'Some de-identified data may be released to researchers in a platform-independent filetype (e.g. CSV). However, access to any data acquired via NHS Digital is subject to strict restrictions governing where data may be accessed and from which locale - access is currently via an experimental safe haven built in Microsoft Azure.'}, 'usage': {'isReferencedBy': ['Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/'], 'dataUseLimitation': 'RESEARCH USE ONLY', 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'resourceCreator': 'NIHR BioResource. Acknowledgement text: ""We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.""'}, 'formatAndStandards': {'conformsTo': 'LOCAL', 'vocabularyEncodingScheme': 'LOCAL', 'language': 'en', 'format': ['text/csv']}}","{'origin': {'collectionSituation': 'OTHER', 'source': 'LIMS', 'purpose': 'STUDY'}, 'temporal': {'startDate': '2016-01-13', 'accrualPeriodicity': 'QUARTERLY', 'distributionReleaseDate': '2021-03-31', 'timeLag': '1-2 MONTHS'}}",2020-01-13T15:06:28Z,"[{'observedNode': 'Events', 'measuredValue': '94431', 'disambiguatingDescription': 'Sample tubes collected from participants', 'observationDate': '2020-11-26', 'measuredProperty': 'COUNT'}]",3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['ALL', 'COVID-19 SARI-Watch (formerly CHESS)', 'Civil Registration - Deaths', 'Covid-19 Second Generation Surveillance System', 'Emergency Care Data Set (ECDS)', 'Hospital Episode Statistics Accident and Emergency', 'Hospital Episode Statistics Admitted Patient Care', 'Hospital Episode Statistics Critical Care', 'Hospital Episode Statistics Outpatients', 'Intensive Care National Audit & Research Centre (ICNARC) Case Mix Programme (https://www.icnarc.org/Our-Audit/Audits/Cmp/About)']}",2021-02-21T18:57:48Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 18, 'structuralMetadata.columnName': 18, 'structuralMetadata.columnDescription': 18, 'structuralMetadata.dataType': 18, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'c75643e0-b255-4305-a0b0-55853241e897', 'description': 'Sample Manifest', 'name': 'Sample', 'dataElementsCount': 18, 'dataElements': 'a7353e3e-8086-41bc-974d-112b03f8af82, f636a97e-a113-49cf-b27d-84650cfc96ef, 9ce6b1ff-555b-4963-a2e4-522d55b62f10, 2472fda5-feb6-40ab-bf62-8ab49f3d4c14, 90902ad9-3a81-4a74-806f-43f145e6a546, 5402e17a-06fd-4e38-bd82-ae106d911ab1, a94992a4-891e-4b3c-9f4e-ed1cbb5345a6, 1df58ad8-982c-49ed-a190-08a782dc5958, ad2798e7-0219-4165-a9cd-714c7c3a10ff, 84b20c98-cc49-4ada-9133-cab7a0e44406, 77891a2e-1634-4f93-9245-d711f9960662, edbb52b0-3718-4ccd-b52f-860115ab719d, e9d382cd-a14c-4641-8b5a-9ed9468bcd80, 0bce2d4b-30ce-4826-aef0-6f2c80fd015a, 678a962f-70fb-44f2-8620-264a20c8eb14, 56ca24f9-a888-4f00-8ef7-f5b90864e68a, c4f3c381-c7c4-4f3b-a17b-bbadbbee8668, 6b92e8a0-fe2b-431c-9f30-aa918572c339'}]}"
"{'title': 'National Vascular Registry -  Abdominal Aortic Aneurysm Repair clinical dataset', 'contactPoint': 'datasharing@hqip.org.uk', 'abstract': 'The dataset contains continuously ascertained patient-level data for patients undergoing repair of an abdominal aortic aneurysm in NHS hosptials in England, Wales, Scotland and Northern Ireland. 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"{'title': 'Respiratory social media database', 'keywords': ['asthma', ' COPD', ' health social media', ' online health communities'], 'doiName': 'DOI:10.2196/jmir.9952, DOI:10.1136/bmjopen-2016-015245', 'contactPoint': 'a.desimoni@qmul.ac.uk', 'publisher': {'name': 'BREATHE', 'memberOf': 'HUB', 'contactPoint': 'SAILDatabank@swansea.ac.uk'}, 'abstract': 'The QMUL-LSI-RSM respiratory social media is a database for multidisciplinary research aimed to improve understanding of unmet needs of people with asthma and asthma self-management.'}",43fc768a-9d2c-4c6d-952f-d8570c487b4a,"{'spatial': 'https://www.geonames.org/countries/GB/united-kingdom.html', 'typicalAgeRange': '0-100'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '9de20d42-8e9b-45c8-8574-52a49fba826c'},"{'description': '<p>The QMUL-LSI-RSM respiratory social media is a database for multidisciplinary research aimed to improve understanding of unmet needs of people with asthma and asthma self-management. It includes 875,151 anonymised posts from 23,182 users of the Asthma UK (10 years of data) and British Lung Foundation online communities (4 years of data). </p>\n \n<p>The datasets includes publicly shared posts and their metadata (ie, the anonymized user ID numbers), user roles (eg, user, administrator, or moderator), date of posting, the hierarchical level of the post within the corresponding thread, and the dates in which the users joined and left the community. </p>\n\n<ul>\n<li>Asthma UK: Date from to 02/03/2006-06/09/2016 (548 weeks)</li>\n<li>Total number of users, n = 3,345</li>\n<li>Total number of posts, n = 32,780</li>\n<li>Number of posts per user, mean (SD) = 14.2 (55.0)</li>\n<li>Posts contributed by top 1% superusers, n (%) = 10,457 (31.9)</li> \n<li>Number of connections per user, mean (SD) = 2.1 (5.9) </li>\n<li>Number of connections per user, median (SD) = 1.0 (69.0)</li>\n</ul>\n<ul>\n<li>British Lung Foundation  Date from to 13/04/2012-06/09/2016 (230 weeks)</li>\n<li>Total number of users, n = 19,837</li>\n<li>Total number of posts, n = 875,151</li>\n<li>Number of posts per user, mean (SD) = 66.9 (75.1)</li>\n<li>Posts contributed by top 1% superusers, n (%) = 426,198 (48.7)</li>\n<li>Number of connections per user, mean (SD) = 17.6 (69.0)</li>\n<li>Number of connections per user, median (SD) = 1.0 (69.0) </li>\n</ul>\n\n<p>See complete information in Table 1 at https://www.jmir.org/2018/7/e238/</p>', 'isPartOf': 'AUCKAR'}",9de20d42-8e9b-45c8-8574-52a49fba826c,https://web.www.healthdatagateway.org/dataset/9de20d42-8e9b-45c8-8574-52a49fba826c,"{'formatAndStandards': {'vocabularyEncodingScheme': 'LOCAL', 'conformsTo': 'LOCAL', 'language': 'en'}, 'usage': {'resourceCreator': 'Queen Mary University of London', 'dataUseLimitation': 'GENERAL RESEARCH USE', 'isReferencedBy': ['De Simoni A, Taylor SJC, Griffiths CJ, Panzarasa P, Sheikh A. Online superusers as allies of the health care workforce. New England Journal of Medicine Catalyst 2018 https://catalyst.nejm.org/superusers-allies-online-health-communities/', 'Joglekar S, Sastry N, Coulson N, Taylor SJC, Patel A, Duschinsky R, Anand A, Jameson Evans M, Griffiths CJ, Sheikh A, Panzarasa P, De Simoni A. How do online communities of people with long-term conditions function and evolve? Network analysis of the structure and dynamics of the Asthma UK and British Lung Foundation (BLF) online communities. J Med Internet Res 2018;20(7):e238.DOI: 10.2196/jmir.9952', 'De Simoni A, Taylor SJC, Griffiths CJ, Panzarasa P, Sheikh A. Online superusers as allies of the health care workforce. New England Journal of Medicine Catalyst 2018 https://catalyst.nejm.org/superusers-allies-online-health-communities/]']}, 'access': {'dataController': 'BREATHE', 'accessService': 'To be determined upon data access request', 'dataProcessor': 'NOT APPLICABLE', 'accessRights': ['To be determined upon data access request'], 'deliveryLeadTime': 'VARIABLE', 'jurisdiction': ['GB-ENG', 'GB-SCT', 'GB-WLS']}}","{'temporal': {'startDate': '1905-06-28', 'endDate': '2016-01-01'}, 'origin': {'collectionSituation': 'OTHER', 'purpose': 'STUDY'}}",2021-04-09T15:30:24Z,,0.0.1,,2021-04-09T15:27:18Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Annual District Death Daily', 'publisher': {'contactPoint': 'SAILDatabank@swansea.ac.uk', 'memberOf': 'ALLIANCE', 'name': 'SAIL'}, 'abstract': 'Daily version of Annual District Death Dataset.', 'keywords': ['Daily', 'Wales', 'Death', 'SAIL', 'NCS', 'National Core Study', 'COVID-19'], 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'doiName': 'In Progress'}",584bf8c8-d58f-44c6-9b65-e1611144fd54,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150', 'pathway': 'Not Applicable', 'spatial': 'Wales', 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '14a752a8-8efa-4bab-85c1-190e1f20c8cf', '7.0.0': '9e67001e-7c77-4bc0-9af2-5138b5d638e4', '0.0.1': 'cc4f967a-7a64-461f-ad15-bb8036fb81af', '5.0.0': 'c7c7d692-99a2-4ef4-b295-35c3e6e243a1', '4.0.0': '08a7c3c9-16e5-46f7-b594-f84618fcc62e', '3.0.0': '337f2a0d-e876-4ec1-b05f-38b98aac93a8', '2.0.0': '520fe2c1-d442-4ec2-8209-bcfd792a4f48', '6.0.0': '73867034-fe12-4d23-8d11-66da716dcb3d', 'latest': '9e67001e-7c77-4bc0-9af2-5138b5d638e4'}","{'description': 'Currently this dataset is exclusively for projects designated National Covid Emergency Response.\n\nDaily version of Annual District Deaths Datasets. Office for National Statistics (ONS) register of all deaths relating to Welsh residents, including those that died outside of Wales.\n\nThe data are collected from death registrations.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/'], 'isPartOf': 'NOT APPLICABLE'}",9e67001e-7c77-4bc0-9af2-5138b5d638e4,https://web.www.healthdatagateway.org/dataset/9e67001e-7c77-4bc0-9af2-5138b5d638e4,"{'access': {'accessRights': ['Exclusively for national emergency response for COVID-19'], 'dataProcessor': 'SAIL Databank', 'deliveryLeadTime': 'OTHER', 'jurisdiction': 'GB-WLS', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'accessRequestCost': '0 GBP', 'dataController': 'SAIL Databank'}, 'formatAndStandards': {'language': 'en', 'vocabularyEncodingScheme': 'ICD10', 'conformsTo': 'LOCAL', 'format': ['SQL table']}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'NHS Wales Informatics Service', 'dataUseRequirements': ['GEOGRAPHICAL RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': 'RESEARCH SPECIFIC RESTRICTIONS'}}","{'temporal': {'distributionReleaseDate': '2020-06-05', 'accrualPeriodicity': 'DAILY', 'startDate': '2016-01-16', 'endDate': '2020-07-23', 'timeLag': 'LESS 1 WEEK'}, 'origin': {'purpose': ['DISEASE REGISTRY', 'ADMINISTRATIVE'], 'source': 'OTHER', 'collectionSituation': 'COMMUNITY'}}",2020-06-10T09:53:21Z,,7.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Linkable to Other SAIL Linked datasets'], 'tools': ['https://conceptlibrary.saildatabank.com/']}",2021-04-09T18:33:36Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 49, 'structuralMetadata.columnName': 49, 'structuralMetadata.columnDescription': 49, 'structuralMetadata.dataType': 49, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'f3a69ac8-a2fa-4728-ab17-bc296b117bc4', 'description': 'Currently this dataset is exclusively for projects designated National Covid Emergency Response.\n\nDaily version of Annual District Deaths Datasets. 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Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'jurisdiction': ['GB'], 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.']}}","{'temporal': {'distributionReleaseDate': '2020-03-03', 'startDate': '2019-04-03', 'accrualPeriodicity': 'MONTHLY', 'endDate': '2020-01-31', 'timeLag': '2-4 WEEKS'}, 'origin': {'purpose': ['STUDY', 'CARE', 'ADMINISTRATIVE'], 'source': ['EPR'], 'collectionSituation': ['CLINIC']}}",2021-09-13T15:21:16Z,"[{'observedNode': 'EVENTS', 'measuredValue': '3000000', 'observationDate': '01/09/2021', 'measuredProperty': 'Count', 'disambiguatingDescription': 'Approx 70-80% coverage of Welsh population through GP registrations.'}]",2.0.0,"{'tools': ['https://conceptlibrary.saildatabank.com/'], 'derivation': ['Not Available'], 'qualifiedRelation': ['Yes. 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"{'title': 'Granular ICU data focussing on the impact of lactate readings on outcomes', 'abstract': 'A granular dataset of over 12,000 ICU admissions with lactate reading from 01/01/2018 to 31/12/2020 (pre-COVID). Detailed patient flow through the hospital providing severity, demographics, multi-morbidity, interventions, treatments and outcomes.', 'publisher': {'identifier': '607db9c5e1f9d3704d570d5f', 'memberOf': 'HUB', 'name': 'PIONEER'}, 'contactPoint': 'PIONEER@UHB.NHS.UK', 'keywords': ['Lactate levels', 'Intravenous fluids', 'Patient outcomes', 'hypovolaemia', 'Blood volume', 'Oxygen levels', 'Critical Illness', 'Sepsis', 'Traumatic Injury', 'Hyperlactaemia', 'Acute Care']}",edfc20b7-5a5e-40c4-afd0-a7a5bba77003,"{'typicalAgeRange': '19-105', 'followup': 'OTHER', 'pathway': 'Data is representative of the multi-ethnicity population within the West Midlands (42% non white). Data includes all patients admitted during this timeframe, with National data Opt Outs applied, and therefore is representative of admissions to secondary care. Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2634343/west-midlands.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': '9fe99176-1cbf-41f7-901d-245051dbe410'},"{'description': 'Lactate is a chemical produced by the body as cells consume energy - in times of stress more lactate is produced. In the past, we thought that lactate was just a waste product, but more recently we have learned that lactate has an important role to play in the body. \n\nPeople suffering from certain severe illnesses may have a high ‘lactate’ level in their blood. This is particularly common in the following: \n\nSevere infections which the body cannot properly control (sepsis) \n\nPeople who have sustained severe injuries (traumatic injury) \n\nPeople who are critically unwell with other illnesses (needing treatment in an intensive care unit) \n\nSome patients will develop a high lactate level when they are in hospital. Doctors recognise that this indicates the patient is becoming more unwell, but it is often challenging to know exactly what is causing the lactate level to be raised. \n\nRaised lactate level has been associated with worse outcome in other syndromes, including major trauma and undifferentiated critical illness; however healthy individuals may generate very high lactate levels during strenuous exercise from which they recover without any harm. It is unclear whether lactate in itself is harmful to patients. This dataset provides unique insight into the potential role of lactate as not only a biomarker but a therapeutic target in acute illness. \n\nPIONEER geography The West Midlands (WM) has a population of 5.9 million and includes a diverse ethnic and socio-economic mix.  \n\nEHR. UHB is one of the largest NHS Trusts in England, providing direct acute services and specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds and an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary and secondary care record (Your Care Connected) and a patient portal “My Health”. \n\nScope: Longitudinal and individually linked, so that the preceding and subsequent health journey can be mapped and healthcare utilisation prior to and after admission understood. The dataset includes highly granular patient demographics, co-morbidities taken from ICD-10 and SNOMED-CT codes. Serial, structured data pertaining to process of care (timings, admissions, wards), presenting complaint, physiology readings (BMI, temperature and weight), Sample analysis results (blood sodium level, lactate, haemoglobin, oxygen saturations, and others) drug administered and all outcomes.    \n\nAvailable supplementary data: Matched controls; ambulance, OMOP data, synthetic data. \n\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform and load) process, Clinical expertise, Patient and end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.'}",9fe99176-1cbf-41f7-901d-245051dbe410,https://web.www.healthdatagateway.org/dataset/9fe99176-1cbf-41f7-901d-245051dbe410,"{'access': {'jurisdiction': ['GB-ENG'], 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'deliveryLeadTime': '1-2 MONTHS', 'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/'], 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'dataProcessor': 'NOT APPLICABLE'}, 'formatAndStandards': {'format': ['SQL'], 'language': ['en'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['SNOMED CT', 'ICD10']}, 'usage': {'resourceCreator': ['This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS']}}","{'origin': {'source': ['EPR'], 'purpose': ['CARE'], 'collectionSituation': ['IN-PATIENTS']}, 'temporal': {'distributionReleaseDate': '2021-11-25', 'endDate': '2020-12-28', 'accrualPeriodicity': 'QUARTERLY', 'startDate': '2018-01-01', 'timeLag': 'OTHER'}}",2022-02-02T12:48:23Z,"[{'measuredProperty': 'Count', 'observedNode': 'EVENTS', 'measuredValue': '12369', 'disambiguatingDescription': '12,369 ICU 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"{'title': 'Pregnancy Register for CPRD GOLD', 'contactPoint': 'enquiries@cprd.com', 'abstract': 'A register of pregnancy episodes, based on data recorded in the primary care medical record.', 'publisher': {'identifier': '607db9c2e1f9d3704d570cee', 'name': 'CPRD', 'memberOf': 'ALLIANCE'}, 'keywords': ['Pregnancy', 'Primary care']}",14aaf184-5922-4459-affb-6c9e55c12176,"{'pathway': 'Primary care', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2635167/united-kingdom.html'], 'followup': 'OTHER', 'typicalAgeRange': '11-49'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'b5c7e5b2-3922-4b2a-8483-ad0372892024', '4.0.0': '9fff31ef-f927-4832-97cb-edcbb0a19839', '2.0.0': '96d29a1d-9566-4793-8dbb-351fbe2eb790', '3.0.0': '9552365b-7b9a-4d04-a857-358d0e171424', '0.0.1': '02cdaa87-0823-44cd-860e-16f41efa9e7c', 'latest': '9fff31ef-f927-4832-97cb-edcbb0a19839'}","{'description': 'The Pregnancy Register is created by an algorithm which was developed jointly by CPRD and the London School of Hygiene and Tropical Medicine. The Pregnancy Register lists all pregnancies identified in the CPRD GOLD database and includes details of each one. A single record represents a unique pregnancy episode. There may be more than one episode per woman. For pregnancies resulting in live births, pseudonymised patient identifiers of linked babies in the CPRD Mother Baby Link are also provided.', 'associatedMedia': ['https://www.cprd.com/linked-data'], 'isPartOf': 'CPRD GOLD'}",9fff31ef-f927-4832-97cb-edcbb0a19839,https://web.www.healthdatagateway.org/dataset/9fff31ef-f927-4832-97cb-edcbb0a19839,"{'access': {'accessRequestCost': ['https://www.cprd.com/pricing'], 'accessRights': ['HTTPS://CPRD.COM/DATA-ACCESS'], 'jurisdiction': ['GB-GBN'], 'accessService': 'Access to CPRD data, including UK Primary Care Data, and linked data such as Hospital Episode Statistics, is subject to protocol approval via CPRD’s Research Data Governance (RDG) Process. 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For pregnancies resulting in live births, patient identifiers of linked babies identified through the CPRD Mother Baby Link are also provided.', 'name': 'Pregnancy Register', 'dataElementsCount': 24, 'dataElements': '7481a9b2-fa9c-4c8f-b9ef-9e0f38579c06, 764affc9-480a-43e5-96f8-955aed92e6b9, 4ab13ce6-251c-4537-9211-51f2e54c226f, 1660cbf3-b6b6-4026-88e3-b67ac7107943, b46c394b-e434-4ccb-94da-9e44335b538d, 799d9a5e-b8dd-47b5-a3b9-c482c9bc3ae1, 27d8565b-2394-4593-b564-e1ab3f962c73, b1a891ff-868f-482d-89ac-b4a1c01bf0d4, 4d28a6b1-6e93-4ac4-af51-f20015e3b718, 4170d3b3-4331-4979-9f24-23a08d589310, 61e420a9-2903-48d1-bbb9-7d3d1b9c2436, 29f8f463-cb39-4b8f-9b9a-f8f91fe080ff, beebd58f-5091-472a-a748-8a109a6cfad7, 25dc1663-50e5-43b8-b01a-5c7d7a1593f1, da2916cf-5c2c-4017-8027-155470bc02c1, 5481672f-cf05-4cea-afc2-1446052d54b7, 14bd6b73-ccc1-4240-8a24-43a1024aa218, a43f4438-3cc8-4b92-b241-39dbc46ac2e3, 7fb428ed-acc8-4beb-ae2d-fedd04d3204f, 146ef0ca-49e4-4caa-8f5e-b1394ce263d7, 72b8c6fe-4bb8-4112-b397-ebc157c0bcce, 12536cd3-dd8f-429e-b1fe-35dc79c3eeee, 5ce1875f-be7e-4359-8ea9-7a761883a45a, 0d52dfeb-71cf-461e-987d-be857fb9422a'}]}"
"{'title': 'Outpatient Referral (OPRD)', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '5f3f98068af2ef61552e1d75', 'name': 'SAIL'}, 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'abstract': 'Data on Outpatient referrals from primary care.', 'keywords': ['Referral', 'Outpatient', 'SAIL', 'core', 'OPRD']}",7465c65e-c321-42e9-a2f4-6bc664caf1fc,"{'pathway': 'Secondary care', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150', 'spatial': ['https://www.geonames.org/2634895/wales.html'], 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'5.0.0': 'b5d817bf-f215-45a0-ba4f-9faf8f28e80b', '6.0.0': 'a0292641-9e1a-495d-a7f2-d9ce87ff0b88', 'latest': 'a0292641-9e1a-495d-a7f2-d9ce87ff0b88'}","{'description': 'Monthly return submitted by Local Health Boards.\nA complete referral pathway to secondary care, including all clinical referrals received from General Practitioner, General Dental Practitioners, Community Dental Services, A&E Departments, self referrals, walk-ins or emergency patients accompanied by a GP letter, and Consultant to Consultant Referrals.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://www.youtube.com/watch?v=ZK9-Jw3uVkw', 'https://saildatabank.com/'], 'isPartOf': 'NOT APPLICABLE'}",a0292641-9e1a-495d-a7f2-d9ce87ff0b88,https://web.www.healthdatagateway.org/dataset/a0292641-9e1a-495d-a7f2-d9ce87ff0b88,"{'access': {'deliveryLeadTime': '2-6 MONTHS', 'accessRights': ['https://saildatabank.com/application-process/'], 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'dataProcessor': 'SAIL Databank', 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'dataController': 'SAIL Databank', 'jurisdiction': ['GB']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['[""NHS Wales’ Informatics Service (NWIS)""]'], 'isReferencedBy': ['Jones, K. H., Ford, D. V., Thompson, S. and Lyons, R. (2020) “A Profile of the SAIL Databank on the UK Secure Research Platform”, International Journal of Population Data Science, 4(2). doi: 10.23889/ijpds.v4i2.1134.'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION']}, 'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL'], 'format': ['SQL database table'], 'conformsTo': ['LOCAL']}}","{'origin': {'source': ['EPR'], 'purpose': ['STUDY', 'CARE', 'AUDIT', 'ADMINISTRATIVE', 'FINANCIAL'], 'collectionSituation': ['OUTPATIENTS']}, 'temporal': {'accrualPeriodicity': 'QUARTERLY', 'distributionReleaseDate': '2019-09-12', 'startDate': '2004-09-20', 'endDate': '2021-07-01', 'timeLag': '1-2 MONTHS'}}",2021-09-13T15:31:44Z,"[{'observedNode': 'EVENTS', 'measuredValue': '3000000', 'observationDate': '01/09/2021', 'measuredProperty': 'Count', 'disambiguatingDescription': 'Approx 70-80% coverage of Welsh population through GP registrations.'}]",6.0.0,"{'tools': ['https://conceptlibrary.saildatabank.com/'], 'derivation': ['Not Available'], 'qualifiedRelation': ['Yes. 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"{'title': 'National Joint Registry - Revision Shoulder Replacement dataset', 'keywords': ['Shoulder', 'Joint', 'Revised', 'Replacement', 'NJR', 'Registry'], 'publisher': {'memberOf': 'ALLIANCE', 'name': 'HQIP', 'identifier': '607db9c4e1f9d3704d570d23'}, 'abstract': 'The NJR datasets collect continuous, prospective data on patients undergoing primary and revision total joint replacement (hip, knee, shoulder, elbow and ankle). The dataset covers the period 2003 to present and covers the UK and beyond', 'contactPoint': 'research@njr.org.uk'}",9623e62b-3c50-44aa-8923-0bbb94e7ad61,"{'typicalAgeRange': '0-150', 'pathway': 'Data is representative of the patient pathway. Readmissions for reasons other than revision surgery are not collected', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'UNKNOWN', 'spatial': ['https://www.geonames.org/3042225/isle-of-man.html', 'https://www.geonames.org/3042363/guernsey.html', 'https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html', 'https://www.geonames.org/2641364/northern-ireland.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'bc6287e7-4c09-4ee7-9541-b87e03ce322f', '4.0.0': 'a03b66c6-f56d-40f8-bb9b-06751d97864c', '2.0.0': 'bddcc89d-028f-48a5-b568-7dccd574563b', '1.0.0': 'ff8df140-371f-439c-9159-2a148d75add3', '3.0.0': '7c1f02ee-a72e-4aca-9205-0013f0796db6', 'latest': 'a03b66c6-f56d-40f8-bb9b-06751d97864c'}","{'description': ""The National Joint Registry for England, Wales, Northern Ireland and the Isle of Man is a database containing details of all primary and revision total hip, knee, shoulder, elbow and ankle replacement procedures carried out in NHS and independent sector hospitals in England, Wales, Northern Ireland and the Isle of Man.  Primary hip replacement has its own specific dataset for procedures.\nInitially this data is collected during a patient's time at hospital as part of bespoke data collection to support the NJR . This is submitted to NEC Software Solutions (contracted to the NJR) for processing and is used to monitor the quality and safety of patient care and outcomes. \nThis same data can also be processed and used for non-clinical purposes, such as research and planning health services. Because these uses are not to do with direct patient care, they are called 'secondary uses'. This is the NJR research ready data set.\nNJR data covers all procedures carried out in NHS and independent sector hospitals  in England, Wales (from 2003), Northern Ireland )from 2013), the Isle of Man (from 2015) and the States of Guernsey (from 2019).\nEach NJR record contains a wide range of information about an individual patient treated at an NHS or independent sector hospital, including:\n• clinical information about surgical indications and operations\n• patient information, such as age group and gender\n• component information, such as the brand and size of prosthesis used\n• outcomes, such as whether a revision procedure has been undertaken\nNJR apply a strict statistical disclosure control in accordance with the NHS Digital protocol, to all published NJR data. This suppresses small numbers to stop people identifying themselves and others, to ensure that patient confidentiality is maintained.\nWho NJR data is for\nNJR can provide data for the purpose of healthcare analysis to the NHS, government and others including:\n• national bodies and regulators, such as the Department of Health, NHS England, Public Health England, NHS Improvement and the CQC\n• local Clinical Commissioning Groups (CCGs)\n• provider organisations\n• government departments\n• researchers and commercial healthcare bodies\n• National Institute for Clinical Excellence (NICE)\n• patients, service users and carers\n• the media\nUses of the statistics\nThe statistics are known to be used for:\n• national policy making\n• benchmarking performance against other hospital providers or CCGs  \n• academic research\n• analysing service usage and planning change\n• providing advice to ministers and answering a wide range of parliamentary questions\n• national and local press articles\n• international comparison\nMore information can be found at http://www.njrcentre.org.uk/njrcentre/"", 'associatedMedia': ['https://www.njrcentre.org.uk/njrcentre/Research/Research-requests'], 'isPartOf': 'NJR'}",a03b66c6-f56d-40f8-bb9b-06751d97864c,https://web.www.healthdatagateway.org/dataset/a03b66c6-f56d-40f8-bb9b-06751d97864c,"{'usage': {'resourceCreator': ['""the study title should be followed by the suffix: ‘An analysis from the National Joint Registry\'. '], 'investigations': ['https://www.njrcentre.org.uk/njrcentre/Research/Research-Portfolio'], 'dataUseLimitation': ['NO RESTRICTION'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS']}, 'access': {'accessRequestCost': ['http://www.njrcentre.org.uk/njrcentre/Portals/0/NJR%20cost%20recovery%20policy%20April%202019%20v1.0.pdf?ver=2019-04-04-105011-240'], 'accessRights': ['http://www.njrcentre.org.uk/njrcentre/Research/Research-requests', 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'jurisdiction': ['GB-EAW'], 'deliveryLeadTime': 'VARIABLE', 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England', 'dataProcessor': 'NEC Software Solutions'}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'format': ['Tab delimited file made available via NJR Data Access Portal'], 'conformsTo': ['LOCAL'], 'language': ['en']}}","{'origin': {'collectionSituation': ['IN-PATIENTS', 'PRIVATE'], 'source': ['EPR', 'ELECTRONIC SURVEY', 'PAPER BASED'], 'purpose': ['AUDIT', 'DISEASE REGISTRY', 'OTHER']}, 'temporal': {'accrualPeriodicity': 'CONTINUOUS', 'startDate': '2012-04-01', 'timeLag': 'VARIABLE'}}",2020-01-13T14:55:21Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '3016279', 'disambiguatingDescription': 'total number of NJR records analysed for the 2019 annual report\n', 'observationDate': '01/09/2020', 'measuredProperty': 'Count'}]",4.0.0,"{'derivation': ['Not available'], 'qualifiedRelation': [' HES - available subject to additional permissions', 'National PROMS - available subject to additional permissions', 'National PROMS - available subject to additional permissions']}",2022-01-07T11:20:20Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 58, 'structuralMetadata.columnName': 58, 'structuralMetadata.columnDescription': 58, 'structuralMetadata.dataType': 58, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '4d1839da-240b-4292-9ed3-1c62027f2e47', 'description': 'Data fields for NJR revision shoulder replacement dataset', 'name': 'National Joint Registry Revision Shoulder Replacement Dataset', 'dataElementsCount': 58, 'dataElements': 'e02895c1-720e-49aa-8d5d-a176bf4fb112, 71e9653a-2afa-437d-9281-18468a8c7e13, 36a92ceb-70d3-4f66-8929-40b03afe2f5b, 7cd2d049-fe00-4c7e-afdd-4d9f83a4f4d6, 7fdea404-bd37-4405-8023-de54911a2812, c6ed6a33-65d7-481c-97fa-7453fe514375, e120e2ec-78ee-4da0-bef6-7f98ce53c735, 8a37ecfd-2df3-4ac3-a822-b7a63567cb17, e6afdd6c-b4f6-45ab-a857-9d04bad4a572, 423ae5c1-5108-41a3-a8b7-0433035d7377, 31ed41e7-fff4-4341-989e-b55bdf7b2b8b, ce37a268-06cb-4e99-9059-f975d2e75ec9, 1b15353f-7bc1-4c3e-86f2-8e1b16c4c2b4, af2ad113-5f4d-4544-be73-2dc4c1899d67, 51b75037-3763-4d68-bc78-1ea5b33f2757, 33e7eaf7-5eca-4337-8340-6eef46a85e2f, 5616c2a5-d72a-4d03-92f3-80b34cb27241, 1d21f1f7-537d-4310-b3be-e8462467c3eb, a66fc6bd-af90-4666-aa6d-95974e078582, ba91208b-0fa8-4912-bf9a-3ce58f44dbb8, 7bcf4e4b-78ad-46af-8622-3496b0936281, 7816376d-62dc-487e-9597-0c78c51ddaef, d2661520-9854-4731-8282-4cc7175f3055, 69fc865a-a5b9-4dd6-8fb6-22b450b4d2c3, 6e50a78c-4f62-4048-a79e-503605645cf0, 0f79896f-4323-4d93-8995-4e7dbd3dd562, 3a317edd-56de-41d8-a0fb-d7e132c2f0bd, 13d4f825-6b04-4d6b-90d0-1e1d7f44c2b4, 388d748f-a546-49a1-a43f-4f6479d4cd84, a0cfa2b1-b634-432c-bb83-0b9356abf13e, 5c1eed76-b668-4ba6-aaad-927acbfd35bc, ac113220-534c-4af9-a6c5-52d7dd25833e, 25a93225-bf36-4af0-afc2-fdba656d49c8, 22d55efd-e1d0-4c61-a429-337e0ff4a5a1, 3bb26ab2-320b-4223-a9c5-3675382f675c, cedab376-c985-4d48-96e0-5bac24a879e6, 295f705c-a610-4a5a-be80-9b4e6e123663, bba273da-6170-46ec-bfab-ef7ecf0386a4, f90caf06-c448-4c68-a301-e2c84cda35cd, 210eec88-28cc-440d-a258-35feda090c95, beb2a2e2-a09a-4554-9b41-ad3e1a0bd3d2, ee40e090-791b-4613-8d7e-7c19aa65bf1d, 576dd521-e784-41b1-9795-ab06414e2715, 0d62de65-a545-4e88-bb49-b85fcd0dd914, 94edbc4e-2d13-4a91-ba23-5dc5e9c8198a, e9c5a815-28bb-49df-9d1e-283693a0c212, 0543f551-6ba9-40d4-b8bb-fc27fc62c00a, 45602471-4e2f-4aaa-be52-1ff64343e596, fb5847e9-46fb-49e0-b361-a23aaa5f9b8a, 366155af-699e-4f85-8fab-546e71f194e9, dd93242d-6230-462e-8740-0abe615733e1, c9614092-3f8d-4acf-8eb3-00e3654292a6, f924ba92-d397-46cb-af1a-225732276a52, 769671e4-7c2e-4e71-b912-318cec618a1b, f8a7ef71-4a85-4493-bdc2-d2be7289ffc6, 3c1dcd5d-cc27-42b9-9598-1cc4edba4278, e16694ac-9e5d-410d-9cea-ed2912a786b3, 2398524c-547a-4f0f-970a-37c4e42e57ef'}]}"
"{'title': 'National Neonatal Research Database (NNRD)', 'publisher': {'identifier': '6048a783a89bdc3443823333', 'name': 'NEONATAL DATA ANALYSIS UNIT - IMPERIAL COLLEGE LONDON', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'ndau@imperial.ac.uk', 'abstract': 'Electronic health records for all neonatal unit admissions across England, Scotland and Wales as specified in the Neonatal Data Set (ISB 1595).', 'keywords': ['neonatal inpatient stay', 'epidemiological', 'Neonatal Data Set', 'patient care and outcomes', 'policy research', 'clinical', 'quality improvement', 'health services', 'daily records', 'National Neonatal Research Database', 'follow-up health status']}",67020745-9def-4c6e-b5ac-bb273bd0a20e,"{'pathway': 'Neonatal Unit stay', 'followup': '1 - 10 YEARS', 'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html', 'https://www.geonames.org/2638360/scotland.html', 'https://www.geonames.org/3042225/isle-of-man.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-1'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'5.0.0': '693b206b-57ec-4253-907f-af405061d589', '6.0.0': 'a04b16f3-dd24-47de-8c20-699b88eb4da0', 'latest': 'a04b16f3-dd24-47de-8c20-699b88eb4da0'}","{'description': 'The NNRD is a national resource holding real-world clinical data captured in the course of care on all admissions to NHS neonatal units in England, Wales, Scotland and the Isle of Man. Neonatal units submit data through their Electronic Patient Record system supplier. At present, there is information on around one million babies and 10 million days of care in the NNRD.\n\nThe NNRD is available to support audit, evaluations, bench-marking, quality improvement and clinical, epidemiological, health services and policy research to improve patient care and outcomes. Data in the NNRD comprise the Neonatal Data Set (ISB1595), an approved NHS Information Standard and include demographic details, daily records of interventions and treatments throughout the neonatal inpatient stay, information on diagnoses and outcomes, and follow-up health status at age two years. \n\nThe Neonatal Data Analysis Unit was founded to support the management and development of the National Neonatal Research Database (NNRD) established in 2007 by Professor Modi, and related research.\n\nMore information can be found at\nhttps://www.imperial.ac.uk/neonatal-data-analysis-unit', 'isPartOf': 'No Group'}",a04b16f3-dd24-47de-8c20-699b88eb4da0,https://web.www.healthdatagateway.org/dataset/a04b16f3-dd24-47de-8c20-699b88eb4da0,"{'usage': {'isReferencedBy': ['https://www.imperial.ac.uk/neonatal-data-analysis-unit/our-research/research-publications/'], 'resourceCreator': ['We acknowledge the use of the UK National Neonatal Research Database (https://www.imperial.ac.uk/neonatal-data-analysis-unit/neonatal-data-analysis-unit/), established and led by Professor Neena Modi and her research group at Imperial College London, the contribution of neonatal units that collectively form the UK Neonatal Collaborative (https://www.imperial.ac.uk/neonatal-data-analysis-unit/neonatal-data-analysis-unit/contributing-to-the-national-neonatal-research-database/), and their lead clinicians.']}, 'access': {'accessRights': ['https://www.imperial.ac.uk/neonatal-data-analysis-unit/neonatal-data-analysis-unit/utilising-the-national-neonatal-research-database/'], 'jurisdiction': ['GB'], 'dataProcessor': 'Professor Neena Modi, Imperial College London', 'deliveryLeadTime': '1-2 MONTHS', 'accessRequestCost': ['https://www.imperial.ac.uk/neonatal-data-analysis-unit/neonatal-data-analysis-unit/utilising-the-national-neonatal-research-database/'], 'dataController': 'Professor Neena Modi, Imperial College London'}, 'formatAndStandards': 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"{'title': 'Enhanced Prescribing Database', 'keywords': ['Prescriptions', 'Prescribing', 'Northern Ireland', 'NCS', 'National Core Study', 'COVID-19'], 'publisher': {'name': 'HEALTH AND SOCIAL CARE NORTHERN IRELAND', 'memberOf': 'ALLIANCE', 'identifier': '5f89662f7150a1b050be0710'}, 'abstract': 'This is a record of primary care prescriptions that are submitted by community pharmacies in Northern Ireland to the Business Service Organisation for payment.', 'contactPoint': 'hbs@hscni.net'}",2843087f-23a4-4cfe-8e72-53f2b9562cc3,"{'followup': 'UNKNOWN', 'typicalAgeRange': '0-150', 'spatial': 'https://www.geonames.org/2641364/northern-ireland.html', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'This dataset deals with prescribed medications only'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '59ad4112-1405-4414-961f-27325ab4c8e8', '4.0.0': 'a2a324f8-ccd3-405b-a146-34bbb85cc34a', '3.0.0': '74a56192-5284-4c7d-b93e-0a8e0032bd35', '2.0.0': '9353805b-753d-486d-a2ff-3aa23d4ab197', '1.0.0': '5ae869f8-b6af-41c0-bca0-1fffef112375', 'latest': 'a2a324f8-ccd3-405b-a146-34bbb85cc34a'}","{'description': 'The Enhanced Prescribing Database (EPD) covers drugs prescribed in primary care and dispensed by community pharmacies. Prescriptions are submitted to the Business Services Organisation (BSO) by community pharmacies for payment. The EPD includes prescriptions issued by all types of prescribers including doctors and nurses, and all those issued and dispensed by pharmacists, dispensing doctors and appliance suppliers. Only prescriptions that are subsequently dispensed and processed by BSO for payment are included in the EPD. Patient information is not captured for all prescriptions. Only prescription forms with barcodes that were successfully read have patient Health and Care Numbers (HCN) recorded. Consequently datasets containing prescription information linked to patient HCN will not give a count of the total number of items prescribed during the time period. Rather it contains all relevant items prescribed during the time period for which the patient details were known.'}",a2a324f8-ccd3-405b-a146-34bbb85cc34a,https://web.www.healthdatagateway.org/dataset/a2a324f8-ccd3-405b-a146-34bbb85cc34a,"{'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'vocabularyEncodingScheme': ['DM+D'], 'format': ['text', 'csv']}, 'access': {'jurisdiction': ['GB-NIR'], 'dataProcessor': 'HSC Honest Broker Service', 'deliveryLeadTime': '1-2 MONTHS', 'dataController': 'Business Services Organisation', 'accessService': 'Remote access can now be granted via an HSCNI tenancy of the UK Secure e-Research Platform (UK SeRP), the HBS still offer the physical safe setting in Belfast for local research.', 'accessRequestCost': ['http://www.hscbusiness.hscni.net/pdf/Researcher%20Pack.zip'], 'accessRights': ['http://www.hscbusiness.hscni.net/services/2454.htm']}, 'usage': {'dataUseLimitation': ['RESEARCH USE ONLY'], 'resourceCreator': ['ACKNOWLEDGEMENT The authors would like to acknowledge the help provided by the staff of the Honest Broker Service (HBS) within the Business Services Organisation Northern Ireland (BSO). The HBS is funded by the BSO and the Department of Health (DoH). The authors alone are responsible for the interpretation of the data and any views or opinions presented are solely those of the author and do not necessarily represent those of the BSO.'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS']}}","{'origin': {'source': ['PAPER BASED'], 'purpose': ['ADMINISTRATIVE'], 'collectionSituation': ['PHARMACY']}, 'temporal': {'accrualPeriodicity': 'IRREGULAR', 'timeLag': '1-2 MONTHS', 'startDate': '2010-01-01'}}",2020-10-27T12:01:28Z,"[{'disambiguatingDescription': 'Approximately 42 million prescription items per year\n\n', 'observedNode': 'FINDINGS', 'measuredValue': '42000000', 'observationDate': '22/06/2021', 'measuredProperty': 'Count'}]",4.0.0,"{'qualifiedRelation': ['https://web.www.healthdatagateway.org/dataset/1d5b9205-dae4-4b0e-a3d3-04707875edf8'], 'derivation': ['Not known']}",2021-06-25T13:02:49Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 3, 'structuralMetadata.tableName': 3, 'structuralMetadata.tableDescription': 3, 'structuralMetadata.dataElementsCount': 26, 'structuralMetadata.columnName': 26, 'structuralMetadata.columnDescription': 26, 'structuralMetadata.dataType': 26, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'd457d3c4-e9dc-4bc6-ab8d-87d28532455b', 'description': 'This table links Dictionary of medicines and devices (DM+D) information with the BSO Drug Masterfile. It can be used to find prescribed product details or dispensed product details.', 'name': 'BSO_MedicinalProducts', 'dataElementsCount': 16, 'dataElements': '0eca1aa7-5752-4d87-92c6-331fad186d80, 6b2048ca-0b44-46c4-ba49-10287544524a, 1f8ee0ff-fb37-4d90-bdc5-f50f15c2bea4, 70b2c66a-a860-47f2-9a34-fbeb7aad12f3, e7c5f846-be8d-42a3-958a-e83b5a5506e5, d3a4922c-6125-4908-96de-e1c22188a809, 7378ee87-1ce1-478d-8548-93365d79095e, ec4fef25-5a3d-4de1-926b-d4f1d93218f4, e1a3a324-8795-40e5-866a-eace88b5f7c4, 6f4508fe-37ae-4ee2-ae87-50f65ec57143, 4aff5c7f-6844-47b0-ac9d-73b5abeea09b, f0a1a021-4d3a-4ca4-926a-1f3efe3b9387, 76fcb2dc-6b19-44bf-9da4-98eff0880198, d23fe9b2-76f7-454d-a7d0-e4f5b9a6c068, f193742b-75e9-459f-a19c-82ec6e810017, c191691b-3352-4595-aa7c-8eab98619603'}, {'id': 'd3b85e6e-d47e-45bd-9ca9-ed1828799e3a', 'description': 'This is a record of primary care prescriptions that are submitted to the BSO.', 'name': 'TBL_PRESCRIPTION', 'dataElementsCount': 8, 'dataElements': '6cc0cdc6-7045-4569-b9a8-1c4aa0f24081, fb001fa2-c6be-43fd-bd41-e16c3d7669ad, 0e59b893-f198-4f25-b4d6-9f1f098f091f, 8c19c187-246c-4d82-b5b3-f3fe1f66329d, f6475a85-1022-4432-8925-99f75f09986c, 396c50a7-b03a-4492-b5bb-861ff81fbc2b, 26c513d2-17ec-4678-bcf7-ec7c1dd038aa, 3053eb75-32bf-4ffb-9e89-01a7424c2fc2'}, {'id': '8950d7be-50a5-4083-be1a-c94e97187173', 'description': 'This is a record of Primary care prescriptions that are submitted to the BSO.', 'name': 'TBL_DRUG_ITEM', 'dataElementsCount': 2, 'dataElements': 'f9037b55-9ee4-491e-85e2-490c7a76d461, 64563537-f623-4dba-be7a-bd308ee3163a'}]}"
"{'title': 'Comprehensive Patient Records for Cancer Outcomes', 'keywords': ['CANCER', 'population', 'Leeds', 'secondary care', 'data', 'primary care', 'research'], 'abstract': 'The Comprehensive Patient Records research dataset relates to the medical history of cancer patients prior to cancer, their diagnosis and treatment, long-term outcomes, and medical history of matched non-cancer patients that form a comparator cohort.', 'contactPoint': 'lida@leeds.ac.uk', 'publisher': {'contactPoint': 'lida@leeds.ac.uk', 'memberOf': 'HUB', 'name': 'DATA-CAN'}, 'doiName': 'In Progress'}",ce4582a8-0985-46c6-b95f-29a5de862d4a,"{'followup': 'UNKNOWN', 'pathway': 'Primary and Secondary care', 'physicalSampleAvailability': ['AVAILABILITY TO BE CONFIRMED'], 'typicalAgeRange': '0-100', 'spatial': 'https://www.geonames.org/2644688/leeds.html'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': 'a5b00b37-a33e-4d8d-b0c0-045d184e05bd', '5.0.0': 'a337845e-1dde-445b-90cf-91d8b825e3a5', '3.0.0': '49dc6bfb-37f7-4f18-92e7-1a06ab80633e', '4.0.0': 'b7d50217-a93a-4adf-9c84-bfa7f582c720', '1.0.0': '02c68003-1343-47b5-95e3-ab16fbcb6590', '0.0.1': 'ce13db83-cedb-4ff9-9f6d-fe668d872da4', 'latest': 'a337845e-1dde-445b-90cf-91d8b825e3a5'}","{'description': 'The data is derived from linked primary, secondary and tertiary care electronic health records and participant survey responses. Data is de-identified at source (Leeds Teaching Hospitals NHS Trust (LTHT) and ResearchOne) and linked using matching pseudonymous digests that are re-pseudonymised upon linkage by University of Leeds IT to produce irreversibly pseudonymous data that is processed into a research dataset. The data relates to the medical history of cancer patients prior to cancer, during their cancer diagnosis and treatment, and following their long-term outcomes, and the medical history of matched non-cancer patients that form a comparator cohort.\n\nThe data relates to 431,352 patients in the UK that LTHT have a ‘legitimate patient relationship’ with and that were determined by LTHT to have had a cancer diagnosis between 2004 and 2018 or be a matched non-cancer patient. Where available, data from ResearchOne provides primary care information for these patients. Where the patients were invited to participate in a patient reported outcomes measures survey (PROMS), this status is recorded. Where the patient returned a consented PROMS, the PROMS data will also be available once it has completed the extract, transform and load process. \n\nThe dataset is currently 5.7 GB and further ResearchOne and PROMS data is anticipated. The dataset is arranged as a relational database, with tables linking on the patient level by a pseudonymous digest. Each table is a comma separated values (CSV) file and relates to an event type, such as prescription cost, address history or diagnosis. All patients have an entry (row) in the demographics table; the number of times a patient has an entry in the other tables depends on how many events of that type were recorded for the patient. \n\nThe dataset is split into two files, each with similar table structure; the main dataset contains all patients and the PROMs dataset contains only those in the PROMs cohort (for whom additional PROMs data will be added). Each table has a re-pseudonymised digest field, “Digest2” and an indicator as to whether the patient has data from ResearchOne available, “TPP_Linked” (0 or 1). Additional fields per table are defined in Table 1. No fields contain sensitive information.\n\nContains patients in the UK that LTHT have a ‘legitimate patient relationship’ with and that were determined by LTHT to have had a cancer diagnosis between 2004 and 2018 or be a matched non-cancer patient.', 'associatedMedia': ['https://lida.leeds.ac.uk/wp-content/uploads/2017/01/Data-Flow-Protocol-V3.pdf', 'https://lida.leeds.ac.uk/comprehensive-patient-records-2/', 'https://datadictionary.nhs.uk/xml_schema_constraints/cancer_outcomes_and_services_data_set_xml_schema_constraints.html', 'https://lida.leeds.ac.uk/comprehensive-patient-records-2/patient-reported-outcome-measures/', 'https://lida.leeds.ac.uk/wp-content/uploads/2017/01/Data-Flow-Protocol-V3.pdf', 'https://www.hra.nhs.uk/planning-and-improving-research/application-summaries/research-summaries/comprehensive-patient-records-for-cancer-outcomes/', 'https://www.health.org.uk/funding-and-partnerships/programmes/augur-an-open-source-interactive-cancer-analytics-web-app', 'https://lida.leeds.ac.uk/adam-glaser/', 'https://www.researchgate.net/publication/336720985_Comprehensive_Patient_Records_CPR_Study_Workstream_5_Protocol_and_Methods_-_Patient_reported_costs_of_living_with_and_beyond_cancer', 'https://www.data-can.org.uk/datasets'], 'isPartOf': 'NOT APPLICABLE'}",a337845e-1dde-445b-90cf-91d8b825e3a5,https://web.www.healthdatagateway.org/dataset/a337845e-1dde-445b-90cf-91d8b825e3a5,"{'access': {'dataProcessor': 'Leeds Institute for Data Analytics', 'dataController': 'Leeds Teaching Hospital Trust', 'accessRequestCost': 'This has not yet been defined and will be developed on a case by case basis initially.', 'accessRights': ['In Progress'], 'accessService': 'The Data Access will be from securely linked  primary- and secondary-care data, non-identifiable patient information from GP surgeries, community care units and hospital records repository, eg Leeds Teaching Hospitals NHS Trust (LTHT) , Data Request and access process.', 'deliveryLeadTime': '2-6 MONTHS', 'jurisdiction': 'GB'}, 'usage': {'resourceCreator': 'Leeds Teaching Hospital Trust (LTHT) are the data controller\nProfessor Geoff Hall and Professor Adam Glaser are the Principal Investigators.', 'isReferencedBy': ['Twelves, Chris, Sue Cheeseman, Will Sopwith, Matthew Thompson, Majid Riaz, Necibe Ahat-Donker, Melissa Myland et al. ""Systemic treatment of hormone receptor positive, human epidermal growth factor 2 negative metastatic breast cancer: retrospective analysis from Leeds Cancer Centre."" BMC cancer 20, no. 1 (2020): 53.', 'Cheeseman, Sue & Levick, Bethany & Nam, Eunji & Lim, Subin & Rouzier, Roman & Bonneau, Claire & Kubelac, Milan & Achimas-Cadariu, Patriciu & Classe, Jean & Bocquet, Francois & Becker, Sven & Guergova-Kuras, Mariana & Hall, Geoff. (2020). 379 Real world retrospective study of patients with epithelial ovarian cancer: an international comparison. International Journal of Gynecologic Cancer. 30. A75-A76. 10.1136/ijgc-2020-ESGO.129. ', 'Mackay, Helen & Gallagher, Christopher & Parulekar, Wendy & Ledermann, Jonathan & Armstrong, Deborah & Gourley, Charlie & Romero, Ignacio & Feeney, Amanda & Bessette, Paul & Hall, Marcia & Weberpals, Johanne & Hall, Geoff & Lau, Susie & Gauthier, Philippe & Fung, Michael & Eisenhauer, Elizabeth & Winch, Chad & Tu, Dongsheng & Provencher, Diane. (2016). OV21/PETROC: A randomized Gynecologic Cancer Intergroup (GCIG) phase II study of intraperitoneal (IP) versus intravenous (IV) chemotherapy following neoadjuvant chemotherapy and optimal debulking surgery in epithelial ovarian cancer (EOC).. Journal of Clinical Oncology. 34. LBA5503-LBA5503. 10.1200/JCO.2016.34.18_suppl.LBA5503.', 'Clarke, Gemma & Stamp, Elizabeth & Wright, Penny & Velikova, Galina & Bojke, Chris & Martin, Adam & Baxter, Paul & Crossfield, Samantha & Zucker, Kieran & McInerney, Ciarán & Glaser, Adam & Hall, Geoff. (2018). Comprehensive Patient Records (CPR) Study: Workstream 5 Protocol and Methods – Patient reported costs of living with and beyond cancer.', 'Kurniati, Angelina & Hall, Geoff & Hogg, David & Johnson, Owen. (2018). Process mining in oncology using the MIMIC-III dataset. Journal of Physics: Conference Series. 971. 012008. 10.1088/1742-6596/971/1/012008.', 'Pompili, C., Basch, E., Velikova, G. and Mody, G.N., 2021. Electronic Patient-Reported Outcomes After Thoracic Surgery: Toward Better Remote Management of Perioperative Symptoms. Annals of Surgical Oncology, pp.1-2.'], 'investigations': ['https://www.academicgates.com/job/detail/00155d140103-11ea-ef34-e4dba5ee-869a', 'https://euraxess.ec.europa.eu/jobs/556180', 'https://orcid.org/0000-0001-7337-3527', 'https://www.hra.nhs.uk/planning-and-improving-research/application-summaries/research-summaries/comprehensive-patient-records-for-cancer-outcomes/'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'GENETIC STUDIES ONLY', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY', 'NO LINKAGE'], 'dataUseRequirements': ['COLLABORATION REQUIRED', 'ETHICS APPROVAL REQUIRED']}, 'formatAndStandards': {'conformsTo': ['DICOM', 'NHS DATA DICTIONARY'], 'language': 'en', 'vocabularyEncodingScheme': 'ICD10', 'format': ['text/csv', 'text/xml']}}","{'origin': {'purpose': 'STUDY', 'source': ['EPR', 'OTHER'], 'collectionSituation': 'PRIMARY CARE'}, 'temporal': {'accrualPeriodicity': 'STATIC', 'distributionReleaseDate': '2018-12-01', 'startDate': '2008-01-01', 'endDate': '2018-12-01', 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"{'title': 'HDR UK Papers & Preprints', 'publisher': {'identifier': '5f7b1a2bce9f65e6ed83e7da', 'name': 'HEALTH DATA RESEARCH UK', 'memberOf': 'OTHER'}, 'contactPoint': 'susheel.varma@hdruk.ac.uk', 'abstract': 'Publications that mention HDR-UK (or any variant thereof) in Acknowledgements or Author Affiliations.', 'keywords': ['Preprints', 'Papers', 'HDR UK'], 'doiName': '10.1093/ije/dyx196'}",fd8d0743-344a-4758-bb97-f8ad84a37357,"{'typicalAgeRange': '0-0', 'followup': 'UNKNOWN', 'pathway': 'NOT APPLICABLE', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/countries/GB/united-kingdom.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'd5faf9c6-6c34-46d7-93c4-7706a5436ed9', '17.0.0': 'a34797cd-4ee8-4f79-8c90-cda08b48bf3d', '0.0.1': '9e798632-442a-427b-8d0e-456f754d28dc', '2.0.0': 'a7ddefbd-31d9-4703-a738-256e4689f76a', '4.0.0': 'a5f20b6e-a8ab-4725-add5-49faafb0da94', '3.0.0': '099939e6-773d-4ec7-a479-900f54a5846f', '5.0.0': '41be1523-e9be-49fd-9c40-b31e84c2b795', '6.0.0': '35aad4fa-6550-481b-95bb-83d71d6fd4d9', '8.0.0': 'fa1eb6da-697c-48dc-9a6f-e82033db04ba', '10.0.0': 'e6d31775-961b-457f-886c-1c0672308a55', '9.0.0': '0e9ea32d-99a0-4471-81a8-f22af867ce1f', '16.0.0': 'b51d5bbd-7e85-40f5-a54b-e6b2ee8d7e8c', '7.0.0': '0924c823-14a7-457d-93e6-3df286c1d72e', '15.0.0': '8d036b7b-56ab-4168-9dc8-82a809778593', 'latest': 'a34797cd-4ee8-4f79-8c90-cda08b48bf3d'}","{'description': 'Publications that mention HDR-UK (or any variant thereof) in Acknowledgements or Author Affiliations', 'associatedMedia': ['https://github.com/HDRUK/papers'], 'isPartOf': 'NOT APPLICABLE'}",a34797cd-4ee8-4f79-8c90-cda08b48bf3d,https://web.www.healthdatagateway.org/dataset/a34797cd-4ee8-4f79-8c90-cda08b48bf3d,"{'access': {'deliveryLeadTime': 'LESS 1 WEEK', 'accessRequestCost': ['Free'], 'dataController': 'HDR UK', 'accessRights': ['https://raw.githubusercontent.com/HDRUK/papers/master/LICENSE'], 'jurisdiction': ['GB-ENG'], 'accessService': 'https://github.com/HDRUK/papers', 'dataProcessor': 'HDR UK'}, 'formatAndStandards': {'conformsTo': ['OTHER'], 'vocabularyEncodingScheme': ['OTHER'], 'language': ['en'], 'format': ['CSV', 'JSON']}, 'usage': {'investigations': ['https://github.com/HDRUK/papers'], 'isReferencedBy': ['https://doi.org/10.5281/zenodo.326615'], 'resourceCreator': ['HDR UK Science Team'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['RETURN TO DATABASE OR RESOURCE']}}","{'temporal': {'endDate': '2022-04-30', 'distributionReleaseDate': '2021-12-16', 'timeLag': 'NO TIMELAG', 'startDate': '2020-03-31', 'accrualPeriodicity': 'DAILY'}, 'origin': {'purpose': ['OTHER'], 'collectionSituation': ['OTHER'], 'source': ['MACHINE GENERATED']}}",2020-08-05T14:35:59Z,"[{'observedNode': 'FINDINGS', 'measuredValue': 575, 'disambiguatingDescription': 'Number of papers with affiliation and/or acknowledgement to HDR UK', 'observationDate': '27/11/2020', 'measuredProperty': 'Count'}]",17.0.0,"{'derivation': ['https://web.www.healthdatagateway.org/dataset/fd8d0743-344a-4758-bb97-f8ad84a37357'], 'qualifiedRelation': ['https://web.www.healthdatagateway.org/dataset/fd8d0743-344a-4758-bb97-f8ad84a37357'], 'tools': ['https://github.com/HDRUK/papers']}",2022-06-01T14:15:11Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 15, 'structuralMetadata.columnName': 15, 'structuralMetadata.columnDescription': 15, 'structuralMetadata.dataType': 15, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'fca810ce-b0fc-4a11-8685-822da8ce9c5f', 'description': 'HDR UK Paper and Preprints', 'name': 'papers', 'dataElementsCount': 15, 'dataElements': '423e4793-0d9f-46ed-9f44-d3da273f13ba, ae1507f0-4036-472f-a19d-38c227cd88aa, 7f543fb2-b957-4ef9-b446-11402eded51f, f7e68afd-5c7f-4983-886f-99c22ac9d16b, 2721abaa-23f9-42a3-a8f3-36cdae2fe1a5, 3f61bc12-9135-4f51-a153-c8495a3ad1eb, d626baf8-1888-4068-b0dc-ae58700c067e, c3a6b3b7-de45-4020-ac55-3e7225ffcb0e, 17108c12-66ca-4f62-96c5-89a89f3cc334, a50fbaf9-0996-4a1d-a8f3-df87263a237f, c6568b9f-6509-4bae-8716-0d65c86b4377, 910f2dc1-efc2-4145-b778-8752c740639e, fa0703f4-0db4-406c-92e6-957802fa451d, bd5a50a0-8231-4f19-b04e-bbbebd95d9aa, b477d52b-ed44-4638-bd28-f5211a18f87c'}]}"
"{'title': 'Peer-led, Professionals Assisted Pulmonary Rehabilitation (PLPAPR): pilot study', 'publisher': {'identifier': '607db9c2e1f9d3704d570ce6', 'name': 'BREATHE', 'memberOf': 'HUB'}, 'abstract': 'A prospective, quasi-experimental-pre-post feasibility trial to test the implementation of a peer-led, professionals assisted pulmonary rehabilitation (PR) programme in a resource limited rural setting in South India.', 'contactPoint': 'RESPIRE@ed.ac.uk', 'keywords': ['RESPIRE', 'Peer', 'Pulmonary Rehabilitation', 'India', 'Professional']}",dec5d8da-2d63-4ab8-927e-4a5a659dc541,"{'pathway': 'The dataset is a follow-up of the participants from the CMC Feasibility trial participants. Thirty patients who required pulmonary rehabilitation and eligible based on the study inclusion and exclusion were recruited. The dataset has a continuous pathway from the feasibility trial with additional components required to show the impact of pulmonary rehabilitation. \nThe patients were followed  up for a period of 8 weeks following the initiation of PR.  The peers visited the patients once weekly in their homes and supervised their exercises twice a week at the centre along with PR professionals.', 'spatial': ['https://www.geonames.org/1269750/republic-of-india.html'], 'typicalAgeRange': '30-99', 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'a41cfa11-ee7f-4ebe-be2a-f1235e34951d'},"{'description': 'In low and middle income countries (LMICs) like India, pulmonary rehabilitation (PR) is sporadically available either at a tertiary care centres or in teaching hospitals located in urban settings. There are several barriers that exist in implementation (labor intensive, time consuming, lack of trained health care professionals, high drop-out rate and cost of rehabilitation) as well as accessing (lack of awareness among CRD patients on PR, unavailability of a PR program and unwilling to spend money on PR) a PR program which hampers the uptake of PR in such settings. Christian Medical College (CMC), Vellore, India, a partner site of RESPIRE research conducted a feasibility intervention trial on chronic respiratory disease (CRD) ""Prevention, detection and treatment of adult lung disease including lung cancer in a poor, rural population in Tamil Nadu: feasibility study in rural south India"". About 1 year through the study, some have reported remarkable improvement to standard treatment and a significant number have shown suboptimal response to standard treatment. With a need to revamp our CRD patients\' health and also to develop a low cost feasible model to endorse and encourage PR in resource-poor settings, the follow-up study was undertaken with the objective to test the feasibility of a peer-led community based comprehensive PR assisted by professionals in a rural Indian setting. Both quantitative and qualitative data were collected to test the feasibility of the study. The quantitative data collected were demographic details, medical history, smoking history, occupation history, hemoglobin level, BMI and treatment details. The baseline and endline assessment included physical activity assessment using the International Physical Activity Questionnaire, activities of daily living using London Chest Activity of Daily Living scale. The nutritional status was assessed using 24 hour recall for a week day and weekend by the Nutritionist. Anxiety and depression was assessed using the Hospital Anxiety and Depression Scale (HADS). Exercise capacity using a six-minute walk test (6-MWT), upper limb strength was assessed using the hand held dynamometer and lower limb endurance was assessed using cycle ergometer. After 8 weeks of pulmonary rehabilitation program, endline assessment was done. The qualitative data was collected at the begining and end of the PR training program. Indepth interviews were conducted among patients and peer volunteers. Data collected was transcribed and translated into English.\n\nAt the end of 8 weeks PR program, thirty patients with chronic respiratory disease should see a significant improvement in exercise capacity (mean difference in 6-minute walk test, 56.35 m; P <0.01), endurance (mean difference in cycling time, 71.4 s; P <0.01), and upper limb strength (mean difference in Hand dynamometer, 5.1 Kg; P <0.01). 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"{'title': 'Care Home Dataset', 'publisher': {'memberOf': 'ALLIANCE', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'name': 'SAIL'}, 'doiName': 'In Progress', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'abstract': 'This database contains residential and geographical information data about care homes in Wales.', 'keywords': ['CARE', 'SAIL']}",aae02f9e-1bad-415d-9730-c46a07a990aa,"{'spatial': 'Wales', 'followup': 'OTHER', 'pathway': 'Secondary care', 'typicalAgeRange': '65-85', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '1d2e3cc0-4f55-47de-9e19-98a1667cf6af', '2.0.0': 'a45acd02-82d7-4bfe-9845-6b4df683bba8', '0.0.1': '700e984c-74b5-4353-bf1a-c16600a5190d', 'latest': 'a45acd02-82d7-4bfe-9845-6b4df683bba8'}","{'description': 'This database contains residential and geographical information data about care homes in Wales.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/ ', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://www.youtube.com/watch?v=ZK9-Jw3uVkw ', 'https://saildatabank.com/'], 'isPartOf': 'NOT APPLICABLE'}",a45acd02-82d7-4bfe-9845-6b4df683bba8,https://web.www.healthdatagateway.org/dataset/a45acd02-82d7-4bfe-9845-6b4df683bba8,"{'formatAndStandards': {'format': ['SQL database table'], 'conformsTo': 'LOCAL', 'vocabularyEncodingScheme': 'LOCAL', 'language': 'en'}, 'access': {'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). 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"{'title': 'NIHR IBD BioResource: Demographic', 'contactPoint': 'nbr@bioresource.nihr.ac.uk', 'abstract': 'The NIHR IBD BioResource acquires broad demographics – e.g. age, sex, ethnicity - from participants at recruitment.  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"{'title': 'Paediatric Intensive Care Audit Network - core dataset (referral)', 'keywords': ['Core', 'Paediatric', 'PICANet', 'Refferal', 'PICU', 'Audit'], 'publisher': {'name': 'HQIP', 'contactPoint': 'DataSharing@hqip.org.uk', 'memberOf': 'ALLIANCE'}, 'abstract': 'PICANet records treatment of all critically ill children in paediatric intensive care units (PICUs). This dataset records requests for transport within the PIC service and/or a PICU admission when clinicians agree on requirement.', 'contactPoint': 'DataSharing@hqip.org.uk'}",79ae4881-6223-471a-a278-6b2d3b84f971,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'c77271cf-1637-4231-aecd-879529587e88', '3.0.0': 'a513dd3b-7e58-4d7f-8164-0a4dbe0a96c0', '1.0.0': '91412d6b-b713-439b-82bc-33b0a85f521f', '2.0.0': '148a3896-e4ed-48ef-8643-48df726041e1', 'latest': 'a513dd3b-7e58-4d7f-8164-0a4dbe0a96c0'}","{'description': 'Paediatric Intensive Care Audit Network (PICANet) is an audit database recording details of the treatment of all critically ill children in paediatric intensive care units (PICUs).  The referral dataset is completed for every patient where there is a request for transport within the PIC service and/or a PICU admission when clinicians agree that the patient requires PIC transport and/or a PICU bed.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",a513dd3b-7e58-4d7f-8164-0a4dbe0a96c0,https://web.www.healthdatagateway.org/dataset/a513dd3b-7e58-4d7f-8164-0a4dbe0a96c0,"{'access': {'jurisdiction': 'GB-GBN', 'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data\nhttps://www.picanet.org.uk/data-collection/data-requests/', 'deliveryLeadTime': 'OTHER'}, 'formatAndStandards': {'language': ['en']}}",,2020-01-13T14:14:59Z,,3.0.0,,2021-04-14T08:09:36Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
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"{'title': 'Air Quality Study: An ecological analysis of asthma health outcomes in Malaysia', 'abstract': 'The aim of the study is to assess the feasibility of using the eDPSEEA (ecosystems-enriched Drivers, Pressures, State, Exposure, Effects, Actions) model in Air Quality RESPIRE projects.', 'publisher': {'memberOf': 'HUB', 'name': 'BREATHE', 'identifier': '607db9c2e1f9d3704d570ce6'}, 'keywords': ['asthma', 'outcomes', 'Malaysia', 'RESPIRE', 'BREATHE', 'air quality'], 'contactPoint': 'RESPIRE@ed.ac.uk'}",95f385b1-4f5c-4a88-8e79-9613acc66938,"{'spatial': ['https://www.geonames.org/1733045/malaysia.html'], 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '1b80d25c-4f0f-497b-8614-4d1a8c4d1cd3', '2.0.0': 'a5b41636-a112-4631-aaee-215bc4cf200e', '1.0.0': '3051829b-bf90-409a-ac6e-7683fe694550', 'latest': 'a5b41636-a112-4631-aaee-215bc4cf200e'}","{'description': 'The aim of the study is to assess the feasibility of using the eDPSEEA (ecosystems-enriched Drivers, Pressures, State, Exposure, Effects, Actions) model in Air Quality RESPIRE projects and pilot the approach to determine the influence of potential environmental factors on asthma events in Malaysia over a 4-year period.\n\nFor further details, see: https://www.ed.ac.uk/usher/respire/chronic-respiratory-disorders/ecological-analysis-asthma', 'associatedMedia': ['https://www.ed.ac.uk/usher/respire/chronic-respiratory-disorders/ecological-analysis-asthma'], 'isPartOf': 'BREATHE'}",a5b41636-a112-4631-aaee-215bc4cf200e,https://web.www.healthdatagateway.org/dataset/a5b41636-a112-4631-aaee-215bc4cf200e,"{'usage': {'resourceCreator': ['RESPIRE Collaboration']}, 'formatAndStandards': {'format': ['text'], 'language': ['en'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL']}, 'access': {'dataProcessor': 'RESPIRE', 'accessService': 'Access is managed on a project-by-project basis. Contact the RESPIRE team:', 'dataController': 'RESPIRE', 'jurisdiction': ['MY'], 'accessRights': ['https://www.ed.ac.uk/usher/respire/about/projects']}}","{'temporal': {'timeLag': 'NOT APPLICABLE', 'accrualPeriodicity': 'STATIC', 'endDate': '2020-12-31', 'startDate': '2019-10-23'}}",2020-09-22T09:56:56Z,[{'observedNode': 'FINDINGS'}],2.0.0,,2021-08-27T09:54:46Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'The Primary-Secondary Care Partnership to Improve Outcomes in Chronic Kidney Disease', 'publisher': {'contactPoint': 'rwlm2@le.ac.uk', 'memberOf': 'ALLIANCE', 'name': 'UNIVERSITY HOSPITALS OF LEICESTER'}, 'keywords': ['Renal', 'GP', 'PSP-CKD', 'Secondary', 'Primary', 'Mortality', 'Kidney', 'Outcomes', 'Cardiovascular', 'Chronic'], 'contactPoint': 'rwlm2@le.ac.uk', 'abstract': 'Cluster randomised controlled trial of chronic kidney disease nurse practitioners in primary care (Nene CCG). Mortality, cardiovascular and endstage renal outcomes available from primary care records and linked with regional endstage renal secondary care.'}",d472a895-8587-4503-956e-3bd66d990979,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '8d791d6f-07ee-439c-8f1f-f9975340a798', '3.0.0': 'a5c088cd-dae6-4c58-b381-a0d273585f4d', '1.0.0': '7f54a097-feaa-47af-84b7-1eda5133ee26', '2.0.0': '05ade19c-75f5-4623-ade6-99fb21c2d4e3', 'latest': 'a5c088cd-dae6-4c58-b381-a0d273585f4d'}","{'description': 'Cluster randomised controlled trial of chronic kidney disease nurse practitioners in primary care. Number of GP practices for trial = 46, Number of anonymised records for trial approimately 23,500. All practices are based in the Nene clinical commisssioning group. Mortality, cardiovascular and endstage renal outcomes (dialysis or kidney transplantation) outcomes are available from primary care records.  Regional secondary care outcomes for endstage renal disease are linked. Linkage for local secondary care outcomes for cardiovascular outcomes is work in progress. Follow-up 3 to 3.5 years for trial. Extended observational follow-up (upto an additional 2.5 years) available for 38 out of 46 practices. Full trial paper published in https://jasn.asnjournals.org/content/30/7/1261.', 'isPartOf': 'Renal'}",a5c088cd-dae6-4c58-b381-a0d273585f4d,https://web.www.healthdatagateway.org/dataset/a5c088cd-dae6-4c58-b381-a0d273585f4d,"{'access': {'jurisdiction': 'GB-ENG', 'accessRights': 'In Progress', 'deliveryLeadTime': 'OTHER'}, 'formatAndStandards': {'language': ['en']}}",,2020-01-13T14:58:45Z,,3.0.0,,2021-02-21T16:21:12Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Patient Medical Card Registration (NI)', 'publisher': {'identifier': '5f89662f7150a1b050be0710', 'name': 'HEALTH AND SOCIAL CARE NORTHERN IRELAND', 'memberOf': 'ALLIANCE'}, 'abstract': 'Record of patients registered with a GP practice in Northern Ireland. The data is sourced from the National Health Application and Infrastructure Services (NHAIS) system and includes information relating to a patient’s age, gender, postcode & GP practice.', 'contactPoint': 'hbs@hscni.net', 'keywords': ['Northern Ireland', 'NCS', 'patient registration', 'medical card', 'population', 'National Core Study', 'COVID-19']}",4e5ba567-c452-4979-8e2e-865f7df20252,"{'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'https://www.geonames.org/2641364/northern-ireland.html', 'pathway': 'This dataset reflects the registration process - initial registration, change of circumstances and deduction from register.', 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '6a520e77-6607-402c-8272-5c3a20271f13', '3.0.0': 'a5d1a44f-9e9d-4c6d-9ce0-53889d579781', '0.0.1': 'ed02be36-22ff-4796-9394-5dd4524fea12', '2.0.0': 'e5e72bf1-8a43-4860-9c9d-7dbf368fb43e', 'latest': 'a5d1a44f-9e9d-4c6d-9ce0-53889d579781'}","{'description': 'In order to access primary care services in Northern Ireland, patients need to register with a GP practice.  Registrations can be divided into different types: first registrations, transfers from other parts of the UK, migrant registrations and service related registrations.  Individual registrations will be deducted from the index of registered patients for a number of reasons including notification of death, emigration, returning to their home country, moving to Great Britain etc.  There may be a lag between a patient presenting themselves at a GP Practice and completion of registration.  This lag may be greater for patients who have to provide additional documentation as proof of entitlement to services.  Similarly for deductions, there may be a lag in removing individuals from the index of registered patients.\n\nGiven the sensitive nature of the data, this dataset is primarily used to identify patient populations and facilitate linkage to other datasets.  Some variables may be provided in aggregated format, for example age may be replaced with age band and postcode replaced with higher level geographical classifications.\n\nGP Cypher codes and Practice numbers will  not be provided.'}",a5d1a44f-9e9d-4c6d-9ce0-53889d579781,https://web.www.healthdatagateway.org/dataset/a5d1a44f-9e9d-4c6d-9ce0-53889d579781,"{'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'format': ['text', 'csv']}, 'usage': {'resourceCreator': ['ACKNOWLEDGEMENT The authors would like to acknowledge the help provided by the staff of the Honest Broker Service (HBS) within the Business Services Organisation Northern Ireland (BSO). The HBS is funded by the BSO and the Department of Health (DoH). The authors alone are responsible for the interpretation of the data and any views or opinions presented are solely those of the author and do not necessarily represent those of the BSO.'], 'dataUseLimitation': ['RESEARCH USE ONLY'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS']}, 'access': {'jurisdiction': ['GB-NIR'], 'dataProcessor': 'HSC Honest Broker Service', 'accessRequestCost': ['http://www.hscbusiness.hscni.net/pdf/Researcher%20Pack.zip'], 'dataController': 'Business Services Organisation (BSO)', 'accessRights': ['http://www.hscbusiness.hscni.net/services/2454.htm'], 'accessService': 'Remote access can now be granted via an HSCNI tenancy of the UK Secure e-Research Platform (UK SeRP), the HBS still offer the physical safe setting in Belfast for local research.', 'deliveryLeadTime': '1-2 MONTHS'}}","{'temporal': {'timeLag': '2-6 MONTHS', 'startDate': '2015-04-01', 'accrualPeriodicity': 'IRREGULAR'}, 'origin': {'collectionSituation': ['PRIMARY CARE'], 'purpose': ['ADMINISTRATIVE'], 'source': ['OTHER']}}",2021-02-23T18:35:28Z,"[{'observedNode': 'PERSONS', 'measuredValue': '2000000', 'disambiguatingDescription': 'Approximately 2 million patients registered with a GP annually', 'observationDate': '22/06/2021', 'measuredProperty': 'Count'}]",3.0.0,{'derivation': ['unknown']},2021-06-28T14:31:14Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 3, 'structuralMetadata.tableName': 3, 'structuralMetadata.tableDescription': 3, 'structuralMetadata.dataElementsCount': 11, 'structuralMetadata.columnName': 11, 'structuralMetadata.columnDescription': 11, 'structuralMetadata.dataType': 11, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'e3b26e7c-9447-41df-9a00-b2d12af7ef71', 'description': 'Quarterly snapshot of GP registrations.', 'name': 'medical.dbo.otol', 'dataElementsCount': 7, 'dataElements': '1291e724-453f-4b56-93c6-7f8a06a99ff2, 1507b7dc-3a20-4246-b1d1-6332b3146d62, ccb8a476-f14a-418b-a559-56a093592511, 6ddf6a53-a7ef-4545-baa1-978b98f7e550, 0f5e3737-51eb-404c-a91d-e088274d6238, 6d0a25cc-8c2d-49ce-83a2-90f46da4e733, 2d8b5288-d69f-4ce6-815b-9749fb082530'}, {'id': '76099f58-2896-4241-acd6-3eee7afcd7a8', 'description': 'Quarterly record of patients were in residential care', 'name': 'medical.dbo.PNH_ever', 'dataElementsCount': 1, 'dataElements': 'c51c6117-3b90-423e-a089-12bde1a57dec'}, {'id': '05fabe54-b092-47bb-8a4b-04082b65f3c3', 'description': 'Quarterly update of all patients that have been deducted from the GP Patient Registration System.', 'name': 'medical.dbo.deducted_person', 'dataElementsCount': 3, 'dataElements': 'd10d6bfd-651d-4ca1-8a09-c7885de56a10, 498245cd-64fa-4c8b-b485-927b84ca2449, 94cecbe2-55c1-4e39-9644-04d898d45e5a'}]}"
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"{'title': 'plasmaMATCH', 'publisher': {'contactPoint': 'plasmamatch-icrctsu@icr.ac.uk', 'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY'}, 'abstract': 'Collection of samples and data across the following diseases: Malignant tumour of breast.', 'doiName': 'Not Available', 'keywords': ['plasmaMATCH', 'Malignant tumour of breast', 'UKCRC Tissue Directory'], 'contactPoint': 'plasmamatch-icrctsu@icr.ac.uk'}",5618f65d-23fc-4bd5-9a4c-73e4b330c3a6,"{'physicalSampleAvailability': ['IN PROGRESS'], 'spatial': 'England', 'typicalAgeRange': 'Not Known'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '58f2a38d-b3a8-4845-8287-eb03511fa4d2', '3.0.0': 'a6472a29-17db-477c-bb6e-264686c8fc26', '1.0.0': '0c9a2031-f71a-498f-afcd-45a3e23e8363', '2.0.0': 'a617a37d-1813-49ad-8282-38169981a095', 'latest': 'a6472a29-17db-477c-bb6e-264686c8fc26'}","{'description': 'The UK plasma based Molecular profiling of Advanced breast cancer to inform Therapeutic Choices (plasmaMATCH) Trial: \nA multiple parallel cohort,  open-label, multi-centre phase IIa clinical trial aiming to provide proof of principle efficacy for designated targeted therapies in patients with advanced breast cancer where the targetable mutation is identified through ctDNA screening.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",a6472a29-17db-477c-bb6e-264686c8fc26,https://web.www.healthdatagateway.org/dataset/a6472a29-17db-477c-bb6e-264686c8fc26,"{'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}, 'access': {'jurisdiction': 'GB-ENG', 'accessRights': 'Please contact the publisher using Contact Point details provided.', 'accessRequestCost': 'Not specified', 'dataProcessor': 'Not Applicable', 'dataController': 'The Institute of Cancer Research and The Royal Marsden NHS Foundation Trust', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED.'}, 'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2016-01-01'}}",2020-01-13T17:16:36Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:11:09Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Child Health Systems Programme - First Visit', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '5f8992a97150a1b050be0712', 'name': 'PUBLIC HEALTH SCOTLAND'}, 'abstract': ""The Health Visitor First Visit form is generally completed at around 10 days after the birth of the child. 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"{'title': 'National Records of Scotland (NRS) - Births Data', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'PUBLIC HEALTH SCOTLAND', 'identifier': '5f8992a97150a1b050be0712'}, 'contactPoint': 'phs.edris@phs.scot', 'keywords': ['Scotland Births'], 'abstract': 'All Registrations to the National Records of Scotland of live births'}",3b87eef0-bfb6-4bf4-84b9-29880197fec9,"{'typicalAgeRange': '0-4', 'spatial': ['https://www.geonames.org/2638360/scotland.html'], 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '89b9fe12-7c59-4be1-a94a-7bced8535390', '5.0.0': 'a7447f01-c3fd-43f1-8fc4-3e6f3b6e59ef', '1.0.0': 'cd051ddc-b383-4583-aeca-b2e1fe5b17e3', '2.0.0': '7db1c8bd-8d99-4189-8510-e6bdb0e19219', '4.0.0': 'f9505b84-2794-491f-aff2-05fefd16cad5', '3.0.0': '09d6c72a-7d11-4116-8cf8-6b0da9724bd0', 'latest': 'a7447f01-c3fd-43f1-8fc4-3e6f3b6e59ef'}","{'description': 'All Registrations to the National Records of Scotland of live births', 'associatedMedia': ['https://www.nrscotland.gov.uk/statistics-and-data/statistics/statistics-by-theme/vital-events/births'], 'isPartOf': 'Vital Events'}",a7447f01-c3fd-43f1-8fc4-3e6f3b6e59ef,https://web.www.healthdatagateway.org/dataset/a7447f01-c3fd-43f1-8fc4-3e6f3b6e59ef,"{'access': {'accessService': 'Scottish National Data Safe Haven - https://www.isdscotland.org/Products-and-Services/eDRIS/', 'accessRights': ['https://www.informationgovernance.scot.nhs.uk/pbpphsc/', 'https://www.isdscotland.org/Products-and-Services/eDRIS/', 'https://publichealthscotland.scot/contact-us/bespoke-data-analysis-requests/'], 'dataController': 'National Records Scotland', 'dataProcessor': 'National Services Scotland', 'accessRequestCost': ['Research Projects - https://www.isdscotland.org/Products-and-Services/eDRIS/', 'Bespoke data analysis requests - https://publichealthscotland.scot/contact-us/bespoke-data-analysis-requests/'], 'jurisdiction': ['GB-GBN'], 'deliveryLeadTime': 'VARIABLE'}, 'formatAndStandards': {'language': ['en'], 'conformsTo': ['OTHER'], 'format': ['text/csv'], 'vocabularyEncodingScheme': ['OTHER']}, 'usage': {'resourceCreator': ['National Records Scotland'], 'isReferencedBy': ['https://www.nrscotland.gov.uk/statistics-and-data/statistics/statistics-by-theme/vital-events/general-publications/vital-events-reference-tables']}}","{'temporal': {'startDate': '1981-01-01', 'accrualPeriodicity': 'MONTHLY', 'timeLag': 'OTHER', 'distributionReleaseDate': '2020-09-01'}}",2020-01-10T22:06:52Z,"[{'observedNode': 'EVENTS', 'measuredValue': '2355051', 'disambiguatingDescription': 'Births', 'observationDate': '17/01/2021', 'measuredProperty': 'count'}]",5.0.0,{'qualifiedRelation': ['Scottish Longitudinal Study']},2021-10-28T14:41:36Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'The 1970 British Cohort Study (BCS70)', 'keywords': ['BCS70', 'Mental Health', 'Physical Measures', 'Cognitive', 'Longitudinal', 'COVID-19', 'DATAMIND'], 'abstract': 'The 1970 British Cohort Study (BCS70) is following the lives of around 17,000 people born in England, Scotland and Wales in a single week of 1970.', 'publisher': {'name': 'DATAMIND', 'identifier': '61800787f4dde0c2a01e1ea2', 'memberOf': 'HUBS'}}",929186f3-e230-4b52-a9f5-0c20af7f5ce2,"{'followup': '> 10 YEARS', 'typicalAgeRange': '0-51', 'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2638360/scotland.html', 'https://www.geonames.org/2634895/wales.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'a8364fd6-2247-4ef0-af8c-51c7b3ec24cd'},"{'description': 'The 1970 British Cohort Study (BCS70) follows the lives of more than 17,000 people born in England, Scotland and Wales in a single week of 1970. Over the course of cohort members lives, the BCS70 has collected information on health, physical, educational and social development, and economic circumstances among other factors.\n\nSince the birth survey in 1970, there have been eight ‘sweeps’ of all cohort members at ages 5, 10, 16, 26, 30, 34, 38, 42 and 46. A new sweep of the cohort is planned at age 51.\n\nThe main data collection methods used during the study have included questionnaires, cognitive assessments, clinical assessments and nurse measurements.\n\nQuestionnaires have been used to gather a variety of information about study members, including social and family background, mental health and wellbeing, income and housing, and marriage and employment status. Cognitive assessments have measured verbal and language ability in early childhood, as well as literacy and numeracy from adolescence to middle age. Medical examinations and nurse measurements have provided information about different health conditions experienced by the study members, from bone development in childhood to heart problems in middle age. \n\nBy collecting information on various aspects of life, BCS70 has become a vital source of evidence on key policy areas such as social mobility, education, training and employment, and economic insecurity.\n\nBCS70 is part of CLOSER (Cohort & Longitudinal Studies Enhancement Resources) which aims to maximise the use, value and impact of the UK’s longitudinal studies.'}",a8364fd6-2247-4ef0-af8c-51c7b3ec24cd,https://web.www.healthdatagateway.org/dataset/a8364fd6-2247-4ef0-af8c-51c7b3ec24cd,"{'formatAndStandards': {'language': [], 'vocabularyEncodingScheme': []}, 'access': {'accessRights': ['https://cls.ucl.ac.uk/data-access-training/data-access/'], 'jurisdiction': ['GB-GBN'], 'dataController': 'Centre for Longitudinal Studies (CLS)', 'dataProcessor': 'Centre for Longitudinal Studies (CLS)'}}","{'temporal': {'startDate': '1970-01-01', 'accrualPeriodicity': 'OTHER', 'timeLag': 'VARIABLE'}}",2021-11-17T13:29:42Z,"[{'observedNode': 'PERSONS', 'measuredValue': '8581', 'measuredProperty': 'Count', 'observationDate': '01/07/2016'}]",1.0.0,,2021-11-17T13:29:42Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'NIHR BioResource: NHS Trust data', 'keywords': ['BPD', 'NHS', 'PAH', 'PID', 'Primary Immunodeficiency', 'Pulmonary Arterial Hypertension', 'Trusts', 'bleeding', 'platelet', 'thrombotic'], 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d3f', 'name': 'NIHR BIORESOURCE'}, 'abstract': 'Data received as part of the HDR UK Sprint Exemplar project, on up to 1600 participants with one of 3 rare diseases (BPD, PAH, PID) at one of the 5 NHS Trusts (Cambridge, Leeds, Liverpool, Newcastle and Papworth).', 'contactPoint': 'nbr@bioresource.nihr.ac.uk'}",3731006a-ee7c-4d15-bc07-4eeb29a3d031,"{'typicalAgeRange': '18-85', 'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM'], 'spatial': ['England (https://www.geonames.org/6269131/england.html)'], 'followup': '1 - 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'4.0.0': '3f1d93ae-792e-4f0c-8cb7-40413b81e132', '5.0.0': 'a889651d-a26e-4907-86a3-a06d100d13f5', '3.0.0': 'ed34bdfa-1a2f-4375-8024-54410fa08a6c', '2.0.0': '8783d7d2-2b89-44cc-bbc6-645e5483e2fe', '0.0.1': 'e6a3ea22-7875-4fc3-9405-e6e6380c918e', '1.0.0': 'f81e621b-befe-4a61-bf4a-71316d047301', 'latest': 'a889651d-a26e-4907-86a3-a06d100d13f5'}","{'description': 'The NIHR Bioresource consists of several groups of participants: ~70k from the general population and blood donors (COMPARE, INTERVAL and STRIDES studies); ~19k with one of ~50 rare diseases (RD) including a ~5k pilot for GEL; ~30k with Inflammatory Bowel Disease (IBD) which include the members of Gut Reaction, the Health Data Research Hub for IBD; and ~20k with Anxiety or depression (GLAD study). It intends to extend recruitment in all areas, and to other rare and common disease groups, with a target of ~300k by 2022.  NHS Trust data were received as part of the HDR UK Sprint Exemplar project, on up to 1600 participants with one of 3 rare diseases (BPD, PAH, PID) at one of the 5 NHS Trusts (Cambridge, Leeds, Liverpool, Newcastle and Papworth).', 'isPartOf': 'Not Applicable'}",a889651d-a26e-4907-86a3-a06d100d13f5,https://web.www.healthdatagateway.org/dataset/a889651d-a26e-4907-86a3-a06d100d13f5,"{'usage': {'isReferencedBy': ['Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'resourceCreator': ['NIHR BioResource. Acknowledgement text: ""We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.""'], 'dataUseLimitation': ['RESEARCH USE ONLY']}, 'access': {'jurisdiction': ['GB-GBN'], 'accessRights': ['https://bioresource.nihr.ac.uk/using-our-bioresource'], 'accessRequestCost': ['https://bioresource.nihr.ac.uk/using-our-bioresource/industry-researchers/industry-bioresource-usage-costs/'], 'accessService': 'Data may only be accessed in an approved Trustworthy Research Environment', 'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)', 'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)', 'deliveryLeadTime': '2-6 MONTHS'}, 'formatAndStandards': {'format': ['text/csv'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['NHS NATIONAL CODES'], 'language': ['en']}}","{'temporal': {'timeLag': '2-6 MONTHS', 'accrualPeriodicity': 'IRREGULAR'}, 'origin': {'collectionSituation': ['ACCIDENT AND EMERGENCY', 'OUTPATIENTS', 'IN-PATIENTS'], 'purpose': ['STUDY'], 'source': ['EPR']}}",2020-01-13T15:06:28Z,[{}],5.0.0,{'derivation': ['Not Available']},2021-11-25T12:00:43Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Healthcare Workers Risk Assessment', 'doiName': 'In Progress', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'SAIL', 'contactPoint': 'SAILDatabank@swansea.ac.uk'}, 'keywords': ['Risk', 'Risk Assessments', 'SAIL', 'NCS', 'National Core Study', 'COVID-19'], 'abstract': 'This dataset provides limited information about which NHS workers completed Risk Assessments in the course of normal work.', 'contactPoint': 'SAILDatabank@swansea.ac.uk'}",ed131fee-0635-4613-a453-a383d5dd7cec,"{'followup': 'OTHER', 'typicalAgeRange': '0-120', 'pathway': 'Not Available', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'Wales'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'e2f05904-723a-4d5c-8746-7ab3d1d94eef', '2.0.0': 'a8bb670a-b45b-48a6-8e4d-9e8f61de4f5b', '0.0.1': '47108b03-ca80-4311-8090-f474bd880e87', 'latest': 'a8bb670a-b45b-48a6-8e4d-9e8f61de4f5b'}","{'description': 'This dataset provides limited information about which NHS workers completed Risk Assessments in the course of normal work.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/'], 'isPartOf': 'NOT APPLICABLE'}",a8bb670a-b45b-48a6-8e4d-9e8f61de4f5b,https://web.www.healthdatagateway.org/dataset/a8bb670a-b45b-48a6-8e4d-9e8f61de4f5b,"{'formatAndStandards': {'language': 'en', 'format': ['SQL database table'], 'vocabularyEncodingScheme': 'LOCAL', 'conformsTo': 'LOCAL'}, 'access': {'deliveryLeadTime': '2-6 MONTHS', 'accessRequestCost': 'Access request duration depends on scoping and the IGRP process. General estimate ~ 3 months.', 'jurisdiction': 'GB', 'dataProcessor': 'Not Available', 'accessRights': ['https://saildatabank.com/application-process/'], 'accessService': 'https://saildatabank.com/application-process/', 'dataController': 'Not Available'}, 'usage': {'isReferencedBy': ['Not Available'], 'dataUseRequirements': 'PROJECT SPECIFIC RESTRICTIONS', 'dataUseLimitation': ['GENERAL RESEARCH USE', 'RESEARCH SPECIFIC RESTRICTIONS'], 'resourceCreator': 'Not Available'}}","{'origin': {'source': ['ELECTRONIC SURVEY', 'OTHER'], 'collectionSituation': ['PRIMARY CARE', 'SERVICES', 'OTHER'], 'purpose': ['STUDY', 'ADMINISTRATIVE']}, 'temporal': {'distributionReleaseDate': '2020-07-29', 'endDate': '2020-07-29', 'accrualPeriodicity': 'MONTHLY', 'timeLag': '2-6 MONTHS', 'startDate': '2020-01-31'}}",2020-09-22T10:00:01Z,"[{'observedNode': 'Persons', 'measuredValue': '116000', 'disambiguatingDescription': '', 'observationDate': '2020-08-31', 'measuredProperty': 'Count'}]",2.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Yes. 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"{'title': 'Paediatric Intensive Care Audit Network - core dataset (transport)', 'contactPoint': 'DataSharing@hqip.org.uk', 'abstract': 'PICANet records details of the treatment of all critically ill children in paediatric intensive care units (PICUs). This dataset includes patient level on the type of transport team, staffing of transport, outcome of transport and critical incidents.', 'publisher': {'contactPoint': 'DataSharing@hqip.org.uk', 'memberOf': 'ALLIANCE', 'name': 'HQIP'}, 'keywords': ['Core', 'Transport', 'Paediatric', 'PICANet', 'PICU', 'Audit']}",45310176-6331-4bdd-bc53-d9194e212a35,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'd596f025-c6f2-4d56-90f8-83bc41b268ed', '3.0.0': 'a8bfd0c4-1aec-47cc-9e45-00a713482fa2', '1.0.0': '0382ff70-f868-4338-a665-84bb5c32d3fc', '2.0.0': '0a418d30-c13c-404a-9f4c-39334d889b9c', 'latest': 'a8bfd0c4-1aec-47cc-9e45-00a713482fa2'}","{'description': 'Paediatric Intensive Care Audit Network (PICANet) is an audit database recording details of the treatment of all critically ill children in paediatric intensive care units (PICUs). The transport dataset includes information at patient level on the type of transport team, staffing of transport, outcome of transport and critical incidents.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",a8bfd0c4-1aec-47cc-9e45-00a713482fa2,https://web.www.healthdatagateway.org/dataset/a8bfd0c4-1aec-47cc-9e45-00a713482fa2,"{'access': {'deliveryLeadTime': 'OTHER', 'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data\nhttps://www.picanet.org.uk/data-collection/data-requests/', 'jurisdiction': 'GB-GBN'}, 'formatAndStandards': {'language': ['en']}}",,2020-01-13T14:14:03Z,,3.0.0,,2021-04-14T08:10:10Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Scottish Immunisation Recall System (SIRS)', 'abstract': 'The primary aim of the Scottish Immunisation & Recall System (SIRS) is to ensure that children under the age of six years receive the appropriate immunisation according to the UK childhood immunisation schedule.', 'publisher': {'name': 'PUBLIC HEALTH SCOTLAND', 'memberOf': 'ALLIANCE', 'identifier': '5f8992a97150a1b050be0712'}, 'keywords': ['Immunisation'], 'contactPoint': 'phs.edris@phs.scot'}",c027d0ca-7c7d-4864-b4dd-8040f4020fbb,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2638360/scotland.html'], 'typicalAgeRange': '5-9'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '38497961-eb75-4236-a2eb-9d2f70aff815', '6.0.0': 'a8c8978f-b5dc-448c-9a03-4d961d79a863', '0.0.1': '455b43cb-ccf3-43b6-8341-744840169126', '3.0.0': 'e9d504fc-4b61-4419-a400-ffda998fc377', '2.0.0': '3b930e97-b8eb-4680-9ad1-db6bccc6e1d8', '5.0.0': 'b05a0353-81ac-4e24-b7f6-ecee71272981', '4.0.0': 'a807ff6d-bdcd-4649-a9d2-b7bc6dfb9a5b', 'latest': 'a8c8978f-b5dc-448c-9a03-4d961d79a863'}","{'description': 'The Scottish Immunisation & Recall System began in 1987 and has been used by all NHS boards since 2002 when it incorporated the GIRS (Grampian Immunisation & Recall System). The primary aim of the Scottish Immunisation & Recall System (SIRS) is to ensure that children under the age of six years receive the appropriate immunisation according to the UK childhood immunisation schedule. SIRS calls children when a scheduled vaccination is due and allows recording of immunisation data. The dataset also includes data on HPV (Human papillomavirus) and the teenage booster immunisations and is used conjunction with the data on the Child Health Surveillance Programme School system (CHSP School) to monitor the uptake of teenage immunisations routinely given in schools.', 'associatedMedia': ['https://www.ndc.scot.nhs.uk/National-Datasets/data.asp?SubID=12'], 'isPartOf': 'Child Health Surveillance Programme (CHSP)'}",a8c8978f-b5dc-448c-9a03-4d961d79a863,https://web.www.healthdatagateway.org/dataset/a8c8978f-b5dc-448c-9a03-4d961d79a863,"{'access': {'accessRequestCost': ['Research Projects - https://www.isdscotland.org/Products-and-Services/eDRIS/', 'Bespoke data analysis requests - https://publichealthscotland.scot/contact-us/bespoke-data-analysis-requests/'], 'dataProcessor': 'National Services Scotland', 'accessRights': ['https://www.informationgovernance.scot.nhs.uk/pbpphsc/', 'https://www.isdscotland.org/Products-and-Services/eDRIS/', 'https://publichealthscotland.scot/contact-us/bespoke-data-analysis-requests/'], 'jurisdiction': ['GB-GBN'], 'accessService': 'Scottish National Data Safe Haven - https://www.isdscotland.org/Products-and-Services/eDRIS/', 'deliveryLeadTime': 'VARIABLE', 'dataController': 'Public Health Scotland'}, 'formatAndStandards': {'conformsTo': ['OTHER'], 'language': ['en'], 'vocabularyEncodingScheme': ['OTHER'], 'format': ['text/csv']}, 'usage': {'resourceCreator': ['National Services Scotland'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'NOT FOR PROFIT USE']}}","{'temporal': {'accrualPeriodicity': 'QUARTERLY', 'startDate': '2002-01-01', 'timeLag': 'OTHER'}}",2020-01-10T22:06:55Z,"[{'observedNode': 'PERSONS', 'measuredValue': '53000', 'disambiguatingDescription': 'Approximate number of children added per year', 'observationDate': '12/02/2021', 'measuredProperty': 'Count'}]",6.0.0,,2021-10-28T14:43:15Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Salford Lung Study', 'publisher': {'name': 'BREATHE', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'memberOf': 'HUB'}, 'abstract': 'Anonymized individual participant data from the Salford Lung Study, annotated CRF, protocol, reporting and analysis plan, dataset specification, associated raw dataset, analysis-ready dataset, and clinical study report are available for research proposals', 'contactPoint': 'share-support@gsk.com', 'keywords': ['BREATHE', 'Asthma Control', 'COPD Exacerbations', 'Pragmatic Trial']}",86838cad-d5d3-4b65-9c37-29b0c8c36309,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '18-91', 'spatial': 'Salford and South Manchester'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '6413c50a-21a4-49ac-8865-b4e59cf42cd6', '2.0.0': 'a8f5117e-7523-452f-abf3-ced72f03cb2e', '0.0.1': '9aca57a9-df02-4a93-b0ba-2f590e4ca818', 'latest': 'a8f5117e-7523-452f-abf3-ced72f03cb2e'}","{'description': 'SLS Asthma - Primary Effectiveness Analysis (PEA) - This population is defined as all ITT subjects (all randomised subjects who receive at least one prescription of study medication [e.g. FF/VI or Usual Care]) who have an ACT total score of < 20 at baseline (Day 0).\nThis population will be based on the treatment to which the subject was randomised.\n\nSLS COPD - Primary Effectiveness Analysis (PEA) - This population comprised all ITT subjects (all randomised subjects who received at least one prescription for study medication [e.g. FF/VI or usual care]  who had at least one moderate/severe exacerbation in the year prior to Visit 2 (randomisation), as recorded on the eCRF.'}",a8f5117e-7523-452f-abf3-ced72f03cb2e,https://web.www.healthdatagateway.org/dataset/a8f5117e-7523-452f-abf3-ced72f03cb2e,"{'access': {'deliveryLeadTime': '2-6 MONTHS', 'jurisdiction': 'GB-GBN', 'dataController': 'SHARE (GSK data sharing team)', 'accessRequestCost': 'https://vivli.org/resources/vivli-secure-research-environment-2/', 'accessRights': ['www.clinicalstudydatarequest.com', 'https://vivli.org'], 'dataProcessor': 'GSK Biostatistics (Respiratory)', 'accessService': 'Following receipt of a signed Data Sharing Agreement (DSA), Researchers are provided access to anonymised patient-level data and supporting documentation in a secure data access system, known as the SAS Clinical Trial Data Transparency (CTDT) system.'}, 'formatAndStandards': {'conformsTo': 'LOCAL', 'vocabularyEncodingScheme': 'LOCAL', 'format': ['SAS Dataset (.sas7bdat)'], 'language': 'en'}, 'usage': {'dataUseLimitation': 'GENERAL RESEARCH USE', 'isReferencedBy': ['Woodcock, A., Vestbo, J., Bakerly, N.D., New, J., Gibson, J.M., McCorkindale, S., Jones, R., Collier, S., Lay-Flurrie, J., Frith, L., Jacques, L., Fletcher, J.L., Harvey, C., Svedsater, H., Leather, 2017. Effectiveness of fluticasone furoate plus vilanterol on asthma control in clinical practice: an open-label, parallel group, randomised controlled trial. The Lancet 390, 2247–2255. https://doi.org/10.1016/s0140-6736(17)32397-8. - SLS Asthma Primary Paper.', 'Vestbo, J., Leather, D., Diar Bakerly, N., New, J., Gibson, J.M., McCorkindale, S., Collier, S., Crawford, J., Frith, L., Harvey, C., Svedsater, H., Woodcock, A., 2016. Effectiveness of Fluticasone Furoate–Vilanterol for COPD in Clinical Practice. N Engl J Med 375, 1253–1260. https://doi.org/10.1056/nejmoa1608033. - SLS COPD Primary Paper'], 'resourceCreator': 'GSK'}}","{'temporal': {'timeLag': 'NOT APPLICABLE', 'endDate': '2016-04-12', 'accrualPeriodicity': 'STATIC', 'distributionReleaseDate': '2016-04-12', 'startDate': '2012-03-13'}, 'origin': {'collectionSituation': 'OTHER', 'purpose': 'STUDY', 'source': 'EPR'}}",2021-01-19T11:22:01Z,,2.0.0,{'derivation': ['Yes  ']},2021-02-12T12:40:26Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Demography, interventions & outcomes of patients with Cerebrovascular Disease', 'publisher': {'contactPoint': 'PIONEER@UHB.NHS.UK', 'name': 'PIONEER', 'memberOf': 'HUB'}, 'contactPoint': 'PIONEER@UHB.NHS.UK', 'keywords': ['Stroke', 'Cerebrovascular event', 'hospital', 'acute care', 'atrial fibrillation', 'hypertension', 'diabetes', 'hypercholesterolaemia', 'ischaemia', 'bleed', 'pre-hospital', 'thrombectomy', 'thrombolysis', 'risk modification', 'dysarthria', 'dysphagia', 'hemiplegia', 'weakness', 'speech and language', 'physiotherapy', 'mortality', 'morbidity', 'multi-morbidity', 'care packages'], 'abstract': 'Patients admitted with a cerebrovascular event.  Granular detail of care pathways.  Multi-morbidity, investigations, interventions and treatments.   Serial physiology, blood biomarkers, physiotherapy, outcome. Deeply phenotyped.'}",ddf7f82f-b453-442d-b562-bb0157593831,"{'spatial': 'West Midlands Region, UK', 'pathway': 'Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.', 'typicalAgeRange': '15-115', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'a9b50e33-9974-4635-8e52-9c9b3cb87eb2'},"{'description': 'PIONEER geography\nThe West Midlands (WM) has a population of 5.9million & includes a diverse ethnic, socio-economic mix. There is a higher than average % of minority ethnic groups. WM has a large number of elderly residents but is the youngest population in the UK. There are particularly high rates of physical inactivity, obesity, smoking & diabetes. WM has a high prevalence of COPD, reflecting the high rates of smoking and industrial exposure. Each day >100,000 people are treated in hospital, see their GP or are cared for by the NHS. This is the SAMBA dataset from 4 NHS hospitals.\nEHR\nUniversity Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & 100 ITU beds. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.\nScope: All patients from 2015 onwards, curated to focus on Stroke. Longitudinal & individually linked, so that the preceding & subsequent health journey can be mapped & healthcare utilisation prior to & after admission understood. The dataset includes highly granular patient demographics, co-morbidities taken from ICD-10 & SNOMED-CT codes. Serial, structured data pertaining to process of care (admissions, wards and discharge outcomes), presenting complaints, therapies, all physiology readings (pulse, temperature, blood pressure, screening for dysphagia, all sample analysis results (urine specimens, blood specimens), all prescribed & administered treatments and all outcomes. \nAvailable supplementary data:  \nMore extensive data including granular serial physiology, bloods, conditions, interventions, treatments. Ambulance, 111, 999 data, synthetic data.\nAvailable supplementary support: \nAnalytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services', 'isPartOf': 'NOT APPLICABLE'}",a9b50e33-9974-4635-8e52-9c9b3cb87eb2,https://web.www.healthdatagateway.org/dataset/a9b50e33-9974-4635-8e52-9c9b3cb87eb2,"{'formatAndStandards': {'language': 'en', 'vocabularyEncodingScheme': ['OPCS4', 'SNOMED CT', 'ICD10'], 'conformsTo': 'LOCAL', 'format': ['SQL']}, 'usage': {'resourceCreator': 'This publication  uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)', 'dataUseRequirements': 'PROJECT SPECIFIC RESTRICTIONS', 'dataUseLimitation': 'GENERAL RESEARCH USE'}, 'access': {'jurisdiction': 'GB-GBN', 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'accessRequestCost': 'https://www.pioneerdatahub.co.uk/data/data-request-process/', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'dataProcessor': 'NOT APPLICABLE', 'deliveryLeadTime': '1-2 MONTHS'}}","{'origin': {'source': 'EPR', 'purpose': 'CARE', 'collectionSituation': ['ACCIDENT AND EMERGENCY', 'IN-PATIENTS']}, 'temporal': {'timeLag': 'LESS 1 WEEK', 'accrualPeriodicity': 'QUARTERLY', 'endDate': '2020-12-31', 'startDate': '2015-01-01', 'distributionReleaseDate': '2020-02-16'}}",2021-02-25T15:42:45Z,"[{'observedNode': 'Events', 'measuredValue': '8885 spells in this dataset from 01.01.2015 to 31.12.2020', 'disambiguatingDescription': 'NOT APPLICABLE', 'observationDate': '2020-02-16', 'measuredProperty': 'Count'}]",0.0.1,,2021-02-25T15:40:04Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 14, 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"{'title': 'North West London Primary Care Events Data (NWL PCE)', 'doiName': 'In Progress', 'publisher': {'memberOf': 'HUB', 'contactPoint': 'researchers@registerfordiscover.org.uk', 'name': 'DISCOVER NOW'}, 'contactPoint': 'researchers@registerfordiscover.org.uk', 'keywords': ['General Practice', 'GP', 'Discover-NOW', 'Integrated Care', 'Pathway', 'Real World data', 'Linked longitudinal'], 'abstract': 'The NWL Primary Care Events holds coded interactions between NWL registered patients and GP using EMIS or S1. This includes all clinical and non-clinical events the GPs have recorded for the patient, the data has now got SNOMED codes incorporated.'}",0f930154-0a0e-4bef-9464-59e657b904d6,"{'typicalAgeRange': '0-150', 'pathway': 'The data in this table relates to primary care events which is any interaction between the patient and their registered general practice. All patients are identified by an unique patient key which can be linked with all other datasets available in the Discover-NOW catalogue to understand the patient pathway', 'spatial': 'NHS Brent CCG; NHS Central London CCG; NHS Ealing CCG; NHS Hammersmith &Fulham CCG; NHS Harrow CCG; NHS Hillingdon CCG; NHS Hounslow CCG; NHS West London CCG', 'followup': '> 10 YEARS', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '89e998fa-c6ac-44ef-9972-40b923371332', '5.0.0': 'a9f4a852-a1f2-4041-bb33-3a50e6c43f8d', '4.0.0': '7e6c0a1f-c06f-4e5f-ae2f-93500569c4a5', '3.0.0': 'bc2d2a17-0f36-4cb0-85d3-b54e64460d75', '1.0.0': 'fd65eb18-3fab-4b2a-aeb2-e390fe881888', '0.0.1': '58a545ee-18aa-40a8-88f5-97f6d4f141a1', 'latest': 'a9f4a852-a1f2-4041-bb33-3a50e6c43f8d'}","{'description': 'Organisations we collect information for include:\n\nNHS England - information is used to collect GP payments, based on achievements under the Quality and Outcomes Framework (QOF) and the delivery of quality services\nother government departments - for information about certain medical conditions and GP activity\nuniversities and other organisations - for academic research and services such as screening programmes\nThe systems that we use to collect data and information include:\n \n\nGeneral Practice Extraction Service (GPES) - used to collect information and data\nCalculating Quality Reporting Service (CQRS) - to record practice participation and to process and display information\nGP clinical systems - to record information at practice level\nWe are responsible for producing and maintaining the extract specification (business rules) to enable the extraction of these services.\n\nInteraction between a patient and the practice they are registered to\n\nAll Appointments data\n\nAll clinical diagnostics data\n\nAll administrative activity related to patients communication with practice\n\nAll test results related to patients\n\nAll screening information related to patients', 'isPartOf': 'PRIMARY CARE', 'associatedMedia': ['https://imperialcollegehealthpartners.com/discover-now/north-west-london-covid-19-data-repository/', 'https://www.nwlondonccgs.nhs.uk/professionals/whole-systems-integrated-care-wsic-dashboards-and-information-sharing/information-de-identified-users']}",a9f4a852-a1f2-4041-bb33-3a50e6c43f8d,https://web.www.healthdatagateway.org/dataset/a9f4a852-a1f2-4041-bb33-3a50e6c43f8d,"{'access': {'deliveryLeadTime': '1-2 MONTHS', 'accessRequestCost': 'In Progress', 'accessService': ""Researchers will have access to a VDI environment with a specific username and password. The researchers will get access to the datasets that is present in the hub's catalogue and would be able to carry out their research within the safe haven. There are restrictions applied which prevents the researchers from taking data out of the safe haven, once the research/analysis is completed the admin team will need to be contacted for taking the analysis off the safe haven"", 'accessRights': ['https://imperialcollegehealthpartners.com/discover-now/nwl-covid-data-access/'], 'jurisdiction': 'GB', 'dataController': 'Joint data controller model across North West London', 'dataProcessor': 'NHS BRENT CCG'}, 'formatAndStandards': {'vocabularyEncodingScheme': ['READ', 'SNOMED CT'], 'format': ['Excel', 'SQL', 'Tableau', 'R'], 'language': 'en', 'conformsTo': 'LOCAL'}, 'usage': {'resourceCreator': 'NHS Brent CCG', 'dataUseLimitation': 'NO RESTRICTION', 'investigations': ['https://www.registerfordiscover.org.uk/researchers/discover-for-researchers-and-industry'], 'dataUseRequirements': ['COLLABORATION REQUIRED', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'isReferencedBy': ['Bottleet al. BMC Medical Informatics and Decision Making (2020) 20:71 https://doi.org/10.1186/s12911-020-1082-7']}}","{'origin': {'purpose': ['CARE', 'ADMINISTRATIVE'], 'collectionSituation': 'PRIMARY CARE', 'source': 'EPR'}, 'temporal': {'accrualPeriodicity': 'MONTHLY', 'timeLag': '1-2 MONTHS', 'startDate': '2015-01-01', 'distributionReleaseDate': '2019-12-18'}}",2020-01-10T17:02:20Z,"[{'observedNode': 'Persons', 'measuredValue': ' 2,644,802 ', 'disambiguatingDescription': '', 'observationDate': '2020-12-08', 'measuredProperty': 'Count'}]",5.0.0,"{'qualifiedRelation': ['Each patient will be identified by an unique patient key that can be used to link to all other datasets available within Discover-NOW hub'], 'derivation': ['Long Term Conditions Electronic Frailty Index Q-Admissions Patient Segments Risk Segments']}",2021-03-01T11:01:18Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 18, 'structuralMetadata.columnName': 18, 'structuralMetadata.columnDescription': 18, 'structuralMetadata.dataType': 18, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '3c3f2ae3-7af9-464b-9091-df19395fb4bc', 'description': 'Primary Care Events Activity', 'name': 'Primary Care Events', 'dataElementsCount': 18, 'dataElements': 'f89890c9-bc47-4872-8ba4-2d6e2744f2b2, 23091225-0ef3-4e90-88ac-3657ec55baaf, c6c3cf3c-3bae-4bcb-8015-1d2515319746, d0e6db35-b7ba-406e-ab9c-987e4b6dc4f1, f07cdec8-c653-455d-a706-df0c9b5549c8, 4560cf7c-1a1d-433f-a98d-b1e99aa56686, 8b1a01b9-2abc-4241-9476-92bcb3265603, 58d20c51-dc88-4696-9e12-8ebe61ccf47e, 02e5793c-41cd-45d9-ac01-e9ab0b6b19d4, 7b81e584-9192-4837-a0f5-688648cac240, bc21f6be-0f39-4aa2-9741-a5a7fbc4fc45, 66c0f979-f24d-49ed-bfee-dc4aae0dd1d3, 31a13328-982a-4f07-a238-982981b27f73, b088a34b-c925-4e91-8f8d-fa0c314cb9ff, 5ffa41f8-bfd8-4d62-bc08-9f5068ae291e, 87f2e2a8-da0a-4393-9653-d611053285f0, 09b83d25-5ac9-411f-83ce-59172f38347c, 67681e4c-8be4-42f8-b474-e0e431cc10fd'}]}"
"{'title': 'ONS 2011 Census Wales (CENW)', 'publisher': {'contactPoint': 'SAILDatabank@swansea.ac.uk', 'name': 'SAIL', 'memberOf': 'ALLIANCE'}, 'doiName': 'In Progress', 'keywords': ['SAIL', 'Census', 'Population', 'Resident Population', 'ONS', 'NCS', 'National Core Study', 'COVID-19'], 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'abstract': 'A census in the UK is a count of all people and households. The latest census in the UK was held on 27 March 2011.'}",fc24482c-0f9b-445f-af7a-8598627c3b15,"{'pathway': 'Not Available', 'followup': 'UNKNOWN', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-120', 'spatial': 'Wales'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': 'dbd69f22-2638-42a6-a936-069386e8eb7e', '3.0.0': 'aa1fe6a9-79cc-4afc-bd38-ec0d5e4fc195', '1.0.0': '7d6785fc-e63a-49f3-822b-ac7d115b388f', '0.0.1': 'b1a2126a-640d-4b02-8acd-e5ce5ee454f0', 'latest': 'aa1fe6a9-79cc-4afc-bd38-ec0d5e4fc195'}","{'description': 'Every ten years since 1801 the nation has set aside one day for the census - a count of all people and households. It is the most complete source of information about the population that we have. The latest census was held on Sunday 27 March 2011.\n\nEvery effort is made to include everyone, and that is why the census is so important. It is the only survey which provides a detailed picture of the entire population, and is unique because it covers everyone at the same time and asks the same core questions everywhere. This makes it easy to compare different parts of the country.\n\nThe information the census provides allows central and local government, health authorities and many other organisations to target their resources more effectively and to plan housing, education, health and transport services for years to come.\n\nIn England and Wales, the census is planned and carried out by the Office for National Statistics. Elsewhere in the UK, responsibility lies with the National Records of Scotland and the Northern Ireland Statistics and Research Agency.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/']}",aa1fe6a9-79cc-4afc-bd38-ec0d5e4fc195,https://web.www.healthdatagateway.org/dataset/aa1fe6a9-79cc-4afc-bd38-ec0d5e4fc195,"{'access': {'dataController': 'Office for National Statistics', 'accessRequestCost': 'Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.', 'dataProcessor': 'SAIL Databank', 'jurisdiction': 'GB-WLS', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). 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"{'title': 'Death Registration Data - Provisional Monthly Extracts', 'publisher': {'identifier': '5fc12be363eaab9e68dae76e', 'memberOf': 'NCS', 'name': 'OFFICE FOR NATIONAL STATISTICS'}, 'abstract': 'Provisional monthly death registration data, collected as part of civil registration, providing information on deaths that are registered in England and Wales.', 'contactPoint': 'srs.customer.support@ons.gov.uk', 'keywords': ['COVID-19', 'mortality', 'health', 'NCS', 'CO-CONNECT', 'National Core Study']}",487222b7-5c13-4a92-8b41-044796048720,"{'spatial': ['https://www.geonames.org/6269131/', 'https://www.geonames.org/2634895/'], 'followup': 'OTHER', 'pathway': 'NOT APPLICABLE', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'7.0.0': 'f4442efd-3ec2-4413-b8b8-984df0130f59', '11.0.0': 'aa25e5e4-9d53-4f7b-a7fb-228835f6bfd8', '8.0.0': '224f725d-9180-496a-8bae-3dab0099688f', '10.0.0': '80c33f2d-7408-4b56-9b51-ec0daadb2d5f', '6.0.0': '291d5a75-8e40-46fa-8969-56b22a499ea7', '2.0.0': '5a2b59f8-e20d-4ff4-b209-4710f7aca970', '4.0.0': '9f34263d-ea74-4ddf-84df-b8dedd4baf6d', '5.0.0': 'a28cf3ca-8bad-45bb-bca0-78b4d22fed69', '3.0.0': '242176c9-8f0d-4338-b03b-fac4f4d16439', '1.0.0': 'a984dd41-7959-43ab-b264-2b38c15251c5', '0.0.1': '7c98d956-d1eb-4750-8380-dd646de460c7', 'latest': 'aa25e5e4-9d53-4f7b-a7fb-228835f6bfd8'}","{'description': ""These datasets include all deaths registered in England and Wales for the time periods specified.\nData are supplied to ONS by the Local Registration Service, in partnership with the General Register Office (GRO). Coding for cause of death is carried out according to the World Health Organization (WHO) International Classification of Diseases (ICD-10) and internationally agreed rules, allowing for international comparisons.\n\nDeaths registered in England and Wales to those usually resident outside of England and Wales are included. Deaths registered outside of England and Wales to those usually resident in England and Wales are excluded.\n\nThis dataset was created to provide timely statistics needed for COVID-19 analysis. Therefore, the provisional death registration data is only to be used only for COVID-19 accredited projects.\xa0 The data are provisional, and cover the period 2020-2021. For Death registration data prior to this period, please see 'Death registration data - Finalised Extracts.'"", 'isPartOf': 'ONS, COVID', 'associatedMedia': ['https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/bulletins/monthlymortalityanalysisenglandandwales/april2021']}",aa25e5e4-9d53-4f7b-a7fb-228835f6bfd8,https://web.www.healthdatagateway.org/dataset/aa25e5e4-9d53-4f7b-a7fb-228835f6bfd8,"{'usage': {'dataUseRequirements': ['PUBLICATION REQUIRED', 'ETHICS APPROVAL REQUIRED', 'NOT FOR PROFIT USE', 'PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['RESEARCH USE ONLY']}, 'access': {'accessRights': ['https://www.ons.gov.uk/aboutus/whatwedo/statistics/requestingstatistics/approvedresearcherscheme'], 'accessService': 'The Office for National Statistics Secure Research Service (SRS) gives accredited researchers secure access to de-identified, unpublished data in order to work on research projects for the public good.   Most datasets are available to access through remote access to the SRS. In some instances, the data can only be accessed from an approved safe setting. \nFor more information, visit: https://www.ons.gov.uk/aboutus/whatwedo/statistics/requestingstatistics/approvedresearcherscheme', 'accessRequestCost': ['Available at no cost at the point of use'], 'dataController': 'Office for National Statistics', 'deliveryLeadTime': '1-2 MONTHS', 'jurisdiction': ['GB-GBN'], 'dataProcessor': 'Office for National Statistics'}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'format': ['STATA', 'SPSS'], 'conformsTo': ['LOCAL']}}","{'temporal': {'accrualPeriodicity': 'MONTHLY', 'startDate': '2020-05-01', 'distributionReleaseDate': '2021-07-01', 'timeLag': '1-2 MONTHS'}, 'origin': {'collectionSituation': ['OTHER'], 'source': ['OTHER'], 'purpose': ['OTHER']}}",2020-10-20T08:44:53Z,"[{'observedNode': 'PERSONS', 'measuredValue': '50000', 'disambiguatingDescription': '50,000 observations on average per month', 'observationDate': '30/04/2021', 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Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'dataController': 'SAIL Databank', 'jurisdiction': ['GB-WLS'], 'accessRights': ['https://saildatabank.com/application-process/'], 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). 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"{'title': 'Assessing the eDPSEEA model in seasonal pollen induced asthma in Islamabad', 'publisher': {'name': 'BREATHE', 'identifier': '607db9c2e1f9d3704d570ce6', 'memberOf': 'HUB'}, 'abstract': 'This project aims to assess the feasibility of using the eDPSEEA model in predicting the shedding of paper mulberry pollen which may cause acute asthma.', 'contactPoint': 'RESPIRE@ed.ac.uk', 'keywords': ['Asthma', 'Pollen', 'BREATHE', 'RESPIRE', 'Pakistan']}",bfa012ad-e609-4d15-a824-6d143758ca4d,"{'physicalSampleAvailability': ['AVAILABILITY TO BE CONFIRMED'], 'spatial': 'https://www.geonames.org/1168579/islamic-republic-of-pakistan.html', 'typicalAgeRange': '18-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'3.0.0': '2eef1fc0-6028-435d-a0ed-0d01f8262ca9', '6.0.0': 'aad2340a-ab87-40ee-bfbe-c56adb01fd47', '4.0.0': 'c2548017-7913-40e1-bf98-aaa2e907b0ea', '5.0.0': '9f32d0b5-ad03-4f91-8b3f-104ebb2108f1', '2.0.0': '714b0298-6816-426e-bcad-5de5d6112250', 'latest': 'aad2340a-ab87-40ee-bfbe-c56adb01fd47'}","{'description': 'The eDPSEEA model (ecosystems-enriched Drivers, Pressures, State, Exposure, Effects, Actions) is a\nconceptual framework for an integrated assessment of human and ecosystem health, which facilitates\nan understanding and prediction of complex human-environment and ecosystem interactions.\n\nThis project aims to assess the feasibility of using the eDPSEEA model in predicting the shedding of\npaper mulberry pollen which may cause acute asthma, by collecting pollen data and correlating it with weather and other parameters; while also studying a cohort of sensitised vs non-sensitised asthma patients, and their response to pollen allergens. A modelling exercise in collaboration with German scientists, will help to devise the prediction model, to predict pollen shedding and dispersal up to 3 days prior to the event. This is important to allow patients and other stakeholders to plan for an impending peak of pollen allergy and it’s subsequent associated complications.\n\nThe outcome of this project will help to use the eDPSEEA model in other countries as well, as it is currently being used in Malaysia too. \n\nFor further information, see: https://www.ed.ac.uk/usher/respire/chronic-respiratory-disorders/seasonal-pollen-induced-asthma', 'isPartOf': 'BREATHE'}",aad2340a-ab87-40ee-bfbe-c56adb01fd47,https://web.www.healthdatagateway.org/dataset/aad2340a-ab87-40ee-bfbe-c56adb01fd47,"{'access': {'accessService': 'Access is managed on a project-by-project basis. Please contact the RESPIRE team.', 'dataController': 'RESPIRE', 'accessRights': ['https://ed.ac.uk/usher/respire/about/projects'], 'dataProcessor': 'RESPIRE', 'deliveryLeadTime': 'OTHER', 'jurisdiction': ['PK']}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL'], 'format': ['text'], 'language': ['en']}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': ['RESPIRE Collaboration']}}","{'temporal': {'accrualPeriodicity': 'STATIC', 'endDate': '2021-02-28', 'timeLag': 'NOT APPLICABLE', 'startDate': '2019-09-01'}}",2020-07-21T16:33:29Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '1', 'observationDate': '28/02/2021', 'measuredProperty': 'Count'}]",6.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-08-17T15:32:10Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Weekly SUS ECDS Dataset', 'keywords': ['A&E', 'Accident and Emergency', 'Discover-NOW', 'Integrated Care', 'Pathway', 'Real World data', 'Linked longitudinal', 'Emergency Care', 'Acute', 'acute hospitals', 'acute care', 'Discover'], 'publisher': {'memberOf': 'HUB', 'name': 'DISCOVER NOW', 'identifier': '607db9c3e1f9d3704d570cfa'}, 'abstract': 'The NWL weekly SUS ECDS linked table is a weekly submission from our 4 main providers (Imperial College Healthcare Trust, Hillingdon Hospital, Chelsea & Westminister Hospital and London North West Hospital) and contains records of care in A&E within NWL.', 'contactPoint': 'researchers@registerfordiscover.org.uk'}",f75b02f0-a45f-433a-a669-420c8bd40720,"{'spatial': ['https://www.geonames.org/2646895/hillingdon.html', 'https://www.geonames.org/2634341/city-of-westminster.html', 'https://www.geonames.org/3333157/royal-kensington-and-chelsea.html', 'https://www.geonames.org/3333151/harrow.html', 'https://www.geonames.org/3333132/brent.html', 'https://www.geonames.org/2650567/ealing.html', 'https://www.geonames.org/3333155/hounslow.html', 'https://www.geonames.org/3333149/hammersmith-and-fulham.html'], 'pathway': 'This dataset contains all Emergency Care attendances for NWL patients. Each patient will be identified using an unique patient key, this can be used to link to other Discover-NOW datasets that will help track the patient pathway', 'typicalAgeRange': '0-150', 'followup': '> 10 YEARS', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'ab0f56e2-681f-4e43-b798-94685ddc3c4a'},"{'description': 'Initially this data is collected during a patient\'s time at hospital as part of the Commissioning Data Set (CDS). This is submitted to NHS Digital for processing and is returned to healthcare providers as the Secondary Uses Service (SUS) data set and includes information relating to payment for activity undertaken. It allows hospitals to be paid for the care they deliver. \nThis same data can also be processed and used for non-clinical purposes, such as research and planning health services. Because these uses are not to do with direct patient care, they are called \'secondary uses\'. This is the SUS data set.\nSUS data covers all NHS Clinical Commissioning Groups (CCGs) in England, including:\n1. private patients treated in NHS hospitals\n2. patients resident outside of England\n3. care delivered by treatment centres (including those in the independent sector) funded by the NHS\n\nEach SUS record contains a wide range of information about an individual patient admitted to an NHS hospital, including:\n1. clinical information about diagnoses and operations\n2. patient information, such as age group, gender and ethnicity\n3. administrative information, such as dates and methods of admission and discharge\n4. geographical information such as where patients are treated and the area where they live\n\nNHS Digital apply a strict statistical disclosure control in accordance with the NHS Digital protocol, to all published SUS data. This suppresses small numbers to stop people identifying themselves and others, to ensure that patient confidentiality is maintained.\n\nWho SUS is for\nSUS provides data for the purpose of healthcare analysis to the NHS, government and others including:\n\nThe Secondary Users Service (SUS) database is made up of many data items relating to A&E care\ndelivered by NHS hospitals in England. Many of these items form part of the national Commissioning Data\nSet (CDS), and are generated by the patient administration systems within each hospital.\n1. national bodies and regulators, such as the Department of Health, NHS England, Public Health England, NHS Improvement and the CQC\n2. local Clinical Commissioning Groups (CCGs)\n3. provider organisations\n4. government departments\n5. researchers and commercial healthcare bodies\n6. National Institute for Clinical Excellence (NICE)\n7. patients, service users and carers\n8. the media\n\nUses of the statistics\nThe statistics are known to be used for:\n1. national policy making\n2. benchmarking performance against other hospital providers or CCGs  \n3. academic research\n4. analysing service usage and planning change\n5. providing advice to ministers and answering a wide range of parliamentary questions\n6. national and local press articles\n7. international comparison\n\nMore information can be found at \nhttps://digital.nhs.uk/data-and-information/data-tools-and-services/data-services/hospital-episode-statistics\nhttps://digital.nhs.uk/data-and-information/publications/statistical/hospital-accident--emergency-activity""', 'isPartOf': 'SUS', 'associatedMedia': ['https://imperialcollegehealthpartners.com/discover-now/north-west-london-covid-19-data-repository/', 'https://www.nwlondonccgs.nhs.uk/professionals/whole-systems-integrated-care-wsic-dashboards-and-information-sharing/information-de-identified-users']}",ab0f56e2-681f-4e43-b798-94685ddc3c4a,https://web.www.healthdatagateway.org/dataset/ab0f56e2-681f-4e43-b798-94685ddc3c4a,"{'usage': {'dataUseRequirements': ['COLLABORATION REQUIRED', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'isReferencedBy': ['Bottleet al. BMC Medical Informatics and Decision Making (2020) 20:71 https://doi.org/10.1186/s12911-020-1082-7'], 'resourceCreator': ['NHS Brent CCG', 'NHS NWL CCG', 'Discover-NOW'], 'investigations': ['https://www.registerfordiscover.org.uk/researchers/discover-for-researchers-and-industry'], 'dataUseLimitation': ['NO RESTRICTION']}, 'access': {'accessRights': ['https://imperialcollegehealthpartners.com/discover-now/nwl-covid-data-access/'], 'dataController': 'Joint data controller model across North West London', 'accessService': ""Researchers will have access to a VDI environment with a specific username and password. The researchers will get access to the datasets that is present in the hub's catalogue and would be able to carry out their research within the safe haven. There are restrictions applied which prevents the researchers from taking data out of the safe haven, once the research/analysis is completed the admin team will need to be contacted for taking the analysis off the safe haven"", 'dataProcessor': 'North West London CCG\nNorth East London Commissioning Support Unit', 'jurisdiction': ['GB'], 'deliveryLeadTime': '1-2 MONTHS'}, 'formatAndStandards': {'language': ['en'], 'format': ['Excel', 'SQL', 'Tableau', 'R'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL', 'NHS NATIONAL CODES', 'ODS']}}","{'origin': {'purpose': ['CARE', 'ADMINISTRATIVE'], 'collectionSituation': ['ACCIDENT AND EMERGENCY'], 'source': ['EPR']}, 'temporal': {'distributionReleaseDate': '2021-04-01', 'timeLag': '1-2 WEEKS', 'accrualPeriodicity': 'WEEKLY', 'startDate': '2021-04-01'}}",2022-01-14T10:13:57Z,"[{'observedNode': 'PERSONS', 'observationDate': '29/11/2021', 'measuredProperty': 'Count', 'measuredValue': '291231', 'disambiguatingDescription': 'Distinct patients'}]",2.0.0,"{'qualifiedRelation': ['Each patient will be identified by an unique patient key that can be used to link to all other datasets available within Discover-NOW hub'], 'tools': ['https://nww.analytics.southlondoncsu.nhs.uk/#/site/ICSAnalytics/views/WaitingListPTL/RTTPopulationHealth?:iid=1'], 'derivation': ['Long Term Conditions', 'Electronic Frailty Index', 'Q-Admissions', 'Patient Segments', 'Risk Segments']}",2022-01-14T10:13:57Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 62, 'structuralMetadata.columnName': 62, 'structuralMetadata.columnDescription': 62, 'structuralMetadata.dataType': 62, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'f01d90e0-c2d2-49cc-af98-acf14b61099b', 'description': 'The NWL weekly SUS ECDS linked table is a weekly submission from our 4 main providers (Imperial College Healthcare Trust, Hillingdon Hospital, Chelsea & Westminister Hospital and London North West Hospital) and contains records of care in A&E within NWL.', 'name': 'sus_cds_weekly_ECDS', 'dataElementsCount': 62, 'dataElements': '61afe7d3-949c-41c6-a45e-d9fa8b486445, 2efc0856-eafc-417e-923e-92a4008aca9a, 0cc8513d-49da-4ef3-b5f3-1b904b2adf38, 1c493ec4-f945-4371-a1d3-66d3d9add406, ccf2d455-00f0-4ade-8e2d-33225f76ba6a, 597906b4-83fa-4e29-91d8-27d73902cd3c, e52535d4-d068-4184-bab8-a664853d1b49, f0734e80-810b-4c12-85f5-0cb47bb2aeca, 392359c5-d91d-403a-804a-950a684b2be8, 75edf568-a9e1-487d-adb4-df5f2faef54f, 12574e2f-12a0-45e3-8f73-c5051da0dcf2, 01891834-d70a-4e38-b9e8-36dbbada7bfc, 173aa90e-1a92-4e0c-9def-d8cb984488f8, 374d4d77-0e7e-4921-a497-6057945a3f8e, b5ba5884-5de8-43da-8161-23d93c7da08e, 40b5d785-c138-4cff-9b8d-517942ef308c, e17d6bef-3cb0-4d12-a21d-c6c26a5dbefa, 16053443-d8a0-47d6-86a9-9f487c3e2fd5, 160d6757-5cbd-44a7-b9db-06822a9b4f75, 4b95c185-4866-48b6-876c-4a7b25a1c9b9, 64af74de-1af4-4613-a347-1b5e5350d0dd, 9e235cbe-b657-4d5f-81fd-637c5a020bef, 679d38ae-413c-405e-81d5-4edd42ed5d5c, 7a4f1de5-c595-45c8-98a8-07673e785db6, a061b086-43aa-4722-ad86-92aff9ca5877, bf472a89-bbe8-42d8-88aa-30a9559b8783, d2099ba0-d4b2-4df8-89f9-edcdcb85c1a3, 1463f9be-263f-4c33-978a-f932522ddd25, 05afb1b6-fe40-4ad9-acdc-424b4e7f373e, ba8c9ee3-415f-4737-9bad-ce49e8c464c5, c7ba7e1a-d1bd-4706-aa9c-924f75109a5c, 6eca743c-2c20-4106-90c5-c7acb90060b5, c7c0da3e-6a25-4f6c-9fa3-e5009117142c, b2e1d1c9-8ffe-4250-8356-bff0c819d1cd, 8884933e-6c00-4108-bbe1-22ff2941b9c5, 8a72be83-c75d-493b-a172-4bf7129976df, 49795cd4-d420-456b-a384-944fd2daf4a2, bc68f3d3-0790-44bb-ad9c-47d1f9e25cbd, b102bd63-cddf-42b0-9183-fb2c88aa1bc1, 3b4dec54-5831-481a-873a-d8dec6c2c3c8, f9374299-7e04-4711-a683-67d22fd7cf95, 754a49ee-a874-4395-8f6e-a5aafdd23bf7, fc90c05e-f6b2-4081-ba2f-b4421e89026b, 42e54143-cbd5-4b3c-bdbd-60dad61d300e, fff21426-4235-4d39-9110-6b65c8252477, ce88c32f-3564-461b-9da3-17ca0514a939, e3e2b730-3b21-4543-910e-f66440c670a3, dcaae5c7-4572-4c5d-b397-9a0b684d9a1f, 36e76a9f-5752-4867-9376-a352fafa261b, 60fe862b-9f46-4bd5-9118-8e13888a51ff, 47f09f08-6d40-4a3d-8678-b903a9f1e0b8, 62852a56-55a5-4bbc-b66a-ed8c86eca898, d5a76fa0-e3e1-444c-b990-0ff971cde53d, 167dddb3-5c5d-4f6b-820f-e5479ca1793d, 89f5fabc-46e8-49c9-9476-135e55b2048f, 2f8ce90e-91a4-4633-8690-d3a5d459694d, 44ea9f09-6d6f-4306-8e8a-0d9b75622b9e, 37b67eb0-b64b-4549-8db5-793eaccdec70, 4186a781-50f6-41c0-af6a-6f69ed06d43c, de4ae8db-9f61-43fb-860b-8cac092bd7ef, 253c2aa7-472b-4b8b-b115-ff4e871edff6, a56be2f1-8aba-46a4-90a5-2c15dc28a2a9'}]}"
"{'title': 'Developing Patient and Public Involvement in Research in Malaysia', 'publisher': {'memberOf': 'HUB', 'identifier': '607db9c2e1f9d3704d570ce6', 'name': 'BREATHE'}, 'abstract': 'Patient and public involvement (PPI) in research has gained increasing acceptance worldwide and is a requirement for many research funding and publication agencies. However, the concept of PPI is still novel in Malaysia and the South East Asian region.', 'keywords': ['patient', 'public', 'involvement', 'Malaysia', 'RESPIRE', 'BREATHE'], 'contactPoint': 'RESPIRE@ed.ac.uk'}",153c0ba6-f2ec-4fb4-b5a7-33e11cbdf7fc,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/1733045/malaysia.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '7fe20f78-758d-4449-beb4-ccf98e2d8247', '2.0.0': 'ab2dafd8-b513-4b33-9365-5eb74f32f9d1', '1.0.0': '72098db9-3787-46de-aa54-d9eca7668e82', 'latest': 'ab2dafd8-b513-4b33-9365-5eb74f32f9d1'}","{'description': 'Background: Patient and public involvement (PPI) in research is a movement that has gained increasing acceptance worldwide and is currently a requirement for many research funding and publication agencies. However, the concept of PPI is still novel in Malaysia and the South East Asian region.\nObjective: We aim to explore the development of PPI in our local research namely the RESPIRE project.\n\nFor further information, see: https://www.ed.ac.uk/usher/respire/respire-fellowships/su-may-liew', 'isPartOf': 'BREATHE', 'associatedMedia': ['']}",ab2dafd8-b513-4b33-9365-5eb74f32f9d1,https://web.www.healthdatagateway.org/dataset/ab2dafd8-b513-4b33-9365-5eb74f32f9d1,"{'usage': {'resourceCreator': ['RESPIRE Collaboration']}, 'access': {'dataProcessor': 'RESPIRE', 'dataController': 'RESPIRE', 'jurisdiction': ['MY'], 'accessService': 'Access is managed on a project-by-project basis. Contact the RESPIRE team:', 'accessRights': ['https://www.ed.ac.uk/usher/respire/about/projects']}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'format': ['text']}}","{'temporal': {'accrualPeriodicity': 'STATIC', 'startDate': '2019-07-24', 'timeLag': 'NOT APPLICABLE', 'endDate': '2020-12-21'}}",2020-09-22T09:41:49Z,[{}],2.0.0,,2021-08-27T09:51:23Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'GOAL', 'keywords': ['Pain Hub', 'Alleviate', 'Pain'], 'contactPoint': 'mszav@exmail.nottingham.ac.uk', 'publisher': {'identifier': '607db9c6e1f9d3704d570d93', 'memberOf': 'ALLIANCE', 'name': 'UNIVERSITY OF NOTTINGHAM'}, 'abstract': 'X-rays at baseline for 2000 hip and knee OA patients and 1200 controls, serum and urine samples for all, WOMAC pain questionnaires, follow up pain, QoL, medical history surgery history 10 years later for a subset of n=1200 participants.'}",563c0bfc-437e-4c10-b144-b392d983017c,{'spatial': ['https://www.geonames.org/6269131/england.html']},"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'a517eb87-697e-41ca-9ab8-d59cbe555c47', '2.0.0': 'ab7f482c-42ea-4ddb-8c92-5ecc1be868ce', 'latest': 'ab7f482c-42ea-4ddb-8c92-5ecc1be868ce'}","{'description': 'X-rays at baseline for 2000 hip and knee OA patients and 1200 controls, serum and urine samples for all, WOMAC pain questionnaires, follow up pain, QoL, medical history surgery history 10 years later for a subset of n=1200 participants. Includes age, sex, body mass index, knee or hip OA, history of joint replacement, anxiety, and depression. \n\nCan be used to examine the association between adrenergic blocker prescription and at least moderate joint pain (WOMAC score <75) and use of prescription analgesics', 'associatedMedia': ['https://pubmed.ncbi.nlm.nih.gov/27696728/']}",ab7f482c-42ea-4ddb-8c92-5ecc1be868ce,https://web.www.healthdatagateway.org/dataset/ab7f482c-42ea-4ddb-8c92-5ecc1be868ce,"{'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'format': ['csv'], 'conformsTo': ['LOCAL']}, 'access': {'accessRights': ['https://localhost'], 'jurisdiction': ['GB-ENG'], 'dataController': 'University of Nottingham'}}","{'temporal': {'accrualPeriodicity': 'STATIC', 'timeLag': 'NOT APPLICABLE', 'startDate': '2017-06-01'}}",2021-09-27T15:09:09Z,"[{'observedNode': 'PERSONS', 'measuredValue': '3200', 'observationDate': '27/09/2021', 'measuredProperty': 'Count'}]",2.0.0,,2021-10-11T16:28:06Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Walker Study Data', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d1f', 'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE'}, 'abstract': 'Cohort of over 48,000 birth records (pregnancy, labour, birth and care) in Dundee. Between 1952-1966.  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"{'title': 'Tayside Bowel Screening Dataset', 'publisher': {'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE', 'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d1f'}, 'contactPoint': 'hicsupport@dundee.ac.uk', 'abstract': 'NHS Tayside health board bowel screening program.', 'keywords': ['Scotland', ' Bowel', 'Tayside', 'NHS', 'HIC', 'FIT Test']}",00201dde-1faf-41d3-b282-5c24c0ca3697,"{'followup': 'UNKNOWN', 'typicalAgeRange': '0-150', 'spatial': ['https://www.geonames.org/2636157/tayside-region.html'], 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'c275f19e-2373-43dc-8e83-3318aaf8bfa4', '4.0.0': 'ac7927ca-ef8b-47d7-abce-33a03baaac5c', '2.0.0': '0e80170d-de4f-4349-a879-c54a70262736', '3.0.0': 'c885e039-1c1b-45f7-8acf-79a54fa3ab02', '0.0.1': '08e7f767-81cd-4d21-ae12-14a02db9b3fe', 'latest': 'ac7927ca-ef8b-47d7-abce-33a03baaac5c'}","{'description': 'From NHS Tayside health board bowel sceening program.\nCovers Pilot and Programme period.\nPilot runs from Mar 2000 to mid-2007.\nProgramme runs from 2007 onwards.', 'isPartOf': 'University of Dundee Health Informatics Centre'}",ac7927ca-ef8b-47d7-abce-33a03baaac5c,https://web.www.healthdatagateway.org/dataset/ac7927ca-ef8b-47d7-abce-33a03baaac5c,"{'access': {'deliveryLeadTime': '2-4 WEEKS', 'jurisdiction': ['GB-SCT'], 'accessService': 'HIC has implemented a remote-access Trusted Research Environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details are available via the following link:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/', 'accessRequestCost': ['Quotation available on request'], 'dataProcessor': 'University of Dundee, Health Informatics Centre', 'dataController': 'NHS Tayside', 'accessRights': ['https://www.dundee.ac.uk/hic/governanceapprovalsupport/']}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'format': ['CSV', 'Database']}, 'usage': {'resourceCreator': ['NHS Tayside'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['DISCLOSURE CONTROL']}}","{'origin': {'purpose': ['CARE'], 'source': ['EPR'], 'collectionSituation': ['CLINIC']}, 'temporal': {'timeLag': 'NOT APPLICABLE', 'accrualPeriodicity': 'STATIC', 'distributionReleaseDate': '2021-09-08', 'endDate': '2019-11-01', 'startDate': '2000-04-07'}}",2020-06-03T12:57:19Z,"[{'observedNode': 'PERSONS', 'measuredValue': '158000', 'disambiguatingDescription': '158,000 patients in dataset', 'observationDate': '08/09/2021', 'measuredProperty': 'Count'}, {'observedNode': 'EVENTS', 'measuredValue': '659000', 'disambiguatingDescription': '659,000 records in the dataset', 'observationDate': '11/11/2021', 'measuredProperty': 'Count'}]",4.0.0,,2021-11-19T16:00:08Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 43, 'structuralMetadata.columnName': 43, 'structuralMetadata.columnDescription': 43, 'structuralMetadata.dataType': 43, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '8e1b1f23-78c9-4a48-86ab-1310b7af9687', 'description': 'Covers Pilot and Programme period.  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"{'title': 'COVID-19 SARI-Watch (formerly CHESS)', 'contactPoint': 'enquiries@nhsdigital.nhs.uk', 'keywords': ['COVID-19 Hospitalisation in England Surveillance System', ' ICU', 'High Dependency', 'HOSPITALISATION', 'TESTING', 'LABORATORY', 'RISK', 'OUTCOME', 'TREATMENT', 'National Core Study', 'COVID-19', 'NCS'], 'abstract': 'Data forming the COVID-19 SARI-Watch data set (formerly CHESS) relate to demographic, risk factor, treatment, & outcome information for patients admitted to hospital with a confirmed COVID-19 diagnosis, as recorded in the COVID-19 SARI-Watch surveillance', 'publisher': {'name': 'NHS DIGITAL', 'memberOf': 'ALLIANCE', 'contactPoint': 'enquiries@nhsdigital.nhs.uk'}}",f61f116d-f732-450e-9d34-c6ae00e3fd1e,"{'followup': 'UNKNOWN', 'pathway': 'NOT APPLICABLE', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 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COVID-19 by health and social care bodies and the Government, including providing information to the public about COVID-19 and its effectiveness, and information about capacity, medicines, equipment, supplies, services and the workforce within the health services and adult social care services \n•research and planning in relation to COVID-19, such as providing COVID-19 diagnosis.\n\nTimescales for dissemination can be found under 'Our Service Levels' at the following link: https://digital.nhs.uk/services/data-access-request-service-dars/data-access-request-service-dars-process [Standard wording]\n\nNHS Digital will only disseminate SARI-Watch data collected from PHE where the information is linked to other information controlled by NHS Digital."", 'associatedMedia': ['https://digital.nhs.uk/about-nhs-digital/corporate-information-and-documents/directions-and-data-provision-notices/data-provision-notices-dpns/sgss-and-chess-data'], 'isPartOf': 'NOT 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"{'title': ""2019 UK Parkinson's Audit - Elderly care and neurology"", 'contactPoint': 'audit@parkinsons.org.uk', 'publisher': {'identifier': '60a630c77dd392a16e228a92', 'memberOf': 'ALLIANCE', 'name': 'PARKINSONS UK'}, 'keywords': ['Secondary care', 'geriatrician', 'neurologist', ""Parkinson's specialist nurse"", 'patient management'], 'abstract': ""The dataset contains data provided by specialist elderly care and neurology services on the configuration of their service (service audit) and on the care provided to individual patients in connection with their Parkinson's (patient audit)""}",0cac3870-dd13-44fc-97c2-4bdb67550b39,"{'typicalAgeRange': '20-99', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': '6 - 12 MONTHS', 'pathway': 'Single specialty - either elderly care or neurology (non acute), secondary care and community services', 'spatial': 'https://www.geonames.org/countries/GB/united-kingdom.html'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'ad5dd22c-f6e1-4338-9d4e-80e4b9ec8f26'},"{'description': ""The UK Parkinson’s Audit assesses care provided to people with Parkinson's by a range of clinical specialities against evidence-based guidelines.\n\nThe audit of patient management covers elderly care and neurology services and the routine care they provide to people in connection with their Parkinson’s. Services submit data on their model of service delivery and the assessments which are routinely carried out (service audit) and data on the care provided over the last 12 months to at least twenty of their consecutive patients seen during the five-month data collection period (patient audit). No patient identifiers are collected. \n\nThe audit is open to services across the UK which see patients for the routine review of their Parkinson’s - secondary care (non-acute) and community services. A service is self-defined - for example an individual consultant, a consultant and a specialist nurse, a group of consultants seeing the same cohort of patients, or a specialist nurse working in a community setting. There can therefore be more than one service taking part in any Trust or hospital.\n\nThe 2019 audit includes data from 266 elderly care and neurology services covering 6256 patient cases.\n\nThe data is available by UK Parkinson’s Excellence Network region. The UK Parkinson's Excellence Network is a network of health and social care professionals working to improve Parkinson's services administered with support from Parkinson’s UK. Professionals can join the Network to access resources, increase their knowledge of Parkinson's and collaborate with people affected by Parkinson's to transform health and care services. \n\nThe audit is the recognised quality improvement tool for the Excellence Network, providing an important baseline against which progress can be measured,  informing national, regional and local service improvement priorities and plans to achieve better services for people living with the condition. \n\nThe regions are: \n\nEngland:\nCheshire and Merseyside\nEast of England\nEast Midlands\nGreater Manchester, Lancashire and South Cumbria\nLondon\nNorth East and Cumbria\nPeninsula\nSouth East Coast\nSouth West\nThames Valley\nWessex\nWest Midlands\nYorkshire and Humber\n\nScotland:\nNorth Scotland\nSouth and East Scotland\nWest Scotland\n\nNorthern Ireland:\nNorthern Ireland\n\nWales:\nNorth and Mid Wales\nSouth Wales\n\nOther:\nGuernsey\nIsle of Man\nRepublic of Ireland\n\nInformation about the regions can be found here:  https://www.parkinsons.org.uk/professionals/local-parkinsons-excellence-network-groups"", 'associatedMedia': ['https://www.parkinsons.org.uk/professionals/uk-parkinsons-audit-transforming-care'], 'isPartOf': ""2019 UK Parkinson's Audit""}",ad5dd22c-f6e1-4338-9d4e-80e4b9ec8f26,https://web.www.healthdatagateway.org/dataset/ad5dd22c-f6e1-4338-9d4e-80e4b9ec8f26,"{'formatAndStandards': {'language': ['en'], 'format': ['Text'], 'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL']}, 'access': {'accessRights': ['http://parkinsons.org.uk/HDRUK'], 'accessService': ""The audit team at Parkinson's UK will respond to all requests for access to this data within 5 working days."", 'jurisdiction': ['GB-GB'], 'dataController': ""Parkinson's UK"", 'deliveryLeadTime': '2-4 WEEKS'}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': [""Parkinson's UK""]}}","{'temporal': {'accrualPeriodicity': 'OTHER', 'timeLag': 'NOT APPLICABLE', 'endDate': 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"{'title': 'IBD NIHR BioResource: Contact detail', 'keywords': [""Crohn's"", 'IBD', 'colitis', 'recall'], 'publisher': {'memberOf': 'HUB', 'contactPoint': 'nbr@bioresource.nihr.ac.uk', 'name': 'GUT REACTION'}, 'abstract': 'The NIHR BioResource acquires contact details - name, address, email address, phone/mobile number - from participants at recruitment. This is used to recontact participants to invite them to take part in experimental medicine studies.', 'contactPoint': 'nbr@bioresource.nihr.ac.uk'}",02ddc5c9-03d4-40e4-9934-e60817ec8f3e,"{'followup': '1 - 10 YEARS', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '18-85', 'spatial': 'United Kingdom (https://www.geonames.org/2635167/united-kingdom.html)'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'4.0.0': 'aeb933f8-83fa-410f-8858-0a29586a199c', '5.0.0': 'ad638da8-366b-481f-995e-fc326301eb16', '3.0.0': '62fc43ed-1198-4769-ad39-a0bc2c05fd47', '0.0.1': 'a4299d68-33e6-48af-bee3-375a6c2e9ca0', '2.0.0': '2e986f12-6195-4cb8-ab71-80f4a60619e6', '1.0.0': '23dc6dd4-53ca-4882-87b1-f49f42e78adf', 'latest': 'ad638da8-366b-481f-995e-fc326301eb16'}","{'description': 'The NIHR IBD Bioresource comprises ~30k participants with Inflammatory Bowel Disease (IBD), which include the members of the HDR UK IBD Hub. The NIHR BioResource acquires contact details - name, address, email address, phone/mobile number - from participants at recruitment. This is used to recontact participants to invite them to take part in experimental medicine studies, although sample-only and data-only studies are permitted. We also record NHS number, where known, to allow linkage to healthcare records. Recruitment takes place at disease clinics. A participant is not considered a member of the NIHR BioResource without contact details.', 'isPartOf': 'Not Applicable'}",ad638da8-366b-481f-995e-fc326301eb16,https://web.www.healthdatagateway.org/dataset/ad638da8-366b-481f-995e-fc326301eb16,"{'access': {'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)', 'deliveryLeadTime': 'NOT APPLICABLE', 'jurisdiction': 'GB-GBN', 'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)', 'accessRequestCost': 'https://bioresource.nihr.ac.uk/using-our-bioresource/industry-researchers/industry-bioresource-usage-costs/', 'accessService': 'Some de-identified data may be released to researchers in a platform-independent filetype (e.g. CSV). However, access to any data acquired via NHS Digital is subject to strict restrictions governing where data may be accessed and from which locale - access is currently via an experimental safe haven built in Microsoft Azure.', 'accessRights': ['https://bioresource.nihr.ac.uk/using-our-bioresource']}, 'usage': {'dataUseLimitation': 'RESEARCH SPECIFIC RESTRICTIONS', 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'resourceCreator': 'NIHR BioResource. Acknowledgement text: ""We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. 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"{'title': 'Cardiff School of Dentistry Tooth Bank', 'keywords': ['UKCRC Tissue Directory', 'Cardiff', 'Dental caries (disorder)', 'Tooth', 'Dentistry'], 'publisher': {'contactPoint': 'whitefs@cardiff.ac.uk', 'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE'}, 'abstract': 'Collection of samples and data across the following diseases: Dental caries (disorder)', 'contactPoint': 'whitefs@cardiff.ac.uk', 'doiName': 'Not Available'}",0d4f0103-82d8-43f4-8058-4aec80ea562f,"{'physicalSampleAvailability': ['TISSUE'], 'typicalAgeRange': '6-150', 'spatial': 'Wales'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '05d453e4-727e-487d-98e7-89e6ebbb7b0d', '3.0.0': 'adbee090-9634-455e-9be1-62843158fb08', '1.0.0': 'f4738e6f-b31e-4985-aa04-7504d8fe3667', '2.0.0': '5758964b-1161-48ee-97b5-1e414f406978', 'latest': 'adbee090-9634-455e-9be1-62843158fb08'}","{'description': 'Collection of both deciduous and permanent teeth.  Collection of fresh teeth for extraction of pulpal cells can be arranged.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",adbee090-9634-455e-9be1-62843158fb08,https://web.www.healthdatagateway.org/dataset/adbee090-9634-455e-9be1-62843158fb08,"{'access': {'accessRequestCost': 'Not specified', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'dataProcessor': 'Not Applicable', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'jurisdiction': 'GB-WLS', 'dataController': 'Cardiff University'}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2012-01-01'}}",2020-01-13T17:04:33Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T15:57:42Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'North West London Admitted Patient Care Data (NWL APC)', 'contactPoint': 'researchers@registerfordiscover.org.uk', 'publisher': {'contactPoint': 'researchers@registerfordiscover.org.uk', 'name': 'DISCOVER NOW', 'memberOf': 'HUB'}, 'keywords': ['IP', 'APC', 'Spell', 'Inpatient', 'Episode', 'Discover-NOW', 'Pathway', 'Real World data', 'Linked longitudinal'], 'doiName': 'In Progress', 'abstract': 'The NWL APC linked table is taken from the Secondary Users Service database which contains records of care administered in an APC setting within NWL. Some of the data items included are admission and discharge dates, diagnosis(ICD10) and procedures(OPCS4)'}",788857b5-6a5b-4ec2-825e-d965e291cf45,"{'followup': '> 10 YEARS', 'pathway': 'This dataset contains all inpatient activity for NWL patients. 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"{'title': 'Biobank for patients with retinal degenerations & dystrophies', 'abstract': 'Collection of samples and data across the following diseases: Hereditary retinal dystrophy', 'doiName': 'Not Available', 'publisher': {'name': 'TISSUE DIRECTORY', 'contactPoint': 'david.steel@ncl.ac.uk', 'memberOf': 'ALLIANCE'}, 'keywords': ['UKCRC Tissue Directory', 'Dystrophies', 'Retinal', 'Biobank', 'Degenerations'], 'contactPoint': 'david.steel@ncl.ac.uk'}",cee932f8-151c-4834-ac6d-61d842f9d170,"{'typicalAgeRange': '10-150', 'spatial': 'England', 'physicalSampleAvailability': ['IMMORTALIZED CELL LINES']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '311a1abf-62f4-49ac-b9e8-e0067136757c', '3.0.0': 'ae2022bc-2083-4e57-b825-1fb610d910ee', '2.0.0': 'e678366e-bb53-4dbb-a228-05114e0b6eb3', '0.0.1': '0fe7d419-be95-4a1d-b67c-278c7d7a9362', 'latest': 'ae2022bc-2083-4e57-b825-1fb610d910ee'}","{'description': 'Outer retinal disease is the most common cause of blindness in the UK. It can be caused by a variety of single gene defects, including conditions such as retinitis pigmentosa which often result in early onset blindness in childhood, whilst the risk of age related macular degeneration is caused by a variety of complex multigene defects causing visual loss in later life. Treatments are evolving for both diseases but the underlying pathogenesis and treatment of these diseases  remains elusive. We  have formed the biobank as a repository of fibroblasts (from skin and hair samples) from patients with a variety of retinal diseases that could then be used with induced pluripotent stem cell technology  to investigate causes and new treatments for these conditions.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",ae2022bc-2083-4e57-b825-1fb610d910ee,https://web.www.healthdatagateway.org/dataset/ae2022bc-2083-4e57-b825-1fb610d910ee,"{'access': {'dataProcessor': 'Not Applicable', 'accessRequestCost': 'Not specified', 'jurisdiction': 'GB-ENG', 'dataController': 'Newcastle University', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'accessRights': 'Please contact the publisher using Contact Point details provided'}, 'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}}","{'temporal': {'startDate': '2011-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:04:31Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T15:55:44Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'COVID antigen testing - Pillar 2', 'publisher': {'identifier': '5f89662f7150a1b050be0710', 'name': 'HEALTH AND SOCIAL CARE NORTHERN IRELAND', 'memberOf': 'ALLIANCE'}, 'keywords': ['Northern Ireland', 'COVID-19', 'Antigen', 'Pillar 2', 'NCS', 'Occupation', 'National Core Study'], 'abstract': 'Details of completed (processed) COVID-19 antigen tests booked through the NHS-Digital portals.', 'contactPoint': 'hbs@hscni.net'}",c8f2ee14-2831-445d-a207-2f7f932f4735,"{'pathway': 'Dataset relates to a single type of antigen testing', 'spatial': 'https://www.geonames.org/2641364/northern-ireland.html', 'followup': 'UNKNOWN', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'3.0.0': 'd0d70526-bcfd-4782-a36b-e81d9d693dd4', '4.0.0': 'ae68c3c8-7930-40bd-86e8-7ca1aa6ce57d', '1.0.0': '3e8de4f3-ee1e-4898-a945-0487586c6767', '0.0.1': 'af5caf3f-a8f7-4365-af6e-8d9a59711ad1', '2.0.0': '022cedb4-650d-4566-be41-8d7ed07a5112', 'latest': 'ae68c3c8-7930-40bd-86e8-7ca1aa6ce57d'}",{'description': 'Pillar 2 data is processed by NHS Digital and extracts for NI residents are sent to the NI Public Health Agency.\n\nhttps://www.gov.uk/government/publications/coronavirus-covid-19-testing-data-methodology/covid-19-testing-data-methodology-note'},ae68c3c8-7930-40bd-86e8-7ca1aa6ce57d,https://web.www.healthdatagateway.org/dataset/ae68c3c8-7930-40bd-86e8-7ca1aa6ce57d,"{'usage': {'dataUseLimitation': ['RESEARCH USE ONLY'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'resourceCreator': ['ACKNOWLEDGEMENT The authors would like to acknowledge the help provided by the staff of the Honest Broker Service (HBS) within the Business Services Organisation Northern Ireland (BSO). The HBS is funded by the BSO and the Department of Health (DoH). The authors alone are responsible for the interpretation of the data and any views or opinions presented are solely those of the author and do not necessarily represent those of the BSO.']}, 'access': {'accessRights': ['http://www.hscbusiness.hscni.net/services/2454.htm'], 'accessService': 'Remote access can now be granted via an HSCNI tenancy of the UK Secure e-Research Platform (UK SeRP), the HBS still offer the physical safe setting in Belfast for local research.', 'dataProcessor': 'HSC Honest Broker Service', 'deliveryLeadTime': '1-2 MONTHS', 'dataController': 'Public Health Agency (PHA) NI', 'accessRequestCost': ['http://www.hscbusiness.hscni.net/pdf/Researcher%20Pack.zip'], 'jurisdiction': ['GB-NIR']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'format': ['text', 'csv'], 'conformsTo': ['LOCAL']}}","{'temporal': {'accrualPeriodicity': 'IRREGULAR', 'startDate': '2020-04-28', 'timeLag': '2-6 MONTHS'}, 'origin': {'collectionSituation': ['HOME', 'OTHER'], 'purpose': ['CARE'], 'source': ['LIMS']}}",2020-10-28T15:45:01Z,"[{'observedNode': 'EVENTS', 'measuredValue': '1', 'observationDate': '16/06/2021', 'measuredProperty': 'Count', 'disambiguatingDescription': 'Count of completed (processed) COVID-19 antigen tests booked through the NHS-Digital portals'}]",4.0.0,"{'qualifiedRelation': ['https://web.www.healthdatagateway.org/dataset/1d5b9205-dae4-4b0e-a3d3-04707875edf8'], 'derivation': ['Not Known']}",2021-06-17T15:19:44Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 56, 'structuralMetadata.columnName': 56, 'structuralMetadata.columnDescription': 56, 'structuralMetadata.dataType': 56, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '7f0c1798-408a-4256-8145-63b02bbf9e65', 'description': 'Pillar 2 COVID-19 testing for NI residents', 'name': 'Pillar2', 'dataElementsCount': 56, 'dataElements': 'b5018c94-10fe-4ed4-aaba-80373c65fc00, 5ee47f22-10cd-413d-9948-bbba9ef5b894, ace774ab-fabc-4b7b-ad8e-ac70c6e97534, 7bfba065-623b-48ea-937f-5bd4548b6977, 3428be25-1d9f-4dfa-84c4-6151096a670a, 6a09e0c8-41d0-4479-8276-74bd2ae9d187, b7e663f1-a0b4-4441-bba7-6941f10b1d2f, 801a2bd7-97d7-4556-adc7-c6644f8cbb0d, c3e90a43-e602-4eca-9dc4-5559c957204d, 5b89228c-e4a8-4633-91c8-dd725bae6db7, 20d44c6a-6845-4e7f-9bcb-d9c006deb9b1, 50769a80-b834-4cfb-97b6-a97beefe0aa6, adb48fae-4abd-40e6-9488-db4273cbfbe1, c415a35c-e374-42eb-b311-af75bbfedc06, 00b62fac-a2a2-4fa1-9bb6-ea7a159563cb, 008e1613-a184-4a19-834c-3791916ba7e1, 672aeec2-c381-4d54-a43b-6a0135312eb0, 35863369-be29-4a98-8398-d18193dd6081, 53678a55-fd11-4770-97bb-dd4441b02207, 976b2d4c-c641-40f9-a2a5-b4724cfd5fc7, b8ac0bdb-4b5f-42bd-8de5-9bfdd5824b45, 3e140a4b-f6fa-403e-8a7a-876a5c15d641, d22f3933-176d-44cb-873d-8d9da4c0d85b, 071eae63-dc2e-4ba5-9ef1-87304ec4af02, 643a9ae5-85f1-49fd-acea-35ddb0beeb7f, 0426c07f-223a-4c92-b44a-19a8e634ccf9, 4ab0823e-67be-4f9e-b203-d88ae660bc4c, b90b489b-03b5-4fe5-82a1-4513b0df484f, 8ec717ae-f26a-426f-ac14-534920a90665, 2b7dd975-e322-4565-8689-8a868f5e35eb, 173a0e21-e8a8-41b5-b99b-f3848e66b3d3, 4eb702f6-fa4c-4caa-9024-46e39a380f66, 1c843eb2-ee54-402f-a695-18c086663319, 104020fc-d31c-4b7c-86cd-92be71d17373, 2fa96143-ab54-4440-a8ab-5d731f754931, 2df71379-0287-4364-bfc7-702522e34f50, 9394a72b-9aa5-4157-8896-2c674d6a6dc6, 6357fdd1-a0bd-43e3-b2a0-91e605152978, 2306510e-2a0d-466b-8ed3-fc4dd3777d0b, 5ee0fa5d-6d26-4d80-b53c-16a241f9b28a, f673538d-ffaf-403f-8e4a-674965e0b039, 906068cc-dffc-4c3b-b78e-7c73c28eac74, 0da069dc-0730-46da-9926-db3356936b42, f6b6b2d6-a75e-4ade-bae2-1a67cf460d08, 5067894d-9675-4931-83d5-2c944d4dcdf6, b4582e1d-bb3b-4617-b572-7cbb55a543ae, 22992fd9-533b-4d4a-86ae-fe5a7189d275, 63686e03-9ce8-464f-bb20-ce2e39fa968c, 7c91d0ba-bbb9-40da-98d7-f410704afab6, 948521b8-8091-41ab-a12a-f267bf8a62fa, 5d2eccbd-b342-48a0-b0ca-538eb77b3071, 9438675a-16b9-4b2c-8d4b-cff0093dadf7, a0fc0860-19fe-46db-a19a-e08b0c605f39, ee88f295-a8ef-4cfd-b380-7011b19e88d4, 69ef821f-b60e-444b-bca1-f58c020b2ab8, d0bcf9f4-ddae-4959-ae86-01806d88949f'}]}"
"{'title': 'Cystic Fibrosis Patient NTM culture', 'keywords': ['CYSTIC FIBROSIS'], 'doiName': '10.1093/ije/dyx196', 'abstract': 'The UK Cystic Fibrosis Registry NTM culture is made up of many data items relating to NTM cultures grown from samples taken during CF patient encounters at NHS hospitals in UK.', 'publisher': {'contactPoint': 'registry@cysticfibrosis.org.uk', 'memberOf': 'ALLIANCE', 'name': 'CYSTIC FIBROSIS TRUST'}, 'contactPoint': 'registry@cysticfibrosis.org.uk'}",69bdac5f-bb70-4ca5-a5ce-51a6106ad00b,"{'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'UK'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'4.0.0': '7b4930b8-52df-4259-9106-dad8c1ffe14f', '6.0.0': 'ae788191-69e5-4a03-b11b-bd25574b0e4f', '5.0.0': 'af148400-1ec6-436d-910e-45350a54c390', '3.0.0': 'c7db2002-4fbd-4c46-8032-e53a73e08c16', '0.0.1': 'f68c04ed-69b0-4ffc-b278-5e71412d20d7', '2.0.0': 'f8a93a78-1b8f-479d-942c-d92428950634', '1.0.0': '31b35d90-5c25-48af-8f89-4bdd657e4738', 'latest': 'ae788191-69e5-4a03-b11b-bd25574b0e4f'}","{'description': ""The UK CF Registry is a centralised database of all 60 CF centres across the UK. Data are manually entered in calendar years by CF clinical teams for the 99% of people with a diagnosis of CF who consent to their data being donated to the Registry. Data are entered onto a secure web-portal. For more information please see www.cysticfibrosis.org.uk/registry and 'Data Resource Profile: The UK CF Registry' published in the International Journal of Epidemiology (2018 Feb 1;47(1)9-10e)."", 'isPartOf': 'No Group'}",ae788191-69e5-4a03-b11b-bd25574b0e4f,https://web.www.healthdatagateway.org/dataset/ae788191-69e5-4a03-b11b-bd25574b0e4f,"{'access': {'deliveryLeadTime': '16 WEEKS (8 WEEKS FOR COMMITTEE DECISION AND 8 WEEKS FOR DATA EXTRACTION AND PROCESSING)', 'dataProcessor': 'Cystic Fibrosis Trust', 'dataController': 'Cystic Fibrosis Trust', 'accessRights': 'https://www.cysticfibrosis.org.uk/the-work-we-do/uk-cf-registry/apply-for-data-from-the-uk-cf-registry', 'jurisdiction': 'GB', 'accessRequestCost': 'Whilst the UK CF Registry does not charge for data, it must recoup costs of data handling (including extract and cleaning), project management, and analysis (where applicable) on behalf of third parties. The charging structure outlined below is designed to be fair, proportionate, and transparent whilst furthering the Registry’s aim of stimulating research use of the data for the benefit of people with cystic fibrosis.\n\nhttps://www.cysticfibrosis.org.uk/the-work-we-do/uk-cf-registry/apply-for-data-from-the-uk-cf-registry'}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'format': ['csv'], 'conformsTo': ['LOCAL']}, 'usage': {'isReferencedBy': [""'Data Resource Profile: The UK CF Registry' published in the International Journal of Epidemiology (2018 Feb 1;47(1)9-10e)""], 'resourceCreator': 'Cystic Fibrosis Trust'}}","{'temporal': {'distributionReleaseDate': '2019-09-01', 'endDate': '2019-09-01', 'startDate': '1996-01-01', 'accrualPeriodicity': 'ANNUAL'}}",2020-01-10T17:00:49Z,,6.0.0,"{'derivation': ['Not Applicable'], 'qualifiedRelation': ['All our datasets are linked by a common identifier. No external linkages.']}",2021-02-21T15:21:47Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 26, 'structuralMetadata.columnName': 26, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 26, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'c0ece766-de72-4947-968f-d8bfa7a106e3', 'name': 'NTMCulture', 'dataElementsCount': 26, 'dataElements': '3d3ad960-74f6-4984-9124-9bae1863b6c5, 9030e94e-0f1e-404d-a594-6fee63fed09e, d8915648-8eac-4532-be93-9b1a3e579129, 868481d5-d35f-4dd9-ad71-7fde3cd4d89e, 3ff4cc24-44b5-4706-aeb3-0d67d7fb7119, cf63d7f1-594b-4a57-9f13-1eea0edc619f, 09ab50e7-fc49-4768-9a90-6c367af40d08, 34cc9385-916f-4c0c-adf4-929436848f4e, 4f6d6b01-97ca-4cc6-83db-ce8a96b2a516, 21fc6638-6d2d-4d76-bd2d-973daa73ddb3, d36343f9-52ab-41e1-af33-0a2bbb8ab9e3, 66469e89-72f4-4fe6-8362-986d15272b1d, 546f77fc-c38f-451e-a7ae-054bb1dd3348, 616632ce-4bb8-483a-9622-5ed8df03e700, 51af1cdb-8461-4e18-a1d2-f72c86ab1478, c6e090f4-2c22-40b7-af44-ef0bfe3ec52e, b0458807-26e9-4156-a96b-68ed15caae36, d3e9b342-51cf-44c7-a1b3-333ccc739b33, 30ebdd13-7e97-4ee6-85bf-c613b429780a, eb618d6e-3f75-403b-92b6-a74fc087d59b, f7764229-7706-423e-9379-11713ab404ed, b5116caf-055e-4ce5-b133-4f097876469f, bc1ee545-b6bc-48b1-814a-10b19d5c5ffa, 649b57ff-d261-4936-9bf4-ae20b438739b, 2cdbba49-9d2f-4f73-8774-f2d3b1847577, 674ade0a-dd55-4845-8995-36f0e49f2cf7'}]}"
"{'title': 'Community Services Dataset', 'publisher': {'name': 'BARTS HEALTH', 'contactPoint': 'surjeet.janjuha@nhs.net', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'surjeet.janjuha@nhs.net', 'abstract': 'Nationally defined dataset containing both administrative & clinical details for community services activity for defined services.  Items are coded using the national definitions.'}",cae0a9a5-1bf2-49c3-b8d1-c315d3239074,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'bbc8b6fe-3f06-4585-9d2e-28f486fecf1b', '2.0.0': 'ae9e8a9f-533f-4823-8e00-84e39ad2c266', '1.0.0': 'a675ac5e-ecc2-4899-9c3c-65c2f36432c5', 'latest': 'ae9e8a9f-533f-4823-8e00-84e39ad2c266'}","{'description': None, 'isPartOf': 'CSDS'}",ae9e8a9f-533f-4823-8e00-84e39ad2c266,https://web.www.healthdatagateway.org/dataset/ae9e8a9f-533f-4823-8e00-84e39ad2c266,"{'access': {'accessRights': 'Available locally within Trust corporate Data Warehouse System and authorised access by Trust staff only.\nDataset is also available via SDLP platform.', 'deliveryLeadTime': 'OTHER'}}",,2020-01-13T16:54:42Z,,2.0.0,,2021-02-21T15:18:30Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Manchester Cancer Research Centre (MCRC) Biobank', 'contactPoint': 'sharzad.moghadam@christie.nhs.uk', 'publisher': {'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE', 'contactPoint': 'sharzad.moghadam@christie.nhs.uk'}, 'keywords': ['Malignant neoplasm of skin', 'Malignant tumour of thyroid gland (disorder)', 'Malignant neoplasm of brain', 'UKCRC Tissue Directory', 'Malignant tumour of lung', 'Manchester', 'Malignant tumour of breast', 'MCRC', 'Cancer', 'Research Centre', 'Biobank'], 'doiName': 'Not Available', 'abstract': 'Collection of samples and data across the following diseases: Malignant neoplasm of brain, Malignant neoplasm of skin, Malignant tumour of thyroid gland (disorder), Malignant tumour of breast, Malignant tumour of lung.'}",095d805c-4b62-4726-b968-bb2f1c463701,"{'spatial': 'England', 'typicalAgeRange': '15-150', 'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM', 'TISSUE', 'URINE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '4f594917-0070-497a-8c3a-4fd4aaaf1d29', '3.0.0': 'af2b3e6d-718e-464a-8c0d-5882fa1d869f', '1.0.0': 'c8fc8806-d1fd-46e8-8bde-87cd4f3fce16', '2.0.0': 'eea147a4-4576-4f86-8ad1-c762137335fd', 'latest': 'af2b3e6d-718e-464a-8c0d-5882fa1d869f'}","{'description': 'Facilitating high quality cancer research by bringing a flexible and committed approach to ethical sample and data collection', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",af2b3e6d-718e-464a-8c0d-5882fa1d869f,https://web.www.healthdatagateway.org/dataset/af2b3e6d-718e-464a-8c0d-5882fa1d869f,"{'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}, 'access': {'accessRights': 'Please contact the publisher using Contact Point details provided.', 'jurisdiction': 'GB-ENG', 'dataProcessor': 'Not Applicable', 'dataController': 'The Christie NHS Foundation Trust', 'accessRequestCost': 'Not specified', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED.'}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}}","{'temporal': {'startDate': '2007-01-01', 'distributionReleaseDate': '2019-08-30', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:16:30Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T16:06:42Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Cardiff University Biobank', 'publisher': {'contactPoint': 'cubiobank@cardiff.ac.uk', 'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE'}, 'doiName': 'Not Available', 'contactPoint': 'cubiobank@cardiff.ac.uk', 'abstract': 'Collection of samples and data across the following diseases: Fit and well', 'keywords': ['UKCRC Tissue Directory', 'Fit and well', 'Cardiff University', 'Biobank']}",097540aa-a0ed-492e-853b-9ebcfd061dea,"{'spatial': 'Wales', 'physicalSampleAvailability': ['PLASMA', 'SALIVA', 'SERUM', 'WHOLE BLOOD'], 'typicalAgeRange': '15-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '274d7898-fa71-4b92-9247-c321098d7d6d', '3.0.0': 'af2ecff2-398c-437f-8c45-adef2406ce43', '2.0.0': 'ad5c7693-983e-4f32-a979-9ab550f2084a', '0.0.1': '1b09463a-7f46-4411-b20b-37d870d0f2bc', 'latest': 'af2ecff2-398c-437f-8c45-adef2406ce43'}","{'description': 'The Cardiff University Biobank is a centralised biobanking facility sited at the University Hospital of Wales.  We offer high quality human biosamples for research undertaken for patient and public benefit to academic and commercial organisations. We have established collections from a number of different disease areas and welcome approaches to initiate new collections not already established within the facility.  The biobank also welcome applications to deposit samples from completed research projects or clinical trails.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",af2ecff2-398c-437f-8c45-adef2406ce43,https://web.www.healthdatagateway.org/dataset/af2ecff2-398c-437f-8c45-adef2406ce43,"{'access': {'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'accessRequestCost': 'Not specified', 'dataProcessor': 'Not Applicable', 'dataController': 'Cardiff University', 'jurisdiction': 'GB-WLS', 'accessRights': 'Please contact the publisher using Contact Point details provided'}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'distributionReleaseDate': '2018-11-16', 'startDate': '2018-01-01'}}",2020-01-13T17:04:34Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T15:57:44Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'NIHR Exeter Clinical Research Facility', 'publisher': {'memberOf': 'ALLIANCE', 'contactPoint': 'biobanking@exeter.ac.uk', 'name': 'TISSUE DIRECTORY'}, 'contactPoint': 'biobanking@exeter.ac.uk', 'keywords': ['Diabetes mellitus type 2', 'PRB', 'Exeter', 'Clinical', 'UKCRC Tissue Directory', 'NIHR', 'Maturity-onset diabetes of the young (disorder)', 'Diabetes mellitus type 1', 'Fit and well', 'RDETB'], 'doiName': 'Not Available', 'abstract': 'Collection of samples and data across the following diseases: Diabetes mellitus type 1, Diabetes mellitus type 2, Fit and well, Maturity-onset diabetes of the young (disorder).'}",df9b7bb1-1b26-4e67-b885-df2dcb8e3450,"{'physicalSampleAvailability': ['DNA', 'PLASMA', 'PM TISSUE', 'SERUM', 'URINE'], 'typicalAgeRange': '0-150', 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': 'f621fcc9-e9ab-4da4-bd34-e4530d11b59d', '3.0.0': 'af4af5cc-a9eb-4e0e-b50a-3cab4ac2daf9', '0.0.1': 'a3617bae-d89f-4817-bc18-81a6c0a6b278', '1.0.0': '096ecdcc-e800-43a5-9fc4-743d7225ab0f', 'latest': 'af4af5cc-a9eb-4e0e-b50a-3cab4ac2daf9'}","{'description': ""NIHR Exeter Clinical Research Facility is a partnership between the University of Exeter Medical School and the Royal Devon and Exeter Foundation Trust. It is dedicated to facilitation of clinical and translational research.\nWe have two main collections: the Peninsula Research Bank (PRB) and the Royal Devon and Exeter Tissue Bank (RDETB). \nThe PRB has ethics to accept gifted samples from completed studies, and the bulk of the collection is from a dedicated biobank collection called EXTEND (the EXeter TEN thousanD), which aims to recruit one in ten of the local Exeter population. The majority (c. 75%) of our studies are local CI led, and we specialise mainly in diabetes, obesity and related pathologies. However, the majority of people within the EXTEND study are fit and well.\nThe RDETB has overarching ethics to collect samples from diagnostic procedures with patients' consent. Each collection within the RDETB uses a standardised consent and collection approach to obtain material that would otherwise be destroyed or not retained. There is scope for prospective studies recruiting through the RDETB.\nBoth collections have a steering committee controlling access, including lay members from within the biobank. There is a standardised approach for requests and the committee sits once a month. In addition, access to gifted samples within the PRB will involve contact with the PI, where possible. Some studies have additional steering committees where they have been carried out in consortia with other centres.\nFirst contact via this directory is encouraged, to establish your needs and our ability to meet them."", 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",af4af5cc-a9eb-4e0e-b50a-3cab4ac2daf9,https://web.www.healthdatagateway.org/dataset/af4af5cc-a9eb-4e0e-b50a-3cab4ac2daf9,"{'access': {'accessRequestCost': 'Not specified', 'accessRights': 'Please contact the publisher using Contact Point details provided.', 'jurisdiction': 'GB-ENG', 'dataProcessor': 'Not Applicable', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED.', 'dataController': 'University of Exeter'}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}, 'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '1980-01-01'}}",2020-01-13T17:16:33Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T16:09:16Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Welsh Ambulance Services NHS Trust (WAST) - Legacy', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '5f3f98068af2ef61552e1d75', 'name': 'SAIL'}, 'keywords': ['Emergency', 'Ambulance', 'SAIL', 'NCS', 'National Core Study', 'COVID-19', 'core-res', 'WAST'], 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'abstract': '(Superseded by the WASD dataset)\n\nThis covers data pertaining to more than 250,000 emergency calls a year, over 50,000 urgent calls and transport over 1.3 million non-emergency patients to over 200 treatment centres throughout England and Wales.'}",d415a5c5-8432-4a81-937f-12135ade6de7,"{'followup': 'OTHER', 'pathway': 'All emergency services pathways', 'spatial': ['https://www.geonames.org/2634895/wales.html'], 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'af6db86a-b901-442e-adf5-f29f6c1dc16e'},"{'description': 'The ambulance services statistics show monthly data for Wales on the number of calls and the time taken to respond to an incident. Information is available by Local Health Board (LHB) and for Wales. The latest and past versions of the release are available on the ambulance services page. Since April 2014, Local Health Boards have been responsible for providing emergency ambulance services (999 calls) for their local residents; the Welsh Ambulance Services NHS Trust (WAST) is commissioned to deliver emergency ambulance services on their behalf.\n\nThere are two categories of ambulance service:\nEmergency Medical Services (EMS) - the Emergency Medical Service deals with emergency and\nurgent cases, and is accessed by dialling 999; and\nPatient Care Services (PCS) – provides transport for patients to a variety of planned hospital\nappointments and outpatient clinics.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/'], 'isPartOf': 'NOT APPLICABLE'}",af6db86a-b901-442e-adf5-f29f6c1dc16e,https://web.www.healthdatagateway.org/dataset/af6db86a-b901-442e-adf5-f29f6c1dc16e,"{'access': {'dataController': 'Welsh Ambulance Services NHS Trust', 'dataProcessor': 'Welsh Ambulance Services NHS Trust', 'accessRights': ['https://saildatabank.com/application-process/'], 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'jurisdiction': ['GB'], 'deliveryLeadTime': '2-6 MONTHS'}, 'formatAndStandards': {'language': ['en'], 'format': ['SQL database table'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE', 'RESEARCH SPECIFIC RESTRICTIONS'], 'resourceCreator': ['Welsh Ambulance Services NHS Trust'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/']}}","{'temporal': {'startDate': '2013-04-01', 'endDate': '2021-08-02', 'distributionReleaseDate': '2013-04-01', 'accrualPeriodicity': 'QUARTERLY', 'timeLag': '1-2 MONTHS'}, 'origin': {'purpose': ['STUDY', 'ADMINISTRATIVE'], 'collectionSituation': ['PRIMARY CARE', 'ACCIDENT AND EMERGENCY', 'HOME'], 'source': ['ELECTRONIC SURVEY']}}",2022-02-15T11:25:37Z,"[{'observedNode': 'EVENTS', 'measuredValue': '3000000', 'observationDate': '01/09/2021', 'measuredProperty': 'Count'}]",6.0.0,"{'qualifiedRelation': ['ALL'], 'tools': ['https://conceptlibrary.saildatabank.com/'], 'derivation': ['Not Available']}",2022-02-15T11:25:37Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 5, 'structuralMetadata.tableName': 5, 'structuralMetadata.tableDescription': 5, 'structuralMetadata.dataElementsCount': 315, 'structuralMetadata.columnName': 315, 'structuralMetadata.columnDescription': 315, 'structuralMetadata.dataType': 315, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '77bd32c6-5735-415c-9c2e-8a794f439283', 'description': 'Patient Clinical Record table - describes attributes of patient an d any treatments or applications applied.', 'name': 'PCR', 'dataElementsCount': 195, 'dataElements': '55341917-43d5-45d7-911d-85cc69909057, b77748ad-26a1-4c63-b09c-9e04d1337f3f, 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"{'title': 'Childhood Pneumonia Governance in Bangladesh', 'abstract': 'This project aims to explore the interplay between political prioritisation practices in global health and childhood pneumonia governance in Bangladesh', 'publisher': {'identifier': '607db9c2e1f9d3704d570ce6', 'memberOf': 'HUB', 'name': 'BREATHE'}, 'keywords': ['RESPIRE', ' Bangladesh', ' neglect', ' childhood', ' pneumonia', ' global health', ' governance', ' case study', ' political', ' prioritisation'], 'contactPoint': 'RESPIRE@ed.ac.uk'}",5df03d24-ad95-4d64-96df-0684a4f26e58,"{'typicalAgeRange': '0-150', 'spatial': 'https://www.geonames.org/1210997/bangladesh.html'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '444c1f10-cb6b-4aee-a3cd-93876bc451b6', '1.0.0': 'b009b68f-730a-4d72-9a3c-c917b1ff715d', 'latest': 'b009b68f-730a-4d72-9a3c-c917b1ff715d'}","{'description': 'This project aims to map and analyse global and national governance of childhood pneumonia (CP) control through examination of existing health policies, financing mechanisms and health system analysis. Lois will investigate the extent of neglect at the international level and look at the extent of neglect at the domestic level, uncovering if and why there are differences when comparing global to national prioritisation, what the local effects of this are and how Bangladesh’s policies have adapted to tackle CP.\n\nGlobally, childhood pneumonia (CP) remains the leading infectious cause of death among children under five. However, the disease receives less prioritisation and funding in global health when compared to other infectious diseases such as tuberculosis, malaria and polio. Thus, CP can be described as a neglected health issue at the global level due to lack of synergy among key stakeholders and current agenda-setting practices between influential global health actors.\n\nBangladesh is typically seen as a success story due to huge reductions in CP in the last few decades. Nevertheless, it remains the 13th highest burden country globally for CP. As such, Bangladesh offers a unique example of what governments are doing to address CP, despite the lack of global prioritisation. Due to the complex wider determinants of health that need to be considered when tackling CP, this disease is a useful litmus test of how well a health system is functioning.\n\nThis project aims to map and analyse global and national governance of CP control through examination of existing health policies, financing mechanisms and health system analysis. Lois will investigate the extent of neglect at the international level and look at the extent of neglect at the domestic level, uncovering if and why there are differences when comparing global to national prioritisation, what the local effects of this are and how Bangladesh’s policies have adapted to tackle CP.\n\nFor further information, see: ""https://www.ed.ac.uk/usher/respire/phd-studentships/lois-king""', 'isPartOf': 'RESPIRE'}",b009b68f-730a-4d72-9a3c-c917b1ff715d,https://web.www.healthdatagateway.org/dataset/b009b68f-730a-4d72-9a3c-c917b1ff715d,"{'formatAndStandards': {'format': ['text'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en']}, 'access': {'accessRights': ['https://www.ed.ac.uk/usher/respire/contact-us'], 'accessService': 'Access service varies on a project-by-project basis. Contact the RESPIRE team for further in formation', 'jurisdiction': ['GB-ENG', 'GB-SCT', 'GB-WLS'], 'dataController': 'BREATHE', 'dataProcessor': 'NOT APPLICABLE', 'deliveryLeadTime': 'VARIABLE'}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['RESPIRE']}}","{'temporal': {'startDate': '2019-09-02', 'timeLag': 'NOT APPLICABLE', 'accrualPeriodicity': 'STATIC', 'distributionReleaseDate': '2022-08-31', 'endDate': '2022-08-31'}, 'origin': {'collectionSituation': ['COMMUNITY'], 'purpose': ['STUDY']}}",2021-04-09T15:30:21Z,"[{'observationDate': '31/08/2022', 'measuredProperty': 'Count', 'observedNode': 'FINDINGS', 'measuredValue': '1'}]",1.0.0,,2021-08-11T08:21:17Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'COVID antigen testing - Pillar 1', 'keywords': ['Northern Ireland', 'COVID-19', 'Antigen', 'Pillar 1', 'NCS', 'Occupation', 'National Core Study'], 'publisher': {'identifier': '5f89662f7150a1b050be0710', 'name': 'HEALTH AND SOCIAL CARE NORTHERN IRELAND', 'memberOf': 'ALLIANCE'}, 'abstract': 'Details of completed (processed) COVID-19 antigen tests carried out in NHS hospitals in Northern Ireland.', 'contactPoint': 'hbs@hscni.net'}",3abc20ce-3dc6-4715-9de0-56aa97a6f5ec,"{'spatial': 'https://www.geonames.org/2641364/northern-ireland.html', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'UNKNOWN', 'pathway': 'Dataset relates to a single type of antigen testing', 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '1f9d9f96-df18-4660-9c96-d5318cd0d68e', '3.0.0': 'b0319b9b-14ba-4e23-86ff-89363d4d69a7', '1.0.0': '7389dc03-1fc7-4af7-b12c-bbab448290f9', '2.0.0': 'b6eececf-6ae4-451e-b41c-4bd245646b47', 'latest': 'b0319b9b-14ba-4e23-86ff-89363d4d69a7'}","{'description': 'This dataset is extracted from the Laboratory Information Systems in Northern Ireland hospitals on a daily basis. 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The HBS is funded by the BSO and the Department of Health (DoH). The authors alone are responsible for the interpretation of the data and any views or opinions presented are solely those of the author and do not necessarily represent those of the BSO.'], 'dataUseLimitation': ['RESEARCH USE ONLY']}, 'formatAndStandards': {'language': ['en'], 'format': ['text', 'csv'], 'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL']}}","{'temporal': {'accrualPeriodicity': 'IRREGULAR', 'startDate': '2020-01-05', 'timeLag': 'NOT APPLICABLE'}, 'origin': {'purpose': ['CARE'], 'source': ['LIMS'], 'collectionSituation': ['OUTPATIENTS', 'SERVICES']}}",2020-11-17T12:23:21Z,"[{'observedNode': 'EVENTS', 'measuredValue': '1', 'measuredProperty': 'Count', 'observationDate': '16/06/2021', 'disambiguatingDescription': 'Count of completed (processed) COVID-19 antigen tests carried out in NHS hospitals in Northern Ireland'}]",3.0.0,"{'derivation': ['Not known'], 'qualifiedRelation': ['https://web.www.healthdatagateway.org/dataset/2843087f-23a4-4cfe-8e72-53f2b9562cc3', 'https://web.www.healthdatagateway.org/dataset/1d5b9205-dae4-4b0e-a3d3-04707875edf8']}",2021-06-17T15:16:53Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 2, 'structuralMetadata.tableName': 2, 'structuralMetadata.tableDescription': 2, 'structuralMetadata.dataElementsCount': 16, 'structuralMetadata.columnName': 16, 'structuralMetadata.columnDescription': 16, 'structuralMetadata.dataType': 16, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'c8d952e2-d4d9-48a4-bbe9-543051b543c1', 'description': 'Pillar 1 COVID-19 testing processed in HSCNI laboratories', 'name': 'Pillar2', 'dataElementsCount': 1, 'dataElements': '698ea248-5bae-4c5f-85a6-06d10ce98116'}, {'id': '3592c959-402d-4149-b819-5b2f99ff8c10', 'description': 'Pillar 1 COVID-19 testing processed in HSCNI laboratories', 'name': 'Pillar1', 'dataElementsCount': 15, 'dataElements': 'f61748e5-12b5-4a9f-b9b6-ca50cd9e4675, c819efd9-6dbd-4e3c-8fc5-4dfc0901f0fb, cb03e57b-f518-4f0d-8a3f-cca4e0c929ef, 6990d7ae-050b-46e3-bb2f-76e2bb8dd985, 818f3b50-6d58-4b00-88e8-c36cdbb4fd62, 483d280d-1213-4148-ae00-c95cbf43168d, fad0c8a2-9e0c-4f01-8e0b-1128dc072cc6, 090c0efb-505a-4902-9534-927ea8912a1e, cc19108b-2534-4224-a2b9-7b857ba12eb3, ebf19117-6e20-4f04-bf50-2df171b14f8c, fee3c042-92cf-4306-bf15-26cb29846bd3, 84a58376-a947-4917-8f1b-1aadf25b8eb8, 844d36e9-e9bc-43c2-9a39-a282eb2c4408, cfd15835-883c-45b9-a853-71673486e26c, 3ae898cf-9b87-414b-95f0-472e80b6870a'}]}"
"{'title': 'Emergency Care Dataset (ECDS)', 'publisher': {'identifier': '607db9c2e1f9d3704d570cde', 'memberOf': 'ALLIANCE', 'name': 'BARTS HEALTH'}, 'contactPoint': 'BartsHealth.ResearchDataRequest@nhs.net', 'keywords': ['ECDS', 'A&E', 'Emergency Care', 'Accident and Emergency', 'CVD-COVID-UK', 'BHF DSC', 'BHF Data Science Centre', 'Linked', 'LINKABLE'], 'abstract': 'Nationally defined dataset which reports on type 1-4 ED departments. The dataset has been revised recently to capture more clinically relevent set of data items including coded using SNOMED.'}",57fa56f2-78d1-49af-ab8d-e8146d711868,"{'pathway': 'Secondary Care Acute Hospital Accident & Emergency Pathways', 'typicalAgeRange': '0-120', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': '> 10 YEARS', 'spatial': ['https://www.geonames.org/11591955/london.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '226fb3f1-4471-400a-8c39-2b66d46a39b6', '5.0.0': 'b04e89c3-3c56-4ad9-b929-d3937874df52', '2.0.0': '93105053-ddf3-4339-9e4a-baf91c310370', '4.0.0': '6d41700e-6dac-47c1-ba31-eb2f23539efe', '3.0.0': 'b09b99dc-a9ba-4e39-8917-ba8c05655ad9', 'latest': 'b04e89c3-3c56-4ad9-b929-d3937874df52'}","{'description': 'The Emergency Care Data Set (ECDS) is the national data set for urgent and emergency care. It replaced Accident & Emergency Commissioning Data Set (CDS type 010) and was implemented through: ECDS (CDS 6.2.2 Type 011).\n\nECDS allows NHS Digital to provide information to support the care provided in emergency departments by including the data items needed to understand capacity and demand and help improve patient care.\n\nThis improved data helps improve understanding of:\n\nThe complexity and acuity of attending patients\nThe causes of rising demand\nThe value added by emergency departments.\n\nECDS also allows:\n\nThe capture of better diagnostic data to ensure an enhanced understanding of need, activity and outcomes\nconsistent monitoring of data across local and national initiatives\n\nSupport for injury surveillance, such that it will be possible to identify patterns that may be amenable to targeted interventions and improved public health.', 'associatedMedia': 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['Spreadsheet']}}","{'temporal': {'distributionReleaseDate': '2021-10-29', 'startDate': '2021-10-28', 'timeLag': 'NOT APPLICABLE', 'accrualPeriodicity': 'STATIC'}, 'origin': {'collectionSituation': ['OTHER'], 'source': ['PAPER BASED'], 'purpose': ['STUDY']}}",2021-11-01T11:37:05Z,"[{'observedNode': 'PERSONS', 'measuredValue': '148', 'disambiguatingDescription': '148 patients were recruited to the HIV-POGO study', 'observationDate': '28/10/2021', 'measuredProperty': 'Count'}]",2.0.0,,2021-11-01T11:37:06Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 8, 'structuralMetadata.tableName': 8, 'structuralMetadata.tableDescription': 8, 'structuralMetadata.dataElementsCount': 329, 'structuralMetadata.columnName': 329, 'structuralMetadata.columnDescription': 329, 'structuralMetadata.dataType': 329, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '2452d8d1-0f49-4539-b8a1-7aae5aaf2506', 'description': 'Table Description pending', 'name': 'Pain', 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"{'title': 'Lothian Birth Cohort 1936 (LBC1936)', 'publisher': {'memberOf': 'HUBS', 'identifier': '61800787f4dde0c2a01e1ea2', 'name': 'DATAMIND'}, 'abstract': 'The Lothian Birth Cohort 1936 (LBC1936) study is a longitudinal study of cognitive, brain and general ageing. It aims to understand how our brain and thinking skills change throughout life, and why some brains age better than others.', 'keywords': ['LBC1936', 'Mental Health', 'Physical Measures', 'Ageing', 'Longitudinal', 'Cohort', 'Cognitive', 'DATAMIND']}",e63613a9-92e9-4147-8a76-40e4a87ec131,"{'followup': '> 10 YEARS', 'spatial': ['http://www.geonames.org/2638360/scotland.html'], 'typicalAgeRange': '70-86'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'b2f48da1-d3c6-4126-a74b-e87c2f629ef8'},"{'description': 'The original Lothian Birth Cohorts of 1921 (LBC1921) and 1936 (LBC1936) were designed as follow-up studies to the Scottish Mental Surveys of 1932 (SMS1932) and 1947 (SMS1947), respectively. The SMS1932 took place simultaneously across schools in Scotland on the 1st of June, 1932, and used the Moray House Test (No. 12; MHT) of general intelligence. Almost every child attending school and born in 1921 (N = 87,498) was tested. The same MHT was administered to almost every child born in 1936 and attending school on the 4th of June, 1947 for the SMS1947 (N = 70,805). Decades later, participants of both Surveys, mostly living in Edinburgh and the surrounding area (the Lothians) in older age, were invited to participate in the Lothian Birth Cohort (LBC) studies. Between 1999 and 2001, 550 of the SMS1932 were recruited to Wave 1 of the LBC1921 study, at a mean age of 79 years. Between 2004 and 2007, 1,091 members of SMS1947 were recruited to Wave 1 of the LBC1936 study, at a mean age of 70 years. Both cohorts re-sat the MHT at initial follow-up. In addition, a large amount of other cognitive, psychosocial, lifestyle, medical, biomarker, genetic, brain imaging and other data were collected. \n\nThe LBC studies set out principally to examine the nature and determinants of non-pathological cognitive ageing from childhood to older age, and within in older age. However, in recent years the scope of the studies has extended to identifying more risk and protective factors that have the potential to be interventions to reduce the risk of cognitive loss in later life. At each visit, participants submit a wide range of data, leading to a database of thousands of data points for every single participant, including cognitive, lifestyle, social and psychological, genetic and epigenetic, health and physical fitness, biological, and brain and vascular imaging data.'}",b2f48da1-d3c6-4126-a74b-e87c2f629ef8,https://web.www.healthdatagateway.org/dataset/b2f48da1-d3c6-4126-a74b-e87c2f629ef8,"{'access': {'accessRights': ['https://www.ed.ac.uk/lothian-birth-cohorts/data-access-collaboration'], 'jurisdiction': ['GB-SCT'], 'dataController': 'University of Edinburgh', 'dataProcessor': 'University of Edinburgh'}}","{'origin': {'purpose': ['STUDY']}, 'temporal': {'accrualPeriodicity': 'OTHER', 'timeLag': 'VARIABLE', 'startDate': '1947-01-01'}}",2021-12-02T09:46:39Z,"[{'observedNode': 'PERSONS', 'measuredValue': 1091, 'disambiguatingDescription': 'Number of participants at recruitment (LBC1936 Wave 1)', 'observationDate': '2004-01-01 00:00:00', 'measuredProperty': 'Count'}]",1.0.0,,2021-12-02T09:46:39Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Cystic Fibrosis Patient Transplants', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'CYSTIC FIBROSIS TRUST', 'contactPoint': 'registry@cysticfibrosis.org.uk'}, 'keywords': ['CYSTIC FIBROSIS'], 'doiName': '10.1093/ije/dyx196', 'contactPoint': 'registry@cysticfibrosis.org.uk', 'abstract': 'The UK Cystic Fibrosis Registry Transplants is made up of many data items relating to transplant journey(s) taken by CF patients at NHS hospitals in UK.'}",bea354e8-c552-41ef-80c2-a76ca5767e4b,"{'spatial': 'UK', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '42bec126-0cf1-448e-9fa8-494a466ae698', '4.0.0': 'b2fb79c5-26db-484b-8e93-1c56d7654f57', '3.0.0': '8c5be9df-c9b8-43ab-83ca-5d5dd61549da', '1.0.0': '425de2a1-5216-4973-a5cd-5cd3c35e40b3', '0.0.1': '78e3ec19-5234-4168-a853-f6e1be6d0193', 'latest': 'b2fb79c5-26db-484b-8e93-1c56d7654f57'}","{'description': ""The UK CF Registry is a centralised database of all 60 CF centres across the UK. Data are manually entered in calendar years by CF clinical teams for the 99% of people with a diagnosis of CF who consent to their data being donated to the Registry. Data are entered onto a secure web-portal. For more information please see www.cysticfibrosis.org.uk/registry and 'Data Resource Profile: The UK CF Registry' published in the International Journal of Epidemiology (2018 Feb 1;47(1)9-10e)."", 'isPartOf': 'No Group'}",b2fb79c5-26db-484b-8e93-1c56d7654f57,https://web.www.healthdatagateway.org/dataset/b2fb79c5-26db-484b-8e93-1c56d7654f57,"{'access': {'accessRequestCost': 'Whilst the UK CF Registry does not charge for data, it must recoup costs of data handling (including extract and cleaning), project management, and analysis (where applicable) on behalf of third parties. The charging structure outlined below is designed to be fair, proportionate, and transparent whilst furthering the Registry’s aim of stimulating research use of the data for the benefit of people with cystic fibrosis. \n\nhttps://www.cysticfibrosis.org.uk/the-work-we-do/uk-cf-registry/apply-for-data-from-the-uk-cf-registry', 'dataController': 'Cystic Fibrosis Trust', 'accessRights': 'https://www.cysticfibrosis.org.uk/the-work-we-do/uk-cf-registry/apply-for-data-from-the-uk-cf-registry', 'deliveryLeadTime': '16 WEEKS (8 WEEKS FOR COMMITTEE DECISION AND 8 WEEKS FOR DATA EXTRACTION AND PROCESSING)', 'dataProcessor': 'Cystic Fibrosis Trust', 'jurisdiction': 'GB-GBN'}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'format': ['csv'], 'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL']}, 'usage': {'resourceCreator': 'Cystic Fibrosis Trust', 'isReferencedBy': [""'Data Resource Profile: The UK CF Registry' published in the International Journal of Epidemiology (2018 Feb 1;47(1)9-10e)""]}}","{'temporal': {'distributionReleaseDate': '2020-02-15', 'startDate': '1996-01-01', 'accrualPeriodicity': 'ANNUAL', 'endDate': '2020-02-02'}}",2020-04-27T11:27:21Z,,4.0.0,"{'derivation': ['Not Applicable'], 'qualifiedRelation': ['All our datasets are linked by a common identifier. 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"{'title': 'Fife Microbiology: Tests', 'abstract': 'Microbiology samples and tests and Fife labs data. Fife 2006 - 2018.', 'publisher': {'identifier': '607db9c4e1f9d3704d570d1f', 'memberOf': 'ALLIANCE', 'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE'}, 'keywords': ['microbiology', 'HIC'], 'contactPoint': 'hicsupport@dundee.ac.uk'}",0c43c0b6-de3a-478b-8190-4da37fbe5ff5,"{'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2636157/tayside-region.html'], 'followup': 'UNKNOWN'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '63f6d960-da48-4de6-9183-5518f1ce7644', '3.0.0': 'b3004f9b-11a0-482b-9cec-791b28fd492e', '0.0.1': '23d38ca6-8444-47ca-91ab-79a9ea17515c', '2.0.0': 'aa5c8e81-ad02-4366-9577-472f7ed339d9', 'latest': 'b3004f9b-11a0-482b-9cec-791b28fd492e'}","{'description': ""Fife microbiology links a specimen to a test code and it's description.\nResult is stored as a free text comment field, so may need to be interpreted by the data users.  Many of these results are comments about the samples.\nThis dataset pulls the CHI and Sample Date fields from the Lab dataset for convenience."", 'isPartOf': 'University of Dundee Health Informatics Centre'}",b3004f9b-11a0-482b-9cec-791b28fd492e,https://web.www.healthdatagateway.org/dataset/b3004f9b-11a0-482b-9cec-791b28fd492e,"{'formatAndStandards': {'format': ['database'], 'conformsTo': ['LOCAL'], 'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL']}, 'access': {'dataController': 'University of Dundee', 'accessService': 'HIC has implemented a remote-access ""Safe Haven"" environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details are available via the following link:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/', 'accessRights': ['https://www.dundee.ac.uk/hic/governanceapprovalsupport/'], 'deliveryLeadTime': 'OTHER', 'jurisdiction': ['GB-SCT']}, 'usage': {'dataUseRequirements': ['DISCLOSURE CONTROL'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}}","{'origin': {'source': ['ELECTRONIC SURVEY'], 'collectionSituation': ['PRIMARY CARE'], 'purpose': ['CARE']}, 'temporal': {'timeLag': 'NOT APPLICABLE', 'accrualPeriodicity': 'STATIC', 'endDate': '2018-01-01', 'startDate': '2006-06-01', 'distributionReleaseDate': '2021-09-28'}}",2020-06-03T12:57:16Z,"[{'observedNode': 'PERSONS', 'measuredValue': '129000', 'disambiguatingDescription': '129,000 persons in the dataset', 'observationDate': '28/09/2021', 'measuredProperty': 'COUNT'}]",3.0.0,,2021-10-05T16:23:58Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 10, 'structuralMetadata.columnName': 10, 'structuralMetadata.columnDescription': 10, 'structuralMetadata.dataType': 10, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'bbdce8a4-c951-4443-a1bd-09c208be0805', 'description': ""Links a specimen to a test code and it's description.  Result is stored as a free text comment field, so may need to be interpreted by the data users.  Many of these results are comments about the samples.  This dataset pulls the CHI and Sample Date fields from the Lab dataset for convenience."", 'name': 'Microbiology - Fife Test', 'dataElementsCount': 10, 'dataElements': 'a1ba36d4-1cfc-4fa6-ba27-5a44f99d168a, 51ea1138-f5ac-48e2-9eb8-adf8a427a286, db6449df-d9a6-434e-a1e3-8f4442df5967, f2fac6cf-b16b-4a9f-aa5b-05e16b1a2977, 6c933e99-f538-4d02-8632-d85ff5ef3a28, eef041a3-f748-40b0-95e2-1fd29e3251c4, 7b520feb-08b2-467d-b331-17284f55a148, 1a4e9e0c-c6d4-421f-a25b-cc8aecc76479, 6a03969a-52da-4deb-b8e8-44a76e1a8ae6, 93b00592-0223-4bfb-90ca-46d738a52bb5'}]}"
"{'title': 'Covid 19 Accident and Emergency Statistics', 'contactPoint': 'hicsupport@dundee.ac.uk', 'publisher': {'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE', 'identifier': '607db9c4e1f9d3704d570d1f', 'memberOf': 'ALLIANCE'}, 'abstract': 'Contains data on episode level new and unscheduled attendances at Emergency Departments and some smaller community hospitals and minor injury units (MIUs).', 'keywords': ['COVID-19', 'Accident and Emergency', 'HIC', 'SCOTLAND']}",c319c402-7ca7-4e2b-bd17-a1abacf9f84c,"{'pathway': 'Secondary care records for Tayside and Fife', 'typicalAgeRange': '0-150', 'followup': 'UNKNOWN', 'spatial': ['United Kingdom,Scotland'], 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'b32322b4-edd9-48ed-9204-de1259f0dfc1'},"{'description': 'Contains data on episode level new and unscheduled attendances at Emergency Departments and some smaller community hospitals and minor injury units (MIUs).', 'isPartOf': 'University of Dundee Health Informatics Centre'}",b32322b4-edd9-48ed-9204-de1259f0dfc1,https://web.www.healthdatagateway.org/dataset/b32322b4-edd9-48ed-9204-de1259f0dfc1,"{'access': {'dataProcessor': 'University of Dundee, Health Informatics Centre', 'accessRequestCost': ['Quotation available on request'], 'deliveryLeadTime': '2-4 WEEKS', 'accessService': 'HIC has implemented a remote-access Trusted Research Environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details are available via the following link:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/', 'accessRights': ['https://www.dundee.ac.uk/hic/governanceservice/'], 'jurisdiction': ['GB-SCT'], 'dataController': 'Local NHS boards'}, 'usage': {'investigations': [''], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['NHS Fife and Tayside'], 'dataUseRequirements': ['DISCLOSURE CONTROL']}, 'formatAndStandards': {'language': ['en'], 'conformsTo': ['LOCAL'], 'format': ['Database'], 'vocabularyEncodingScheme': ['LOCAL']}}","{'temporal': {'timeLag': 'OTHER', 'accrualPeriodicity': 'CONTINUOUS', 'startDate': '2018-01-01', 'distributionReleaseDate': '2022-05-19'}, 'origin': {'purpose': ['DISEASE REGISTRY'], 'collectionSituation': ['ACCIDENT AND EMERGENCY'], 'source': ['OTHER INFORMATION SYSTEM']}}",2022-06-08T09:56:40Z,"[{'observedNode': 'PERSONS', 'measuredValue': '378367', 'disambiguatingDescription': '378,367 persons in this dataset', 'observationDate': '19/05/2022', 'measuredProperty': 'COUNT'}]",1.0.0,,2022-06-08T09:56:40Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 28, 'structuralMetadata.columnName': 28, 'structuralMetadata.columnDescription': 28, 'structuralMetadata.dataType': 28, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '472f3899-2b6b-4d2a-8ecb-cd13e82f32a4', 'description': 'Accident and Emergency Statistics.', 'name': 'COVID19 - Accident and Emergency', 'dataElementsCount': 28, 'dataElements': 'fd95f180-1afd-4478-a68d-f91284045167, 84ff3c26-c8bd-4436-b6a9-5c56dc461d24, 8ca2a1a4-0876-4de2-a9da-d878851fe919, db984988-df09-4000-a2c3-ab08b96b7bb6, 811db926-624c-4e5b-9c28-b48683ad41b4, f0fa78bf-ca05-44b5-a518-36e4be43a892, 8240f78c-d947-40e6-a722-13df905d8899, 5d12a70f-8e88-4d71-89fe-eac6c1f5d25e, 242a8619-b368-4f06-9734-321c8ca84897, 4f5d616b-631c-442a-ad1a-9e52f4c758f6, 01773388-edf8-43f8-8e59-ce19c21d92c7, da6e3e81-2ba3-4159-b9c8-1db40bb6fa10, f4f07ef6-f836-4dbc-be69-a0e6f6699b31, c9a707cd-c85c-492e-86f7-304b348b6930, 787db907-3f60-4648-9f78-d3787a2e7dd1, 7f0d56e0-f54f-49d5-99d1-fb51dccc88ef, 0f992f2d-9fa9-42cb-9e6b-8d54157104ee, 86590f31-d33a-413b-8eee-50a1a7a578ad, 4bfe5735-2625-4e0f-a997-b3d63502f23e, ddac776b-53c1-4d43-9dc1-6ecd3827008b, 687a8069-c587-4ddd-aa31-8d2aad5b8241, 0df59a24-d0b1-4af2-9b0c-29a2c6fddd93, c945ae38-b4a7-4906-8693-c9973792693f, d199c0ab-5963-438d-9cf1-653632b37799, cc30a6f7-d611-4999-a2b2-cce171dfc688, 333b9d3d-74b4-46bc-a4e0-bf468d68c371, bf0ba17c-f399-4d97-b71a-ace8b69ce608, 6a2cff7a-771e-45b8-b07e-f097aebe8414'}]}"
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"{'title': 'Cystic Fibrosis Patient Chronic Medication', 'contactPoint': 'registry@cysticfibrosis.org.uk', 'abstract': 'The UK Cystic Fibrosis Registry Chronic Medications is made up of data relating to chronic medications taken by CF patients (taken for more than 3 months.). Medications have been entered by CF centres, primarily relating to pulmonary conditions.', 'doiName': '10.1093/ije/dyx196', 'publisher': {'contactPoint': 'registry@cysticfibrosis.org.uk', 'name': 'CYSTIC FIBROSIS TRUST', 'memberOf': 'ALLIANCE'}, 'keywords': ['CYSTIC FIBROSIS']}",0ad31772-0893-4cf7-bab0-683e80302201,"{'typicalAgeRange': '0-150', 'spatial': 'UK', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'6.0.0': '22fe7168-89af-4d93-89c8-afa03cf2031a', '7.0.0': 'b5033be2-0744-49c5-a398-a4d3ed4e1deb', '5.0.0': 'f55dd7ed-cb11-4bb6-84a7-29ae83ffe3fc', '4.0.0': '93cf2f21-1c90-40fa-b447-28bbd5086171', '3.0.0': 'e3c2d5ff-e08b-4fc9-a874-19123fab7183', '0.0.1': 'c023aaf9-0867-40a9-bab2-664bb43c0d55', '1.0.0': 'be43d989-56ff-4058-a652-cab4dad77a68', '2.0.0': 'dd156a91-62c1-431d-ae87-8543c7b46b84', 'latest': 'b5033be2-0744-49c5-a398-a4d3ed4e1deb'}","{'description': ""The UK CF Registry is a centralised database of all 60 CF centres across the UK. Data are manually enterd in calendar years by CF clinical teams for the 99% of people with a diagnosis of CF who consent to their data being donated to the Registry. Data are entered onto a secure web-portal. For more information please see www.cysticfibrosis.org.uk/registry and 'Data Resource Profile: The UK CF Registry' published in the International Journal of Epidemiology (2018 Feb 1;47(1)9-10e)."", 'isPartOf': 'No Group'}",b5033be2-0744-49c5-a398-a4d3ed4e1deb,https://web.www.healthdatagateway.org/dataset/b5033be2-0744-49c5-a398-a4d3ed4e1deb,"{'access': {'accessRights': 'https://www.cysticfibrosis.org.uk/the-work-we-do/uk-cf-registry/apply-for-data-from-the-uk-cf-registry', 'dataController': 'Cystic Fibrosis Trust', 'dataProcessor': 'Cystic Fibrosis Trust', 'accessRequestCost': 'Whilst the UK CF Registry does not charge for data, it must recoup costs of data handling (including extract and cleaning), project management, and analysis (where applicable) on behalf of third parties. The charging structure outlined below is designed to be fair, proportionate, and transparent whilst furthering the Registry’s aim of stimulating research use of the data for the benefit of people with cystic fibrosis.\n\nhttps://www.cysticfibrosis.org.uk/the-work-we-do/uk-cf-registry/apply-for-data-from-the-uk-cf-registry', 'deliveryLeadTime': '16 WEEKS (8 WEEKS FOR COMMITTEE DECISION AND 8 WEEKS FOR DATA EXTRACTION AND PROCESSING)', 'jurisdiction': 'GB'}, 'usage': {'resourceCreator': 'Cystic Fibrosis Trust', 'isReferencedBy': [""'Data Resource Profile: The UK CF Registry' published in the International Journal of Epidemiology (2018 Feb 1;47(1)9-10e)""]}, 'formatAndStandards': {'format': ['csv'], 'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'conformsTo': ['LOCAL']}}","{'temporal': {'endDate': '2020-02-01', 'distributionReleaseDate': '2019-09-01', 'accrualPeriodicity': 'ANNUAL', 'startDate': '1996-01-01'}}",2020-01-10T17:00:49Z,,7.0.0,"{'derivation': ['Not Applicable'], 'qualifiedRelation': ['All our datasets are linked by a common identifier. 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"{'title': 'Radiotherapy Dataset', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'publisher': {'contactPoint': 'SAILDatabank@swansea.ac.uk', 'name': 'SAIL', 'memberOf': 'ALLIANCE'}, 'abstract': 'The Radiotherapy Data Set\xa0(RTDS) allows for the routine collection of clinically and managerially relevant ACTIVITY data from Radiotherapy facilities, in order to commission or monitor Radiotherapy Services in an evidence-based manner.', 'doiName': 'In Progress', 'keywords': ['Radiotherapy', ' SAIL', ' NHS']}",f102ca50-d1e4-44ec-924e-be89446652af,"{'followup': '0 - 6 MONTHS', 'pathway': 'SECONDARY CARE', 'typicalAgeRange': '18-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'Wales'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'eed9c403-7858-41ca-aa41-38b6293b58a6', '1.0.0': 'b589b19b-b43f-4344-affb-5d7ea328c909', 'latest': 'b589b19b-b43f-4344-affb-5d7ea328c909'}","{'description': 'The Radiotherapy Data Set\xa0(RTDS) allows for the routine collection of clinically and managerially relevant ACTIVITY data from Radiotherapy facilities, in order to commission or monitor Radiotherapy Services in an evidence-based manner.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/'], 'isPartOf': 'NOT APPLICABLE'}",b589b19b-b43f-4344-affb-5d7ea328c909,https://web.www.healthdatagateway.org/dataset/b589b19b-b43f-4344-affb-5d7ea328c909,"{'usage': {'resourceCreator': 'NWIS', 'isReferencedBy': ['Hoskin, P. 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"{'title': 'National Vascular Registry - Lower Limb Angioplasty clinical dataset', 'publisher': {'name': 'HQIP', 'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d23'}, 'abstract': 'The dataset contains continuously ascertained patient-level data for patients undergoing lower limb angioplasty in NHS hosptials in England, Wales, Scotland and Northern Ireland. 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"{'title': 'DataLoch Core', 'abstract': 'DataLoch brings together routine data collected as part of people’s interactions with health care services in South-East Scotland. These data include details of visits to hospitals or GPs, treatments, medicines prescribed, outcomes and test results.', 'publisher': {'identifier': '61603974c8c15ee90b768546', 'memberOf': 'ALLIANCE', 'name': 'DataLoch'}, 'keywords': ['Lothian', 'Edinburgh', 'GP DATA', 'Hospital Inpatient data', 'SMR', 'Mental Health', 'Laboratory', 'Critical Care', 'Death', 'Prescriptions', 'COVID-19', 'Primary Care', 'Secondary Care', 'Scottish Morbidity', 'General Practice', 'TrakCare', 'NRS', 'National Records of Scotland', 'SICSAG', 'Labs', 'Electronic Health Record', 'Research'], 'contactPoint': 'dataloch@ed.ac.uk'}",d62939c4-e4a8-4fca-91ed-54f7f87fb89e,"{'typicalAgeRange': '0-150', 'spatial': ['https://www.geonames.org/2643576/lothian.html'], 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'b670cfe7-d4e2-46e5-b3e9-dccfd05c02d2'},"{'description': 'DataLoch works with data in several ways, including: collaborating with clinicians to improve the data quality; linking datasets to enable broad insights; translating data into common standard definitions; and maintaining a high-quality metadata dictionary. Critical to this work is the involvement of clinical experts from NHS Scotland who have a detailed understanding of routine data in health care and help the DataLoch team make sure the data are research-ready. \n \nOur initial focus was on building a COVID-19 dataset to support clinicians and NHS partners in their ongoing COVID-19 response. These data have proven to be an invaluable resource enabling researchers and clinicians to generate new knowledge and insights. Feedback from our early contributors has helped inform improvements to the process and development of the data to support research beyond COVID-19.', 'associatedMedia': ['https://dataloch.org/data/about-the-data']}",b670cfe7-d4e2-46e5-b3e9-dccfd05c02d2,https://web.www.healthdatagateway.org/dataset/b670cfe7-d4e2-46e5-b3e9-dccfd05c02d2,"{'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL', 'READ', 'ICD10', 'OPCS4', 'NHS SCOTLAND NATIONAL CODES'], 'format': ['csv'], 'conformsTo': ['OTHER']}, 'access': {'dataController': 'NHS Lothian', 'dataProcessor': 'University of Edinburgh', 'jurisdiction': ['GB-SCT'], 'accessRights': ['https://dataloch.org/data/how-to-apply'], 'deliveryLeadTime': 'VARIABLE', 'accessRequestCost': ['https://dataloch.org/data/how-to-apply']}, 'usage': {'dataUseLimitation': ['PROJECT SPECIFIC RESTRICTIONS'], 'investigations': ['https://dataloch.org/insights/projects-delivered'], 'resourceCreator': ['DataLoch']}}","{'temporal': {'startDate': '1996-01-01', 'accrualPeriodicity': 'CONTINUOUS', 'timeLag': 'OTHER'}, 'origin': {'source': ['EPR', 'LIMS', 'OTHER INFORMATION SYSTEM', 'OTHER'], 'collectionSituation': ['PRIMARY CARE', 'ACCIDENT AND EMERGENCY', 'IN-PATIENTS', 'SERVICES', 'PHARMACY', 'OTHER'], 'purpose': ['CARE', 'AUDIT', 'ADMINISTRATIVE', 'OTHER']}}",2021-12-21T10:37:12Z,"[{'observedNode': 'PERSONS', 'measuredValue': '800000', 'observationDate': '01/01/2021', 'measuredProperty': 'Count', 'disambiguatingDescription': 'Population of Lothian'}]",1.0.0,,2021-12-21T10:37:12Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Development of spirometry predictive values for Indian population', 'publisher': {'contactPoint': 'RESPIRE@ed.ac.uk', 'memberOf': 'HUB', 'name': 'BREATHE'}, 'keywords': ['predictive values', 'spirometry', 'healthy', 'RESPIRE', 'BREATHE'], 'abstract': 'This dataset contains quantitative data. It has questionnaire and spirometry data collected from the healthy adult population from rural part of India. The purpose of this data collected is derive the predicted spirometry values for the population.', 'contactPoint': 'RESPIRE@ed.ac.uk'}",59521b01-6adb-4dd3-8b40-dbeb51171e4f,"{'spatial': 'India', 'typicalAgeRange': '>18', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '0985f58b-87e0-42d2-9ee7-efd618abcd51', '1.0.0': 'b6a60be1-5d94-41f9-a426-5f9523a98d50', 'latest': 'b6a60be1-5d94-41f9-a426-5f9523a98d50'}","{'description': 'Spirometry is considered as a gold standard to detect the obstructive airway diseases (OADs) such as asthma and COPD. In India, use of spirometry among physicians and researchers to diagnose OADs is increasing day by day. Predictive values generated based on healthy population are used in interpretation of spirometry data. Currently, in India, most of the predicted values used in the spirometry data interpretation are based on predictive values from western populations. As no predictive values are available for the Indian population, physicians and researchers from India depend on the western countries guidelines such as ERS, ECHRS for the predictive values. A few attempts have been made to generate the predictive values for Indian population, but no conclusion has been drawn. We propose to use spirometry data from 2,500 adults from Vadu Health and Demographic Surveillance System (Vadu HDSS) population to develop the predictive values for the Western Indian population.\n\nFor further information, see: https://www.ed.ac.uk/usher/respire/chronic-respiratory-disorders/spirometry-predictive-values', 'isPartOf': 'BREATHE'}",b6a60be1-5d94-41f9-a426-5f9523a98d50,https://web.www.healthdatagateway.org/dataset/b6a60be1-5d94-41f9-a426-5f9523a98d50,"{'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'conformsTo': ['LOCAL'], 'format': ['CSV/PDF']}, 'access': {'dataProcessor': 'RESPIRE', 'dataController': 'RESPIRE', 'accessRights': 'Access is managed on a project-by-project basis. Contact the RESPIRE team: https://www.ed.ac.uk/usher/respire/about/projects', 'jurisdiction': 'IN', 'deliveryLeadTime': 'OTHER'}, 'usage': {'isReferencedBy': ['Normal spirometry predictive values for the Western Indian adult population. Agarwal D, Parker R, Pinnock H, Roy S, Ghorpade D, Salvi S, Khatavkar P, Juvekar S, RESPIRE collaboration. European Respiratory Journal. 2020;1902129.'], 'resourceCreator': 'RESPIRE Collaboration'}}","{'temporal': {'endDate': '2019-07-31', 'startDate': '2018-08-01'}}",2020-08-25T18:21:14Z,,1.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-04-14T08:27:40Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Welsh Demographic Service (WDSD)', 'publisher': {'identifier': '5f3f98068af2ef61552e1d75', 'name': 'SAIL', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'abstract': 'Register of all individuals registered with a Welsh GP, includes individuals anonymised address and practice history.', 'keywords': ['Welsh', 'SAIL', 'NCS', 'National Core Study', 'COVID-19', 'core', 'WDSD']}",8a8a5e90-b0c6-4839-bcd2-c69e6e8dca6d,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150', 'pathway': 'All pathways about patients living in Wales', 'spatial': ['https://www.geonames.org/2634895/wales.html'], 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'6.0.0': '0c10277e-d82c-412f-a640-a22a7f37fdf4', '7.0.0': 'b6f26b11-da8d-402a-91c7-3b7122be274c', 'latest': 'b6f26b11-da8d-402a-91c7-3b7122be274c'}","{'description': 'Administrative information about individuals in Wales that use NHS services; such as address and practice registration history. It replaced the NHS Wales Administrative Register (NHSAR) in 2009.\n\nData drawn from GP practices via Exeter System.\n\nThis dataset provides linkage from anonymous individual to anonymous residences, thus enable to group households of individuals.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/'], 'isPartOf': 'NOT APPLICABLE'}",b6f26b11-da8d-402a-91c7-3b7122be274c,https://web.www.healthdatagateway.org/dataset/b6f26b11-da8d-402a-91c7-3b7122be274c,"{'access': {'accessRights': ['https://saildatabank.com/application-process/'], 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'dataProcessor': 'SAIL Databank', 'jurisdiction': ['GB'], 'deliveryLeadTime': '2-6 MONTHS', 'dataController': 'SAIL Databank', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.'}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE', 'RESEARCH SPECIFIC RESTRICTIONS'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'isReferencedBy': ['Song et al., (2018); Assessing lifestyle risk factors and inequalities in health outcomes in most deprived communities in Wales. https://doi.org/10.23889/ijpds.v3i4.789'], 'resourceCreator': ['NHS Wales Informatics Service (NWIS)']}, 'formatAndStandards': {'language': ['en'], 'format': ['SQL database table'], 'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL']}}","{'temporal': {'distributionReleaseDate': '2019-09-26', 'timeLag': '1-2 MONTHS', 'startDate': '1990-01-01', 'endDate': '2021-07-26', 'accrualPeriodicity': 'QUARTERLY'}, 'origin': {'collectionSituation': ['PRIMARY CARE', 'OTHER'], 'purpose': ['STUDY', 'ADMINISTRATIVE'], 'source': ['EPR']}}",2021-09-13T15:27:19Z,"[{'measuredValue': '3000000', 'observationDate': '01/09/2021', 'measuredProperty': 'Count', 'observedNode': 'EVENTS'}]",7.0.0,"{'derivation': ['Not Available'], 'tools': ['https://conceptlibrary.saildatabank.com/'], 'qualifiedRelation': ['Yes. To any SAIL dataset & reference data.']}",2021-09-27T10:22:06Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 3, 'structuralMetadata.tableName': 3, 'structuralMetadata.tableDescription': 3, 'structuralMetadata.dataElementsCount': 22, 'structuralMetadata.columnName': 22, 'structuralMetadata.columnDescription': 22, 'structuralMetadata.dataType': 22, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '946f9ac8-fa67-4d8a-8297-4e82f50be169', 'description': 'Complete address history for those in AR_PERS, including at LSOA geography-level. Known issues include full-time students, people failing to notify GPs of change in address, and/or people registering with multiple GPs [de-registration of patients]. Continuous periods of residency may not exist; gaps of more than 30 days are flagged.', 'name': 'AR_PERS_ADD', 'dataElementsCount': 10, 'dataElements': '957e2653-c769-42e6-b7bc-998c5ff069b6, 7ab44d5f-05d7-406d-af7d-b3b0bb0dd540, 6db97a76-2b14-4636-b053-2f64c86a6479, 80f34f26-30da-4c0e-b782-3ee732650a3e, d3acfa68-6543-419e-8414-222247d6d0d8, f01dd57c-260a-48c4-b493-cac629d9c78e, ed3a900c-a97d-42e0-b7e7-199064682d15, 56cb77f9-8410-4d3f-97f2-fe385f9c804e, ce755b80-5b97-48dd-b9aa-72ba6e078829, 1e10f30a-6480-4955-a199-ec438963a1d5'}, {'id': '27eec61d-d980-405c-837f-1474816e6e98', 'description': 'GP registration history for people registered with GP practices in Wales; primary care-level data related to the Welsh Demographic Service. Information is excluded for those Welsh residents that are registered with a GP practice in England. Each row is a separate GP registration period. Covers all Practices (not just SAIL) and this is flagged.', 'name': 'AR_PERS_GP', 'dataElementsCount': 6, 'dataElements': 'e64cdd5d-f947-4a6a-97bc-6fd69b8a50a6, f0002919-c706-4fe7-abed-918ed2d407a3, 11e57620-ef24-4360-94b1-e9ea29747043, 3913c8e4-36e2-4093-b0fc-d49aec612e4c, e152030d-61af-4fff-9f44-412eb74c7381, f162ab63-6634-44b6-8bcb-7949dc90c25a'}, {'id': 'f5835013-b291-4306-b4ff-64f57f49d43a', 'description': 'Records of people [living or deceased] who have both lived in Wales, and have ever registered with a GP practice in Wales. Provides demographic details e.g. date of birth/death, gender, etc.', 'name': 'AR_PERS', 'dataElementsCount': 6, 'dataElements': 'e0e8ec56-3944-4d31-bfb7-b0d857c353d1, 89643f0e-c0fb-45b2-8361-1a139a634390, aeb4520f-f524-47a3-90ac-951580a2c372, 44aac124-f2fc-4614-af3d-926e4d970d5c, b052122a-d698-4acc-aab4-41a23d9a8015, 25d9015f-dd7c-4607-af45-fb544b7dac08'}]}"
"{'title': 'Welsh Longitudinal GP Dataset - Welsh Primary Care (WLGP)', 'keywords': ['Primary care', 'GP', 'SAIL', 'NCS', 'National Core Study', 'COVID-19', 'WLGP', 'core'], 'abstract': 'Attendance and clinical information for all general practice interactions: includes patients symptoms, investigations, diagnoses, prescribed medication and referrals to tertiary care.', 'publisher': {'name': 'SAIL', 'memberOf': 'ALLIANCE', 'identifier': '5f3f98068af2ef61552e1d75'}, 'contactPoint': 'SAILDatabank@swansea.ac.uk'}",33fc3ffd-aa4c-4a16-a32f-0c900aaea3d2,"{'typicalAgeRange': '0-150', 'spatial': ['https://www.geonames.org/2634895/wales.html'], 'followup': '1 - 10 YEARS', 'pathway': 'Primary Care', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'9.0.0': '82d2c8ad-30db-4020-994e-a84be9e9ffe5', '11.0.0': 'b6fe3b50-aff3-435d-9c57-8b46eaa34671', '10.0.0': '8a271882-9987-4125-af7b-dceed81e711e', 'latest': 'b6fe3b50-aff3-435d-9c57-8b46eaa34671'}","{'description': 'This dataset covers 78% of the population of Wales and is linkable with anonymised fields for individuals and GPs to other datasets, including bespoke project specific cohorts. Each GP practice uses a clinical information system to maintain an electronic health record for each of their patients; capturing the signs, symptoms, test results, diagnoses, prescribed treatment, referrals for specialist treatment and social aspects relating to the patients home environment.\n\nThe majority of the data is entered by the clinician during the patient consultation. Test results are electronically transferred from secondary care systems.\n\nThere are no standard rules for recording data within primary care clinical information systems. Therefore, each individual clinician can record information in their own way. The majority use Read Code Terminology, however, sometimes this is applied behind the scenes by the clinical system and sometimes local codes are used. Read codes are not as precise as ICD 10 or OPCS codes.\n\nCoding standards have been agreed on for conditions monitored by the QOF (Quality Outcomes Framework) returns. Since the implementation of QOF these conditions have been coded in a more consistent way.\n\nTime coverage varies between each practice.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/'], 'isPartOf': 'NOT APPLICABLE'}",b6fe3b50-aff3-435d-9c57-8b46eaa34671,https://web.www.healthdatagateway.org/dataset/b6fe3b50-aff3-435d-9c57-8b46eaa34671,"{'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'isReferencedBy': ['Akbari et al (2018) Analysis of factors associated with changing general practice in the first 14 years of life in Wales using linked cohort and primary care records: implications for using primary care databanks for life course research. https://doi.org/10.23889/ijpds.v3i4.818'], 'resourceCreator': ['Welsh General Practices that have signed up to SAIL']}, 'access': {'accessRights': ['https://saildatabank.com/application-process/'], 'jurisdiction': ['GB'], 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'dataController': 'SAIL Databank', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'dataProcessor': 'SAIL Databank'}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['READ'], 'language': ['en'], 'format': ['SQL database table']}}","{'origin': {'collectionSituation': ['IN-PATIENTS'], 'source': ['EPR'], 'purpose': ['DISEASE REGISTRY']}, 'temporal': {'startDate': '2000-01-01', 'distributionReleaseDate': '2021-05-07', 'accrualPeriodicity': 'MONTHLY', 'endDate': '2021-07-01', 'timeLag': 'LESS 1 WEEK'}}",2021-09-17T16:23:27Z,"[{'measuredValue': '3500000', 'observedNode': 'PERSONS', 'observationDate': '14/05/2021', 'measuredProperty': 'Count'}]",11.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Yes. 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"{'title': 'UHB 100K Genomics patient clinical data including their acute care contacts', 'contactPoint': 'PIONEER@UHB.NHS.UK', 'keywords': ['Genomics', 'West Midlands', 'PIONEER', 'Birmingham', 'Rare Cancers', 'Rare diseases', 'Cardiovascular', 'endocrine', 'renal', 'neurological', 'metabolic', 'respiratory', 'rheumatology', 'skeletal', 'Gynaecological cancers', 'fallopian', 'endometrial', 'ovarian', 'primary peritoneal', 'lung cancer', 'prostate cancer', 'colorectal cancer', 'breast cancer', 'sarcoma', 'paediatric sarcoma', 'renal cancer', 'adult brain tumour', 'bladder cancer', 'melanoma', 'Upper gastrointestinal (GI) tumours', 'Hepatopancreatobiliary tumours', 'Testicular cancer', 'Head and Neck Cancers', 'Cancer of Unknown Primary', 'Childhood Solid Tumours', 'Neuroendocrine tumours (except benign)', 'Haematological Malignancies', 'thyroid cancers', 'Ophthalmology '], 'abstract': 'Longitudinal, routine data for UHB NHSFT patients recruited to the 100K Genomes project that accessed Acute Care at UHB: This includes data for cancer and rare diseases in adults and children, with investigations undertaken and outcomes.', 'publisher': {'memberOf': 'HUB', 'identifier': '607db9c5e1f9d3704d570d5f', 'name': 'PIONEER'}}",ceae4fe0-4e98-4e3c-85db-e86539aade81,"{'pathway': 'Secondary care dataset', 'typicalAgeRange': '0-100', 'spatial': 'https://www.geonames.org/2634343/west-midlands.html', 'followup': '> 10 YEARS', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.8': 'fed0d62b-f7f7-475c-89c9-67caa374f970', '2.0.0': 'b789c975-7042-445c-bfa6-c24e5ca8a983', 'latest': 'b789c975-7042-445c-bfa6-c24e5ca8a983'}","{'description': '1 in 17 people are born with or develop a rare disease during their lifetime. 80% of rare diseases have an identified genetic component. However, there are usually significant diagnostic delays. The 100k Genome project was established to collect clinical data, genomic sequencing and samples from people with cancer and rare diseases, to better understand disease and find novel treatments and interventions. This includes rare cardiovascular, ciliopathy, endocrine, gastroenterological, haematological, metabolic, neurological, renal, respiratory skeletal and rheumatological disorders and cancers. \n\nThe PIONEER University Hospital Birmingham (UHB) secondary care 100k genomics dataset contains granular demographic, morbidity, treatment and outcome data, supplemented with acute care contacts with serial physiology, blood biomarker data from UHB patients recruited to this programme, to better understand the acute healthcare needs of this group of patients.\n\nPIONEER geography: The West Midlands has a population of 5.9M and includes a diverse ethnic and socio-economic mix. There is a higher than average percentage of minority ethnic groups and a higher than average proportion of patients with rare diseases. Birmingham is home to the first Centre for Rare Diseases for adults and children, treating more than 500 rare diseases and 9000 patients per year.\n\nElectronic Health Records: University Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services and specialist care across four hospital sites, with 2.2M patient episodes per year, 2750 beds and 100 ITU beds. \n\nScope: All patients recruited to the 100K genome project from UHB. This includes all routinely collected health data for all these patients, but data is uniquely supplemented with all acute care contacts through UHB. The dataset includes highly granular patient demographics and co-morbidities taken from ICD-10 and SNOMED-CT codes. Serial, structured data pertaining to acute care process (timings, staff grades, specialty review, wards), presenting complaint, acuity, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations), all blood results, microbiology, all prescribed and administered treatments (fluids, antibiotics, inotropes, vasopressors, organ support), all outcomes.\n\nAvailable supplementary data: Matched controls; ambulance, synthetic data.\nAvailable supplementary support: Analytics, Model build, validation and refinement; A.I.; Data partner support for ETL process, Clinical expertise, Patient and end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.', 'isPartOf': 'Part of family of datasets: https://www.genomicsengland.co.uk/nhs-gms/data/', 'associatedMedia': ['https://www.genomicsengland.co.uk/about-genomics-england/the-100000-genomes-project/', '']}",b789c975-7042-445c-bfa6-c24e5ca8a983,https://web.www.healthdatagateway.org/dataset/b789c975-7042-445c-bfa6-c24e5ca8a983,"{'usage': {'resourceCreator': ['University Hospitals Birmingham NHS Foundation Trust'], 'isReferencedBy': ['https://www.genomicsengland.co.uk/about-gecip/publications/further-research-outputs/', ''], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'investigations': ['https://www.genomicsengland.co.uk/about-gecip/research-2/', ''], 'dataUseLimitation': ['RESEARCH USE ONLY']}, 'access': {'jurisdiction': ['GB-GB'], 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'dataProcessor': 'NOT APPLICABLE', 'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/'], 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'deliveryLeadTime': '1-2 MONTHS'}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'format': ['SQL'], 'vocabularyEncodingScheme': ['SNOMED CT', 'ICD10'], 'language': ['en']}}","{'origin': {'purpose': ['CARE'], 'collectionSituation': ['CLINIC', 'IN-PATIENTS', 'COMMUNITY', 'HOME'], 'source': ['EPR']}, 'temporal': {'timeLag': 'LESS 1 WEEK', 'distributionReleaseDate': '2020-10-01', 'accrualPeriodicity': 'STATIC', 'startDate': '2000-01-01', 'endDate': '2020-05-05'}}",2021-02-19T18:39:45Z,"[{'observedNode': 'PERSONS', 'disambiguatingDescription': '3637 patients recruited to the 100,000 Genomic project within the West Midlands including rare diseases and cancers.', 'observationDate': '18/12/2019', 'measuredProperty': 'COUNT', 'measuredValue': '3637'}]",2.0.0,"{'derivation': ['Part of family of datasets: https://www.genomicsengland.co.uk/nhs-gms/data'], 'qualifiedRelation': ['Part of family of datasets: https://www.genomicsengland.co.uk/nhs-gms/data']}",2021-08-06T16:02:21Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 3, 'structuralMetadata.tableName': 3, 'structuralMetadata.tableDescription': 3, 'structuralMetadata.dataElementsCount': 28, 'structuralMetadata.columnName': 28, 'structuralMetadata.columnDescription': 28, 'structuralMetadata.dataType': 28, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '4f0cdf59-0080-4b9e-8b9d-1aaab4d5056e', 'description': '100K Genomes Patients', 'name': 'Participant', 'dataElementsCount': 23, 'dataElements': 'da286d68-4c99-42a6-9697-e71881861d50, bfc68152-3425-4feb-ad5c-48f3cc66f9f9, 65f35504-6175-4a03-927d-f9709ab6dcf4, 172218c3-c679-4549-ba4f-a14f1f05b007, 40c8858b-8de9-4474-a6e5-c5fb31262563, 73cab78b-ba05-40df-b7c2-6aeb7a525841, c977a79e-a5cf-434c-b65f-596a935dff68, 85123d20-fb03-4fd6-9c4d-0ac4f4c0b1a8, 59e73c48-abec-40a4-b34d-e0139eaddb0c, 0b188ead-5c30-4d68-a865-0ba0ff343a44, 7540f906-79e5-4402-89dd-4daef1d3e59e, ecce5e13-e3cd-4a31-ab3d-de33d7da8c26, 5755b8cf-cc59-4702-9362-0746295c845e, 6db39efc-9d82-47de-8f3a-cf5645b3dccf, 7ee179cd-0549-4ac7-8ab8-ed73ffdc61f0, f445daa7-9fd4-447e-b012-e4eed27286a4, 97f04303-aa30-4eff-b9a6-65b3d720ae05, 17f0bb14-2596-4502-b6fb-c142ebb52bd7, f9bb66ce-1898-47c2-9846-d42344a12ae6, ce7bad99-a68c-469e-a7ab-6e6d5405d156, e140126e-6d19-4b9b-8e36-a532ba52c6c8, 5273c4bf-86ec-473a-a6f2-413a80117fdf, 7afb0f96-c995-4701-9557-5d899f88dc15'}, {'id': '423cacb2-2994-4fad-bdcb-57da062062c7', 'description': 'HPO Code & Desc', 'name': 'Phenotype', 'dataElementsCount': 2, 'dataElements': '8d9c435a-7eef-498b-b156-adb5f7ce77d7, c41e97a6-449f-44c0-870e-051140c83b5c'}, {'id': '975f2319-7b74-46be-b1c7-c2b41d0b26de', 'description': 'Samples', 'name': 'Specimen', 'dataElementsCount': 3, 'dataElements': 'e0f38d1f-82d1-4600-99af-bc2a93de532c, 26a6ecff-e1d2-45b0-9c82-5403f0d5d4e8, 726769ce-b20c-4002-b15e-cbbcaeb74d43'}]}"
"{'title': 'Public Health England Seroepidemiology Unit', 'contactPoint': 'ezra.linley@phe.gov.uk', 'publisher': {'contactPoint': 'ezra.linley@phe.gov.uk', 'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY'}, 'abstract': 'Collection of samples and data across the following diseases: Fit and well.', 'keywords': ['PHE', 'Seroepidemiology Unit', 'UKCRC Tissue Directory', 'PHL', 'Public Health England', 'SEU', 'Fit and well'], 'doiName': 'Not Available'}",89497432-17e0-49f4-96a4-65ef57d07701,"{'physicalSampleAvailability': ['SERUM'], 'spatial': 'England', 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '0b36d0d6-599d-405d-8479-c367c8219866', '3.0.0': 'b7a352ee-6306-4bd8-b9bc-f2a69fe17d70', '1.0.0': '8b803dc0-f25f-4da8-8642-51e29f0004b5', '2.0.0': '98a03f2b-1a67-4653-a4f5-f9db7262a94d', 'latest': 'b7a352ee-6306-4bd8-b9bc-f2a69fe17d70'}","{'description': 'The basis of the PHE (formerly the Health Protection Agency) Seroepidemiology Programme is a large collection of sera representative of the general population of England, forming a unique and valuable public health resource. The collection is stored and maintained by the Seroepidemiology Unit (SEU) at the Public Health Laboratory (PHL), Manchester. \nSera submitted to the SEU are residues of specimens submitted for diagnostic testing.  They sample the population range and are anonymised prior to archiving (retaining age, sex, date of collection and source laboratory only). Collection of sera is continuing through collaboration with the PHE Microbiology Services Division (MSD) and some NHS laboratories throughout England, and has occurred annually since 1986.  Over 230,000 sera are now stored and catalogued. The collection can be made available for testing to anyone wishing to use it to address issues related to public health policy.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",b7a352ee-6306-4bd8-b9bc-f2a69fe17d70,https://web.www.healthdatagateway.org/dataset/b7a352ee-6306-4bd8-b9bc-f2a69fe17d70,"{'access': {'jurisdiction': 'GB-ENG', 'dataProcessor': 'Not Applicable', 'accessRequestCost': 'Not specified', 'dataController': 'Public Health England', 'accessRights': 'Please contact the publisher using Contact Point details provided.', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED.'}, 'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}}","{'temporal': {'startDate': '1986-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:16:37Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:11:13Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'CPRD Aurum SGSS', 'abstract': 'CPRD Aurum linked Second Generation Surveillance System (SGSS) data contains SARS-CoV-2 testing (swab samples, PCR test method) offered to those in hospital and NHS key workers (i.e. Pillar 1) and includes positive tests results only.', 'contactPoint': 'enquiries@cprd.com', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c2e1f9d3704d570cee', 'name': 'CPRD'}, 'keywords': ['SARS-CoV-2', 'COVID-19', 'Surveillance', 'Patient'], 'doiName': 'https://doi.org/10.48329/bejk-qa30'}",981b8787-45be-4f61-8625-3e3aae6ef10a,"{'spatial': ['https://www.geonames.org/6269131/england.html'], 'pathway': 'Secondary care', 'followup': '1 - 10 YEARS', 'typicalAgeRange': '0-115', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'b8a46533-aa49-49d9-a0a2-7326e37f958e'},"{'description': 'Second Generation Surveillance System (SGSS) is the national laboratory reporting system used in England to capture routine laboratory data on infectious diseases and antimicrobial resistance. The SARS-CoV-2 testing started in UK laboratories on 24/02/2020, with the SGSS data reflecting testing (swab samples, PCR test method) offered to those in hospital and NHS key workers (i.e. Pillar 1). The CPRD-SGSS linked data currently contain positive tests results only.', 'isPartOf': 'CPRD Aurum', 'associatedMedia': ['https://www.cprd.com/linked-data']}",b8a46533-aa49-49d9-a0a2-7326e37f958e,https://web.www.healthdatagateway.org/dataset/b8a46533-aa49-49d9-a0a2-7326e37f958e,"{'usage': {'investigations': ['https://www.cprd.com/protocol-list'], 'dataUseRequirements': ['GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'resourceCreator': ['NHS Digital'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'NO LINKAGE', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY']}, 'formatAndStandards': {'conformsTo': ['NHS DATA DICTIONARY'], 'language': ['en'], 'format': ['Tab delimited text'], 'vocabularyEncodingScheme': ['OTHER']}, 'access': {'accessService': 'Access to CPRD data, including UK Primary Care Data, and linked data such as Hospital Episode Statistics, is subject to protocol approval via CPRD’s Research Data Governance (RDG) Process. Independent scientific and patient advice is provided by Expert Review Committees (ERCs) and the Central Advisory Committee (CAC): https://www.cprd.com/research-applications', 'deliveryLeadTime': 'VARIABLE', 'accessRequestCost': ['https://www.cprd.com/pricing'], 'dataController': 'Clinical Practice Research Datalink', 'jurisdiction': ['GB-ENG'], 'dataProcessor': 'CPRD', 'accessRights': ['HTTPS://CPRD.COM/DATA-ACCESS']}}","{'temporal': {'endDate': '2021-02-23', 'distributionReleaseDate': '2022-02-04', 'accrualPeriodicity': 'QUARTERLY', 'startDate': '2020-03-01', 'timeLag': 'MORE 6 MONTHS'}, 'origin': {'collectionSituation': ['IN-PATIENTS', 'OTHER'], 'source': ['EPR'], 'purpose': ['OTHER']}}",2022-02-18T11:52:41Z,"[{'observedNode': 'PERSONS', 'measuredValue': 1720744, 'disambiguatingDescription': 'Number of unique CPRD Aurum patients linked to SGSS', 'observationDate': '04/02/2022', 'measuredProperty': 'Count'}]",1.0.0,"{'qualifiedRelation': ['CPRD Aurum', 'CPRD Aurum CHESS', 'CPRD Aurum ICNARC', 'Death Registration data for CPRD Aurum', 'HES Admitted Patient Care data for CPRD Aurum', 'HES Outpatient data for CPRD Aurum', 'HES Accident and Emergency data for CPRD Aurum', 'HES Diagnostic Imaging Dataset for CPRD Aurum', 'Patient postcode linked deprivation measures for CPRD Aurum', 'Practice postcode linked deprivation measures for CPRD Aurum', 'Rural-Urban classification for CPRD Aurum', 'Cancer registration data for CPRD Aurum', 'National Radiotherapy Dataset (RTDS) for CPRD Aurum,Systemic Anti-Cancer Treatment (SACT) data for CPRD Aurum', 'Mental Health Dataset (MHDS) for CPRD Aurum'], 'derivation': ['N/A'], 'tools': ['[]']}",2022-02-18T11:52:41Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 10, 'structuralMetadata.columnName': 10, 'structuralMetadata.columnDescription': 10, 'structuralMetadata.dataType': 10, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'a23a8568-1a42-4b61-a2e1-b5a594631f1d', 'description': 'Specimen file', 'name': 'Specimen file', 'dataElementsCount': 10, 'dataElements': '5a33970f-f01d-43bc-8e28-9ee299675862, ea32a58c-fec6-440c-a828-27aebd30cc6c, b318e9d5-b7ec-46c4-bf4b-ead74fe528ed, fc88b2d8-190b-4f3b-a7c5-bc7c423e56e8, fa3054ac-7b86-4a95-935f-8dbb2b0b0024, a0380b05-9cd4-427e-95dc-5b819914d41c, 20bff88b-a729-4e5b-8556-439db577b81f, 3bf90d44-794c-452c-a517-f0224a836d83, ba324cd5-e8d7-4549-bdcc-9584f841e137, 3f4a867c-9fc3-4686-81ed-5123b0c8ef5d'}]}"
"{'title': 'COVID-19 Detection from Chest X-Rays using Deep Learning', 'publisher': {'name': 'BREATHE', 'memberOf': 'HUB', 'identifier': '607db9c2e1f9d3704d570ce6'}, 'keywords': ['BREATHE', 'Deep learning', 'RESPIRE', 'Pakistan', 'Covid-19', 'Chest X-rays'], 'contactPoint': 'RESPIRE@ed.ac.uk', 'abstract': 'We aim to establish a reliable diagnostic tool based on a deep-learning framework for the screening of patients who present with COVID-19 related abnormalities on chest x-rays.'}",57526718-0a9a-42ad-8b7a-582d9ef96d13,"{'spatial': 'https://www.geonames.org/1168579/islamic-republic-of-pakistan.html', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'a99bfa8f-4fdb-4abd-a773-06a972bf9114', '2.0.0': 'b95a3ebd-f1f2-4f5f-a598-1eaa60dd1790', '0.0.1': '3aa01779-831e-478f-b4e3-7c111d642b18', 'latest': 'b95a3ebd-f1f2-4f5f-a598-1eaa60dd1790'}","{'description': 'COVID-19 is a pandemic having devastating implications on healthcare systems globally. Evidence shows that COVID-19 infected patients with pneumonia may present on chest x-rays with a pattern that is difficult to characterise using only the human eye. Therefore, artificial intelligence (AI) techniques using deep learning, which can consistently identify infected patients from non-infected ones given a radiographic examination of the patient, can be used as a reliable diagnostic tool. Considering chest x-rays are one of the most commonly performed radiological studies (coupled with the near universal availability of testing machines), applying AI techniques on them could prove to be valuable for COVID-19 diagnosis during clinical management. We therefore aim to establish a reliable diagnostic tool based on a deep-learning framework for the screening of patients who present with COVID-19 related abnormalities on chest x-rays. Over the course of 7 months we will build a dataset using open source data which are freely available, as well as with de-identified patient data collected from health institutions in Pakistan. Using this dataset, a deep learning model will be trained, which would be able to accurately screen patients who present with abnormalities relevant to COVID-19 in their radiographic examination. This tool will ultimately aid in expediting the diagnosis and referral of COVID-19 patients, resulting in improved clinical outcomes.\n\nFor further information, see: https://www.ed.ac.uk/usher/respire/covid-19/covid-19-detection-chest-x-rays', 'isPartOf': 'BREATHE'}",b95a3ebd-f1f2-4f5f-a598-1eaa60dd1790,https://web.www.healthdatagateway.org/dataset/b95a3ebd-f1f2-4f5f-a598-1eaa60dd1790,"{'formatAndStandards': {'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL'], 'format': ['text'], 'language': ['en']}, 'access': {'jurisdiction': ['PK'], 'accessService': 'Access is managed on a project-by-project basis. Contact the RESPIRE team.', 'dataController': 'RESPIRE', 'accessRights': ['https://www.ed.ac.uk/usher/respire/about/projects'], 'dataProcessor': 'RESPIRE'}, 'usage': {'resourceCreator': ['RESPIRE Collaboration'], 'isReferencedBy': ['Not Available']}}","{'temporal': {'accrualPeriodicity': 'STATIC', 'startDate': '2020-08-01', 'timeLag': 'NOT APPLICABLE', 'endDate': '2021-01-31'}}",2020-07-30T13:53:50Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '1', 'observationDate': '31/01/2021', 'measuredProperty': 'Count'}]",2.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-08-19T12:24:23Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'ESPAC-TPlus', 'publisher': {'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE', 'contactPoint': 'chloe.smith@liverpool.ac.uk'}, 'abstract': 'Collection of samples and data across the following diseases: Carcinoma in situ of pancreas', 'contactPoint': 'chloe.smith@liverpool.ac.uk', 'keywords': ['Carcinoma in situ of pancreas', 'UKCRC Tissue Directory', 'ESPAC-Tplus'], 'doiName': 'Not Available'}",47f979bc-da9d-4e9e-9f2b-15e09366db04,"{'spatial': 'England', 'typicalAgeRange': 'Not Known', 'physicalSampleAvailability': ['IN PROGRESS']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '2dd3d95f-9ea7-4636-a1ae-c094157c5f7b', '3.0.0': 'b9642fb3-3bee-491b-8d83-22f9de0fd77f', '2.0.0': '2aa58bb8-83d8-455a-87e6-d567ae4a379c', '1.0.0': '5e6522a8-d3ec-47a5-a529-c0aa5b6ae4e0', 'latest': 'b9642fb3-3bee-491b-8d83-22f9de0fd77f'}","{'description': 'To centralise tissue and other clinical samples from the ESPAC studies, and make them available for future studies. Storage of the samples is designed to facilitate specific studies on response to chemotherapeutics. These separate studies will be subject to individual ethics applications. If successful they will allow subgroups of patients to be identified who will be predicted to benefit from particular chemotherapeutic regimens, improving survival for individual patients and facilitating clinical trials.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",b9642fb3-3bee-491b-8d83-22f9de0fd77f,https://web.www.healthdatagateway.org/dataset/b9642fb3-3bee-491b-8d83-22f9de0fd77f,"{'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}, 'access': {'accessRights': 'Please contact the publisher using Contact Point details provided', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'jurisdiction': 'GB-ENG', 'accessRequestCost': 'Not specified', 'dataProcessor': 'Not Applicable', 'dataController': 'University of Liverpool'}, 'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2010-01-01'}}",2020-01-13T17:05:19Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T15:59:37Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': ""2019 UK Parkinson's Audit - Patient Reported Experience Measure (PREM)"", 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '60a630c77dd392a16e228a92', 'name': 'PARKINSONS UK'}, 'keywords': ['Access', 'Information Provision', 'Inpatient Medication', 'Carers'], 'contactPoint': 'audit@parkinsons.org.uk', 'abstract': ""The dataset contains data provided by 8247 people affected by Parkinson's (or by their carer on their behalf) attending 451 services participating in the audit on their experiences of the whole of their Parkinson's service.""}",6a6c4568-59e9-4760-89d6-07558a24944c,"{'spatial': ['https://www.geonames.org/2635167/united-kingdom-of-great-britain-and-northern-ireland.html'], 'followup': 'UNKNOWN', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '20-99', 'pathway': ""The data covers an individual's experience of their whole Parkinson's service - the current service being visited, but also the experience at diagnosis and whilst an inpatient (where relevant) throughout their lifetime living with Parkinson's.""}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'b97ff350-f84d-4739-a4d6-f3a607063799'},"{'description': ""The UK Parkinson’s Audit assesses care provided to people with Parkinson's by a range of clinical specialties against evidence-based guidelines. The audit is open to services across the UK - secondary care (non-acute) and community services.\n\nThe audit includes a Patient Reported Experience Measure (PREM) which takes the form of a patient questionnaire which can be completed by any individual who attends one of the services (elderly care, neurology, physiotherapy, occupational therapy and speech and language therapy) participating in the audit. The questionnaire can be completed by the person with Parkinson’s or by a carer on their behalf.  No patient identifiers are collected. \n\nThe PREM questions cover the individual’s experiences of the whole of their Parkinson’s service, not only the specialty which has handed them the questionnaire to complete.\n\nThe questionnaire is completed and sealed by the participant - the service does not have sight of the completed questionnaire. Each service must return at least ten questionnaires in order for their PREM data to be included in the analysis.\n\nThe 2019 audit received 8,247 completed PREM questionnaires from 451 (77.7%) of the participating services.\n\nThe data is available by UK Parkinson’s Excellence Network region. The UK Parkinson's Excellence Network is a network of health and social care professionals working to improve Parkinson's services administered with support from Parkinson’s UK. Professionals can join the Network to access resources, increase their knowledge of Parkinson's and collaborate with people affected by Parkinson's to transform health and care services. \n\nThe audit is the recognised quality improvement tool for the Excellence Network, providing an important baseline against which progress can be measured, informing national, regional and local service improvement priorities and plans to achieve better services for people living with the condition. \n\nThe regions are: \n\nEngland:\nCheshire and Merseyside\nEast of England\nEast Midlands\nGreater Manchester, Lancashire and South Cumbria\nLondon\nNorth East and Cumbria\nPeninsula\nSouth East Coast\nSouth West\nThames Valley\nWessex\nWest Midlands\nYorkshire and Humber\n\nScotland:\nNorth Scotland\nSouth and East Scotland\nWest Scotland\n\nNorthern Ireland:\nNorthern Ireland\n\nWales:\nNorth and Mid Wales\nSouth Wales\n\nOther:\nGuernsey\nIsle of Man\nRepublic of Ireland\n\nInformation about the regions can be found here:  https://www.parkinsons.org.uk/professionals/local-parkinsons-excellence-network-groups"", 'isPartOf': ""2019 UK Parkinson's Audit"", 'associatedMedia': ['http://parkinsons.org.uk/audit']}",b97ff350-f84d-4739-a4d6-f3a607063799,https://web.www.healthdatagateway.org/dataset/b97ff350-f84d-4739-a4d6-f3a607063799,"{'access': {'accessRights': ['http://parkinsons.org.uk/HDRUK'], 'accessService': ""The audit team at Parkinson's UK will respond to all requests for access to this data within 5 working days."", 'deliveryLeadTime': '2-4 WEEKS', 'jurisdiction': ['GB-GB'], 'dataController': ""Parkinson's UK""}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': [""Parkinson's UK""]}, 'formatAndStandards': {'format': ['Text'], 'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'conformsTo': ['LOCAL']}}","{'origin': {'purpose': ['AUDIT'], 'source': ['PAPER BASED'], 'collectionSituation': ['OUTPATIENTS', 'COMMUNITY']}, 'temporal': {'timeLag': 'NOT APPLICABLE', 'endDate': '2019-09-30', 'distributionReleaseDate': '2020-01-31', 'accrualPeriodicity': 'STATIC', 'startDate': '2019-05-01'}}",2021-10-22T14:32:38Z,"[{'observedNode': 'PERSONS', 'measuredValue': '8247', 'disambiguatingDescription': ""8247 patient cases are included submitted by 451 \n(77.7%) of the services participating in the 2019 UK Parkinson's Audit."", 'observationDate': '30/09/2019', 'measuredProperty': 'Count'}]",1.0.0,{'qualifiedRelation': ['ALL']},2021-10-22T14:32:39Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 39, 'structuralMetadata.columnName': 39, 'structuralMetadata.columnDescription': 39, 'structuralMetadata.dataType': 39, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'b9585dd6-3b63-4c2a-b446-6c33d1e6ccf4', 'description': ""Responses of people affected by Parkinson's about the quality of their whole Parkinson's service"", 'name': 'PREM', 'dataElementsCount': 39, 'dataElements': 'd7127a1a-5381-490a-b2db-02b4daac9b5f, 2f3ca60c-f0b8-49a6-a1ab-745399347349, bacecb16-697b-4e87-9d60-a5de38735171, c23cda00-037d-4f56-951a-82301bb0ae56, b6b5bcbc-4b89-4928-b935-5b37fb74a588, 8e8117b9-7a6b-4b4d-b32b-3874bc753ef7, cbb576d1-394d-47d1-8795-b34e92950846, 76816c4b-91e0-4d11-8efd-4aba2b81f556, 440bfee1-3a38-4216-b9ca-6feec83506fd, bc11ad17-5a07-442e-8cb7-cd9da3724021, cadd1f13-b3c7-47e1-a69a-e298bd780cc5, 29eac5db-f5a5-4bb6-9e69-568e95f0a401, bbb10073-8f10-470b-bbc8-1d4b4e2abf4e, 040be856-46c7-4a55-b2ae-e37e924f0004, a09ace8e-03fd-401f-be72-5480748d4fe9, c77b763b-bd08-453c-bcca-086bef8c46b4, 85cb47ae-8062-4a3e-b10d-94b8757fe4bb, a6094507-8984-4a6f-b646-e09b779f41ea, e6ee64e4-fbd6-41b6-8dd2-248ead2764fd, 0a2a0e64-94ca-4d1d-9dbb-65152dd26304, 467932c5-b249-4713-8f48-abee2cee4bc2, 76bfac6f-32cf-47bb-bb2a-440edf518cbf, 4ac22274-80b5-44fc-bc36-7d3f3875ff52, 0ff606b1-c169-47ac-bde4-c5d1c567ffd0, c1aa70d8-cd6d-4d94-9b98-f6357fcdc247, 89936abd-43e4-4900-a2ab-f01971b273ed, 9b7ad73e-dbc4-41a5-a0f2-b6a8cd78f449, 62bfa375-9250-43ec-a205-25d4f155e255, 86522977-012b-4a41-a24d-39e74598ce59, 12bac6d7-a2c4-470c-8452-50c61d18b0ef, 47c796bf-475e-45ba-a994-2d2b877ccf78, e0b4e2a9-9eb5-4294-ba77-35be7b2b9ae3, dcfe5f52-cafb-4247-b522-18746cb0fafb, 9ad30c3f-d2e1-4e46-8140-a3a1f214606e, c8ae8a4a-8ea8-4ea9-becd-a9f970e3cdea, 77a4c54c-88ad-403e-a3d0-4c3b75a6053e, e1967c0c-8209-4814-92d6-b2e7d3394b5a, 5938b060-3367-4cad-abce-37cd6ceac0ca, 6971042e-4d24-42a1-824a-0f75a19b9b54'}]}"
"{'title': 'Hospitalised patients with diabetic emergencies & acute diabetic health concerns', 'contactPoint': 'PIONEER@UHB.NHS.UK', 'publisher': {'name': 'PIONEER', 'memberOf': 'HUB', 'identifier': '607db9c5e1f9d3704d570d5f'}, 'keywords': ['Diabetes', 'Type 2', 'Type 1', 'Hypoglycaemia', 'hyperglycaemia', 'diabetic ketoacidosis', 'hyperosmolar Hyperglycaemic state', 'diabetic coma', 'acidosis', 'insulin', 'injection', 'pump', 'metformin', 'sulphonylurea', 'GLP-1s', 'incretin mimetics', 'DPP-4 inhibitors', 'gliptins', 'alpha glucosidase inhibitors', 'glitazones', 'diabetic ulcer', 'diabetic eye disease', 'diabetic neuropathy', 'diabetic kidney disease', 'infection', 'sepsis', 'hospitalised', 'age', 'sex', 'ethnicity', 'socioeconomic status', 'investigations', 'physiology', 'procedures', 'outcomes', 'discharge', 'death', 'hospitalised', 'admission', 'secondary care'], 'abstract': 'Granular details of diabetic emergencies and acute admissions associated with diabetes-related health concerns: This includes demographic data with investigations, serial physiology and outcomes. The preceding care journey and outcomes are included.'}",0d556d7e-be27-4979-a09e-d419b2e838f3,"{'pathway': 'Representative of the unplanned/emergency patient patient for hospitalised patients within secondary care.  Diverse ethnicity and socioeconomic status.', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'OTHER', 'spatial': 'https://www.geonames.org/2634343/west-midlands.html', 'typicalAgeRange': '0-115'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'e2126f4c-cefc-4600-895d-c049253031e7', '2.0.0': 'b988b8bc-fbc5-40a7-8123-76ea5286b8c7', 'latest': 'b988b8bc-fbc5-40a7-8123-76ea5286b8c7'}","{'description': 'Background: Diabetes mellitus affects over 3.9 million people in the United Kingdom (UK), with over 2.6 million people in England alone. Each year more than 1 million people with diabetes are acutely admitted to hospital due to complications of their illness.  This includes Diabetic emergencies such as Diabetic Comas, Hypoglycaemia, Diabetic ketoacidosis and Diabetic Hyperosmolar Hyperglycaemic State.  Other causes for admission include diabetic ulcers, neuropathies, kidney disease and associated co-morbidities such as infection, cerebrovascular disease and cardiovascular disease.  This dataset includes acute all diabetic admissions to University Hospitals Birmingham NHS Trust from 2000 onwards (currently 35841 patients and 90258 spells), refreshed to include new admissions as they occur.\n\nGeography: The West Midlands (WM) has a population of 5.9 million and includes a diverse ethnic and socio-economic mix. There is a higher than average percentage of minority ethnic groups. WM has a large number of elderly residents but is the youngest population in the UK.  There are particularly high rates of physical inactivity, obesity, smoking and diabetes.  Each day more than 100,000 people are treated in hospital, see their GP or are cared for by the NHS.\n\nElectronic Health Records: University Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services and specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds and 100 ITU beds. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary and secondary care record (Your Care Connected) and a patient portal “My Health”. \n\nScope: All hospitalised patients admitted to UHB with a diabetes related health concern from 2000 onwards. Longitudinal and individually linked, so that the preceding and subsequent health journey can be mapped and healthcare utilisation prior to and after admission understood.  The dataset includes ICD-10 and SNOMED-CT codes pertaining to diabetes, as well as all co-morbid conditions.  Serial, structured data pertaining to process of care (timings, staff grades, specialty review, wards), presenting complaint, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations), all blood results, microbiology, all prescribed and administered treatments (fluids, nebulisers, antibiotics, inotropes, vasopressors, organ support), all outcomes.  Linked images available (radiographs, CT). \n\nAvailable supplementary support: Analytics, Model build, validation and refinement; A.I.; Data partner support for ETL (extract, transform and load) process, Clinical expertise, Patient and end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['']}",b988b8bc-fbc5-40a7-8123-76ea5286b8c7,https://web.www.healthdatagateway.org/dataset/b988b8bc-fbc5-40a7-8123-76ea5286b8c7,"{'formatAndStandards': {'vocabularyEncodingScheme': ['ICD10', 'SNOMED CT'], 'format': ['SQL'], 'conformsTo': ['LOCAL'], 'language': ['en']}, 'access': {'dataProcessor': 'NOT APPLICABLE', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/'], 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'jurisdiction': ['GB-GB'], 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'deliveryLeadTime': '1-2 MONTHS'}, 'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)']}}","{'temporal': {'startDate': '2004-10-06', 'distributionReleaseDate': '2020-02-22', 'accrualPeriodicity': 'QUARTERLY', 'timeLag': 'LESS 1 WEEK'}, 'origin': {'purpose': ['CARE'], 'source': ['EPR'], 'collectionSituation': ['IN-PATIENTS']}}",2021-04-09T12:19:35Z,"[{'observedNode': 'EVENTS', 'measuredValue': '91287', 'observationDate': '22/02/2021', 'measuredProperty': 'Count', 'disambiguatingDescription': '91287 spells in this dataset from 06.10.2004  to 18.02.2021'}]",2.0.0,{'derivation': ['Not Available']},2021-08-06T15:14:19Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 11, 'structuralMetadata.tableName': 11, 'structuralMetadata.tableDescription': 11, 'structuralMetadata.dataElementsCount': 155, 'structuralMetadata.columnName': 155, 'structuralMetadata.columnDescription': 155, 'structuralMetadata.dataType': 155, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'd843ca89-a4e4-4912-8be6-b5b5af0aeae7', 'description': 'Medication detail for each spell', 'name': 'DiabetesMedication', 'dataElementsCount': 39, 'dataElements': '8efeabd2-092b-4ec4-aff9-f0c93695d92c, 2e38ed46-7487-40c3-84c6-a426538cea26, a7430766-027a-4aaf-9a4d-9d525e35a215, 22f4ca93-530f-408d-b428-6123331ea7a7, ccab5914-607b-46dc-ae1b-5fa6b231b1b9, 7f7d1f52-f213-4bac-a201-ffc6efd37e95, 4505deb0-4930-43b8-a3ca-4b4331d0b2c4, 63d267e7-2a1e-481f-bba2-49a13d0c9765, a6b0b9d1-ae69-4afb-b290-9dc52c6252db, 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"{'title': 'Paediatric Intensive Care Audit Network - customised data collection', 'publisher': {'name': 'HQIP', 'memberOf': 'ALLIANCE', 'contactPoint': 'DataSharing@hqip.org.uk'}, 'contactPoint': 'DataSharing@hqip.org.uk', 'keywords': ['Paediatric', 'PICANet', 'PICU', 'Custom', 'Audit'], 'abstract': 'PICANet records details of the treatment of all critically ill children in paediatric intensive care units (PICUs).  Customised Data Collection is the collection of any additional data beyond the PICANet core dataset for the purposes of audit.'}",6c78af2c-3898-435e-b1f4-e6a44682dc71,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '3451317f-f70b-4473-8295-ddb20f3d68fa', '3.0.0': 'b9b4ee9a-3ffa-483d-8e46-16f862c83740', '1.0.0': '7b1ce0f2-8c45-4052-ac3e-9f659d96a206', '2.0.0': '09586db0-4da4-47f8-9434-13cbd2da2bb9', 'latest': 'b9b4ee9a-3ffa-483d-8e46-16f862c83740'}","{'description': 'Paediatric Intensive Care Audit Network (PICANet) is an audit database recording details of the treatment of all critically ill children in paediatric intensive care units (PICUs). Customised Data Collection is the collection of any additional data beyond the PICANet core dataset for the purposes of audit. Collection is voluntary and topics vary.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",b9b4ee9a-3ffa-483d-8e46-16f862c83740,https://web.www.healthdatagateway.org/dataset/b9b4ee9a-3ffa-483d-8e46-16f862c83740,"{'formatAndStandards': {'language': ['en']}, 'access': {'deliveryLeadTime': 'OTHER', 'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data\nhttps://www.picanet.org.uk/data-collection/data-requests/', 'jurisdiction': 'GB-GBN'}}",,2020-01-13T14:13:08Z,,3.0.0,,2021-04-14T08:10:11Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Pneumonia case management practices in selected communities in Pakistan', 'publisher': {'name': 'BREATHE', 'identifier': '607db9c2e1f9d3704d570ce6', 'memberOf': 'HUB'}, 'keywords': ['BREATHE', 'Pneumonia', 'Case management', 'RESPIRE', 'Pakistan'], 'abstract': 'We carried out an on the ground assessment of pneumonia case management practices at three levels of healthcare – community, first level care facility and practitioner level.', 'contactPoint': 'RESPIRE@ed.ac.uk'}",cf190350-74c6-45f2-8ede-69ace62eb88d,"{'typicalAgeRange': '0-5', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'https://www.geonames.org/1168579/islamic-republic-of-pakistan.html'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '8fc0a2cc-a8ce-4558-a98a-c514255833d8', '5.0.0': 'b9ffcd6b-cabd-4875-ac5c-5cb878f7290f', '1.0.0': '1ad1dcb6-d144-4484-85b6-f055aa1cb911', '4.0.0': '645364fc-dd74-439d-9356-b65a750465eb', '3.0.0': 'e91be46d-6add-41d3-8829-fea0425ecdc2', '0.0.1': '160190a1-45b9-4f7f-be57-55bc54c23f1f', 'latest': 'b9ffcd6b-cabd-4875-ac5c-5cb878f7290f'}","{'description': 'We carried out an on the ground assessment of pneumonia case management practices at three levels of healthcare – community, first level care facility and practitioner level. Observations were conducted across three provinces of Pakistan (Punjab, Sindh, Khyber Pakhtun Khwah), Azad Jammu Kashmir and the federal capital. Study sites were randomly selected. Upon site selection, observations were made across the following levels of healthcare: \n- community level, \n- first level care facility (FLCF) and \n- practitioner level both in the public and private sector.\n\nFor further information, see: https://www.ed.ac.uk/usher/respire/acute-respiratory-disorders/pneumonia-case-management', 'associatedMedia': ['https://www.ed.ac.uk/usher/respire/acute-respiratory-disorders/pneumonia-case-management'], 'isPartOf': 'BREATHE'}",b9ffcd6b-cabd-4875-ac5c-5cb878f7290f,https://web.www.healthdatagateway.org/dataset/b9ffcd6b-cabd-4875-ac5c-5cb878f7290f,"{'usage': {'resourceCreator': ['RESPIRE Collaboration'], 'isReferencedBy': ['Not Available']}, 'access': {'dataProcessor': 'RESPIRE', 'accessRights': ['https://www.ed.ac.uk/usher/respire/about/projects'], 'jurisdiction': ['PK'], 'dataController': 'RESPIRE'}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'format': ['CSV'], 'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en']}}","{'temporal': {'timeLag': 'NOT APPLICABLE', 'accrualPeriodicity': 'STATIC', 'startDate': '2018-05-01', 'endDate': '2019-07-31'}}",2020-07-30T11:35:37Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '1', 'observationDate': '31/07/2019', 'measuredProperty': 'Count'}]",5.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-08-17T15:55:54Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Joint Registry - Primary Elbow Replacement dataset', 'publisher': {'name': 'HQIP', 'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d23'}, 'keywords': ['Elbow', 'Replacement', 'Joint', 'NJR', 'Registry', 'Primary'], 'abstract': 'The NJR datasets collect continuous, prospective data on patients undergoing primary and revision total joint replacement (hip, knee, shoulder, elbow and ankle). The dataset covers the period 2003 to present and covers the UK and beyond', 'contactPoint': 'research@njr.org.uk'}",b06415af-9151-4ccc-83a1-ab859943fb2b,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150', 'spatial': ['https://www.geonames.org/3042225/isle-of-man.html,', 'https://www.geonames.org/3042363/guernsey.html', 'https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html', 'https://www.geonames.org/2641364/northern-ireland.html'], 'followup': 'UNKNOWN', 'pathway': 'Data is representative of the patient pathway. Readmissions for reasons other than revision surgery are not collected.'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '31e42cb6-b5d1-49ad-b831-c8ac4393fb72', '4.0.0': 'ba0bf718-05ab-4a6c-9419-1d04991d9ee9', '1.0.0': 'f5b35869-1546-4d63-bede-d21607b2dc3d', '2.0.0': '0092dc60-a0af-4d45-801c-b888210d6609', '3.0.0': '3e203d75-2b38-4e2f-bfca-793c710fbbd2', 'latest': 'ba0bf718-05ab-4a6c-9419-1d04991d9ee9'}","{'description': ""The National Joint Registry for England, Wales, Northern Ireland and the Isle of Man is a database containing details of all primary and revision total hip, knee, shoulder, elbow and ankle replacement procedures carried out in NHS and independent sector hospitals in England, Wales, Northern Ireland and the Isle of Man.  Primary hip replacement has its own specific dataset for procedures.\nInitially this data is collected during a patient's time at hospital as part of bespoke data collection to support the NJR . This is submitted to NEC Software Solutions (contracted to the NJR) for processing and is used to monitor the quality and safety of patient care and outcomes. \nThis same data can also be processed and used for non-clinical purposes, such as research and planning health services. Because these uses are not to do with direct patient care, they are called 'secondary uses'. This is the NJR research ready data set.\nNJR data covers all procedures carried out in NHS and independent sector hospitals  in England, Wales (from 2003), Northern Ireland )from 2013), the Isle of Man (from 2015) and the States of Guernsey (from 2019).\nEach NJR record contains a wide range of information about an individual patient treated at an NHS or independent sector hospital, including:\n• clinical information about surgical indications and operations\n• patient information, such as age group and gender\n• component information, such as the brand and size of prosthesis used\n• outcomes, such as whether a revision procedure has been undertaken\nNJR apply a strict statistical disclosure control in accordance with the NHS Digital protocol, to all published NJR data. This suppresses small numbers to stop people identifying themselves and others, to ensure that patient confidentiality is maintained.\nWho NJR data is for\nNJR can provide data for the purpose of healthcare analysis to the NHS, government and others including:\n• national bodies and regulators, such as the Department of Health, NHS England, Public Health England, NHS Improvement and the CQC\n• local Clinical Commissioning Groups (CCGs)\n• provider organisations\n• government departments\n• researchers and commercial healthcare bodies\n• National Institute for Clinical Excellence (NICE)\n• patients, service users and carers\n• the media\nUses of the statistics\nThe statistics are known to be used for:\n• national policy making\n• benchmarking performance against other hospital providers or CCGs  \n• academic research\n• analysing service usage and planning change\n• providing advice to ministers and answering a wide range of parliamentary questions\n• national and local press articles\n• international comparison\nMore information can be found at http://www.njrcentre.org.uk/njrcentre/"", 'associatedMedia': ['https://www.njrcentre.org.uk/njrcentre/Research/Research-requests'], 'isPartOf': 'NJR'}",ba0bf718-05ab-4a6c-9419-1d04991d9ee9,https://web.www.healthdatagateway.org/dataset/ba0bf718-05ab-4a6c-9419-1d04991d9ee9,"{'access': {'dataProcessor': 'NEC Software Solutions', 'deliveryLeadTime': 'VARIABLE', 'accessRights': ['http://www.njrcentre.org.uk/njrcentre/Research/Research-requests', 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'accessRequestCost': ['http://www.njrcentre.org.uk/njrcentre/Portals/0/NJR%20cost%20recovery%20policy%20April%202019%20v1.0.pdf?ver=2019-04-04-105011-240'], 'jurisdiction': ['GB-EAW'], 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England'}, 'formatAndStandards': {'format': ['Tab delimited file made available via NJR Data Access Portal'], 'language': ['en'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL']}, 'usage': {'dataUseLimitation': ['NO RESTRICTION'], 'resourceCreator': [""the study title should be followed by the suffix: ‘An analysis from the National Joint Registry'. ""], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'investigations': ['https://www.njrcentre.org.uk/njrcentre/Research/Research-Portfolio']}}","{'temporal': {'accrualPeriodicity': 'CONTINUOUS', 'timeLag': 'VARIABLE', 'startDate': '2012-04-01'}, 'origin': {'purpose': ['AUDIT', 'DISEASE REGISTRY', 'OTHER'], 'source': ['EPR', 'ELECTRONIC SURVEY', 'PAPER BASED'], 'collectionSituation': ['IN-PATIENTS', 'PRIVATE']}}",2020-01-13T14:55:22Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '4373', 'disambiguatingDescription': 'number of primary elbow  replacements during 2019 in the dataset\n', 'observationDate': '01/09/2020', 'measuredProperty': 'Count'}]",4.0.0,"{'qualifiedRelation': [' HES - available subject to additional permissions', 'National PROMS - available subject to additional permissions', 'Civil Registration Data - available subject to additional permissions'], 'derivation': ['Not available']}",2022-01-07T11:19:57Z,"{'structuralMetadataCount': 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"{'title': 'COVID-19 Symptom Tracker Dataset (CVST)', 'keywords': ['COVID-19', 'TRACKER', 'SAIL', 'COVID', 'MOBILE APP', 'CORONAVIRUS', 'SYMPTOM', 'NCS', 'National Core Study', 'core', 'CVST'], 'publisher': {'memberOf': 'ALLIANCE', 'name': 'SAIL', 'identifier': '5f3f98068af2ef61552e1d75'}, 'contactPoint': 'saildatabank@swansea.ac.uk', 'abstract': ""The COVID Symptom Tracker was designed by doctors and scientists at King's College London (KCL), Guys and St Thomas’ Hospital working in partnership with ZOE Global. 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Please make enquiries using the link at the bottom of the page which will go the SAIL Databank team, or to Chris Orton at c.orton@swansea.ac.uk\n\nSAIL is welcoming requests from other organisations and for longer-term academic study on the dataset, but please note if this is not directly relevant to the emergency research being carried out which directly interfaces with national responding agencies, there may be an access delay whilst priority use cases are serviced."", 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://covid.joinzoe.com/data'], 'isPartOf': 'NOT APPLICABLE'}",bb04212f-0626-4cbe-8863-a2cc1df40683,https://web.www.healthdatagateway.org/dataset/bb04212f-0626-4cbe-8863-a2cc1df40683,"{'access': {'jurisdiction': ['GB-GBN'], 'dataController': 'Zoe Global Ltd (https://joinzoe.com/)', 'accessRights': ['https://saildatabank.com/application-process/two-stage-process/'], 'deliveryLeadTime': '2-6 MONTHS', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). 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Data are linked via Lower Super Output Area (LSOA), Super Output Area (SOA) in Northern Ireland and datazone (DZ) in Scotland. The latest available patient postcode of residence is mapped to an LSOA boundary. The LSOA of residence then allows linkage to the following LSOA-level deprivation measures:\n2004 English Index of Multiple Deprivation; 2007 English Index of Multiple Deprivation; 2010 English Index of Multiple Deprivation; 2015 English Index of Multiple Deprivation (composite and individual domains); Townsend Deprivation Index: calculated using unadjusted 2001 census data; Carstairs Index using 2011 census data.\n\nData are provided as quintiles, deciles or twentiles of the deprivation score to prevent disclosure of patient location. In order to prevent the possibility of deductive disclosure of a patients’ area of residence, researchers will only be provided with one of the above linked datasets for any one study.', 'isPartOf': 'CPRD Aurum', 'associatedMedia': ['https://www.cprd.com/linked-data']}",bb3152a1-aaef-4c0e-b0da-0fa94503b9da,https://web.www.healthdatagateway.org/dataset/bb3152a1-aaef-4c0e-b0da-0fa94503b9da,"{'usage': {'investigations': ['https://www.cprd.com/protocol-list'], 'dataUseRequirements': ['GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'isReferencedBy': ['[]'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'NO LINKAGE', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['OTHER'], 'conformsTo': ['OTHER'], 'language': ['en'], 'format': ['Tab delimited text']}, 'access': {'dataController': 'Clinical Practice Research Datalink (CPRD)', 'deliveryLeadTime': 'VARIABLE', 'jurisdiction': ['GB-ENG'], 'dataProcessor': 'CPRD', 'accessService': 'Access to CPRD data, including UK Primary Care Data, and linked data such as Hospital Episode Statistics, is subject to protocol approval via CPRD’s Research Data Governance (RDG) Process. 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"{'title': 'IBD NIHR BioResource: Case report form', 'keywords': ['IBD', ""Crohn's"", 'colitis', 'recall', 'clinical', 'CRF', 'feasibility', 'cohort discovery'], 'publisher': {'name': 'GUT REACTION', 'memberOf': 'HUB', 'identifier': '607db9c3e1f9d3704d570d0a'}, 'contactPoint': 'nbr@bioresource.nihr.ac.uk', 'abstract': 'Each participant recruited has an IBD-specific CRF completed by their clinical care team. These are non-exhaustive - we have the chance to ask for more information - but form the basis of analysis and recall.'}",877a7275-b99d-4ed4-9691-de577e0ab49e,"{'followup': '1 - 10 YEARS', 'spatial': 'https://www.geonames.org/2635167/united-kingdom.html', 'typicalAgeRange': '18-85', 'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'3.0.0': 'f88440b9-53fc-49df-82dd-9cdd3309bd36', '5.0.0': 'bb61567b-431f-4e30-b906-654490ea14c7', '2.0.0': '81bdcb7c-305f-46bf-8d9f-fe0813913d29', '4.0.0': '0f05db93-e9a8-4203-a2d7-6395d7cc4e49', '1.0.0': 'f1d3b068-7dd0-4a28-bd64-3519dd104eb6', '0.0.1': 'e6f2db43-ee6e-4a63-9fd3-e861858fb960', 'latest': 'bb61567b-431f-4e30-b906-654490ea14c7'}","{'description': 'The NIHR IBD Bioresource comprises ~30k participants with Inflammatory Bowel Disease (IBD), which include the members of the HDR UK IBD Hub. The NIHR BioResource acquires a case report form at recruitment for each participant recruited on the basis of their disease. Typically variables include questions that may be used to partition or group patients by their disease course and severity, and include disease history and medication use. This is used to pre-screen or match participants when inviting them to take part in experimental medicine studies. De-identified versions of this data are available to researchers investigating the feasibility of future studies.', 'associatedMedia': [''], 'isPartOf': 'Not Applicable'}",bb61567b-431f-4e30-b906-654490ea14c7,https://web.www.healthdatagateway.org/dataset/bb61567b-431f-4e30-b906-654490ea14c7,"{'access': {'jurisdiction': ['GB-GBN'], 'deliveryLeadTime': '2-6 MONTHS', 'accessService': 'Some de-identified data may be released to researchers in a platform-independent filetype (e.g. CSV). However, access to any data acquired via NHS Digital is subject to strict restrictions governing where data may be accessed and from which locale - access is currently via an experimental safe haven built in Microsoft Azure.', 'accessRequestCost': ['https://bioresource.nihr.ac.uk/using-our-bioresource/industry-researchers/industry-bioresource-usage-costs/'], 'accessRights': ['https://bioresource.nihr.ac.uk/using-our-bioresource'], 'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)', 'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)'}, 'usage': {'isReferencedBy': ['Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': ['RESEARCH USE ONLY'], 'resourceCreator': ['NIHR BioResource. Acknowledgement text: ""We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.""'], 'investigations': ['https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction-data-sources', 'https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction/']}, 'formatAndStandards': {'format': ['text', 'csv'], 'vocabularyEncodingScheme': ['SNOMED CT', 'HPO'], 'conformsTo': ['I2B2'], 'language': ['en']}}","{'temporal': {'distributionReleaseDate': '2021-03-31', 'accrualPeriodicity': 'QUARTERLY', 'timeLag': '1-2 MONTHS', 'startDate': '2016-01-13'}, 'origin': {'collectionSituation': ['CLINIC'], 'source': ['PAPER BASED'], 'purpose': ['STUDY']}}",2020-01-13T15:06:24Z,"[{'observedNode': 'PERSONS', 'measuredValue': '33632', 'disambiguatingDescription': 'Participants who have clinical data (disease and/or medication data collected at recruitment by a healthcare professional)', 'observationDate': '26/11/2020', 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"{'title': '1958 National Child Development Study (NCDS)', 'abstract': 'The 1958 National Child Development Study (NCDS) follows the lives of 17,415 people born in England, Scotland and Wales in a single week of 1958. NCDS started in 1958 as the Perinatal Mortality Survey.', 'keywords': ['NCDS', 'Mental Health', 'Physical Measures', 'Cognitive', 'Education', 'Longitudinal', 'COVID-19', 'DATAMIND'], 'publisher': {'memberOf': 'HUBS', 'name': 'DATAMIND', 'identifier': '61800787f4dde0c2a01e1ea2'}}",0ceaaedc-4904-4820-8b74-d6a8e679fb11,"{'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2638360/scotland.html', 'https://www.geonames.org/2634895/wales.html'], 'typicalAgeRange': '0-62', 'followup': '> 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'bbed7a4e-0c38-48b8-b4f8-b617ec307f59'},"{'description': 'NCDS started in 1958 as the Perinatal Mortality Survey.\n\nThe initial birth survey captured information on 17,415 babies born in a single week – or 98 per cent of total births across England, Scotland and Wales. Since then, the cohort has been followed up ten times at ages 7, 11, 16, 23, 33, 42, 44, 46, 50, and most recently at age 55, when 9,137 cohort members took part. At 7, 11 and 16, the sample was augmented with those who had been born overseas in the relevant week and subsequently moved to Great Britain. This resulted in a total sample of 18,558 cohort members, who have been followed ever since. The tenth sweep of the NCDS originally behan in January 2020, when the cohort members were age 62, with data becoming available for researchers to use from early 2024. \n\nOver the course of cohort members’ lives, information has been collected on their physical and educational development, economic circumstances, employment, family life, health behaviour, wellbeing, social participation and attitudes. The main data collection methods used during the study have included questionnaires, cognitive assessments, clinical assessments and nurse measurements. Questionnaires have been used to gather a variety of information about study members, including social and family background, mental health and wellbeing, income and housing, and marriage and employment status. Cognitive assessments have measured verbal and language ability in childhood, as well as literacy and numeracy from adolescence into later life. Medical examinations and nurse measurements have provided information about bone development in the early years to heart problems in middle age. The study has also collected blood samples to see how people’s health is linked to their genes.'}",bbed7a4e-0c38-48b8-b4f8-b617ec307f59,https://web.www.healthdatagateway.org/dataset/bbed7a4e-0c38-48b8-b4f8-b617ec307f59,"{'access': {'accessRights': ['https://cls.ucl.ac.uk/data-access-training/data-access/'], 'jurisdiction': ['GB'], 'dataProcessor': 'Centre for Longitudinal Studies (CLS)', 'dataController': 'Centre for Longitudinal Studies (CLS)'}}","{'temporal': {'startDate': '1958-01-01', 'timeLag': 'VARIABLE', 'accrualPeriodicity': 'OTHER'}}",2021-11-22T12:31:39Z,"[{'observedNode': 'PERSONS', 'measuredValue': 9137, 'observationDate': '01/03/2014', 'measuredProperty': 'Count'}]",1.0.0,,2021-11-22T12:31:39Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Cardiac Audit Programme - National Audit of Percutaneous Coronary Interventions (PCI)', 'contactPoint': 'DataSharing@hqip.org.uk', 'publisher': {'name': 'HQIP', 'memberOf': 'ALLIANCE', 'contactPoint': 'DataSharing@hqip.org.uk'}, 'keywords': ['Percutaneous', 'Cardiac', 'PCI', 'Interventions', 'NCAP', 'Audit', 'Coronary'], 'abstract': 'The dataset information on the types, timing, processes and outcomes of care provided to patients undergoing percutaneous coronary intervention procedures (including stents and angioplasties).'}",ac7016ce-f7a9-4c71-bebb-6af6efa27844,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '653feb65-b97e-4e84-9962-e0ae8b785ab6', '4.0.0': 'bc236fba-2935-4406-aaa9-0006cbbf693d', '3.0.0': '1da704e3-f5ee-4614-8880-10541637a0b7', '1.0.0': '4cfcd650-bd9b-4484-bed5-b3a997832b22', '0.0.1': '76f21f87-e75d-45b3-b61a-6eb802d05ed8', 'latest': 'bc236fba-2935-4406-aaa9-0006cbbf693d'}","{'description': 'The dataset contains continuously ascertained record-level information on the types, timing, processes and outcomes of care provided to patients undergoing percutaneous coronary intervention procedures (including stents and angioplasties) performed all NHS hospitals and the majority of private hospitals in the UK.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",bc236fba-2935-4406-aaa9-0006cbbf693d,https://web.www.healthdatagateway.org/dataset/bc236fba-2935-4406-aaa9-0006cbbf693d,"{'access': {'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data\nhttps://www.nicor.org.uk/for-researchers/data-sharing-application-process/', 'jurisdiction': 'GB-GBN', 'deliveryLeadTime': 'OTHER'}, 'formatAndStandards': {'language': ['en']}}",,2020-01-13T14:54:29Z,,4.0.0,,2021-04-14T08:17:16Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Urinary tract infections acute presentations: microbiology, treatment, outcome', 'contactPoint': 'PIONEER@UHB.NHS.UK', 'keywords': ['Urinary Tract Infection', 'Infection', 'UTI', 'Antibiotics', 'urine', 'dipstick', 'cystitis', 'pyelonephritis', 'uropathogens', 'acute urethral syndrome', 'dehydrated', 'urine culture', 'bacteriuria', 'sensitivities', 'resistance', 'cultures', 'administration', 'intravenous', 'oral', 'Outcomes', 'Admissions', 'Demography', 'acuity', 'Sepsis', 'NEWS2', 'Mortality', 'length of stay'], 'publisher': {'name': 'PIONEER', 'identifier': '607db9c5e1f9d3704d570d5f', 'memberOf': 'HUB'}, 'abstract': 'Acute presentations of UTIs (2000 to date). Deeply phenotyped, longitudinal granular data. Serial acuity, physiology, microbiology cultures, blood parameters, treatments, interventions, outcomes. Presenting complaints. Catheterisation status.'}",ae2192ce-7d75-4cec-8ebd-e07c2eacb7c3,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Data is representative of the multi-ethnicity population within the West Midlands (42% non white). Data includes all patients admitted during this timeframe, with National data Opt Outs applied, and therefore is representative of admissions to secondary care. Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.', 'spatial': ['https://www.geonames.org/2634343/west-midlands.html'], 'followup': 'OTHER', 'typicalAgeRange': '0-112'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '434b2ec5-e5f2-4f06-9839-7b77f4935f4f', '2.0.0': 'bd18eb49-9789-4ed3-a6c1-7b4f851ec2e7', 'latest': 'bd18eb49-9789-4ed3-a6c1-7b4f851ec2e7'}","{'description': 'Background: A urinary tract infection (UTI) is a common infection that affects the bladder (cystitis), urethra (urethritis) or kidneys (pyelonephritis). They are more prevalent in women, and the incidence in women over 65 years old is double the rate compared with the overall female population. Catheterisation is known to affect the likelihood of infection. The National Institute for Clinical Excellence suggests that UTIs in the elderly are often over-diagnosed and over-treated. This has led to NHS England requiring a reduction in the number of Trimethoprim prescriptions prescribed to patients over 70 years old. \n\nPIONEER geography: The West Midlands (WM) has a population of 5.9 million and includes a diverse ethnic and socio-economic mix.  \n\nEHR: UHB is one of the largest NHS Trusts in England, providing direct acute services and specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds and an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary and secondary care record (Your Care Connected) and a patient portal “My Health”. \n\nScope: All hospitalised patients from 2000 onwards, curated to focus on Urinary tract infection. Longitudinal and individually linked, so that the preceding and subsequent health journey can be mapped and healthcare utilisation prior to and after admission understood. The dataset includes highly granular patient demographics and co-morbidities taken from ICD-10 and SNOMED-CT codes. Serial, structured data pertaining to acute care process (timings, staff grades, specialty review, wards and triage). Along with presenting complaints, outpatients admissions, microbiology results, referrals, procedures, therapies, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations and others), all blood results (urea, albumin, platelets, white blood cells and others). This dataset includes all prescribed and administered treatments including antibiotics, bacterial resistance patterns from microbiology assessments and outcomes. Linked images are also available (radiographs, CT scans, MRI). \n\nAvailable supplementary data: Matched controls; ambulance, OMOP data, synthetic data. \n\nAvailable supplementary support: Analytics, Model build, validation and refinement; A.I.; Data partner support for ETL (extract, transform and load) process, Clinical expertise, Patient and end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.'}",bd18eb49-9789-4ed3-a6c1-7b4f851ec2e7,https://web.www.healthdatagateway.org/dataset/bd18eb49-9789-4ed3-a6c1-7b4f851ec2e7,"{'access': {'deliveryLeadTime': '1-2 MONTHS', 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/'], 'jurisdiction': ['GB-ENG'], 'dataProcessor': 'NOT APPLICABLE', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.'}, 'usage': {'resourceCreator': ['This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['RESEARCH USE ONLY']}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'vocabularyEncodingScheme': ['SNOMED CT', 'OPCS4', 'ICD10'], 'format': ['SQL']}}","{'temporal': {'distributionReleaseDate': '2022-01-20', 'endDate': '2022-01-01', 'accrualPeriodicity': 'QUARTERLY', 'startDate': '2000-01-12', 'timeLag': 'OTHER'}, 'origin': {'collectionSituation': ['ACCIDENT AND EMERGENCY', 'OUTPATIENTS', 'IN-PATIENTS'], 'purpose': ['CARE'], 'source': ['EPR']}}",2022-03-15T10:21:34Z,"[{'measuredProperty': 'Count', 'observedNode': 'EVENTS', 'measuredValue': '91568', 'disambiguatingDescription': '91,568 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"{'title': 'Education Daily Attendance Dataset', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'SAIL', 'contactPoint': 'SAILDatabank@swansea.ac.uk'}, 'doiName': 'In Progress', 'abstract': 'This dataset provides information about educational activity within Wales.', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'keywords': ['Education', ' SAIL']}",17056e83-ee5a-4fe7-86e1-f09563256be1,"{'followup': '0 - 6 MONTHS', 'pathway': 'Education', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'Wales', 'typicalAgeRange': '0-20'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '8f59a293-6b78-43a0-92e1-05211e1be17e', '2.0.0': 'bd87cdf4-ec39-41f6-bb07-c19f10372840', '0.0.1': 'ceb11ed4-c777-4058-b7fd-fa713619af7f', 'latest': 'bd87cdf4-ec39-41f6-bb07-c19f10372840'}","{'description': 'This dataset provides information about educational activity within Wales.', 'isPartOf': 'Not Applicable', 'associatedMedia': ['https://saildatabank.com/about-us/overview/']}",bd87cdf4-ec39-41f6-bb07-c19f10372840,https://web.www.healthdatagateway.org/dataset/bd87cdf4-ec39-41f6-bb07-c19f10372840,"{'access': {'accessRights': ['https://saildatabank.com/application-process/'], 'dataController': 'Welsh Government', 'deliveryLeadTime': '2-6 MONTHS', 'accessRequestCost': 'Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.', 'dataProcessor': 'SAIL Databank', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'jurisdiction': 'GB'}, 'formatAndStandards': {'conformsTo': 'LOCAL', 'vocabularyEncodingScheme': 'LOCAL', 'format': ['SQL database table'], 'language': 'en'}, 'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'USER SPECIFIC RESTRICTION'], 'isReferencedBy': ['Littlecott HJ, Moore GF, Moore L, Lyons RA, Murphy S. Association between breakfast consumption and educational outcomes in 9-11-year-old children. Public Health Nutr. 2016 Jun;19(9):1575-82. doi: 10.1017/S1368980015002669. Epub 2015 Sep 28. Erratum in: Public Health Nutr. 2016 Jun;19(9):1583. PMID: 26411331; PMCID: PMC4873891. '], 'dataUseLimitation': 'GENERAL RESEARCH USE', 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'resourceCreator': 'Welsh Government'}}","{'origin': {'collectionSituation': 'OTHER', 'source': 'OTHER', 'purpose': 'ADMINISTRATIVE'}, 'temporal': {'distributionReleaseDate': '2021-02-23', 'accrualPeriodicity': 'ANNUAL', 'endDate': '2020-12-18', 'timeLag': '2-6 MONTHS', 'startDate': '2020-09-01'}}",2021-03-16T13:48:47Z,,2.0.0,"{'qualifiedRelation': ['Yes. To any SAIL dataset & reference data.'], 'derivation': ['Not Available'], 'tools': ['https://conceptlibrary.saildatabank.com/']}",2021-03-18T15:30:00Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 11, 'structuralMetadata.columnName': 11, 'structuralMetadata.columnDescription': 11, 'structuralMetadata.dataType': 11, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '040476c7-4755-47ad-a38f-89227c8c91f6', 'description': 'Education Daily Activity Dataset table', 'name': 'EDAD', 'dataElementsCount': 11, 'dataElements': '67990cbc-cf7e-4409-ac27-1dc63a745348, eb44c98f-cda6-43ad-b2f8-e617e7378bbd, c397392f-c801-463b-ad60-acd7bcbcd8a8, 95a5a150-1ff6-48ea-91a8-a3d54a4d7fc7, c867512e-d687-4997-95ec-8d4f36de78b2, 374c2020-f810-44f0-ba51-6faad9c30a57, 22fa1426-74d1-4110-93d7-f05ea91f9d73, f2a66c62-410f-4527-bec7-dadeecda7950, 067f332b-73d8-4b4a-850c-fad0a607f3ef, 57f7d508-ca43-4cbc-89e5-dfb5f9ab53fa, c41371b2-a8f7-48cf-8abd-26133cf1a0c7'}]}"
"{'title': 'Referral to Treatment Times (RTTD)', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'SAIL', 'identifier': '5f3f98068af2ef61552e1d75'}, 'keywords': ['Referral to treatment', 'SAIL', 'core', 'RTTD'], 'abstract': 'Information on the total time waited from referral by a GP or other medical practitioner to hospital treatment in the NHS.'}",0bf54842-c1db-4bdb-9f55-c5be490bf758,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Treatment / diagnostic intervention referral pathway including welsh residents treated (or waiting for treatment) in England', 'typicalAgeRange': '0-150', 'followup': 'OTHER', 'spatial': ['https://www.geonames.org/2634895/wales.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'5.0.0': '13f04a95-68b9-47f0-b3de-2c6ce61ffcb5', '7.0.0': 'bdc4999c-71f6-4e94-aabc-e232ff423f10', '6.0.0': '140ce7b6-8a58-4d0f-a24b-81b0f4289a68', 'latest': 'bdc4999c-71f6-4e94-aabc-e232ff423f10'}","{'description': 'Monitoring the 26 week Referral to Treatment Time target.\n\nMonthly return submitted by Local Health Boards.\n\nTreatment/diagnostic intervention referral pathway, including welsh residents treated (or waiting for treatment) in England.\n\nhttps://data.gov.uk/dataset/169ea19a-21e0-472a-8245-ec2d60c219f9/referral-to-treatment-times-for-wales', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/']}",bdc4999c-71f6-4e94-aabc-e232ff423f10,https://web.www.healthdatagateway.org/dataset/bdc4999c-71f6-4e94-aabc-e232ff423f10,"{'formatAndStandards': {'conformsTo': ['LOCAL'], 'format': ['SQL database table'], 'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en']}, 'access': {'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'dataProcessor': 'SAIL Databank', 'dataController': 'SAIL Databank', 'deliveryLeadTime': '2-6 MONTHS', 'jurisdiction': ['GB-WLS'], 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'accessRights': ['https://saildatabank.com/application-process/']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'resourceCreator': ['Digital Health and Care Wales (DHCW)']}}","{'origin': {'collectionSituation': ['OUTPATIENTS', 'IN-PATIENTS'], 'source': ['OTHER'], 'purpose': ['ADMINISTRATIVE']}, 'temporal': {'endDate': '2022-03-01', 'distributionReleaseDate': '2019-09-12', 'startDate': '2001-12-20', 'accrualPeriodicity': 'MONTHLY', 'timeLag': '2-4 WEEKS'}}",2021-09-13T15:21:44Z,"[{'observedNode': 'EVENTS', 'measuredValue': '3000000', 'observationDate': '01/09/2021', 'measuredProperty': 'Count', 'disambiguatingDescription': 'Approx 70-80% coverage of Welsh population through GP registrations.'}]",7.0.0,"{'tools': ['https://conceptlibrary.saildatabank.com/'], 'qualifiedRelation': ['Yes. 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"{'title': 'Oxford Healthcare Workers', 'publisher': {'name': 'OXFORD UNIVERSITY HOSPITALS', 'contactPoint': 'OxfordCO-CONNECT@ouh.nhs.uk', 'memberOf': 'ALLIANCE'}, 'abstract': 'Oxford University Hospitals NHS Foundation Trust (OUH) offers both symptomatic and asymptomatic SARS-CoV-2 testing programmes to staff at its four teaching hospitals in Oxfordshire, UK.', 'contactPoint': 'OxfordCO-CONNECT@ouh.nhs.uk', 'keywords': ['COVID', 'COVID-19', 'Coronovirus', 'Serology', 'CO-CONNECT', 'Oxford Healthcare Workers', 'Healthcare Workers', 'Health Care Workers', 'HCW']}",9de2f365-4c5d-4252-acee-6270b113aa93,"{'spatial': 'Oxfordshire', 'physicalSampleAvailability': ['AVAILABILITY TO BE CONFIRMED'], 'followup': 'UNKNOWN', 'typicalAgeRange': '18-65'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'be1368c6-c97f-4ce0-8322-f97ccb28b9c3'},"{'description': 'OUH offers both symptomatic and asymptomatic SARS-CoV-2 staff testing programs, defining a Health Care Worker (HCW) as anyone working at its four teaching hospital sites in Oxfordshire, UK. 12,411 healthcare workers (HCWs) have undergone serological testing to date; this analysis includes all 3217 HCWs who attended more than once for antibody testing. SARS-CoV-2 PCR testing of nasal and oropharyngeal swabs for all symptomatic (new persistent cough, fever ?37.8°C, anosmia/ageusia) staff was offered from 27-March-2020 onwards. PCR-positive results from community-based symptomatic testing of OUH HCWs forwarded by public health agencies were also included.', 'associatedMedia': ['https://elifesciences.org/articles/60675'], 'isPartOf': 'NOT APPLICABLE'}",be1368c6-c97f-4ce0-8322-f97ccb28b9c3,https://web.www.healthdatagateway.org/dataset/be1368c6-c97f-4ce0-8322-f97ccb28b9c3,"{'access': {'jurisdiction': 'GB-ENG', 'accessRights': ['IN PROGRESS'], 'dataController': 'OxfordCO-CONNECT@ouh.nhs.uk'}, 'formatAndStandards': {'conformsTo': 'OMOP', 'vocabularyEncodingScheme': 'LOCAL', 'format': ['other/xlsx'], 'language': 'en'}}","{'origin': {'purpose': 'STUDY', 'source': 'LIMS', 'collectionSituation': 'CLINIC'}, 'temporal': {'startDate': '2020-03-27', 'timeLag': 'VARIABLE', 'accrualPeriodicity': 'OTHER'}}",2021-03-09T17:16:29Z,,0.0.1,,2021-03-09T17:13:43Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 8, 'structuralMetadata.tableName': 8, 'structuralMetadata.tableDescription': 8, 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"{'title': 'Barts CTU', 'publisher': {'name': 'TISSUE DIRECTORY', 'contactPoint': 'd.j.collier@qmul.ac.uk', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'd.j.collier@qmul.ac.uk', 'keywords': ['Benign', 'Neoplasm', 'UKCRC Tissue Directory', 'Prostate', 'Barts', 'CTU', 'Carcinoma', 'Breast'], 'doiName': 'Not Available', 'abstract': 'Collection of samples and data across the following diseases: Benign neoplasm of prostate, Carcinoma in situ of breast'}",22aa219f-f3c8-4a25-822e-aa2504f6f29a,"{'typicalAgeRange': '40-150', 'physicalSampleAvailability': ['DNA', 'SERUM', 'TISSUE', 'URINE', 'WHOLE BLOOD'], 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '6a4f8474-f71a-4991-a174-06ccd0c2103e', '3.0.0': 'be77a483-2eff-4c05-8091-035fe79b3c8a', '1.0.0': 'f407b6bf-af52-403f-9cfa-98cedc6db89b', '2.0.0': 'c6d6bbd3-74ed-46af-841d-ac5e05f4da41', 'latest': 'be77a483-2eff-4c05-8091-035fe79b3c8a'}","{'description': 'We conduct research into the prevention of cancer with particular focus on preventive therapy and screening. We are involved in clinical trials and epidemiology.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",be77a483-2eff-4c05-8091-035fe79b3c8a,https://web.www.healthdatagateway.org/dataset/be77a483-2eff-4c05-8091-035fe79b3c8a,"{'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}, 'access': {'accessRights': 'Please contact the publisher using Contact Point details provided', 'jurisdiction': 'GB-ENG', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'accessRequestCost': 'Not specified', 'dataProcessor': 'Not Applicable', 'dataController': 'QMUL'}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '1992-01-01'}}",2020-01-13T17:04:30Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T15:55:43Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': '2011 Census - COVID19 Research Database Subset', 'contactPoint': 'phs.edris@phs.scot', 'publisher': {'identifier': '5f8992a97150a1b050be0712', 'memberOf': 'ALLIANCE', 'name': 'PUBLIC HEALTH SCOTLAND'}, 'keywords': ['NCS', 'Census', 'Scotland', 'National Core Study', 'COVID-19'], 'abstract': 'A subset of 2011 Census variables (and variable breakdowns) in the COVID-19 Research Database'}",a05aef07-c3fa-4331-905a-6b6f58eac3d5,"{'spatial': ['https://www.geonames.org/2638360/scotland.html'], 'followup': 'OTHER', 'typicalAgeRange': '0-150', 'pathway': 'Not applicable', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'be8ec01c-20ea-4863-ba7c-6d103df85a42'},"{'description': 'The 2011 Census extract for COVID-19 research does not  include wholly imputed persons, late returns, duplicate persons, and termind=2 observations. Termind=2 observations are those students who have an alternative term-time address. This process avoids double counting students, keeping only the records associated with their primary term-time address.\n\nSTATS PBPP approval is required as well as health and social-care PBPP. Application form available from statistics.enquiries@gov.scot or your eDRIS research co-ordinator.', 'associatedMedia': ['https://blogs.gov.scot/statistics/wp-content/uploads/sites/24/2020/05/Covid-19-Scottish-Government-Bespoke-data-access-request-statement-Covid-requests.pdf', 'https://www.scotlandscensus.gov.uk/census-methodology'], 'isPartOf': 'Census'}",be8ec01c-20ea-4863-ba7c-6d103df85a42,https://web.www.healthdatagateway.org/dataset/be8ec01c-20ea-4863-ba7c-6d103df85a42,"{'access': {'deliveryLeadTime': 'VARIABLE', 'accessService': 'Scottish National Data Safe Haven - https://www.isdscotland.org/Products-and-Services/eDRIS/', 'accessRights': ['https://www.informationgovernance.scot.nhs.uk/pbpphsc/', 'https://www.gov.scot/publications/scottish-government-statistics-request-our-data/', 'https://www.isdscotland.org/Products-and-Services/eDRIS/'], 'dataProcessor': 'Public Health Scotland', 'dataController': 'National Records Scotland', 'jurisdiction': ['GB-GBN'], 'accessRequestCost': ['Research Projects - https://www.isdscotland.org/Products-and-Services/eDRIS/']}, 'formatAndStandards': {'language': ['en'], 'format': ['text/csv'], 'conformsTo': ['OTHER'], 'vocabularyEncodingScheme': ['OTHER']}, 'usage': {'dataUseLimitation': ['RESEARCH USE ONLY'], 'dataUseRequirements': ['NOT FOR PROFIT USE', 'PROJECT SPECIFIC RESTRICTIONS', 'PUBLICATION REQUIRED'], 'isReferencedBy': ['https://doi.org/10.1093/ije/dyq118', 'https://doi.org/10.1080/13557858.2013.814764', 'https://doi.org/10.1093/ije/dyt237', 'http://dx.doi.org/10.1136/bmjopen-2012-001957', 'https://doi.org/10.1093/eurpub/cku059', 'https://doi.org/10.1093/alcalc/agw018', 'https://doi.org/10.1177/1741826711423217', 'http://dx.doi.org/10.1136/heartjnl-2011-301191', 'http://dx.doi.org/10.1136/bmjopen-2014-006120', 'http://dx.doi.org/10.1136/bmjopen-2013-003415'], 'resourceCreator': ['National Records Scotland - Census Branch'], 'investigations': ['https://www.ed.ac.uk/usher/scottish-health-ethnicity-linkage', 'https://sls.lscs.ac.uk/']}}","{'origin': {'purpose': ['ADMINISTRATIVE'], 'collectionSituation': ['HOME'], 'source': ['ELECTRONIC SURVEY', 'PAPER BASED']}, 'temporal': {'accrualPeriodicity': 'OTHER', 'timeLag': 'OTHER', 'endDate': '2011-03-27', 'startDate': '2011-03-27', 'distributionReleaseDate': '2011-03-27'}}",2021-10-28T14:44:33Z,"[{'observedNode': 'PERSONS', 'measuredValue': '3397207', 'disambiguatingDescription': 'All people aged 4 and over who are studying, or aged 16 to 74 in employment the week before the census', 'observationDate': '27/03/2011', 'measuredProperty': 'Count'}]",3.0.0,{'qualifiedRelation': ['Linked as part of the Scottish health & ethnicity study & as part of the Scottish Longitudinal Survey.']},2021-10-28T14:44:33Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 43, 'structuralMetadata.columnName': 43, 'structuralMetadata.columnDescription': 43, 'structuralMetadata.dataType': 43, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '4d75d801-f539-41db-b692-40618ffb7ba4', 'name': 'census_2011', 'dataElementsCount': 43, 'dataElements': '4392927c-32bb-4d12-8e52-01311b960955, 9098c4cd-0e21-4ac7-b873-5f094d62eb96, d3f09d58-d17f-45fb-9b5f-caaaf7b9c13e, 0fe39ea0-393b-4b4e-806e-32ab67ad8034, cab6fb33-cdfb-4ec8-84eb-22fa0948cafb, a221f882-7dd3-4df4-a240-f77699142481, 9956e8f5-a344-497e-b4c0-79f0e40b1b57, 6ba02e64-3a3b-407a-ba23-364e1c33f9a1, b180ba53-4cf9-48dc-9025-48b81c2ed532, f6ce4af8-ec0d-4084-a305-762f622f228b, 14bc0c8f-3c83-498f-aa81-ea71b0d40dc8, 8b0df547-ae0f-4caa-ab59-a743dbffa872, 1cc6fc2f-7bd4-4f0e-8ebd-4e8a92a3989c, 3bf1897b-3204-4a29-ba2f-7bccb200f366, f23c44c9-b80c-4b9e-af8f-664fc4db334b, 9f2dbed1-28ad-4133-8e6e-f70ee51b0190, 0f88b495-e5be-4fa2-97e2-ce0fb3393e6f, 5683e9ee-25f1-419b-9070-0383bc04850e, 1c82fd21-5f32-4f80-bc83-226464c2577d, ca5b4f8b-6308-4dde-9f4c-f81b2d2dde91, 0c1da06e-15dc-4dd7-a32a-7cb117f3c140, a379679c-92ba-4097-b0ec-774c7f6dcc00, 7dc851c8-4a55-4358-ab4d-330f826842da, 2ed000e1-32e4-4ca5-8365-57ed50563437, af66f183-28d4-46e9-b9b1-f6d0bda3649a, dd2ba35b-7522-40de-bd00-7955d5c12b6b, 66d70f7d-a281-45b8-9cbe-6192e535ee27, b51d9553-0d65-4238-8d25-b4cd0e750fa9, 4cab96a1-cfa7-4d80-935a-76a0f13ad90a, aa005873-804d-4bb1-8e8b-dc1f943c2e48, b16da419-f5f0-4e8e-9dd4-31a1d7d5c5ec, 393049d9-566a-4e88-9e18-906277a18597, eaf4829d-70cb-4f25-a9d5-6fb45862a54c, 41224a61-557e-4191-9f03-1314953792da, 63b82d64-8864-46a1-b463-8920ef05a7e5, e49ac5d2-2498-425c-b091-99f668c78892, 8ffd0201-4a44-432c-86a2-7e86f8148997, d9583630-aa90-4f11-8ce7-c5f97c439c04, c07736eb-9fc4-4185-b31c-0963d43c3f1e, d5eac2d3-ff46-4d7d-8df6-4c712532d027, 42db95fb-7396-4762-a81a-f7266295f4ff, 7454871e-8475-447f-9128-9a2e2ba523a9, 3baee521-5ad3-4da2-ab78-3e4ac2ab5a5a'}]}"
"{'title': 'Practice postcode linked deprivation measures for CPRD Aurum', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c2e1f9d3704d570cee', 'name': 'CPRD'}, 'doiName': 'https://doi.org/10.48329/3saw-rz63', 'keywords': ['Area level', 'Deprivation', 'Socioeconomic', 'SES'], 'contactPoint': 'enquiries@cprd.com', 'abstract': 'CPRD Aurum linked small area level socio-demographic and socio-economic data mapped to the postcode of the GP practice, including the Index of Multiple Deprivation and Carstairs Index.'}",9f689ef4-26c6-4f85-80ff-5116974f315a,"{'spatial': ['https://www.geonames.org/2635167/united-kingdom.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'OTHER', 'typicalAgeRange': '0-115'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'3.0.0': '32bff357-1c24-43d5-8741-261f5a764802', '4.0.0': 'bf36d50c-111e-462a-be66-9ef586df1afb', '0.0.1': '77ebae37-daaf-46ed-8ab3-0eff72d26ce3', '2.0.0': 'f3a53f7a-ea93-4b9e-bccd-afe762259044', '1.0.0': '79006c75-255c-4076-a2a0-0a2e838d2537', 'latest': 'bf36d50c-111e-462a-be66-9ef586df1afb'}","{'description': 'General practice postcode linked measures are available for all practices in CPRD Aurum. The general practice postcode is linked via Lower Super Output Area (LSOA), Super Output Area (SOA) in Northern Ireland and datazone (DZ) in Scotland.\nThe general practice postcode linkage includes several well-known area-based measures of deprivation, of which two are available at the LSOA level for linkage to CPRD primary care data through the practice postcode. These measures are: 2015 English Index of Multiple Deprivation (composite and individual domains); 2016 Scottish Index of Multiple Deprivation (composite and individual domains); 2017 Northern Ireland Index of Multiple Deprivation (composite and individual domains); 2014 Welsh Index of Multiple Deprivation (composite and individual domains)\nCarstairs Index: England, Wales and Scotland calculated using 2011 census data.\n\nAs standard, the most recent national Indices of Deprivation are provided for each country. It is important to note that the IMD indices are not comparable between countries in the UK. Older versions of the deprivation scores can be provided on request. The data are updated monthly. Data are provided as quintiles or deciles of the deprivation score to prevent disclosure of patient location. In order to prevent the possibility of deductive disclosure of the location of a practice, researchers will only be provided with one of the above linked datasets for any one study.', 'isPartOf': 'CPRD Aurum', 'associatedMedia': ['https://www.cprd.com/linked-data']}",bf36d50c-111e-462a-be66-9ef586df1afb,https://web.www.healthdatagateway.org/dataset/bf36d50c-111e-462a-be66-9ef586df1afb,"{'usage': {'dataUseRequirements': ['GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'investigations': ['https://www.cprd.com/protocol-list'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'NO LINKAGE', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'isReferencedBy': ['[]']}, 'formatAndStandards': {'format': ['Tab delimited text'], 'conformsTo': ['OTHER'], 'language': ['en'], 'vocabularyEncodingScheme': ['OTHER']}, 'access': {'deliveryLeadTime': 'VARIABLE', 'accessService': 'Access to CPRD data, including UK Primary Care Data, and linked data such as Hospital Episode Statistics, is subject to protocol approval via CPRD’s Research Data Governance (RDG) Process. Independent scientific and patient advice is provided by Expert Review Committees (ERCs) and the Central Advisory Committee (CAC): https://www.cprd.com/research-applications', 'accessRights': ['HTTPS://CPRD.COM/DATA-ACCESS'], 'dataController': 'Clinical Practice Research Datalink (CPRD)', 'jurisdiction': ['GB-GBN'], 'dataProcessor': 'CPRD', 'accessRequestCost': ['https://www.cprd.com/pricing']}}","{'origin': {'purpose': ['OTHER'], 'source': ['OTHER'], 'collectionSituation': ['OTHER']}, 'temporal': {'endDate': '2022-02-07', 'accrualPeriodicity': 'QUARTERLY', 'startDate': '1987-01-01', 'timeLag': 'NOT APPLICABLE', 'distributionReleaseDate': '2022-02-04'}}",2020-01-10T18:12:21Z,"[{'observedNode': 'FINDINGS', 'measuredValue': 1489, 'disambiguatingDescription': 'Total number of practices (current and historic) included in the CPRD Aurum Jan 2022 database', 'observationDate': '04/02/2022', 'measuredProperty': 'Count'}]",4.0.0,"{'derivation': ['N/A'], 'tools': ['[]'], 'qualifiedRelation': ['CPRD Aurum', 'CPRD Aurum SGSS', 'CPRD Aurum CHESS', 'CPRD Aurum ICNARC', 'Death Registration data for CPRD Aurum', 'HES Admitted Patient Care data for CPRD Aurum', 'HES Outpatient data for CPRD Aurum', 'HES Accident and Emergency data for CPRD Aurum', 'HES Diagnostic Imaging Dataset for CPRD Aurum', 'Patient postcode linked deprivation measures for CPRD Aurum', 'Rural-Urban classification for CPRD Aurum', 'Cancer registration data for CPRD Aurum', 'National Radiotherapy Dataset (RTDS) for CPRD Aurum,Systemic Anti-Cancer Treatment (SACT) data for CPRD Aurum', 'Mental Health Dataset (MHDS) for CPRD Aurum']}",2022-02-18T12:01:13Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 3, 'structuralMetadata.tableName': 3, 'structuralMetadata.tableDescription': 3, 'structuralMetadata.dataElementsCount': 92, 'structuralMetadata.columnName': 92, 'structuralMetadata.columnDescription': 92, 'structuralMetadata.dataType': 92, 'structuralMetadata.sensitive': 0}, 'dataClasses': 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"{'title': 'EU Farm Structure Survey Wales (EUFS)', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '5f3f98068af2ef61552e1d75', 'name': 'SAIL'}, 'keywords': ['EUFS', 'EUFSS', 'Farm', 'Farmer', 'core-res'], 'abstract': 'The Farm Structure Survey provides harmonised data on the structure of agricultural holdings in the European Union, in particular on land use, livestock and farm labour force.'}",cc7aa34f-81df-42f8-ad69-80e136c48bf1,"{'followup': 'OTHER', 'spatial': ['https://www.geonames.org/2634895/wales.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150', 'pathway': 'Not Applicable'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '9ed19ebb-5838-43a4-9326-7b0391f3df76', '2.0.0': 'bfbd3c63-8902-4242-97d5-ca935591e8cb', 'latest': 'bfbd3c63-8902-4242-97d5-ca935591e8cb'}","{'description': 'The Farm Structure Survey provides harmonised data on the structure of agricultural holdings in the European Union, in particular on land use, livestock and farm labour force. Every ten years, a survey is carried out as an agricultural census. Two or three surveys are carried out between censuses in the form of a sample survey. The survey data helps to assess the agricultural situation across the EU, to monitor trends in the structure of holdings and to model the impact of external development of external developments of policy proposals.\n\nDefra (Department for Environment, Food and Rural Affairs - UK Government) is responsible for the collation and provision of the anonymised holding level dataset to Eurostat (the statistical office of the European Union). Responsibility for data collection in Wales lies with the Welsh Government. Much of the data is collected through the annual June Agricultural and Horticultural Survey with additional labour detail collected in farm structure survey years and other data through administrative sources.', 'isPartOf': 'No Group', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/']}",bfbd3c63-8902-4242-97d5-ca935591e8cb,https://web.www.healthdatagateway.org/dataset/bfbd3c63-8902-4242-97d5-ca935591e8cb,"{'usage': {'resourceCreator': ['Welsh Goverment'], 'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS'], 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'USER SPECIFIC RESTRICTION', 'TIME LIMIT ON USE']}, 'access': {'dataController': 'SAIL Databank', 'accessRequestCost': ['Data provision is free from SAIL. 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"{'title': 'Ventilatory strategies, medications and outcomes for patients with COVID', 'contactPoint': 'PIONEER@UHB.NHS.UK', 'publisher': {'identifier': '607db9c5e1f9d3704d570d5f', 'name': 'PIONEER', 'memberOf': 'HUB'}, 'keywords': ['NHS', 'Acute', 'Exacerbation', 'COVID', 'pneumonia', 'pneumonitis', 'NEWS2', 'deterioration', 'alert', 'SEWS', 'Oxygen', 'non-invasive ventilation', 'high flow oxygen', 'CPAP', 'airway pressure', 'inspiratory pressure', 'tidal volume', 'patient', 'acute hospitals', 'inpatient', 'ethnicity', 'multi-morbidity', 'blood', 'biomarkers', 'physiology', 'demographics', 'treatments', 'therapies', 'interventions', 'outcomes', 'death', 'longitudinal', 'vital signs', 'dexamethasone', 'antibiotics', 'remdesivir', 'tocilizumab', 'age', 'co-morbidities', 'socio-economic status'], 'abstract': 'Deeply phenotyped data on COVID-19 hospital patients with multi-morbidities requiring/at risk of requiring ventilatory support: This includes investigations, with serial biomarkers, ITU spells, interventions undertaken and outcomes.'}",55a744c4-a2d4-4ea0-b0eb-1af6e1465383,"{'spatial': 'https://www.geonames.org/2634343/west-midlands.html', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'This dataset focuses on those patients who required high dependency and Intensive Care support including ventilatory support for any reason or purpose. It includes all ventilator settings, oxygen support and all organ support treatments.  It includes all medications used across the COVID waves. It assesses infections associated with ITU, all routine and specialist tests, all investigations, treatments and results.  The dataset is ethnically diverse and includes all admitted patients.  It is a secondary care, hospitalised cohort.', 'followup': 'OTHER', 'typicalAgeRange': '20-100'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'ac5aba4a-3e34-4e44-b8e7-1e9410e7ff0c', '2.0.0': 'c01fbdae-33e3-4839-b842-3b61a722a925', 'latest': 'c01fbdae-33e3-4839-b842-3b61a722a925'}","{'description': 'Background: Coronavirus disease 2019 (COVID-19) was identified in January 2020.  Currently, there have been more than 125 million cases, and more than 2.7 million deaths worldwide. Some individuals experience severe manifestations of infection, including viral pneumonitis, adult respiratory distress syndrome (ARDS) and death.  Many patients required ventilatory support including high flow oxygen, continuous positive airway pressure and intubated with or without tracheotomy. There was considerable learning on how to manage COVID-19 during the pandemic and new drugs became available during the different waves. This secondary care COVID dataset contains granular ventilatory, demographic, morbidity, serial acuity, medications and outcome data in COVID-19 across all waves and will be continuously refreshed.\n\nPIONEER geography: The West Midlands (WM) has a population of 5.9 million and includes a diverse ethnic and socio-economic mix. There is a higher than average percentage of minority ethnic groups. WM has a large number of elderly residents but is the youngest population in the UK. Each day, more than 100,000 people are treated in hospital, see their GP or are cared for by the NHS. The West Midlands was one of the hardest hit regions for COVID admissions across all waves.\n\nElectronic Health Records (EHR): University Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services and specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds and 100 ITU beds. ITU capacity increased to 250 beds during the COVID pandemic. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary and secondary care record (Your Care Connected) and a patient portal “My Health”. UHB has cared for more than 10,000 COVID admissions to date.  \n\nScope: All COVID swab confirmed hospitalised patients to UHB from January 2020 to the current date.  The dataset includes highly granular patient demographics and co-morbidities taken from ICD-10 and SNOMED-CT codes.  Serial, structured data pertaining to care process (timings, staff grades, specialty review, wards), severity, ventilatory requirements, acuity, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations), all blood results, microbiology, all prescribed and administered treatments (fluids, antibiotics, inotropes, vasopressors, organ support, dexamethasone, remdesivir, tocilizumab), all outcomes.  \n\nAvailable supplementary data: Ambulance, 111, 999 data, synthetic data.\n\nAvailable supplementary support: Analytics, Model build, validation and refinement; A.I.; Data partner support for ETL (extract, transform and load) process, Clinical expertise, Patient and end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.', 'isPartOf': 'Derived from PIONEER dataset 17: Ventilation'}",c01fbdae-33e3-4839-b842-3b61a722a925,https://web.www.healthdatagateway.org/dataset/c01fbdae-33e3-4839-b842-3b61a722a925,"{'access': {'dataProcessor': 'NOT APPLICABLE', 'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/'], 'deliveryLeadTime': '1-2 MONTHS', 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'jurisdiction': ['GB-GB'], 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'resourceCreator': ['This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['SNOMED CT'], 'format': ['csv'], 'language': ['en'], 'conformsTo': ['LOCAL']}}","{'temporal': {'startDate': '2020-01-01', 'timeLag': 'LESS 1 WEEK', 'distributionReleaseDate': '2021-02-22', 'accrualPeriodicity': 'QUARTERLY'}, 'origin': {'purpose': ['CARE'], 'collectionSituation': ['IN-PATIENTS'], 'source': ['EPR']}}",2021-04-09T12:16:44Z,"[{'observedNode': 'EVENTS', 'observationDate': '22/02/2021', 'measuredProperty': 'Count', 'measuredValue': '2499', 'disambiguatingDescription': '2439 patients across 2499 admissions where the patient was subjected to ventilation.'}]",2.0.0,"{'derivation': ['Not available'], 'qualifiedRelation': ['https://web.www.healthdatagateway.org/dataset/1a66dbc1-4f06-455c-85fc-68b372575cad']}",2021-08-05T15:26:20Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 12, 'structuralMetadata.columnName': 12, 'structuralMetadata.columnDescription': 12, 'structuralMetadata.dataType': 12, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '2ed61b30-090f-4711-a6ca-5694a19a8f23', 'description': 'Demographics and outcomes for ventilated patients, with the COVID drug types administered', 'name': 'DrugIntubationOutcomes', 'dataElementsCount': 12, 'dataElements': 'eaf2552e-a092-498a-a26f-92efca576c94, b520cafb-3b32-4832-858c-82dde84334a7, bbbf74c7-5826-4fc8-8e6d-2d88f97d8d4f, 9fbef0a9-de84-4670-89c8-3705a4b668df, 0152c3a8-b32f-4b83-95e9-033ef34d95e4, 83d76609-a932-43af-9478-38e7bc3dc0f2, 57277ac4-1f54-48d7-ac50-f907ef95a1e8, 3c42d8d0-c878-4d65-98d8-816fe7401c27, 2bfd5480-2087-4d1d-acbf-3865d8f7cd17, d39208ee-e01b-40d8-9f02-0f344d7832ae, 8b811067-6cbe-4b25-8500-57ee218422aa, 74b05a25-b14c-47bc-8c22-bfab11d886e8'}]}"
"{'title': 'Daisy Tumour Bank', 'keywords': ['Mesothelioma (malignant', 'Malignant tumour of rectum (disorder)', 'UKCRC Tissue Directory', 'Leukaemia', 'Malignant tumour of oesophagus', 'disease', 'Daisy Tumour Bank', 'clinical disorder)', 'Malignant tumour of colon', 'Tumour'], 'doiName': 'Not Available', 'contactPoint': 'DTB@hyms.ac.uk', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY', 'contactPoint': 'DTB@hyms.ac.uk'}, 'abstract': 'Collection of samples and data across the following diseases: Leukaemia, disease, Malignant tumour of rectum (disorder),Malignant tumour of colon, Malignant tumour of oesophagus, Mesothelioma (malignant, clinical disorder)'}",b3ec5c18-e339-4bd8-8a59-5a3445a81f16,"{'spatial': 'England', 'physicalSampleAvailability': ['IN PROGRESS'], 'typicalAgeRange': 'Not Known'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'a2377b9f-034f-4370-95c2-070925aca652', '3.0.0': 'c03468f4-ba51-4d9f-a785-f041adb84724', '1.0.0': '1227f924-e3b5-449a-b2bc-0bd920e063f4', '2.0.0': '7a0d678a-a341-4643-af33-bfc22f2f4e9c', 'latest': 'c03468f4-ba51-4d9f-a785-f041adb84724'}","{'description': 'The Daisy Tumour Bank (DTB) is creating various collections of human samples to share with researchers, thus providing a resource of fit for purpose biological material to facilitate ethically approved cancer research. The DTB is collecting human tissue and blood samples from cancer patients within Hull University Teaching Hospitals NHS Trust. The DTB is a newly established biobank which is in the accrual process, therefore samples and data are not accessible to researchers at this time.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",c03468f4-ba51-4d9f-a785-f041adb84724,https://web.www.healthdatagateway.org/dataset/c03468f4-ba51-4d9f-a785-f041adb84724,"{'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}, 'access': {'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'jurisdiction': 'GB-ENG', 'dataProcessor': 'Not Applicable', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'accessRequestCost': 'Not specified', 'dataController': 'University of Hull'}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'distributionReleaseDate': '2019-08-12', 'startDate': '2018-01-01'}}",2020-01-13T17:04:35Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T15:57:50Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Hospital Episode Statistics Accident and Emergency', 'abstract': 'Record-level patient data set of patients attending Accident and Emergency Departments (including minor injury units and walk-in centres) in England. A record represents one attendance.', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'NHS DIGITAL', 'identifier': '5f86cd34980f41c6f02261f4'}, 'contactPoint': 'enquiries@nhsdigital.nhs.uk', 'keywords': ['Episodes', 'Hospital', 'Diagnosis', 'Emergency', 'Accident', 'Operations', 'A&E', 'A&E Department', 'Major Injuries', 'Minor Injuries', 'Urgent Care', 'Arrival Method', 'Ambulance', 'A&E Waiting Time', 'Initial Assessment', 'Time in A&E', 'Re-attendance', 'Unplanned Investigation', 'Treatment', 'Diagnosis', 'DIGITRIALS', 'HES', 'National Core Study', 'COVID-19', 'NCS']}",3ddfccc3-ba32-4653-a999-966b8d6c412f,"{'spatial': 'https://www.geonames.org/6269131/england.html', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Secondary Care pathway. This dataset covers attendances at accident and emergency departments in England. It includes information on the treatment and outcome of the attendance and can be linked to the HES APC dataset to further the pathway if a hospital admission is a result of the A&E attendance.', 'typicalAgeRange': '0-150', 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '4aaf4b66-1bd3-4213-9c86-2626ace88740', '7.0.0': 'c13ee365-cc04-4512-b371-7908fb717525', '2.0.0': 'a104ba06-be82-4f2d-b177-f13948643f84', '3.0.0': '512ab154-41e9-4231-9091-67814123e964', '5.0.0': '9a9eb7dd-c9fd-4132-963c-c0459a9b21d8', '4.0.0': '3ce8ddf2-c69b-4143-9e39-86c0ac2d8482', '6.0.0': 'ee2350f2-c619-446e-9785-fce8e0ac9f44', 'latest': 'c13ee365-cc04-4512-b371-7908fb717525'}","{'description': ""Hospital Episode Statistics (HES) is a database containing details of all admissions, A and E attendances and outpatient appointments at NHS hospitals in England.\n\nInitially this data is collected during a patient's time at hospital as part of the Commissioning Data Set (CDS). This is submitted to NHS Digital for processing and is returned to healthcare providers as the Secondary Uses Service (SUS) data set and includes information relating to payment for activity undertaken. It allows hospitals to be paid for the care they deliver.\n\nThis same data can also be processed and used for non-clinical purposes, such as research and planning health services. Because these uses are not to do with direct patient care, they are called 'secondary uses'. This is the HES data set.\n\nHES data covers all NHS Clinical Commissioning Groups (CCGs) in England, including:\n\n- private patients treated in NHS hospitals\n- patients resident outside of England\n- care delivered by treatment centres (including those in the independent sector) funded by the NHS\n\nEach HES record contains a wide range of information about an individual patient admitted to an NHS hospital, including:\n\n- clinical information about diagnoses and operations\n- patient information, such as age group, gender and ethnicity\n- administrative information, such as dates and methods of admission and discharge\n- geographical information such as where patients are treated and the area where they live\n\nWe apply a strict statistical disclosure control in accordance with the NHS Digital protocol, to all published HES data. This suppresses small numbers to stop people identifying themselves and others, to ensure that patient confidentiality is maintained.\n\nhttps://digital.nhs.uk/data-and-information/publications/statistical/hospital-accident--emergency-activity"", 'associatedMedia': ['https://digital.nhs.uk/data-and-information/publications/statistical/hospital-accident--emergency-activity'], 'isPartOf': 'HES'}",c13ee365-cc04-4512-b371-7908fb717525,https://web.www.healthdatagateway.org/dataset/c13ee365-cc04-4512-b371-7908fb717525,"{'access': {'dataProcessor': 'Not Applicable', 'accessService': 'Once your DARS application has been approved, data will be made available either by secure file transfer or through the Data Access Environment (DAE).\n\nSecure file transfer: https://digital.nhs.uk/services/transfer-data-securely\n\nDAE: https://digital.nhs.uk/services/data-access-environment-dae', 'jurisdiction': ['GB-ENG'], 'accessRights': ['https://digital.nhs.uk/services/data-access-request-service-dars'], 'dataController': 'NHS Digital', 'accessRequestCost': ['https://digital.nhs.uk/services/data-access-request-service-dars/data-access-request-service-dars-charges'], 'deliveryLeadTime': '2-6 MONTHS'}, 'usage': {'dataUseRequirements': ['ETHICS APPROVAL REQUIRED', 'NOT FOR PROFIT USE', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'resourceCreator': ['NHS Digital'], 'dataUseLimitation': ['NO RESTRICTION']}, 'formatAndStandards': {'conformsTo': ['NHS DATA DICTIONARY'], 'language': ['en'], 'format': ['csv', 'json'], 'vocabularyEncodingScheme': ['NHS NATIONAL CODES']}}","{'temporal': {'startDate': '2004-07-20', 'timeLag': '1-2 MONTHS', 'accrualPeriodicity': 'MONTHLY'}, 'origin': {'purpose': ['CARE', 'ADMINISTRATIVE'], 'source': ['EPR', 'OTHER']}}",2020-08-24T11:53:59Z,[{}],7.0.0,"{'derivation': ['Not Applicable'], 'qualifiedRelation': ['HES A&E to HES APC: Links the HES A&E Attendance to a subsequent APC admission so that information about the A&E attendance can be seen along with the APC record.']}",2022-03-17T12:16:53Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 14, 'structuralMetadata.tableName': 14, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 184, 'structuralMetadata.columnName': 184, 'structuralMetadata.columnDescription': 184, 'structuralMetadata.dataType': 184, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '805a38dd-717f-4fd9-a4f8-855d171e6e6c', 'name': 'Patient Data', 'dataElementsCount': 17, 'dataElements': '087eec74-1bf9-41ce-ad00-72dbef89b792, 1c6cff08-1b11-40ff-adea-c589b4ff1b5e, e1236683-5dcd-4744-bda9-95b72ae810cc, 58d3ff03-9e1d-4032-8753-7e529065d433, e076124c-fd44-4b5e-b6c9-c9cd82c68b33, 965600a8-c4b0-4cb9-ac27-7289e35ef974, 7034f99a-eae9-4c42-9502-c5b0e1a75bbc, 4dee27e3-42e4-4406-bfad-2b8d6cb601fa, 5db9a085-c3df-42c8-881b-538bad2b61ac, 74893e11-f519-4d13-98f3-a00f6b0ebb03, 245a12cb-fd15-4e07-9add-6585242f932d, 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"{'title': 'National Radiotherapy Dataset (RTDS) for CPRD GOLD', 'doiName': 'https://doi.org/10.48329/74nr-h920', 'contactPoint': 'enquiries@cprd.com', 'publisher': {'name': 'CPRD', 'memberOf': 'ALLIANCE', 'identifier': '607db9c2e1f9d3704d570cee'}, 'abstract': 'CPRD GOLD linked National Radiotherapy Dataset (RTDS) data contain records of NHS radiotherapy services delivered for malignant disease in England.', 'keywords': ['Radiotherapy', 'RTDS']}",56a66de8-3470-4a36-ac71-4d5471e72654,"{'followup': '1 - 10 YEARS', 'pathway': 'Cancer registration data are collected from a range of health care provider systems and other services.', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-115', 'spatial': ['https://www.geonames.org/6269131/england.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'5.0.0': '2918676c-74b0-4a4e-8814-697e9aa6a81c', '6.0.0': 'c22e5f4e-02e2-4b54-b895-5e31b75a1f44', '4.0.0': '3943e6de-6c32-43dd-8090-16ec9ca0902f', '3.0.0': 'ae5a73a5-53a1-498c-9fcf-5ffe5ae01344', '2.0.0': 'dd8b4db7-08b1-4f3f-bc0e-0f859bba6bac', '1.0.0': 'a9707ddc-9f83-4605-bbd3-19aa8817e03a', '0.0.1': '8f1aff59-50e3-49e1-903b-557c36ed0f0c', 'latest': 'c22e5f4e-02e2-4b54-b895-5e31b75a1f44'}","{'description': 'CPRD GOLD linked National Radiotherapy Dataset (RTDS) data contain records of radiotherapy services provided since April 2009, including teletherapy and brachytherapy. 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"{'title': 'COVID-19 Vaccination Status', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '5f86cd34980f41c6f02261f4', 'name': 'NHS DIGITAL'}, 'contactPoint': 'enquiries@nhsdigital.nhs.uk', 'abstract': 'Data relating to coronavirus (COVID-19) vaccination status.', 'keywords': ['DIGITRIALS', 'VACCINATION', 'ENGLAND', 'National Core Study', 'COVID-19', 'NCS']}",98372a87-f3e6-475d-be12-46c0f9587413,"{'pathway': 'NOT APPLICABLE', 'typicalAgeRange': '16-150', 'spatial': 'http://www.geonames.org/6269131/england.html', 'followup': 'OTHER', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': 'faed0296-9dbe-4d32-a991-df361e4cfa32', '3.0.0': 'c230a8d8-bf78-4713-8f2f-312162e92e55', '1.0.0': 'a10eeef3-8338-4ec1-b146-8f72a369b841', '0.0.1': '53daaea6-46e8-4665-b50d-5c86396b3bbf', 'latest': 'c230a8d8-bf78-4713-8f2f-312162e92e55'}","{'description': ""Includes: Patient demographics, Source Organisation, vaccination details and vaccine batch events. Its scope covers: \nAnyone vaccinated within England \nAnyone vaccinated in a Devoted Administration where this information is subsequently passed to England.    \n\nSettings include: \nhospital hubs - NHS providers vaccinating on site \nlocal vaccine services – community or primary care led services which could include primary care facilities, retail, community facilities, temporary structures or roving teams \nvaccination centres – large sites such as sports and conference venues set up for high volumes of people \n\nTimescales for dissemination can be found under 'Our Service Levels' at the following link: https://digital.nhs.uk/services/data-access-request-service-dars/data-access-request-service-dars-process""}",c230a8d8-bf78-4713-8f2f-312162e92e55,https://web.www.healthdatagateway.org/dataset/c230a8d8-bf78-4713-8f2f-312162e92e55,"{'usage': {'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS'], 'resourceCreator': ['NHS DIGITAL'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE'], 'investigations': ['https://digital.nhs.uk/services/data-access-request-service-dars/register-of-approved-data-releases']}, 'formatAndStandards': {'language': ['en'], 'format': ['csv'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['SNOMED CT']}, 'access': {'jurisdiction': ['GB-ENG'], 'dataController': 'NHS DIGITAL', 'accessRequestCost': ['https://digital.nhs.uk/services/data-access-request-service-dars'], 'accessRights': ['https://digital.nhs.uk/services/data-access-request-service-dars'], 'accessService': 'Once your DARS application has been approved, data will be made available either by secure file transfer or through the Data Access Environment (DAE).\n\nSecure file transfer: https://digital.nhs.uk/services/transfer-data-securely\n\nDAE: https://digital.nhs.uk/services/data-access-environment-dae'}}","{'temporal': {'endDate': '2021-09-30', 'accrualPeriodicity': 'WEEKLY', 'timeLag': 'LESS 1 WEEK', 'startDate': '2020-12-08'}, 'origin': {'purpose': ['CARE', 'OTHER'], 'source': ['EPR'], 'collectionSituation': ['PRIMARY CARE', 'OTHER']}}",2021-03-05T15:12:26Z,"[{'observedNode': 'PERSONS', 'measuredValue': '17521000', 'disambiguatingDescription': 'People receiving their first dose of a COVID-19 vaccination ', 'observationDate': '03/03/2021', 'measuredProperty': 'Count'}]",3.0.0,"{'qualifiedRelation': ['https://digital.nhs.uk/services/data-access-request-service-dars/register-of-approved-data-releases'], 'tools': ['https://digital.nhs.uk/developer/api-catalogue/vaccination-adverse-reactions-covid-19-standards'], 'derivation': ['Data will be minimised as appropriate relative to the data access application']}",2021-10-13T08:35:06Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 41, 'structuralMetadata.columnName': 41, 'structuralMetadata.columnDescription': 41, 'structuralMetadata.dataType': 41, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'cb9db028-0bab-4b59-b5ae-be51ea8c783e', 'description': 'COVID-19 Vaccination Status', 'name': 'COVID-19 Vaccination Status', 'dataElementsCount': 41, 'dataElements': '5cb11066-29a7-4ad9-bbc4-f9580eceb3ad, 19cddb66-3d5f-4f45-9586-ac1516a6d863, 395a2149-c569-4869-9a9d-7da13b9838f7, 53a0ea87-8e2b-4f87-8122-0d22c29d67f7, 80ba6165-7542-4e11-8823-4ff43f2093fe, c0b880c8-7182-4fb5-af9d-b6a0ca438192, a514d812-45d3-4bb2-b7d0-4538c17e0f85, 99b6dab4-493a-46ca-9474-a956bc86921e, 3d4fa231-1b58-450d-9050-c9a24f8711f5, 0f473698-3e98-4874-bf1a-20184e717fe5, 29e1fb67-4c3a-41a5-81c2-4087a91fa955, f2b282b5-c7db-4a02-864c-03a08913c7cb, 064fd23d-a623-46e2-b5ab-84134dee03c2, d6403b67-9d2b-4ae2-aa59-7399305da820, 2012d868-1ef7-472b-b311-cdb867d0901f, 63a832f7-dc14-4484-93cc-53c3b1517ba2, 512353cc-eccd-4e7f-be55-a90e030311d9, c8721641-4071-4739-93d5-81d6ad51fb00, 57f72f46-9328-46c5-9b17-962eb22d073a, eef2a23d-e6e8-4b7d-930d-e6ed37c857b4, bbd81579-6ea9-4acd-97e2-bd1f22e292f5, 62dc5961-e33b-4a4e-a6d0-02da076df282, 208e4f21-f5d5-4006-b3c7-082c51d7ac07, 72dcf34b-e7ec-434e-9178-3ec7d734635c, 33a6b9f5-884e-49a6-8ca9-9000d4bbf084, 915cedeb-7bbf-4db5-ac9f-f849ba8800b1, 4d9eb590-d1ab-4fa6-b2af-1f98aab98e7f, ace0b5ae-d27c-458f-b325-b2e16c72b374, dd89bebe-2702-4217-b871-ad0fc94dfdaf, d96f7d65-7d29-4cf2-9e2e-21338661093c, 4c4cfc5d-2fff-4558-bfc6-174f1e2ec624, d99483fa-9d91-4a46-be27-cbe7ae6577df, f7ef8fb4-0851-4429-8890-1812953c2b3e, 98d21086-6461-4983-a5f5-c26f619d031b, 46d73b8d-a964-473c-8d9b-e7bc50bbca28, ef28a0fe-a502-4171-81e9-4a18ca3c256e, c2dda611-fb71-46a7-bf01-0559987b2825, b63dd169-b1e0-4d1b-abc4-a33c8fd8e9cd, 992c64d8-58d0-472c-9953-8b40ba426a1c, 4ced3da5-c1a9-440d-b5d5-07dd03ecb64e, e8f0f1ab-208d-4121-b3c0-6722c2185b82'}]}"
"{'title': 'NICAM: Nilotinib treatment for c-KIT mutated advanced AMM', 'publisher': {'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE', 'contactPoint': 'nicam-icrctsu@icr.ac.uk'}, 'abstract': 'Collection of samples and data across the following diseases: Malignant melanoma of eye (disorder).', 'contactPoint': 'nicam-icrctsu@icr.ac.uk', 'keywords': ['Malignant melanoma of eye (disorder)', 'UKCRC Tissue Directory', 'NICAM', 'c-KIT', 'Nilotinib', 'AMM'], 'doiName': 'Not Available'}",ba0edcaf-854d-4907-851a-280b56128b3b,"{'typicalAgeRange': 'Not Known', 'physicalSampleAvailability': ['IN PROGRESS'], 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'e68ce45f-1865-41c3-b172-ecbcf1394298', '3.0.0': 'c2c77d1a-d4d8-40cd-95f3-31912d4bd561', '1.0.0': '72cbcfda-0766-4f17-a576-cd458c578882', '2.0.0': '1c17f45b-ba0f-4e97-a0f0-34a600844d4f', 'latest': 'c2c77d1a-d4d8-40cd-95f3-31912d4bd561'}","{'description': 'Phase II single arm study evaluating the activity of nilotinib in rare c-KIT mutated acral and mucosal melanoma (AMM). Entry into the trial is a 2 step process.  Patients presenting with AMM are first registered (Step 1) for screening including confirmation of c-KIT mutation status.  Eligible patients who proceed to study entry (step 2) commence treatment with nilotinib 400 mgs twice daily for as long as they continue to benefit from treatment.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",c2c77d1a-d4d8-40cd-95f3-31912d4bd561,https://web.www.healthdatagateway.org/dataset/c2c77d1a-d4d8-40cd-95f3-31912d4bd561,"{'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}, 'access': {'dataProcessor': 'Not Applicable', 'accessRights': 'Please contact the publisher using Contact Point details provided.', 'dataController': 'The Institute of Cancer Research', 'accessRequestCost': 'Not specified', 'jurisdiction': 'GB-ENG', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED.'}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2009-01-01'}}",2020-01-13T17:16:33Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T16:09:14Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Outpatient Referral', 'publisher': {'contactPoint': 'SAILDatabank@swansea.ac.uk', 'memberOf': 'ALLIANCE', 'name': 'SAIL'}, 'doiName': 'In Progress', 'abstract': 'Data on Outpatient referrals from primary care.', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'keywords': ['Referral', 'Outpatient', 'SAIL']}",7465c65e-c321-42e9-a2f4-6bc664caf1fc,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Secondary care', 'followup': 'OTHER', 'spatial': 'Wales', 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '3bd6200c-8cb3-499a-9c12-c31e69a92b1a', '4.0.0': 'c2ddca9f-f144-437b-ac7a-0a628a50ba1a', '1.0.0': '422c6ac0-4956-48f5-9138-3dddf2a9c8a2', '3.0.0': '8b1f4b49-78b7-4f15-b4d0-ea2b009750cc', '2.0.0': '9856fab3-1b1d-4952-abba-bcef0f92f900', 'latest': 'c2ddca9f-f144-437b-ac7a-0a628a50ba1a'}","{'description': 'Monthly return submitted by Local Health Boards.\nA complete referral pathway to secondary care, including all clinical referrals received from General Practitioner, General Dental Practitioners, Community Dental Services, A&E Departments, self referrals, walk-ins or emergency patients accompanied by a GP letter, and Consultant to Consultant Referrals.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://www.youtube.com/watch?v=ZK9-Jw3uVkw', 'https://saildatabank.com/']}",c2ddca9f-f144-437b-ac7a-0a628a50ba1a,https://web.www.healthdatagateway.org/dataset/c2ddca9f-f144-437b-ac7a-0a628a50ba1a,"{'access': {'dataProcessor': 'SAIL Databank', 'accessRights': ['https://saildatabank.com/application-process/'], 'deliveryLeadTime': '2-6 MONTHS', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'jurisdiction': 'GB', 'accessRequestCost': 'Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.', 'dataController': 'SAIL Databank'}, 'formatAndStandards': {'language': 'en', 'format': ['SQL database table'], 'conformsTo': 'LOCAL', 'vocabularyEncodingScheme': 'LOCAL'}, 'usage': {'dataUseLimitation': 'GENERAL RESEARCH USE', 'isReferencedBy': ['Jones, K. H., Ford, D. V., Thompson, S. and Lyons, R. (2020) “A Profile of the SAIL Databank on the UK Secure Research Platform”, International Journal of Population Data Science, 4(2). doi: 10.23889/ijpds.v4i2.1134.'], 'resourceCreator': ['NHS Wales’ Informatics Service (NWIS)'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION']}}","{'origin': {'purpose': ['STUDY', 'CARE', 'AUDIT', 'ADMINISTRATIVE', 'FINANCIAL'], 'collectionSituation': 'OUTPATIENTS', 'source': 'EPR'}, 'temporal': {'accrualPeriodicity': 'QUARTERLY', 'timeLag': '1-2 MONTHS', 'distributionReleaseDate': '2019-09-12', 'startDate': '2009-04-01', 'endDate': '2020-06-02'}}",2020-01-13T14:47:28Z,,4.0.0,"{'tools': ['https://conceptlibrary.saildatabank.com/'], 'qualifiedRelation': ['Yes. To any SAIL dataset & reference data.'], 'derivation': ['Not Available']}",2020-12-04T17:55:30Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 105, 'structuralMetadata.columnName': 105, 'structuralMetadata.columnDescription': 105, 'structuralMetadata.dataType': 105, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '97156da4-57a7-4d96-ac81-606bfbe756bf', 'description': 'The Outpatient Referral (OPR) Data Set captures all referrals received by NHS Wales’ provider organisations for a first outpatient appointment for all consultant or nurse led clinic activity, where that meets the criteria outlined in Terms Clinic Appointment - Consultant Led (Outpatients) or Terms Clinic Appointment - Nurse Led (Outpatients) regardless of the patient’s area of residence.\nThe data set includes referrals from any source and is not limited to only those referrals made by a GP.', 'name': 'REFERRAL', 'dataElementsCount': 105, 'dataElements': '86990a85-d3ff-4358-bdda-54fc50a72e2a, 5a12f3c5-bab6-4d9f-b887-07f23d9a584c, d32e30ca-9237-4f5b-a875-cd83a2c8ac65, ddf0e6ad-5d98-4a69-b79e-67b6fb398f56, c133a653-aa1c-485e-b7ae-b1d2bf2a6242, 0c4d9566-9aa3-494f-9c4d-4a70768ea28a, 41b3d2f1-d504-4ac9-b677-c010d94b6195, 05dc006f-b914-4585-8da6-b0fa081ed63b, d291a564-ebe5-4fca-a1e9-373dc29214a2, a222c754-9a09-4609-a849-6908f55be4c4, 72ad8767-6dcc-4e25-9234-b85ad699733e, 1beb5413-dad8-4004-9555-c5c90fb8ca8b, 3e098f4c-f2c9-4408-ae63-8d03d7733d90, 6c52ba5b-dfaa-49d7-913c-28075282dc34, effbc4e9-fc71-49d6-bf17-8a6ba361c769, 338e14c1-1fdb-4a41-8454-8f5b63428eaf, 794878ea-d21d-4f43-adbc-2c02b7da8c02, 40f59c31-4324-4b92-aeef-fb43b267b7d9, c61c4a80-f619-49dc-863b-13df1a640157, 8d73f01d-97e4-4015-bd5b-7b705bc0592a, d2817319-6bd0-4536-91b9-138f30dcbbe5, fb0b31a2-0050-47c6-bc02-d77e60f5f71f, 7c6dcc4c-6040-4496-8943-f39e8119672e, cae65b7e-d8ad-4f05-baab-37f1ce53d7c8, 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"{'title': 'National Diabetes Audit', 'contactPoint': 'enquiries@nhsdigital.nhs.uk', 'publisher': {'contactPoint': 'enquiries@nhsdigital.nhs.uk', 'memberOf': 'ALLIANCE', 'name': 'NHS DIGITAL'}, 'keywords': ['Diabetes', 'Type 2', 'Insulin', 'Type 1', 'Audit', 'DIGITRIALS'], 'abstract': 'Audit collects Information about general diabetes care.\nData submitted by health care services, relevant to service they provide i.e. Secondary Care Bodies = Type 1, GP practices = Type 2. Includes demographics and diabetes relevant biometric information.'}",9a434a5c-563b-4da1-9133-9994960ade54,"{'spatial': 'England and Wales', 'followup': 'OTHER', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Dataset includes information from primary care and specialist diabetes care in secondary care settings.', 'typicalAgeRange': '16-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '88c33d07-b009-4377-911a-8ba7bcdbf2b7', '6.0.0': 'c2e112a0-a198-46b0-9a0c-ec91edfb6839', '2.0.0': 'c23c588f-7ab6-4c19-af4d-fe1e4d181102', '3.0.0': '19f21b8f-6ae0-4cbd-a175-596b8476f69a', '4.0.0': 'aafe3a2f-c0f3-44f2-b50e-d1120d5f2e93', '5.0.0': '5f592437-20b9-42e3-8457-e1273142c61a', 'latest': 'c2e112a0-a198-46b0-9a0c-ec91edfb6839'}","{'description': 'The National Diabetes Audit (NDA) is part of the National Clinical Audit and Patient Outcomes Programme, which is managed by the Healthcare Quality Improvement Partnership (HQIP) and funded by NHS England. \n\nThe Core NDA collects information for a 15-month audit period. This is collected from both primary and secondary care services – for example:\n• 2019-20 audit collects for the period 1 January 2019 to 31 March 2020\n• 2020-21 audit collects for the period 1 January 2020 to 31 March 2021\nAnnual data is typically released in November. \nQuarterly data collection\nThe data is extracted quarterly from general practices via the General Practice Extraction Service (GPES). \nIndicative timings for extraction are:\n• August 2019: collection of data from January to June 2019\n• November 2019: collection of data from January to September 2019\n• February 2020: collection of data from January to December 2019\n• May 2020: collection of full audit year data \nThe first 3 quarters of data are typically published the month after extraction.\nThe NDA started in 2003-4 as part of the Diabetes National Service Framework (NSF) implementation plan to provide reliable measurements for service improvement and monitor the impact of the NSF. The core components of the NDA were designed to align with the Diabetes NSF, The National Institute for Health and Care Excellence (NICE) guidelines and Quality Standards in respect of achievement rates for annual care process, and treatment targets and disease measure including premature mortality.  It integrates data reflecting contributions from all primary and secondary care providers and captures data on over 3 million people with diabetes each year. \n\nSince 2010 new elements have been incorporated into the audit programme to include specialised care pathways. The NDA programme now reports on:\n\n• Care processes and Treatment Targets (NDA Core)\n• Complications and Mortality (NDA Core) \n• Pregnancy in women with diabetes (NPID)\n• Foot ulcer management in people with diabetes (NDFA)\n• Continuous Subcutaneous Insulin Infusion in people with Type 1 Diabetes \n• Care of in-patients with diabetes (NaDIA) \n• Complications related to the four main harms that can occur to inpatients with diabetes in Acute hospitals in England (NaDIA – Harms)\n• Transitional care for people with diabetes through childhood to adulthood\n• Progress on invitation to attend and uptake of offer in the NHS Diabetes Prevention Programme \n\nThe inclusion of NDA in the GP Contract allowed collection of data directly from primary care systems via the GPES for NDA Core primary care data. This has resulted in increased participation and reduction in burden on primary care providers due to the automated nature of GPES. 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"{'title': 'Covid Lateral Flow Test (CVLF)', 'publisher': {'name': 'SAIL', 'identifier': '5f3f98068af2ef61552e1d75', 'memberOf': 'ALLIANCE'}, 'abstract': 'The test for people without coronavirus symptoms is called a rapid lateral flow test. Rapid lateral flow tests help to find cases in people who may have no symptoms but are still infectious and can give the virus to others.', 'keywords': ['Covid', 'Covid-19', 'Lateral Flow', 'CVLF', 'NCS', 'National Core Study', 'project-specific'], 'contactPoint': 'SAILDatabank@swansea.ac.uk'}",ce60d677-6263-4d41-9d45-d3c7ebb3ee36,"{'typicalAgeRange': '0-120', 'spatial': ['https://www.geonames.org/2634895/wales.html'], 'physicalSampleAvailability': ['SWABS'], 'pathway': 'Covid-19', 'followup': 'UNKNOWN'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'b47fafb3-9c49-4b07-974b-8e91f0b5670a', '3.0.0': 'c303bdc0-fa5d-4c22-84ca-83577446062d', '2.0.0': '7f49d025-11d9-4d04-9b77-19a2f5acf8e6', '0.0.1': '8dafbcb0-7876-4f71-8b54-eabf7d441080', 'latest': 'c303bdc0-fa5d-4c22-84ca-83577446062d'}","{'description': 'The test for people without coronavirus symptoms is called a rapid lateral flow test. Rapid lateral flow tests help to find cases in people who may have no symptoms but are still infectious and can give the virus to others.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://www.youtube.com/watch?v=ZK9-Jw3uVkw', 'https://www.hdruk.ac.uk/news/covid-19-vaccine-data-listed-and-available-to-request-through-hdr-innovation-gateway/?utm_source=hive&utm_medium=email']}",c303bdc0-fa5d-4c22-84ca-83577446062d,https://web.www.healthdatagateway.org/dataset/c303bdc0-fa5d-4c22-84ca-83577446062d,"{'access': {'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'jurisdiction': ['GB-GBN'], 'dataProcessor': 'SAIL Databank', 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'accessRights': ['https://saildatabank.com/application-process/'], 'dataController': 'SAIL Databank'}, 'formatAndStandards': {'language': ['en'], 'conformsTo': ['LOCAL'], 'format': ['SQL Database Table'], 'vocabularyEncodingScheme': ['LOCAL']}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': ['DHCW'], 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS']}}","{'origin': {'source': ['EPR'], 'collectionSituation': ['CLINIC', 'COMMUNITY', 'PRIVATE', 'OTHER'], 'purpose': ['CARE']}, 'temporal': {'endDate': '2021-08-01', 'startDate': '2021-01-01', 'timeLag': 'OTHER', 'accrualPeriodicity': 'MONTHLY'}}",2021-04-09T13:10:44Z,"[{'observedNode': 'PERSONS', 'observationDate': '21/09/2021', 'measuredProperty': 'Count', 'measuredValue': '1'}]",3.0.0,"{'derivation': ['Not Available\n'], 'qualifiedRelation': ['Yes. To any SAIL dataset & reference data.\n'], 'tools': ['https://conceptlibrary.saildatabank.com/']}",2022-02-03T14:38:51Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 65, 'structuralMetadata.columnName': 65, 'structuralMetadata.columnDescription': 65, 'structuralMetadata.dataType': 65, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '3726b76a-3618-450c-9f38-cc28cd4798ea', 'name': 'LATERAL_FLOW_TESTS', 'dataElementsCount': 65, 'dataElements': '178582e6-5dbd-403c-a489-f0fe5fa33a2f, a8c39f7d-4385-4511-b767-a21a6496d2d6, b53fc5f1-b70f-473e-91d8-4c009aec2566, d94d17ad-9d30-4b22-b77d-0c57651b04e8, 3e91ce8a-407f-4ff5-b563-18c4327bd427, 0fff192a-2370-484c-9fe8-0d0b0096ce05, a030e6b0-2a9b-4448-814a-f9cb962efeb6, 73ed7aaf-fbb5-44d3-b769-08481fe6a74c, 00387898-b475-4430-beb6-1176e2346b5e, 51a07175-e61a-4dcc-b7c3-6cddcf0a3d38, f4e3fcc0-87f5-4636-8822-0720a09e0799, e1bb0445-542e-44f0-9d93-25b25b78308e, 5cc2d5ca-fc41-4467-b777-f4fea1b871e3, f7c97aa2-0c3b-47af-a69c-8790c09d0e93, 6361bead-0780-4375-be76-ebae44fe4839, e6bb8570-43af-4287-babf-39b212b40878, ead25492-42b3-450e-b385-5ee30f60b641, 07c29290-f217-42b7-b8fc-32aed3fdda1f, d9bc6ad2-1f98-4d25-a6a2-fadf2e664fa6, 9ec3f478-1f6f-4658-bb40-8d33df744c9d, 310a396a-6697-41a7-8dad-65eb150d8ed0, 570574d7-e83d-4241-b8fe-9b8a8674d399, 587f9459-213d-4b93-ad00-f27491e3f018, ef635c1b-4a57-4c83-ad5d-e0180011b435, 37ca3c59-d706-476e-a5d2-8159406c81ce, 873e5064-ba00-414a-9e16-756c11e6afc3, b4962975-39d2-4c43-8d19-765e61f0338c, 7611c921-1d0a-4b59-b660-d9bdccf3343f, dc148b0c-6418-47fe-a28d-491a1289065f, 1d15b7a7-d49a-4289-aa4a-a65997a38031, e4597dbc-01be-4482-8200-6456456e052a, 148805db-4196-4aa4-9bbb-e56d838db2b8, 315fca9b-4fd7-44a3-adfd-2c745e971143, 03843ecf-d692-4e90-a744-472984e41935, 215a0d79-e9ce-4e61-8188-776562d7dac2, 175efe0b-6054-4d69-b64a-2ad4a16c8be6, 3c18fb09-d9df-48d9-a59f-f9dcfa38e989, c0b4e4dd-fa1c-4124-b61e-f68a4becb3a7, 64272c24-f9df-48ff-b185-a6787471f5ea, 01cdcc32-c99e-4bc9-9716-42bd5b8fc9f9, 3b361b44-debd-4d25-a572-8e32b341a11d, b5058c34-0e79-4520-99c9-295fab7fb70d, 73ad6705-8098-45fa-82b6-1d861bdedd82, 0804b671-9612-4a51-baa1-be2930aaddfb, 6f6f4f6b-0361-43d1-82ba-c5d1fcca44a7, bebb9f70-9b0e-4765-b1be-b3d5224228d1, 43d0c52f-b818-44ff-8929-ec6682060df1, c8e5db06-cf26-41c0-950f-f6f2a1dc9706, 9e828e6e-7c2f-4c5b-b897-be9e9acfdde2, d194958b-d26e-4f30-978b-076ebd89e9e2, 78e91595-ff2a-4c55-883a-8439ae981988, 33c1a2dc-0079-4ad1-b7f5-e5295594eedc, 7019672c-81bf-4a93-9621-6d446de4d101, 0e9f8480-7865-4e8e-bf40-26a7b71c2571, fe4989ab-4aff-4dd1-b1f3-b5865a1b5f50, 0e057401-28e8-4b77-82f7-924373db6fbe, a9370479-3109-496f-8be5-400bb252e4d4, f0ec05d6-5c98-4fd4-8d9c-89e9271c7227, 63cb626e-c64c-4611-ab43-f114e119766e, 8df4ce2b-f864-4a52-a3de-23bf71d11f19, 5e2d25d3-a5f7-4dc4-9d43-c58bb9efc169, c45e87fd-c4d5-4182-a6c0-cf3d732aff86, bafa40c9-5288-4456-984a-ac3c30d214ff, 01e25b07-3a32-42b7-b121-01ba3f4dd522, 63ea598c-f8a0-4a43-824f-0b59c53507d2'}]}"
"{'title': 'University College London - Edinburgh-Bristol (UCLEB) multi-omics consortium', 'publisher': {'identifier': '624472a84ca5dcd8ea6e0d71', 'name': 'UCLEB Consortium', 'memberOf': 'OTHER'}, 'keywords': ['UCLEB', 'DrugDev', 'Genomics', 'Proteomics', 'Metabolomics', 'Cardiovascular Disease', 'Diabetes', 'Health Data'], 'abstract': 'The UCLEB consortium of highly-phenotyped population-based prospective cohort studies provides a multi-omics data source consisting of genomics, metabolomics and proteomics for researching the molecular basis of disease and to inform drug development.', 'contactPoint': 'a.hingorani@ucl.ac.uk'}",cd8f4e44-0228-4abd-9286-0509afe9427e,"{'typicalAgeRange': '0-150', 'pathway': 'NOT APPLICABLE', 'physicalSampleAvailability': ['AVAILABILITY TO BE CONFIRMED'], 'followup': '> 10 YEARS', 'spatial': ['United Kingdom']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'c34e6ba2-f857-43e9-9cf5-372a44347833'},"{'description': ""The UCLEB consortium brings together well established prospective observational studies comprising over 30000 individuals from across the UK to interrogate genetic and biomarker associations underlying cardiovascular and other diseases. Participating studies include: Whitehall-II (WHII), British Regional Heart Study (BRHS), English Longitudinal Study of Ageing (ELSA), MRC National Survey of Health and Development (MRC NSHD), 1958 Birth Cohort (1958BC), Edinburgh Artery Study (EAS), Edinburgh Type 2 Diabetes Study (ET2DS), Edinburgh Heart Disease Prevention Study (EHDPS), the Aspirin for Asymptomatic Atherosclerosis Trial (AAAT), Caerphilly Prospective Study (CaPS), the British Women's Heart and Health Study (BWHHS), Southall and Brent Revisited (SABRE) and a subset of the UK Longitudinal Women's Cohort.  The consortium enables research into the genomic and other determinants of disease using a range of genotyping panels (Cardiochip, n=8000; Metabochip, n=20,000; and the Infinium Human Core DrugDev array, n=20,000), as well as the Nightingale NMR metabolomics platform (>200 lipidomic and metabolomic measures) and the Somalogic Proteomics platform (>5000 circulating proteins)  \n\nGenotypes are currently imputed to the Haplotype Reference Consortium panel (HRC) providing a rich source of genetic variants used in Mendelian Randomisation and Drug Target Validation pipelines.  The genotyping arrays have overlapping SNP content providing extensive and dense coverage of key areas of the human genome.   \n\nThese data are complemented by a wide range of survey data collected by each study over several years including clinical surveys with a range of individually assayed biomarkers, as well as measures of cognitive, respiratory, cardiac, and renal function.   There is also linkage to NHS health outcomes. \n\nData is hosted at UCL on the secure, access restricted servers with sensitive identifiable data on the UCL ISO27001 Data Safe Haven.  \n\nIndividual cohort studies maintain independent data governance and ethics for core data.  Data Access for UCLEB consortium data is granted via application to the UCLEB Steering group indicating which studies and datasets are required for proposed research.  In some instances a further application to the individual study is required for bespoke datasets."", 'isPartOf': 'NOT APPLICABLE'}",c34e6ba2-f857-43e9-9cf5-372a44347833,https://web.www.healthdatagateway.org/dataset/c34e6ba2-f857-43e9-9cf5-372a44347833,"{'access': {'accessRequestCost': ['Cost recovery'], 'dataController': 'University College London\nUniversity of Bristol\nUniversity of Edinburgh', 'accessRights': ['In progress'], 'jurisdiction': ['GB'], 'dataProcessor': 'University College London\nUniversity of Bristol\nUniversity of Edinburgh'}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'conformsTo': ['LOCAL'], 'format': ['text']}, 'usage': {'isReferencedBy': ['Shah T, Engmann J, Hingorani AD et al on behalf of UCLEB Consortium 2013 Population Genomics of Cardiometabolic Traits: Design of the University College London-London School of Hygiene and Tropical Medicine-Edinburgh-Bristol (UCLEB) Consortium https://doi.org/10.1371/journal.pone.0071345 '], 'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY', 'NO LINKAGE'], 'dataUseRequirements': ['COLLABORATION REQUIRED', 'ETHICS APPROVAL REQUIRED', 'GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'NOT FOR PROFIT USE', 'PROJECT SPECIFIC RESTRICTIONS', 'PUBLICATION MORATORIUM', 'PUBLICATION REQUIRED', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION', 'DISCLOSURE CONTROL'], 'resourceCreator': ['UCLEB Consortium']}}","{'origin': {'purpose': ['STUDY'], 'collectionSituation': ['OTHER'], 'source': ['OTHER']}, 'temporal': {'timeLag': 'VARIABLE', 'accrualPeriodicity': 'IRREGULAR', 'startDate': '1946-03-10'}}",2022-04-12T17:04:19Z,"[{'observedNode': 'PERSONS', 'measuredValue': '30000', 'disambiguatingDescription': 'Cardiochip, n=8000; Metabochip, n=20,000; and the Infinium Human Core DrugDev array, n=20,000, as well as the Nightingale NMR metabolomics platform >200 lipidomic and metabolomic measures) and the Somalogic Proteomics platform >5000 circulating proteins', 'observationDate': '01/06/2016', 'measuredProperty': 'Count'}]",1.0.0,,2022-04-12T17:04:19Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'TRICON8', 'doiName': 'Not Available', 'publisher': {'memberOf': 'ALLIANCE', 'contactPoint': 'mrcctu.icon8and8b@ucl.ac.uk', 'name': 'TISSUE DIRECTORY'}, 'contactPoint': 'mrcctu.icon8and8b@ucl.ac.uk', 'keywords': ['Malignant tumour of ovary', 'TRICON8', 'UKCRC Tissue Directory'], 'abstract': 'Collection of samples and data across the following diseases: Malignant tumour of ovary'}",85113a93-89ed-40e3-a479-33b461b91858,"{'spatial': 'England', 'physicalSampleAvailability': ['IN PROGRESS'], 'typicalAgeRange': 'Not Known'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'd54b2349-502c-4277-be0a-0588fa035f96', '3.0.0': 'c3b4f4f2-953e-4470-bedd-9d09fd30a508', '1.0.0': '6f1dc04f-25c0-4304-918b-ff877cfba76f', '2.0.0': 'b796b821-97cf-4aa1-bbc7-53e3c1fbc33f', 'latest': 'c3b4f4f2-953e-4470-bedd-9d09fd30a508'}","{'description': 'TRICON8 is the translational research sub-study of the ICON8 trial. Its aim is to establish a large, comprehensive biobank comprising tumour tissue, blood and serial plasma samples with associated clinical data which will be an invaluable resource for high-quality translational research in ovarian cancer. \nICON8 is a phase III randomised controlled trial designed to investigate the safety and efficacy of two dose-dense, dose-fractionated, weekly carboplatin-paclitaxel combination chemotherapy regimens for the treatment of newly diagnosed ovarian cancer compared to standard three-weekly carboplatin-paclitaxel. There is a growing body of evidence that using dose-fractionated paclitaxel in particular may have increased anti-tumour effects, and this is thought to be due to enhanced anti-angiogenic and pro-apoptotic effects.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",c3b4f4f2-953e-4470-bedd-9d09fd30a508,https://web.www.healthdatagateway.org/dataset/c3b4f4f2-953e-4470-bedd-9d09fd30a508,"{'access': {'jurisdiction': 'GB-ENG', 'accessRequestCost': 'Not specified', 'dataController': 'Medical Research Council', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'dataProcessor': 'Not Applicable', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED'}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}}","{'temporal': {'startDate': '2011-01-01', 'accrualPeriodicity': 'IN PROGRESS', 'distributionReleaseDate': '2019-05-22'}}",2020-01-13T17:14:16Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:15:00Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': '2011 Census variables (and variable breakdowns)', 'publisher': {'contactPoint': 'phs.edris@phs.scot', 'memberOf': 'ALLIANCE', 'name': 'PUBLIC HEALTH SCOTLAND'}, 'contactPoint': 'phs.edris@phs.scot', 'abstract': 'A subset of 2011 Census variables (and variable breakdowns)', 'keywords': ['NCS', 'Census', 'Scotland', 'National Core Study', 'COVID-19']}",a05aef07-c3fa-4331-905a-6b6f58eac3d5,"{'followup': 'OTHER', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Not applicable', 'spatial': 'https://www.geonames.org/2638360/scotland.html', 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'af20ebb2-018a-4557-8ced-0bec75dba150', '2.0.0': 'c4426ec2-fbf0-45b2-9f68-0477527257a0', '1.0.0': '3fb06d01-cde5-4e68-b438-cfa0b0f8de9a', 'latest': 'c4426ec2-fbf0-45b2-9f68-0477527257a0'}","{'description': 'The 2011 Census extract for COVID-19 research does not  include wholly imputed persons, late returns, duplicate persons, and termind=2 observations. Termind=2 observations are those students who have an alternative term-time address. This process avoids double counting students, keeping only the records associated with their primary term-time address.\n\nSTATS PBPP approval is required as well as health and social-care PBPP. Application form available from statistics.enquiries@gov.scot or your eDRIS research co-ordinator.', 'associatedMedia': ['https://blogs.gov.scot/statistics/wp-content/uploads/sites/24/2020/05/Covid-19-Scottish-Government-Bespoke-data-access-request-statement-Covid-requests.pdf', 'https://www.scotlandscensus.gov.uk/census-methodology'], 'isPartOf': 'Census'}",c4426ec2-fbf0-45b2-9f68-0477527257a0,https://web.www.healthdatagateway.org/dataset/c4426ec2-fbf0-45b2-9f68-0477527257a0,"{'access': {'deliveryLeadTime': 'VARIABLE', 'dataProcessor': 'Public Health Scotland', 'jurisdiction': 'GB-GBN', 'dataController': 'National Records Scotland', 'accessRights': ['https://www.informationgovernance.scot.nhs.uk/pbpphsc/', 'https://www.isdscotland.org/About-ISD/Information-Requests/', 'https://www.isdscotland.org/Products-and-Services/eDRIS/'], 'accessService': 'Scottish National Data Safe Haven (https://www.isdscotland.org/Products-and-Services/eDRIS/)', 'accessRequestCost': 'Research Projects - https://www.isdscotland.org/Products-and-Services/eDRIS/FAQ-eDRIS/index.asp#a4 ; Information Request Service - https://www.isdscotland.org/About-ISD/Information-Requests/'}, 'usage': {'dataUseLimitation': 'RESEARCH USE ONLY', 'isReferencedBy': ['https://doi.org/10.1093/ije/dyq118', 'https://doi.org/10.1080/13557858.2013.814764', 'https://doi.org/10.1093/ije/dyt237', 'http://dx.doi.org/10.1136/bmjopen-2012-001957', 'https://doi.org/10.1093/eurpub/cku059', 'https://doi.org/10.1093/alcalc/agw018', 'https://doi.org/10.1177/1741826711423217', 'http://dx.doi.org/10.1136/heartjnl-2011-301191', 'http://dx.doi.org/10.1136/bmjopen-2014-006120', 'http://dx.doi.org/10.1136/bmjopen-2013-003415'], 'dataUseRequirements': ['NOT FOR PROFIT USE', 'PROJECT SPECIFIC RESTRICTIONS', 'PUBLICATION REQUIRED'], 'investigations': ['https://www.ed.ac.uk/usher/scottish-health-ethnicity-linkage', 'https://sls.lscs.ac.uk/'], 'resourceCreator': 'National Records Scotland - Census Branch'}, 'formatAndStandards': {'vocabularyEncodingScheme': 'OTHER', 'conformsTo': 'OTHER', 'format': ['text/csv'], 'language': 'en'}}","{'temporal': {'distributionReleaseDate': '2011-03-27', 'timeLag': 'OTHER', 'accrualPeriodicity': 'OTHER', 'startDate': '2011-03-27', 'endDate': '2011-03-27'}, 'origin': {'source': ['ELECTRONIC SURVEY', 'PAPER BASED'], 'purpose': 'ADMINISTRATIVE', 'collectionSituation': 'HOME'}}",2021-02-03T13:27:49Z,"[{'observedNode': 'Persons', 'measuredValue': '3397207', 'disambiguatingDescription': 'All people aged 4 and over who are studying, or aged 16 to 74 in employment the week before the census', 'observationDate': '2011-03-21', 'measuredProperty': 'Count'}]",2.0.0,{'qualifiedRelation': ['Linked as part of the Scottish health & ethnicity study & as part of the Scottish Longitudinal Survey.']},2021-04-12T07:54:35Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 43, 'structuralMetadata.columnName': 43, 'structuralMetadata.columnDescription': 43, 'structuralMetadata.dataType': 43, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'da8c465d-144c-4e89-894a-8aa6c7e01852', 'name': 'census_2011', 'dataElementsCount': 43, 'dataElements': '46f10c0d-b9de-4466-863e-449e7fae6db5, 9ea11f9f-90db-4536-9651-1a2d1d741d48, 35113e7c-f363-4fc0-aa67-0a441ccc8ae9, eeab2b4f-c364-41a9-ba71-032982fa6972, 40903c7d-30e7-4ea4-be9e-9c92b236e792, 24a88e27-f697-4939-a2fc-898d7ba387eb, 831d25ea-d4da-47e7-9900-86afce022ad8, 2f12f031-2eec-4860-84c0-b01401f4842d, de42a991-c59a-42de-b0f4-69e64ae9a542, 39542c23-b3ea-4ba5-9e59-fac645bc7afa, 25d5dc99-dd97-4678-8646-60ae4fe4aacd, d68b0ab6-ec5f-4a39-88f0-6fc0842dac03, 9271b761-40b3-4d44-98b4-b3b94d2f13dc, 62f8c4d4-e1d0-445a-abd1-61360c8e20ec, 8530e403-b745-44c0-bab4-9284021d085f, def9265d-7865-465e-aad9-11c41e014311, 29f47f37-50d9-4f07-99ab-211c031acfe3, 122d616a-87d5-42ea-afef-2543f34740fd, 3aebc66d-8a88-4a28-868c-d0c97c2626d7, 78fd2ba5-a0f1-496e-8e29-167dbe71f83c, 9836212d-e799-46cc-be08-e7c9055d5103, 8bc1865c-2a0e-42b4-be72-47df21959adb, fb9894aa-15d4-40ee-9db2-b8006af6cf13, 8a1cd77d-18ae-4e7c-b7e5-2f5cbbb7a090, 3339bdf6-8208-41f8-84b8-0649ff15b09a, 1ba06710-5da2-4fb4-b402-37775569e5fe, fc34ea76-13fe-48ce-afab-aee10eb6bb1a, b79d5afd-3e69-49dd-9ae5-548c55093fe0, 25c56169-6231-4ca5-8c79-c539debea8a9, f9631ded-dc91-4a67-97a2-4f40cdc8b5ac, f80cb000-ea85-441d-ad69-6a0115b52e07, 71aa625e-afa9-4701-80d9-c116d28757dc, 15e52ab8-cb04-4c34-8f27-a1508315139b, acc0924a-8247-4171-8619-3d458a45c0e6, 359a9603-1699-4b93-8a27-17a5f4d76bd7, fa2a2da7-4436-4f89-a5f4-bfa2777d0311, b52cca41-f5a4-4a2b-9bdf-5eb0db9e42d6, 1f6e2f6a-b4cb-46d1-9219-e7ce0f20b0b7, 042a39bd-cd0b-4a84-8eaa-c3652f0a9ded, fc7ba577-114a-4f58-9139-77cd7352f06d, b8c84451-275d-4efe-85ac-4151e80f4a21, 34f291de-d6d6-4397-9569-956637bcffbf, 99574cca-1d1c-4da2-8b98-7e6ec489aae7'}]}"
"{'title': 'Diagnostic and Therapy Services Waiting Times (DATW)', 'publisher': {'identifier': '5f3f98068af2ef61552e1d75', 'name': 'SAIL', 'memberOf': 'ALLIANCE'}, 'keywords': ['Diagnostic', 'Therapy', 'Waiting Times', 'SAIL', 'core', 'DATW'], 'abstract': 'Waiting times for diagnostic scans and waiting times for access to therapy services.', 'contactPoint': 'SAILDatabank@swansea.ac.uk'}",97896866-ab5e-408a-ac5a-072802db9faf,"{'followup': 'OTHER', 'spatial': ['https://www.geonames.org/2634895/wales.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'All diagnostic and therapy pathways', 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'5.0.0': '30ca0f33-0644-4c92-afc3-357aad57b6ec', '6.0.0': 'c474492c-1c9d-4e94-bc85-270aab69a74d', 'latest': 'c474492c-1c9d-4e94-bc85-270aab69a74d'}","{'description': 'Capture waiting times for specified diagnostic and therapy services for the NHS in Wales.\n\nMonthly return of counts of waiting times for referrals to specified diagnostic and therapy services submitted by Local Health Boards.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/'], 'isPartOf': 'NOT APPLICABLE'}",c474492c-1c9d-4e94-bc85-270aab69a74d,https://web.www.healthdatagateway.org/dataset/c474492c-1c9d-4e94-bc85-270aab69a74d,"{'access': {'deliveryLeadTime': '2-6 MONTHS', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'dataController': 'SAIL Databank', 'dataProcessor': 'SAIL Databank', 'jurisdiction': ['GB'], 'accessRights': ['https://saildatabank.com/application-process/'], 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.']}, 'usage': {'resourceCreator': ['DHCW'], 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'RESEARCH SPECIFIC RESTRICTIONS']}, 'formatAndStandards': {'format': ['SQL database table'], 'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'language': ['en']}}","{'temporal': {'startDate': '2010-05-20', 'endDate': '2020-05-28', 'distributionReleaseDate': '2019-09-12', 'accrualPeriodicity': 'MONTHLY', 'timeLag': '2-6 MONTHS'}, 'origin': {'purpose': ['STUDY', 'DISEASE REGISTRY', 'ADMINISTRATIVE'], 'source': ['LIMS', 'OTHER'], 'collectionSituation': ['CLINIC', 'PRIMARY CARE', 'IN-PATIENTS']}}",2021-09-13T14:32:17Z,"[{'observedNode': 'PERSONS', 'measuredValue': '1743000', 'observationDate': '29/10/2020', 'measuredProperty': 'Count'}]",6.0.0,"{'tools': ['https://conceptlibrary.saildatabank.com/'], 'derivation': ['Not Available'], 'qualifiedRelation': ['Yes. 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"{'title': 'National Waiting List Open Pathways', 'abstract': 'Restoration of elective activity (Acute) - All open (incomplete) RTT & not current RTT pathways as at 23:59 on the Sunday of the reporting period.', 'publisher': {'name': 'DISCOVER NOW', 'memberOf': 'HUB', 'identifier': '607db9c3e1f9d3704d570cfa'}, 'contactPoint': 'researchers@registerfordiscover.org.uk', 'keywords': ['Waiting List', 'Waiting Times', 'Elective', 'Acute', 'acute care', 'acute hospitals', 'RTT', 'Referral to treatment', 'Referral', 'care pathways', 'pathways', 'RTT pathway', 'open pathways', 'Discover-NOW', 'Discover', 'Real World data', 'Real world data', 'Linked longitudinal', 'elective recovery']}",c7b1e328-f2d7-4d11-b38f-ce9930b95ca0,"{'spatial': ['https://www.geonames.org/2646895/hillingdon.html', 'https://www.geonames.org/2634341/city-of-westminster.html', 'https://www.geonames.org/3333157/royal-kensington-and-chelsea.html', 'https://www.geonames.org/3333151/harrow.html', 'https://www.geonames.org/3333132/brent.html', 'https://www.geonames.org/2650567/ealing.html', 'https://www.geonames.org/3333155/hounslow.html', 'https://www.geonames.org/3333149/hammersmith-and-fulham.html'], 'followup': '1 - 10 YEARS', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': ""The independent datasets don't show the full patient pathway. We can include other datasets (Clock Starts, Clock Stops and Diagnostics) in views to show the full patient pathway). This dataset contains all Incomplete Pathways using a patient pathway identifier to link to patient activity related to NWL patient population."", 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'c47f463f-6e7e-4abb-b9bc-010ae68156b7'},"{'description': 'Restoration of elective activity is one of the highest priorities for NHS England and NHS Improvement following the impact of the Covid-19 pandemic. Understanding the composition of the waiting list is critical to managing restoration within North West London. \n\nData will be collected via data submissions made by each individual provider of NHS Acute healthcare services in North West London. This dataset includes data from Imperial College Healthcare NHS Trust, Chelsea and Westminster NHS Foundation Trust, London North West Healthcare NHS Trust and The Hillingdon Hospital NHS Trust. Data will be processed under an Information Sharing Agreement between North West London CCG and each organisation. Data submissions will be processed and used for the following purposes:\n  1.  Developing a visual display of the waiting list composition (Elective Waiting List Data Dashboard).\n  2.  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"{'title': 'Child Health Systems Programme - 4-5 year review', 'publisher': {'identifier': '5f8992a97150a1b050be0712', 'memberOf': 'ALLIANCE', 'name': 'PUBLIC HEALTH SCOTLAND'}, 'contactPoint': 'phs.edris@phs.scot', 'abstract': 'The 4-5 year review form  is completed at around 4-5 years of age and is carried out by a health visitor.', 'keywords': ['Child Health']}",5844bde6-628d-4e76-bb56-3534e2728eb6,"{'typicalAgeRange': '0-4', 'spatial': ['https://www.geonames.org/2638360/scotland.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'edad1352-6dcb-4f9c-b3f3-c13509165c93', '6.0.0': 'c6859b1b-4d5b-46bd-8532-089cff743be7', '1.0.0': '36be101e-5928-4f3d-9123-c6b234242d75', '3.0.0': 'ce9025c9-cf30-420b-8edb-f6ca438b099f', '4.0.0': '995c0f8d-f5ef-470a-8ffe-6bdb956bdbc0', '5.0.0': 'c2ebe992-e9e8-4316-a565-20d312aa9ef7', '2.0.0': '394ffd3f-4566-4c93-bf3d-82e57240dbb6', 'latest': 'c6859b1b-4d5b-46bd-8532-089cff743be7'}","{'description': 'The 4-5 year review form is completed at around 4-5 years of age and is carried out by a health visitor. This review started in April 2017 and is offered to all children (implementation of this review may vary across Scotland). Examples of information collected include: development (social, behavioural, communication, gross motor, vision, hearing), physical measurements (height and weight) and diagnoses / issues (Read coded). Identification data such as name, address, GP etc. are also checked and updated.', 'isPartOf': 'Child Health Surveillance Programme (CHSP)', 'associatedMedia': ['https://www.isdscotland.org/Health-Topics/Child-Health/Child-Health-Programme/Child-Health-Systems-Programme-Pre-School.asp']}",c6859b1b-4d5b-46bd-8532-089cff743be7,https://web.www.healthdatagateway.org/dataset/c6859b1b-4d5b-46bd-8532-089cff743be7,"{'access': {'deliveryLeadTime': 'VARIABLE', 'dataController': 'Public Health Scotland', 'accessRequestCost': ['Research Projects - https://www.isdscotland.org/Products-and-Services/eDRIS/', 'Bespoke data analysis requests - https://publichealthscotland.scot/contact-us/bespoke-data-analysis-requests/'], 'accessService': 'Scottish National Data Safe Haven - https://www.isdscotland.org/Products-and-Services/eDRIS/', 'accessRights': ['https://www.informationgovernance.scot.nhs.uk/pbpphsc/', 'https://www.isdscotland.org/Products-and-Services/eDRIS/', 'https://publichealthscotland.scot/contact-us/bespoke-data-analysis-requests/'], 'dataProcessor': 'National Services Scotland', 'jurisdiction': ['GB-GBN']}, 'formatAndStandards': {'format': ['text/csv'], 'vocabularyEncodingScheme': ['OTHER'], 'conformsTo': ['OTHER'], 'language': ['en']}, 'usage': {'resourceCreator': ['National Services Scotland']}}","{'temporal': {'accrualPeriodicity': 'MONTHLY', 'timeLag': 'OTHER', 'startDate': '2017-04-01'}}",2020-01-10T22:06:55Z,[{}],6.0.0,,2021-11-04T10:24:42Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 6, 'structuralMetadata.tableName': 6, 'structuralMetadata.tableDescription': 6, 'structuralMetadata.dataElementsCount': 49, 'structuralMetadata.columnName': 49, 'structuralMetadata.columnDescription': 49, 'structuralMetadata.dataType': 49, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'e6dbda76-f84f-4dd0-9e27-3292ba91e37f', 'description': 'Issues / Issues Status / Read Coding.   Recall & Unscheduled reviews', 'name': 'Issues / Issues Status / Read Coding.   Recall & Unscheduled reviews', 'dataElementsCount': 10, 'dataElements': '60d1d7a4-ac43-46c7-af26-d21a2a985a6d, edaf2238-502a-4fc7-9409-4990cc06d75f, 62cb0b32-2a25-4042-984c-d2b2c6447173, 0fc55404-00ff-4271-9bd6-ed868e45596f, 48535f01-fe24-4b44-b8b9-292938c8a4b8, 5ca1a315-12e6-4988-92ef-9f4bf544dcd1, 30a36f9e-6681-4272-a8c8-333ae90a9c66, 703b9738-7e4a-4641-b97b-29a7a006c9e9, 4967a20e-e79d-449a-af8a-246ca62ecfd7, 60ccdf66-7323-4ed9-824a-52ec6b68bcc6'}, {'id': 'e92200e8-1b7e-4c04-b357-997d9dc861a0', 'description': 'Childsmile / Dental', 'name': 'Childsmile / Dental', 'dataElementsCount': 4, 'dataElements': '6208dc27-7f42-4fc9-b75a-95db565e9c20, 4629417d-3a12-44b7-8061-2ce9f6ca62c2, 583217c5-5c18-482d-81c7-3d2c6590db49, a23b30d0-74e3-45bb-8902-1209dfced6ff'}, {'id': 'a2420abd-fcec-4a46-97f1-c5361b30c3e6', 'description': 'Demographic / Birth details', 'name': 'Demographic / Birth details', 'dataElementsCount': 16, 'dataElements': 'bbf29db2-2be8-47d8-a74b-88461fd7e510, cf136197-49c0-4bae-aa06-7befb61674db, 14b2cdbe-2c9b-4dd3-b59a-c69175aeec17, 5291ad9a-1cb5-470e-9bcf-4939e11a550d, a0078bb9-50b3-4040-9fbd-7ebaeeaaad17, c7c24661-d6ab-44f0-aeec-aa77b4415408, 37828b94-71cf-4ef6-9004-7b8bdaab64a4, fd05547e-f36b-4de3-b8cf-015e442f5404, 44768637-6d52-471b-9b55-661934ccf458, dbaade3c-6b05-49eb-b163-2ea255398379, 883aced2-f227-48a4-a67d-6c23aec82dff, 76b23a4a-9a15-44ee-b25c-ab39a77b6aa3, c7b35a35-2cb1-451b-8bed-24cc8c045061, efd6f4e9-984e-49b1-b249-b970062fd004, ec7ec142-8321-432b-aa95-74a3accb4642, c849cba6-1f3c-435b-9d77-d73329b130e1'}, {'id': 'c6c76cfe-d6d0-454c-8a02-f1c75d17f768', 'description': 'Future Action', 'name': 'Future Action', 'dataElementsCount': 4, 'dataElements': 'd4f4780c-85d8-4228-8644-0c03e1d28ea2, 1b28c24d-85aa-4bb7-9b09-b58de208dd58, 9a2861a1-39c7-4eb2-bf63-f133d28b4b70, 119e7d69-e3df-411d-afbe-c72d17d741ae'}, {'id': 'b90be2c7-fd88-4bfe-9a02-a6e9b972b734', 'description': 'Developmental / ASQ Scores / Tools', 'name': 'Developmental / ASQ Scores / Tools', 'dataElementsCount': 7, 'dataElements': '25f1389e-ea32-4344-82b7-456fa30d22c6, 2e68cf62-3493-4e76-95ff-a93f10976e8b, e131e0ec-2766-4033-87f5-ff85ce151117, 707d6887-0496-4c15-8dfb-17d8a2fc1415, 4ca49ad4-8285-4743-843b-cfc76b0b8ab5, 7ce55089-cffc-4080-846d-d2a44dac443a, f7e20a44-8577-4d29-a24f-367737775b46'}, {'id': 'f1ac882b-cf3d-4ad3-b9b1-fd9b37d4dc39', 'description': 'Health Plan Indicator / Support Needs Status / Parental Consent', 'name': 'Health Plan Indicator / Support Needs Status / Parental Consent', 'dataElementsCount': 8, 'dataElements': 'cf21609e-7d4a-4f4a-9a79-2dd0649479b8, d584abe2-b312-425f-8736-e7ec43983fb6, 6aaea3d7-5fd0-431e-a7c9-5d022a34aadc, b1c87803-856c-4f75-987d-67e342d4c9c8, 7f881cba-7d35-487f-ab82-7bb0717df0fd, 094b0d6a-464e-49c9-872d-63651c19036d, 98c9abdf-0961-44b4-8375-861ce0345652, 94963023-5ed8-4c6f-88dd-0dfa1e7e0916'}]}"
"{'title': 'Exogenous sex steroid hormones and asthma in females of reproductive age', 'publisher': {'name': 'BREATHE', 'memberOf': 'HUB', 'contactPoint': 'SAILDatabank@swansea.ac.uk'}, 'doiName': 'https://doi.org/10.1016/j.jaci.2020.02.027', 'contactPoint': 'bright.nwaru@gu.se', 'abstract': 'Exogenous sex steroid hormones and asthma in females of reproductive age: a population-based prospective cohort study using the Optimum Patient Care Research Database (OPCRD)', 'keywords': ['Asthma', ' cohort study', ' estrogen', ' females', ' hormonal contraception', ' incidence', ' progesterone', ' sex hormones.']}",bc5d6d69-ec03-42fe-a63b-638c25c5258c,"{'spatial': 'https://www.geonames.org/countries/GB/united-kingdom.html', 'typicalAgeRange': '16-45'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'c6e2fffb-4817-462e-ba7e-ff546728f3d1'},"{'description': '<p>Background: Despite well-described sex differences in asthma incidence, there remains uncertainty about the role of female sex hormones in the development of asthma. Objective: We sought to investigate whether hormonal contraceptive use, its subtypes, and duration of use were associated with new-onset asthma in reproductive-age women. Methods: Using the Optimum Patient Care Research Database, a UK national primary care database, we constructed an open cohort of 16- to 45-year-old women (N = 564,896) followed for up to 17 years (ie, January 1, 2000, to December 31, 2016). We fitted multilevel Cox regression models to analyze the data. Results: At baseline, 26% of women were using any hormonal contraceptives. During follow-up (3,597,146 person-years), 25,288 women developed asthma, an incidence rate of 7.0 (95% CI, 6.9-7.1) per 1000 person-years. Compared with nonuse, previous use of any hormonal contraceptives (hazard ratio [HR], 0.70; 95% CI, 0.68-0.72), combined (HR, 0.70; 95% CI, 0.68-0.72), and progestogen-only therapy (HR, 0.70; 95% CI, 0.67-0.74) was associated with reduced risk of new-onset asthma. For current use, the estimates were as follows: any (HR, 0.63; 95% CI, 0.61-0.65), combined (HR, 0.65; 95% CI, 0.62-0.67), and progestogen-only therapy (HR, 0.59; 95% CI, 0.56-0.62). Longer duration of use (1-2 years: HR, 0.83; 95% CI, 0.81-0.86; 3-4 years: HR, 0.64; 95% CI, 0.61-0.67; 5+ years: HR, 0.46; 95% CI, 0.44-0.49) was associated with a lower risk of asthma onset than nonuse. Conclusions: Hormonal contraceptive use was associated with reduced risk of new-onset asthma in women of reproductive age. Mechanistic investigations to uncover the biological processes for these observations are required. Clinical trials investigating the safety and effectiveness of hormonal contraceptives for primary prevention of asthma will be helpful to confirm these results. </p>\n\nFor more information, please see: https://pubmed.ncbi.nlm.nih.gov/32305347/?from_term=Nwaru+bi&from_sort=date&from_pos=2', 'isPartOf': 'AUCKAR'}",c6e2fffb-4817-462e-ba7e-ff546728f3d1,https://web.www.healthdatagateway.org/dataset/c6e2fffb-4817-462e-ba7e-ff546728f3d1,"{'access': {'deliveryLeadTime': 'VARIABLE', 'accessService': 'To be determined upon data access request', 'dataController': 'BREATHE', 'jurisdiction': ['GB-ENG', 'GB-SCT', 'GB-WLS'], 'dataProcessor': 'NOT APPLICABLE', 'accessRights': ['To be determined upon data access request']}, 'usage': {'isReferencedBy': ['https://pubmed.ncbi.nlm.nih.gov/32305347/?from_term=Nwaru+bi&from_sort=date&from_pos=2'], 'dataUseLimitation': 'GENERAL RESEARCH USE', 'resourceCreator': 'Dr Bright I Nwaru'}, 'formatAndStandards': {'conformsTo': 'LOCAL', 'vocabularyEncodingScheme': 'LOCAL', 'language': 'en'}}","{'temporal': {'endDate': '2016-12-31', 'startDate': '2000-01-01'}, 'origin': {'purpose': 'STUDY', 'collectionSituation': 'OTHER'}}",2021-04-09T15:35:20Z,,0.0.1,{'qualifiedRelation': ['https://web.www.healthdatagateway.org/dataset/ae4b8371-d037-46e8-bdcd-bf3de08ef38e']},2021-04-09T15:32:14Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'SCOT translational sample collection', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY', 'contactPoint': 'clare.orange@ggc.scot.nhs.uk'}, 'contactPoint': 'clare.orange@ggc.scot.nhs.uk', 'doiName': 'Not Available', 'abstract': 'Collection of samples and data across the following diseases: Malignant tumour of colon', 'keywords': ['Translational', 'Sample collection', 'UKCRC Tissue Directory', 'SCOT', 'Malignant tumour of colon']}",b3b790a7-a455-4efb-9c68-60e7131cb836,"{'physicalSampleAvailability': ['IN PROGRESS'], 'typicalAgeRange': 'Not Known', 'spatial': 'Scotland'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'a661d474-136a-442b-8f75-04c3ecc1a8ae', '3.0.0': 'c78122ae-8be1-40d7-8567-b83059941c16', '1.0.0': '4d00484e-c253-4b99-94b8-c438b708837e', '2.0.0': '85b25afd-73a6-4455-9098-1f906bc7738d', 'latest': 'c78122ae-8be1-40d7-8567-b83059941c16'}","{'description': 'The SCOT study  enrolled more than 6000 patients over a 5 year period and is the largest single trial ever conducted in CRC. Tissues collected from patients entered in to the study are physically hosted in two sites; blood samples and blood fractions e.g. DNA, are held at the University of Oxford and FFPE samples are housed at the Glasgow Biobank. There are approximately 3000 blood and 3000 tissue samples in the collection.\nThe associated clinical data is held by the Cancer Research UK Clinical Trials Unit, Glasgow.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",c78122ae-8be1-40d7-8567-b83059941c16,https://web.www.healthdatagateway.org/dataset/c78122ae-8be1-40d7-8567-b83059941c16,"{'access': {'jurisdiction': 'GB-SCT', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'dataProcessor': 'Not Applicable', 'dataController': 'University of Glasgow', 'accessRequestCost': 'Not specified'}, 'formatAndStandards': {'conformsTo': ['NULL'], 'format': ['In Progress'], 'vocabularyEncodingScheme': ['NULL'], 'language': ['en']}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'distributionReleaseDate': '2019-09-17', 'startDate': '2008-01-01'}}",2020-01-13T17:16:39Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:13:09Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'UHB Linked Diabetic Eye Disease in Acute Diabetic Hospital Admissions', 'contactPoint': 'enquiries@insight.hdrhub.org', 'publisher': {'name': 'INSIGHT', 'identifier': '5f8437a3b7dec2a83e8cceba', 'memberOf': 'HUB'}, 'keywords': ['Background Diabetic Retinopathy', 'Digital Surveillance', 'Clinically Significant Macular Oedema', 'Diabetic Retinopathy', 'Diabetic Maculopathy', 'Diabetes Mellitus Type 1', 'Diabetes Mellitus Type 2', 'National Screening Grading', 'Gestational Diabetes', 'Haemorrhage', 'Hospital Eye Service', 'Images', 'Microaneurysm', 'Non-Proliferative Diabetic Retinopathy', 'New Vessels', 'Proliferative Diabetic Retinopathy', 'Optical Coherence Tomography', 'Pregnancy', 'Retina', 'Referral', 'Screening', 'Screening Programme', 'Vision', 'Visual Acuity', 'Hypoglycaemia', 'Hyperglycaemia', 'Diabetic Ketoacidosis', 'Hyperosmolar Hyperglycaemic Status', 'Diabetic Coma', 'Acidosis', 'Insulin', 'Injection', 'Pump', 'Blood Glucose', 'Fasting Blood Glucose', 'Dialysis', 'Glucagon', 'Glucose Intolerance', 'Haemoglobin A1C', 'Glycated Haemoglobin Test', 'Insulin Resistance', 'Macrovascular Compilations', 'Microvascular Complications', 'Pancreas', 'Pre-Diabetes', 'Autoimmune Disease', 'Sulfonylurea', 'Metformin', 'Glp-1 Inhibitors', 'Glp-1', 'Infection', 'Incretin Mimetics', 'Dpp-4 Inhibitors', 'Gliptins', 'Alpha Glucosidase Inhibitors', 'Glitazones', 'Diabetic Ulcer', 'Foot', 'Eye', 'Kidney', 'Brain', 'Nerves', 'Sepsis', 'Hospitalised', 'Urgent Care', 'Acute Care', 'Emergency', 'Surgery', 'Procedures', 'Outcomes', 'Discharge', 'Death', 'Secondary Care', 'Tertiary Care'], 'abstract': 'Eye data for those identified by having an ED admission and acute care for their diabetes at QE Hospital, Birmingham. Key data included are demographics, duration of diabetes, outcomes, comorbidities, national screening diabetic grade and visual data.'}",865c99c4-bbe9-45de-83b9-290fb54d5470,"{'pathway': 'This dataset is representative of the patient pathway for community screening of diabetic eye\xa0disease and grading.\xa0 This DES dataset is linked within this diabetic emergency hospital dataset to include those patients who\xa0were subsequently admitted to the Queen Elizabeth Hospital, University\xa0Hospitals Birmingham\xa0NHS Trust for complications of their diabetes.\xa0 This limits the dataset to only those patients who have been seen both in primary care screening and then subsequently in the hospital for diabetes.', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/11591953/west-midlands.html'], 'typicalAgeRange': '12-150', 'followup': '> 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'c8654ef8-585c-4ac4-ac0e-33a875d407a1'},"{'description': 'Background:\nDiabetes mellitus affects over 3.9 million people in the United Kingdom (UK), with over 2.6 million people in England alone. More than 1 million people living with diabetes are acutely admitted to hospital due to complications of their illness every year. Complications include Diabetic emergencies such as Diabetic Comas, Hypoglycaemia, Diabetic ketoacidosis and Diabetic Hyperosmolar Hyperglycaemic State. Diabetic retinopathy (DR) is a common microvascular complication of type 1 and type 2 diabetes and remains a major cause of vision loss and blindness in those of working age. This dataset includes acute all diabetic admissions to University Hospitals Birmingham NHS Trust from 2000 onwards with linked eye data including the national screening diabetic grade category (seven categories from R0M0 to R3M1) from the Birmingham, Solihull and Black Country DR screening program (a member of the National Health Service (NHS) Diabetic Eye Screening Programme) and the University Hospitals Birmingham NHS Trust Ophthalmology clinic at Queen Elizabeth Hospital, Birmingham .  \n\nGeography:\nThe West Midlands has a population of 5.9 million. The region includes a diverse ethnic, and socio-economic mix, with a higher than UK average of minority ethnic groups. It has a large number of elderly residents but is the youngest population in the UK. There are particularly high rates of diabetes, physical inactivity, obesity, and smoking.\n\nData sources:  \n1. The Birmingham, Solihull and Black Country Data Set, University Hospitals Birmingham NHS Foundation Trust, Birmingham, United Kingdom. They manage over 200,000 diabetic patients, with longitudinal follow-up up to 15 years, making this the largest urban diabetic eye screening scheme in Europe. \n2. The Electronic Health Records held at University Hospitals Birmingham NHS Foundation Trust is one of the largest NHS Trusts in England, providing direct acute services and specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds and 100 ITU beds. UHB runs a fully electronic healthcare record both for systemic disease as well as the Ophthalmology records.\n\nScope: \nAll hospitalised patients admitted to UHB with a diabetes related health concern from 2000 onwards. Longitudinal and individually linked with their diabetic eye care from primary screening data and secondary care ophthalmology data including \n• Demographic information (including age, sex and ethnicity)\n• Diabetes status\n• Diabetes type\n• Length of time since diagnosis of diabetes \n• Visual acuity\n• The national screening diabetic screening grade category (seven categories from R0M0 to R3M1)\n• Diabetic eye clinical features\n• Reason for sight and severe sight impairment\n• ICD-10 and SNOMED-CT codes pertaining to diabetes\n• Diagnosis for the acute/emergency admission\n• Co-morbid conditions\n• Medications\n• Outcome', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://www.insight.hdrhub.org/about-us']}",c8654ef8-585c-4ac4-ac0e-33a875d407a1,https://web.www.healthdatagateway.org/dataset/c8654ef8-585c-4ac4-ac0e-33a875d407a1,"{'usage': {'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'isReferencedBy': ['Not available'], 'resourceCreator': ['University Hospitals Birmingham NHS Foundation Trust'], 'investigations': ['']}, 'access': {'accessRights': ['https://www.insight.hdrhub.org/'], 'accessRequestCost': ['https://www.insight.hdrhub.org/'], 'deliveryLeadTime': '2-6 MONTHS', 'jurisdiction': ['GB-ENG', 'GB-GB'], 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'dataProcessor': 'Not Applicable', 'accessService': 'INSIGHT adheres to HDRUK data access principles including the five SAFES; anonymised data is provided into an agreed Trusted Research Environment such as the PIONEER Microsoft Azure TRE at University Hospitals Birmingham NHSFT or equivalent external safe environment, under data license.'}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'format': ['SQL, CSV'], 'language': ['en'], 'vocabularyEncodingScheme': ['NHS NATIONAL CODES']}}","{'origin': {'source': ['EPR'], 'collectionSituation': ['OUTPATIENTS', 'IN-PATIENTS', 'CLINIC', 'ACCIDENT AND EMERGENCY'], 'purpose': ['CARE']}, 'temporal': {'endDate': '2021-08-17', 'distributionReleaseDate': '2021-08-17', 'startDate': '2000-01-01', 'timeLag': '2-4 WEEKS', 'accrualPeriodicity': 'ANNUAL'}}",2021-10-22T14:35:01Z,"[{'observedNode': 'EVENTS', 'measuredValue': '30105', 'disambiguatingDescription': 'Not applicable', 'observationDate': '17/08/2021', 'measuredProperty': 'Count'}]",1.0.0,"{'qualifiedRelation': ['None'], 'tools': ['https://www.gov.uk/government/publications/diabetic-eye-screening-retinal-image-grading-criteria'], 'derivation': ['Not Available']}",2021-10-22T14:35:01Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 19, 'structuralMetadata.tableName': 19, 'structuralMetadata.tableDescription': 19, 'structuralMetadata.dataElementsCount': 236, 'structuralMetadata.columnName': 236, 'structuralMetadata.columnDescription': 236, 'structuralMetadata.dataType': 236, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'e89ca1a0-63f0-4997-b1df-325a1146d82d', 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The HBS is funded by the BSO and the Department of Health (DoH). The authors alone are responsible for the interpretation of the data and any views or opinions presented are solely those of the author and do not necessarily represent those of the BSO.'""], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['ICD10'], 'language': ['en'], 'conformsTo': ['LOCAL'], 'format': ['text', 'csv']}}","{'origin': {'collectionSituation': ['IN-PATIENTS'], 'purpose': ['ADMINISTRATIVE'], 'source': ['OTHER']}, 'temporal': {'timeLag': '2-6 MONTHS', 'startDate': '2005-01-01', 'accrualPeriodicity': 'IRREGULAR'}}",2020-10-14T10:34:22Z,"[{'observedNode': 'EVENTS', 'measuredValue': '1', 'observationDate': '21/05/2021', 'measuredProperty': 'Count', 'disambiguatingDescription': 'Count of discrete episodes of inpatient stays'}]",7.0.0,"{'derivation': ['Not known'], 'qualifiedRelation': ['Enhanced Prescribing Database']}",2021-09-02T11:48:44Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 2, 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"{'title': 'HES Accident and Emergency data for CPRD Aurum', 'abstract': 'CPRD Aurum linked Hospital Episode Statistics Accident and Emergency (HES A&E) data contain records of care administered in the NHS accident and emergency setting in England, including dates, referral sources, diagnoses and treatments.', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c2e1f9d3704d570cee', 'name': 'CPRD'}, 'doiName': 'https://doi.org/10.48329/2qy5-xx60', 'contactPoint': 'enquiries@cprd.com', 'keywords': ['Emergency', 'Accident', 'HES', 'A&E']}",c43501ec-08b4-4d33-a7dd-d19fca821925,"{'typicalAgeRange': '0-115', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': '1 - 10 YEARS', 'pathway': 'Secondary care', 'spatial': ['https://www.geonames.org/6269131/england.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '20ffb872-6df3-4f1c-9bd0-3ce67d34b056', '5.0.0': 'c8f36174-aaa7-4388-bea9-48fffb2c441c', '4.0.0': '65481fcf-cc98-44f0-bcfe-c21bcb8db0f5', '3.0.0': '0e59698c-1532-4155-ab0e-af11b3d9e7b1', '1.0.0': '0df56bc5-cae2-4f6c-a896-84c33a7271e1', '0.0.1': '886e254d-b047-4753-8ace-cbaf436762c5', 'latest': 'c8f36174-aaa7-4388-bea9-48fffb2c441c'}","{'description': 'CPRD Aurum linked Hospital Episode Statistics Accident and Emergency (HES A&E) data consists of individual records of patient care administered in the accident and emergency setting in England. 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"{'title': 'Emergency Department Dataset Daily (EDDD)', 'abstract': 'Daily version of Emergency Department Dataset.', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'SAIL', 'identifier': '5f3f98068af2ef61552e1d75'}, 'keywords': ['Emergency', 'A&E', 'SAIL', 'NCS', 'project-specific', 'EDDD']}",fa257aa8-51fc-4eb7-a448-e473fa54686d,"{'spatial': ['https://www.geonames.org/2634895/wales.html'], 'typicalAgeRange': '0-150', 'followup': 'OTHER', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Secondary care'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'8.0.0': 'd0258a87-95e1-418f-87bd-49fa61805054', '10.0.0': 'c9322345-9fe2-404e-8dcb-0b4d8856459b', '9.0.0': '24562202-5f76-4ada-9495-2260e3e7c42f', 'latest': 'c9322345-9fe2-404e-8dcb-0b4d8856459b'}","{'description': 'Administrative and clinical information for all NHS Wales Accident and Emergency department attendances. 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"{'title': 'CPRD Aurum', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c2e1f9d3704d570cee', 'name': 'CPRD'}, 'abstract': 'CPRD Aurum contains primary care data contributed by GP practices using EMIS Web® including patient registration information and all care events that GPs have chosen to record as part of their usual medical practice.', 'keywords': ['CPRD Aurum', 'Primary care'], 'contactPoint': 'enquiries@cprd.com', 'doiName': 'https://doi.org/10.48329/gcgx-f815'}",1d574c14-1af0-490d-9c4e-be88cfd0e345,"{'pathway': 'Primary care', 'typicalAgeRange': '0-150', 'spatial': ['https://www.geonames.org/countries/GB/united-kingdom.html'], 'followup': '1 - 10 YEARS', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '7b1abb14-be0b-43f5-85cc-0cd9e54c987b', '5.0.0': 'c9c2f711-00a0-4b5a-abf8-2d1353d7cd67', '1.0.0': '73591435-21a9-4162-aa63-8461649ffbb6', '3.0.0': '1e61d0a3-5867-4865-8056-f26afacb1f05', '2.0.0': 'ef42201e-deb1-4675-896a-8a0162fe52a8', '4.0.0': 'bac86432-1ad7-4ff9-903d-26e28bf4ef97', 'latest': 'c9c2f711-00a0-4b5a-abf8-2d1353d7cd67'}","{'description': 'CPRD Aurum contains primary care data contributed by GP practices using EMIS Web® including patient registration information and all care events that GPs have chosen to record as part of their usual medical practice.', 'isPartOf': 'CPRD Aurum', 'associatedMedia': ['https://www.cprd.com/primary-care']}",c9c2f711-00a0-4b5a-abf8-2d1353d7cd67,https://web.www.healthdatagateway.org/dataset/c9c2f711-00a0-4b5a-abf8-2d1353d7cd67,"{'access': {'dataController': 'Clinical Practice Research Datalink', 'deliveryLeadTime': 'VARIABLE', 'accessRequestCost': ['https://www.cprd.com/pricing'], 'accessRights': ['HTTPS://CPRD.COM/DATA-ACCESS'], 'accessService': 'Access to CPRD data, including UK Primary Care Data, and linked data such as Hospital Episode Statistics, is subject to protocol approval via CPRD’s Research Data Governance (RDG) Process. Independent scientific and patient advice is provided by Expert Review Committees (ERCs) and the Central Advisory Committee (CAC): https://www.cprd.com/research-applications', 'dataProcessor': 'CPRD', 'jurisdiction': ['GB-GBN']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE', 'NO GENERAL METHODS RESEARCH', 'NO LINKAGE', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'resourceCreator': ['CPRD'], 'isReferencedBy': ['CPRD Aurum Data Resource Profile: https://academic.oup.com/ije/advance-article/doi/10.1093/ije/dyz034/5374844', 'Bibliography: https://cprd.com/bibliography', 'Using patient data citation: https://understandingpatientdata.org.uk/data-citation'], 'investigations': ['https://www.cprd.com/protocol-list'], 'dataUseRequirements': ['GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION']}, 'formatAndStandards': {'format': ['Tab delimited text'], 'conformsTo': ['NHS DATA DICTIONARY'], 'language': ['en'], 'vocabularyEncodingScheme': ['SNOMED CT']}}","{'temporal': {'accrualPeriodicity': 'MONTHLY', 'startDate': '1987-01-01', 'timeLag': '2-4 WEEKS', 'distributionReleaseDate': '2022-02-07', 'endDate': '2022-02-07'}, 'origin': {'collectionSituation': ['PRIMARY CARE'], 'source': ['EPR'], 'purpose': ['CARE']}}",2020-01-10T18:12:18Z,"[{'observedNode': 'PERSONS', 'measuredValue': 40933535, 'disambiguatingDescription': 'Total number of research acceptable patients in CPRD Aurum February 2022 version', 'observationDate': '07/02/2022', 'measuredProperty': 'Count'}]",5.0.0,"{'derivation': ['N/A'], 'qualifiedRelation': ['CPRD Aurum SGSS', 'CPRD Aurum CHESS', 'CPRD Aurum ICNARC', 'Death Registration data for CPRD Aurum', 'HES Admitted Patient Care data for CPRD Aurum', 'HES Outpatient data for CPRD Aurum', 'HES Accident and Emergency data for CPRD Aurum', 'HES Diagnostic Imaging Dataset for CPRD Aurum', 'Patient postcode linked deprivation measures for CPRD Aurum', 'Practice postcode linked deprivation measures for CPRD Aurum', 'Rural-Urban classification for CPRD Aurum', 'Cancer registration data for CPRD Aurum', 'National Radiotherapy Dataset (RTDS) for CPRD Aurum,Systemic Anti-Cancer Treatment (SACT) data for CPRD Aurum', 'Mental Health Dataset (MHDS) for CPRD Aurum'], 'tools': ['[]']}",2022-02-18T11:56:42Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 10, 'structuralMetadata.tableName': 10, 'structuralMetadata.tableDescription': 10, 'structuralMetadata.dataElementsCount': 88, 'structuralMetadata.columnName': 88, 'structuralMetadata.columnDescription': 88, 'structuralMetadata.dataType': 88, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '4a5c23d6-811d-4844-93e0-1f4744ccb370', 'description': 'The Practice tablecontains details of each practice, including the practice identifier, practice region, and the last collection date.', 'name': 'Practice', 'dataElementsCount': 3, 'dataElements': '5d68cf15-e7e0-4a94-977e-051673e99f5f, a3633e9f-3780-42b7-8282-d1023e23c94a, 56d689de-9c4e-48e4-8dfe-6b4e2df859b5'}, {'id': '043c555c-45a4-432e-9073-1e21b9a1da22', 'description': 'The Observation table contains the medical history data entered on the GP system including symptoms, clinical measurements, laboratory test results, and diagnoses, as well as demographic information recorded as a clinical code (e.g. patient ethnicity). Observations that occur during a consultation can be linked via the consultation identifier. CPRD Aurum data are structured in a long format (multiple rows per subject), and observations can be linked to a parent observation. 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Data in the referral file are linked to the observation file and contain ‘add-on’ data for referral-type observations. These files contain information involving both inbound and outbound patient referrals to or from external care centres (normally to secondary care locations such as hospitals for inpatient or outpatient care). To obtain the full referral record (including reason for the referral and date), referrals should be linked to the Observation file using the observation identifier (obsid).', 'name': 'Referral', 'dataElementsCount': 6, 'dataElements': 'edee775e-501f-4de9-a06d-641b59fbdb23, 1620e7be-8bd7-4fec-8fa3-54b8388bb907, 5f76e658-f7ed-4f70-9b1f-ce871c6dde57, 95bf723f-e43e-4e79-b837-e114d6b47532, 92974a35-cfd7-4a01-9fe9-07c83577efa2, 267fc66e-9af1-4b59-8946-d3256e7f9990'}, {'id': '5538424d-66eb-41cb-a75c-c177ae52bc19', 'description': 'The Product Dictionary table contains information on drug and appliance prescriptions recorded in EMIS Web®. This information is coded using the Dictionary of Medicines and Devices (DM+D).', 'name': 'Product Dictionary', 'dataElementsCount': 9, 'dataElements': 'aed7bf08-893d-4d5f-a877-fba1bbd4a901, df6cfb01-2dca-4f92-addf-c22e895e8e64, 85ec5996-771a-4383-92bf-984e8df8b560, 93aaedb4-6196-4486-a01c-ebded00e8884, 780028b4-a304-457f-80fb-f20e336d2f89, 3f796d91-3bb2-4474-ab26-115ad30a7fb1, cc064cea-549d-434a-a2c9-84e919205b94, ad714aaa-4399-4107-93a9-796286ab620b, 6c10d4fc-47e2-4f1e-941e-0e90364ec198'}, {'id': '902474db-fe32-4080-9a2a-9cb1ebd623e1', 'description': 'The Problem table contains details of the patient’s medical history that have been defined by the GP as a ‘problem’. Data in the problem file are linked to the observation file and contain ‘add-on’ data for problem-type observations. Information on identifying associated problems, the significance of the problem and its expected duration can be found in this table. GPs may use ‘problems’ to manage chronic conditions as it would allow them to group clinical events (including drug prescriptions, measurements, symptom recording) by problem rather than chronologically. To obtain the full problem record (including the clinical code for the problem), problems should be linked to the Observation file using the observation identifier (obsid).', 'name': 'Problem', 'dataElementsCount': 11, 'dataElements': '627920ed-75ee-447a-bd42-a4dd71795895, 82cabecf-5f57-41a7-a244-ebc0d271fa35, 7823b661-338f-4cca-8328-ad9904f11d8a, 77351981-7741-4bd3-897a-05ab60ecb7ba, ef795333-166b-48d6-971b-cc1af0c3957e, bae07e7f-6763-4338-968d-591f907c8e62, 3ad45ab6-833e-458d-b876-5f0c84826c3f, cacc20af-f34e-4c3a-87ef-b979192a153b, 1d37c057-1607-4660-a847-5a794a8b5b26, 19999402-934d-4a64-89a0-276431887376, 4063cc7c-6070-4e28-bb01-6fca053a4ca6'}, {'id': '725a7126-0b32-4c52-9f2f-181d9cc9b6de', 'description': 'The Staff table contains practice staff details for each staff member, including job category.', 'name': 'Staff', 'dataElementsCount': 3, 'dataElements': '91344e99-ae54-42e6-a508-13ea629cc85b, df40ae44-14e5-419a-9978-ef8c916f783d, c7b795cd-815d-425d-a549-6b426b8993d0'}, {'id': '9416af6b-4450-40e3-8360-e2f96c30f930', 'description': 'The Consultation table contains information relating to the type of consultation as entered by the GP (e.g. telephone, home visit, practice visit). Some consultations are linked to observations that occur during the consultation via the consultation identifier (consid).', 'name': 'Consultation', 'dataElementsCount': 8, 'dataElements': 'e361df34-01e9-4d4b-b74d-119b908d1047, d5548e5b-53e7-454e-a54f-10576599d68e, cc4c2373-4ffb-439f-9435-6b85ea5ac4d7, 300c6361-02ae-40b1-95cb-b96b847dc073, 350c4d72-8957-4678-adf6-ae6912e4d703, d81d7407-b152-4498-bf97-74dc4fa0b173, 52567b82-3552-4194-a79c-11a0f4010a7d, fd1f83e5-34ea-435d-a34a-5939de59433a'}, {'id': 'ec19b8c2-18fd-4b46-98db-48486eb9f757', 'description': 'The Medical Dictionary table contains information on all medical history observations that have been recorded in EMIS Web®. Observations are coded using a combination of SNOMED, Read and local EMIS® codes.', 'name': 'Medical Dictionary', 'dataElementsCount': 7, 'dataElements': 'ff83858c-1d5f-41f1-933e-b0293fdcc9ea, a044e040-dcc0-4c9a-9ce3-d560743abc9a, 9df2e8b8-429f-4459-9b22-f24f400a7369, 0e358591-042e-4e48-9ab7-26c57d14f67d, c62dbff0-a366-4866-8a8a-82fbc8bedfb4, e0c84dcb-94d5-4ab6-9380-a53a509dd439, 4e24bfc0-fb07-4bc3-87f1-6d07953c4b51'}, {'id': '0b4bed20-e0c0-43a2-aa39-5a463bb38138', 'description': 'The Drug issue table contains details of all prescriptions on the GP system. This file contains data relating to all prescriptions (for drugs and appliances) issued by the GP. Some prescriptions are linked to problem-type observations via the Observation file, using the observation identifier (obsid).', 'name': 'Drug issue', 'dataElementsCount': 14, 'dataElements': '78bb7eda-95ab-4d7d-9d0f-34f0fd42afff, 69fa8d6f-f364-44ff-8c2a-ebc046542306, 8720f3b2-cba1-4ce8-8b1c-634a58cf95a7, 94a6fe44-1a83-4a32-99b7-142b63ce72c1, 6393b45f-50ed-4707-b056-5a34c153c42f, 5a308a85-1b3d-4b37-8112-b784ac16ab84, 9b3da2f7-39a6-4339-9452-5a02f9209a34, bc484cbb-273d-467c-a48a-29b2e25e51d4, d5301da4-837d-44d0-988d-6cd8f964d4e7, 3e81fac7-55a7-473e-ad33-b99db8106bff, 6d59952e-9aae-43bc-890a-c828d08d3a98, 8ebacb21-57a8-4967-a11f-e0d2b15585c3, 5070ea17-e351-4524-97a7-a16629b165f6, 782573c3-025b-4e41-b2fe-3b76e2ddea98'}]}"
"{'title': 'Secondary Uses Services Payment By Results', 'publisher': {'contactPoint': 'enquiries@nhsdigital.nhs.uk', 'memberOf': 'ALLIANCE', 'name': 'NHS DIGITAL'}, 'abstract': 'The Secondary Uses Service (SUS +) is a collection of health care data required by hospitals and used for planning health care, supporting payments, commissioning policy development and research.', 'keywords': ['DIGITRIALS', 'SUS', 'NCS', 'SUS+', 'PbR', 'NATIONAL TARIFF', 'CDS', 'COMMISSIONING DATA SETS', 'National Core Study', 'COVID-19'], 'contactPoint': 'enquiries@nhsdigital.nhs.uk'}",2004c512-f7c9-4995-b820-55f36aa3fad2,"{'pathway': 'Secondary Care', 'followup': 'UNKNOWN', 'spatial': 'England', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'8.0.0': '2259bbdf-86e0-4107-801b-69dcb25b45b5', '10.0.0': 'ca05a688-c305-4ebd-967f-facb010c29bf', '7.0.0': 'e72825e0-d982-49cd-b361-e15cf63c6c33', '6.0.0': 'a4b9a697-e793-47a3-b4b7-d38ed6ce5d0c', '9.0.0': '41369771-7b1d-478f-a96c-96c25b637cb2', '5.0.0': '14190e64-8e48-41e7-94b1-fc7b2e42c599', '3.0.0': '9475e59b-3fee-4775-9c18-fd5caafe7336', '4.0.0': '71275c4a-504e-42fb-8989-d83e5fc460c1', '2.0.0': '09f7c621-91a6-4514-8210-2df08b5456f7', 'latest': 'ca05a688-c305-4ebd-967f-facb010c29bf'}","{'description': ""The Secondary Uses Service (SUS +) is a collection of healthcare data required by hospitals and used for planning health care, supporting payments, commissioning policy development and research.\n\nThe Secondary Uses Services Payment By Results data set is derived from SUS+ and includes key data in support of the national tariff system which is used to determine the reimbursement of NHS funded care in England.\n\nFollowing the handover of responsibility for the NHS Payment system from DH to NHS England and NHS improvements (formerly Monitor) in April 2013, PbR was effectively replaced by the National Tariff Payment System (NTPS) in April 2014. This new payment system currently retains the vast majority of PbR policy. Due to the embedded terminology, data item and extract naming consistency, SUS continues to refer PbR in SUS and therefore the terms 'Payment by Results', 'PbR', 'National Tariff Payment System' and 'NTPS' should be considered interchangeable when using SUS or any SUS Guidance. \n\nPayment by Results (PbR) provides a transparent, rules-based national tariff system, used to determine the reimbursement of NHS funded care in England. PbR rewards efficiency, supports patient choice and diversity and encourages activity for sustainable waiting time reductions. Payment is linked to activity and adjusted for casemix. This ensures a fair and consistent basis for hospital funding rather than being reliant principally on historic budgets and the negotiating skills of individual managers. PbR is the payment system in England under which commissioners pay providers of NHS-funded healthcare for each patient seen or treated, considering the complexity of the patient’s healthcare needs. The two fundamental features of PbR are nationally determined currencies and tariffs. Currencies are the unit of healthcare for which a payment is made and can take a number of forms covering different time periods from an outpatient attendance or a stay in hospital, to a year SUS+ PbR Reference Manual v4.64 Copyright © 2019 NHS Digital 5 of care for a long-term condition. Tariffs are the set prices paid for each currency.\n\nPbR currently covers most of the acute healthcare in hospitals, with national tariffs for admitted patient care, outpatient attendances and accident and emergency. This activity is submitted using Commissioning Data Sets (CDS). Current policy intends that the scope of PbR and national tariff will expand in future by introducing currencies and tariffs for mental health, community and other services\n\nTimescales for dissemination can be found under 'Our Service Levels' at the following link: https://digital.nhs.uk/services/data-access-request-service-dars/data-access-request-service-dars-process"", 'associatedMedia': ['https://digital.nhs.uk/services/secondary-uses-service-sus'], 'isPartOf': 'NOT APPLICABLE'}",ca05a688-c305-4ebd-967f-facb010c29bf,https://web.www.healthdatagateway.org/dataset/ca05a688-c305-4ebd-967f-facb010c29bf,"{'formatAndStandards': {'vocabularyEncodingScheme': ['OPCS4', 'NHS NATIONAL CODES', 'ODS', 'ICD10'], 'language': 'en', 'conformsTo': 'NHS DATA DICTIONARY', 'format': ['txt', 'csv']}, 'usage': {'investigations': ['https://digital.nhs.uk/services/data-access-request-service-dars/register-of-approved-data-releases'], 'resourceCreator': 'NHS DIGITAL', 'dataUseLimitation': 'GENERAL RESEARCH 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"{'title': 'Cystic Fibrosis Patient Annual Review Encounters', 'abstract': 'The UK Cystic Fibrosis Registry Annual Review Encounters is made up data recorded at the CF Centre: height, weight, lung function tests, respiratory cultures, x-ray results, and the results of other tests carried out at the hospital.', 'publisher': {'name': 'CYSTIC FIBROSIS TRUST', 'memberOf': 'ALLIANCE', 'contactPoint': 'registry@cysticfibrosis.org.uk'}, 'contactPoint': 'registry@cysticfibrosis.org.uk', 'keywords': ['CYSTIC FIBROSIS'], 'doiName': '10.1093/ije/dyx196'}",11360490-8da3-4a25-bb87-4fcc249b9af5,"{'typicalAgeRange': '0-150', 'spatial': 'UK', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'3.0.0': '5261e3d5-b32f-4180-a374-61cab95e63f1', '5.0.0': 'ca2c6ec0-00ce-42fc-a077-88911259576c', '4.0.0': '27910ce4-f74f-4fab-8649-19d5ec292ad8', '0.0.1': '03ab25be-9111-4de6-9714-fa32243862e9', '1.0.0': 'f9ba5dc8-3b4f-44fa-bc94-367a44d957e3', '2.0.0': '6ca2829d-aa9c-43a6-9e0b-9bcba24048e9', 'latest': 'ca2c6ec0-00ce-42fc-a077-88911259576c'}","{'description': ""The UK CF Registry is a centralised database of all 60 CF centres across the UK. Data are manually entered in calendar years by CF clinical teams for the 99% of people with a diagnosis of CF who consent to their data being donated to the Registry. Data are entered onto a secure web-portal. For more information please see www.cysticfibrosis.org.uk/registry and 'Data Resource Profile: The UK CF Registry' published in the International Journal of Epidemiology (2018 Feb 1;47(1)9-10e)."", 'isPartOf': 'No Group'}",ca2c6ec0-00ce-42fc-a077-88911259576c,https://web.www.healthdatagateway.org/dataset/ca2c6ec0-00ce-42fc-a077-88911259576c,"{'usage': {'isReferencedBy': [""'Data Resource Profile: The UK CF Registry' published in the International Journal of Epidemiology (2018 Feb 1;47(1)9-10e)""], 'resourceCreator': 'Cystic Fibrosis Trust'}, 'formatAndStandards': {'language': 'en', 'conformsTo': 'LOCAL', 'vocabularyEncodingScheme': 'LOCAL', 'format': ['csv']}, 'access': {'accessRights': ['https://www.cysticfibrosis.org.uk/the-work-we-do/uk-cf-registry/apply-for-data-from-the-uk-cf-registry'], 'dataProcessor': 'Cystic Fibrosis Trust', 'accessRequestCost': 'Whilst the UK CF Registry does not charge for data, it must recoup costs of data handling (including extract and cleaning), project management, and analysis (where applicable) on behalf of third parties. 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"{'title': 'NHS Tayside and Fife Haematology (Lab Data Restructured)', 'abstract': 'NHS Tayside and Fife labs Haematology data. This is a data repository which retains patient information at a health board level.', 'publisher': {'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE', 'identifier': '607db9c4e1f9d3704d570d1f', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'hicsupport@dundee.ac.uk', 'keywords': ['Haematology', 'labs', 'HIC']}",c294bb01-062b-494e-942b-1efe8cbac3dc,"{'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'UNKNOWN', 'spatial': ['https://www.geonames.org/2636157/tayside-region.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'ac40cb93-ba18-4faf-a017-433500c83bb1', '3.0.0': 'ca8c912d-82c4-481e-b17a-b567e3bf3c72', '1.0.0': 'b9a2fe09-60b3-48a4-b252-9ed04a7dcc66', '2.0.0': 'd05e9c8c-085e-4907-8688-cad494636ed8', 'latest': 'ca8c912d-82c4-481e-b17a-b567e3bf3c72'}","{'description': 'This data is provided in a format based upon the SCI-Store system. This is a data repository which retains patient information at a health board level with data prior to 2007 for Tayside, which has been transformed to fit this new structure. There is no data available for this earlier time period for Fife.  Fife data starts in 2005/6 and all originates from SCI-Store. This is a complex dataset which is supplied in a hierarchical form, this extract is a flattening of that hierarchy by HIC.', 'isPartOf': 'University of Dundee Health Informatics Centre'}",ca8c912d-82c4-481e-b17a-b567e3bf3c72,https://web.www.healthdatagateway.org/dataset/ca8c912d-82c4-481e-b17a-b567e3bf3c72,"{'formatAndStandards': {'format': ['Database'], 'language': ['en'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['DISCLOSURE CONTROL']}, 'access': {'jurisdiction': ['GB-SCT'], 'accessService': 'HIC has implemented a remote-access ""Safe Haven"" environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details are available via the following link:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/', 'deliveryLeadTime': 'OTHER', 'accessRights': ['https://www.dundee.ac.uk/hic/governanceapprovalsupport/'], 'dataController': 'University of Dundee'}}","{'temporal': {'accrualPeriodicity': 'CONTINUOUS', 'timeLag': '1-2 WEEKS', 'startDate': '1994-08-06', 'distributionReleaseDate': '2021-09-24'}, 'origin': {'source': ['ELECTRONIC SURVEY'], 'collectionSituation': ['PRIMARY CARE'], 'purpose': ['CARE']}}",2020-06-03T12:56:49Z,"[{'observedNode': 'PERSONS', 'measuredValue': '240000000', 'disambiguatingDescription': 'There are 240000000 records in the dataset', 'observationDate': '24/09/2021', 'measuredProperty': 'COUNT'}]",3.0.0,,2021-09-27T13:32:57Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 51, 'structuralMetadata.columnName': 51, 'structuralMetadata.columnDescription': 51, 'structuralMetadata.dataType': 51, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '28c9b81c-8dee-43eb-aa18-1a731827a1a3', 'description': 'Tayside and Fife labs Haematology data. 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This is a complex dataset which is supplied in a hierarchical form, this extract is a flattening of that hierarchy by HIC.', 'name': 'Haematology (Lab Data Restructured)', 'dataElementsCount': 51, 'dataElements': '1d40b879-b065-467b-86f1-0d88673ad7c4, 73f32c3f-de27-437a-91aa-3a51b90f3f7b, 137655c1-7cea-4e47-a9ae-780c736fd58e, 58d032e9-37df-4093-8e07-55755ad22c7f, 00ebc5c6-d583-4f6f-9dd5-f78ffc81eb50, ed4b8ab7-954b-4e78-aeb8-b8ff532786ef, c140611d-1289-43b9-ac1e-ea5925496433, 9f6171c4-ba16-473c-86ae-baeaf5e1a58b, 696b1a74-2298-4b5a-a0b8-8bb72d14889a, 21b5e853-3e5e-416a-bb75-98196d7c09d8, 1648adb1-a368-46a2-9456-53b69acead3d, 94655e21-6a70-4a8c-bb2a-b1d17fe6f642, 3d41f4d9-c189-40ca-9c75-287b3985111b, b19db5a8-1031-4d50-9345-7da59d2b68d0, bf2d7c1a-e461-462f-938b-6da9182756e3, c2d00735-98bf-4208-9400-b296a53a4eea, de1bf317-729d-4e8a-b77f-f4173cacb220, 15863012-6c2b-4a6b-8d7a-b215c0a1b578, 25847888-cb06-4df4-9599-ec4093588bd2, 8b98ac22-c559-4832-923d-0dc7460a29cf, acea2e1d-d980-4163-a93d-df7a8458a450, 1a419dc4-2865-4f2b-bc61-512cdf0fa848, a0dca3b6-52ac-41ab-b767-47966277d0bb, 0af84de6-2b3e-447b-b7cd-1715046b4b71, 015cc7a6-c1eb-4170-be49-89eefe93e377, 01e9e382-08ae-49f8-83cf-756d7a4541f2, 794c10ac-3a36-4247-88d4-2db7a9ec8c3b, 7c31e762-68ef-484a-b732-282b167961a3, 9e2faf0f-29e1-4d58-8392-159cb6f2a05c, 29b964a7-5c36-48fa-b51d-d8b4aec42f90, 3c85a5bf-e487-4bec-9aa7-d253e0c18df1, c0b7997e-e2cb-43b8-bf3c-4dfe7b5e63f3, f74575db-b1a5-4533-be34-178c4de791cf, cc655bee-2089-4852-a29a-e5c011961c51, bd43b9b1-5175-4287-8c37-667a837251b5, 7d125b17-4ee8-4a74-883b-b1034e626d64, ab8ced45-8d73-4e89-b790-79a8254190e2, 4f757a9c-a321-47ee-8e48-9a82df1d96b8, 83a1b1a1-5b61-4019-aa2a-d1972dfc87fc, 23d5830f-466c-40d6-b3fe-1a5ac4d2a65a, edd6ff9a-cdc4-479e-8094-c1d428bbb408, 4a5b6d14-2696-41d5-bd59-2062582baf3e, 58200f63-defc-466c-91d5-f570068c7555, d17c1b23-ac28-4913-a0ca-578c0b4bd91c, e42e6f4f-75ca-4881-821b-9fb9bf4159b3, 73e67cdd-b931-4028-90fc-03d07ab068a3, 234847ac-94da-4bb1-a347-5c8c540c4009, c6962553-57bf-406a-a93d-7308311aba19, 2b3875cc-41f1-44e2-ab3a-7757ca05f4cc, c6e9dd57-e13a-410c-b45a-918e201a3889, 651d32ce-79f0-4c47-b777-287c257dcea4'}]}"
"{'title': 'Cystic Fibrosis Patient Liver Enzyme', 'publisher': {'name': 'CYSTIC FIBROSIS TRUST', 'memberOf': 'ALLIANCE', 'contactPoint': 'registry@cysticfibrosis.org.uk'}, 'contactPoint': 'registry@cysticfibrosis.org.uk', 'abstract': 'The UK Cystic Fibrosis Registry Liver Enzymes is made up of data items relating to liver enzyme tests taken during CF patient encounters at NHS hospitals in UK.', 'keywords': ['CYSTIC FIBROSIS'], 'doiName': '10.1093/ije/dyx196'}",f72e80fc-dcd3-4457-ae91-dd14449002dd,"{'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'UK'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'4.0.0': '465b6336-2d79-4604-a767-03b54d15e44e', '6.0.0': 'caa644b6-a50d-455b-bee1-96232443e2b9', '5.0.0': '1048c3d9-42f6-4950-89be-c51fe7421753', '3.0.0': '2d3d2c36-240e-4d38-a6ae-893bafbf6fbb', '0.0.1': '4c0a1c96-c8cf-4e61-a0af-053f75c31e81', '2.0.0': 'b7505008-510c-44ea-b3fd-912d56437942', '1.0.0': '7720b601-197d-4417-b560-3d6852bbf305', 'latest': 'caa644b6-a50d-455b-bee1-96232443e2b9'}","{'description': ""The UK CF Registry is a centralised database of all 60 CF centres across the UK. Data are manually entered in calendar years by CF clinical teams for the 99% of people with a diagnosis of CF who consent to their data being donated to the Registry. Data are entered onto a secure web-portal. For more information please see www.cysticfibrosis.org.uk/registry and 'Data Resource Profile: The UK CF Registry' published in the International Journal of Epidemiology (2018 Feb 1;47(1)9-10e)."", 'isPartOf': 'No Group'}",caa644b6-a50d-455b-bee1-96232443e2b9,https://web.www.healthdatagateway.org/dataset/caa644b6-a50d-455b-bee1-96232443e2b9,"{'usage': {'resourceCreator': 'Cystic Fibrosis Trust', 'isReferencedBy': [""'Data Resource Profile: The UK CF Registry' published in the International Journal of Epidemiology (2018 Feb 1;47(1)9-10e)""]}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'format': ['csv'], 'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en']}, 'access': {'dataController': 'Cystic Fibrosis Trust', 'accessRequestCost': 'Whilst the UK CF Registry does not charge for data, it must recoup costs of data handling (including extract and cleaning), project management, and analysis (where applicable) on behalf of third parties. The charging structure outlined below is designed to be fair, proportionate, and transparent whilst furthering the Registry’s aim of stimulating research use of the data for the benefit of people with cystic fibrosis.\n\nhttps://www.cysticfibrosis.org.uk/the-work-we-do/uk-cf-registry/apply-for-data-from-the-uk-cf-registry', 'jurisdiction': 'GB', 'accessRights': 'https://www.cysticfibrosis.org.uk/the-work-we-do/uk-cf-registry/apply-for-data-from-the-uk-cf-registry', 'deliveryLeadTime': '16 WEEKS (8 WEEKS FOR COMMITTEE DECISION AND 8 WEEKS FOR DATA EXTRACTION AND PROCESSING)', 'dataProcessor': 'Cystic Fibrosis Trust'}}","{'temporal': {'endDate': '2019-09-01', 'startDate': '1996-01-01', 'distributionReleaseDate': '2019-09-01', 'accrualPeriodicity': 'ANNUAL'}}",2020-01-10T17:00:50Z,,6.0.0,"{'derivation': ['Not Applicable'], 'qualifiedRelation': ['All our datasets are linked by a common identifier. No external linkages.']}",2021-02-21T15:21:52Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 14, 'structuralMetadata.columnName': 14, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 14, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '90739d61-387c-4c98-9c98-92fb2b551b75', 'name': 'Lab liver enzymes', 'dataElementsCount': 14, 'dataElements': '4e0be8ba-f25b-41a2-86c9-8972414f3e6f, 88a06e11-6325-4638-9160-7986990ca747, 5e12507a-d812-4136-ae53-821c602d1bdd, 2420a745-f764-40c2-bd60-a561b71d5c23, 889f4674-6369-4c02-9832-5a33d282250a, 93b38e94-3cc1-4e3d-9721-5fccc421a620, 0b3de5b5-9ca2-4225-8b8f-796997d734ca, 3d05feb7-a1c9-4a53-9287-ef5bd7e92bfb, 7eb15f86-3384-40e4-8efd-b8755b26c4ca, af9c071a-5b36-4d3f-a88f-a0c23bf0f699, b08d44b9-c285-41e4-8fd2-1f1da2a4000d, ab87a8c7-ba09-4816-89e4-16709dce9b03, fca7de26-7ec7-4e23-b6d9-8d401fdaf601, 8924f7b5-1df0-4bca-b14b-e9b87e4ceecd'}]}"
"{'title': 'The Million Women Study', 'abstract': 'The Million Women Study is a prospective population-based study of 1.3 million women in England and Scotland, aimed at investigating the effects of various risk factors on developing common and serious illnesses in middle and old age.', 'publisher': {'identifier': '61800787f4dde0c2a01e1ea2', 'memberOf': 'HUBS', 'name': 'DATAMIND'}, 'keywords': ['Million Women Study', 'Mental Health', 'Physical Measures', 'NHS', 'Longitudinal', 'Linked NHS Data', 'DATAMIND']}",97ac8a7d-30b9-4fa6-84db-b4f9430fc1d6,"{'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2638360/scotland.html'], 'typicalAgeRange': '50-80', 'followup': '> 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'caab69a0-b560-4320-ac61-557f81f37ae3'},"{'description': 'The Million Women Study started recruiting participants over 20\u2009years ago, in 1996. The initial stimulus was to obtain robust prospective information on the risk of breast cancer associated with use of different types of menopausal hormone therapy (HT). When planning the necessary large-scale prospective study, an equally important aim was to obtain reliable information on the effects of other potentially modifiable factors that affect women’s health as they age.\n\nThe study includes 1 in 4 of all UK women born between 1935 and 1950, recruited through NHS breast screening centres in England and Scotland in 1996-2001. The 66 NHS breast screening centres that recruited participants covered about half of the UK population. \n\nWhile the initial stimulus was to study the risk of breast cancer and other conditions associated with the use of menopausal hormones, most of the women who joined the study had reached adulthood in the 1960s and had considerably different lifestyles to those of previous generations. For example, large proportions had begun smoking and using oral contraceptives as teenagers and young adults. The prevalence of obesity was also increasing and there were claims that other behaviours, such as diet, had important effects on health. To answer questions about the effects of these factors on health reliably requires large scale population-based evidence. The Million Women Study is therefore investigating the short-term and long-term effects of these and many other factors on women’s risk of developing or dying from different types of cancer, heart disease, stroke, dementia and other mental and neurodegenerative disorders, and many other conditions in middle and in old age.'}",caab69a0-b560-4320-ac61-557f81f37ae3,https://web.www.healthdatagateway.org/dataset/caab69a0-b560-4320-ac61-557f81f37ae3,"{'access': {'accessRights': ['http://www.millionwomenstudy.org/data_access/'], 'accessRequestCost': ['[http://www.millionwomenstudy.org/data_access/]'], 'dataProcessor': 'University of Oxford', 'dataController': 'University of Oxford', 'jurisdiction': ['GB-ENG']}}","{'origin': {'purpose': ['STUDY']}, 'temporal': {'accrualPeriodicity': 'OTHER', 'timeLag': 'VARIABLE', 'startDate': '1996-01-01'}}",2021-12-02T09:47:11Z,"[{'observedNode': 'PERSONS', 'measuredValue': 1319475, 'disambiguatingDescription': 'Number of participants at recruitment', 'observationDate': '01/01/1996', 'measuredProperty': 'Count'}]",1.0.0,,2021-12-02T09:47:11Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Northern Ireland Regional Maternity system (NIMATS)', 'abstract': 'The Northern Ireland Maternity system (NIMATs) contains a range of demographic and clinical information on mothers and infants.', 'contactPoint': 'hbs@hscni.net', 'keywords': ['Maternity', 'Pregnancy', 'Births', 'Northern Ireland', 'NCS', 'National Core Study', 'COVID-19'], 'publisher': {'name': 'HEALTH AND SOCIAL CARE NORTHERN IRELAND', 'identifier': '5f89662f7150a1b050be0710', 'memberOf': 'ALLIANCE'}}",be7efa4f-e500-4a54-8157-6c4442a7e8a8,"{'pathway': 'Covers pregnancy pathway, also linkages to previous pregnancies and previous medical history.', 'followup': '6 - 12 MONTHS', 'spatial': 'https://www.geonames.org/2641364/northern-ireland.html', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-56'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '89d76819-32cb-48ad-9337-880f324a6ec0', '2.0.0': 'cace4854-a8de-4487-9c43-fe580b341d26', '0.0.1': 'fbcaeeb4-10d4-4608-8c21-1c3edc873d8c', 'latest': 'cace4854-a8de-4487-9c43-fe580b341d26'}","{'description': 'What is NIMATS?\nThe Northern Ireland Maternity System (NIMATs) contains a range of demographic and clinical information on mothers and infants.  It captures data relating to the current complete maternity process, but also contains details about the mother’s past medical and obstetric history.  It is a key source for data on birth numbers, interventions, maternal risk factors, birth weights, maternal smoking, BMI and breastfeeding on discharge. \n\nWhere is it used?\nNIMATs is available in all five Health Trust areas across Northern Ireland, within each hospital providing maternity services (11 hospitals in total).  Access to NIMATS is also available to midwives/clerical staff in various community clinics across NI to allow for booking appointments to be recorded.\n\nWhere does it get its data from?\nThe main source of data for NIMATS (excluding data input) is the Patient Administration System (PAS).  PAS provides mainly demographic details which will have been recorded when the mother attended for her booking appointment and also data recorded on admission to hospital for delivery.  Some laboratory results data is also provided by the NI Blood Transfusion Service.'}",cace4854-a8de-4487-9c43-fe580b341d26,https://web.www.healthdatagateway.org/dataset/cace4854-a8de-4487-9c43-fe580b341d26,"{'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL'], 'format': ['text', 'csv']}, 'access': {'jurisdiction': ['GB-NIR'], 'deliveryLeadTime': '2-6 MONTHS', 'accessService': 'Remote access can now be granted via an HSCNI tenancy of the UK Secure e-Research Platform (UK SeRP), the HBS still offer the physical safe setting in Belfast for local research.', 'dataController': 'HSC Health Trusts (Belfast, Northern, South Eastern, Southern and Western)', 'dataProcessor': 'HSC Honest Broker Service', 'accessRequestCost': ['http://www.hscbusiness.hscni.net/pdf/Researcher%20Pack.zip'], 'accessRights': ['http://www.hscbusiness.hscni.net/services/2454.htm']}, 'usage': {'resourceCreator': ['ACKNOWLEDGEMENT The authors would like to acknowledge the help provided by the staff of the Honest Broker Service (HBS) within the Business Services Organisation Northern Ireland (BSO). The HBS is funded by the BSO and the Department of Health (DoH). The authors alone are responsible for the interpretation of the data and any views or opinions presented are solely those of the author and do not necessarily represent those of the BSO.'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['RESEARCH USE ONLY']}}","{'temporal': {'accrualPeriodicity': 'IRREGULAR', 'timeLag': '2-6 MONTHS', 'startDate': '2010-10-20'}, 'origin': {'collectionSituation': ['OUTPATIENTS'], 'purpose': ['CARE'], 'source': ['EPR']}}",2021-03-22T17:37:59Z,"[{'observedNode': 'EVENTS', 'measuredValue': '25000', 'disambiguatingDescription': 'Approx. 25,000 maternities annually\n', 'observationDate': '14/05/2021', 'measuredProperty': 'Count'}]",2.0.0,"{'qualifiedRelation': ['Enhanced Prescribing Database'], 'derivation': ['Not Known']}",2021-06-18T12:50:57Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 38, 'structuralMetadata.tableName': 38, 'structuralMetadata.tableDescription': 38, 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"{'title': 'ECHO', 'abstract': 'Tayside echocardiographic dataset. 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"{'title': ""UKCTOCS Longitudinal Women's Cohort (UKLWC)"", 'contactPoint': 'a.gentry-maharaj@ucl.ac.uk', 'publisher': {'memberOf': 'ALLIANCE', 'contactPoint': 'a.gentry-maharaj@ucl.ac.uk', 'name': 'TISSUE DIRECTORY'}, 'abstract': 'Samples & data for following diseases: Cerebrovascular accident ,Dementia ,Fit and well, Heart disease ,Malignant neoplasm of endometrium of corpus uteri ),Malignant tumour of breast,Malignant colon tumour, and others.\nFull list in Description…', 'doiName': 'Not Available', 'keywords': ['Dementia', 'Malignant neoplasm of endometrium of corpus uteri )', 'UKLWC', 'Malignant colon tumour', 'UKCTOCS', 'UKCRC Tissue Directory', ""Women's"", 'Heart disease', 'Cerebrovascular accident', 'Malignant tumour of breast', 'Longitudinal', 'Cohort', 'Fit and well']}",e0b951ba-0f7d-4743-9374-b965042accdd,"{'spatial': 'England', 'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM'], 'typicalAgeRange': '40-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'a0d1dbe6-56a9-48c3-80a8-b01e3c18f46a', '3.0.0': 'cb7370a6-a1b0-4473-a32f-ec85ec0155a5', '1.0.0': '1f430be9-2bbe-4890-a4d8-7d8bc9d69677', '2.0.0': '62d11868-51d7-4b3a-99eb-da9f5d3797dc', 'latest': 'cb7370a6-a1b0-4473-a32f-ec85ec0155a5'}","{'description': ""This is the bioresource resulting from the United Kingdom Collaborative Trial of Ovarian Cancer Screening (UKCTOCS), one of the world's largest randomised controlled trials. Between 2001-2005 1.2 million women aged 50-74 years were invited from the general population and 202,638 post-menopausal were randomised (2:1:1) to routine care, or annual CA125 blood testing (7-11 rounds) or ultrasound to evaluate the impact of ovarian cancer screening on disease mortality. All participants provided a serum sample at recruitment with 50,262 providing further longitudinal annual samples (median of 9 samples). Women were free of any active malignancy at enrolment (2001-2005). During the follow-up period of >15 years to-date a proportion of those have subsequently developed a number of different diseases. Available comprehensive electronic health record linkage of the cohort's participants (including Hospital Episode Statistics (HES); ONS (Cancer registry, Death Certificates); National Cancer Intelligence Network (NCIN); and Myocardial Ischaemia National Audit Project (MINAP) allows exploiting clinical phenotyping and diseases diagnoses made during routine healthcare in the NHS. Women were also sent postal questionnaires. Secondary studies have to date generated additional data on symptoms, menopause and its management and further details of individual cancers. \nThe biobank contains >540,000 high-quality serum samples (10 x 500μL aliquots in straws), composed of baseline (from >189,000 women) and a unique longitudinal set of >350,000 annual serial samples (median 9) (from approximately 50,200 women). Samples have already been validated for multi-omics analysis with academic and commercial collaborators in nested case/controls sets used for genotyping, proteomics (including SWATH technology), methylation, NMR metabolomics, autoantibody profiling, ELISA-based assays, lipidomics and miRNA.\nWe provide access to collection of samples and data across the following diseases: \n•\tCerebrovascular accident (disorder)\n•\tDementia (disorder)\n•\tFit and well\n•\tHeart disease (disorder)\n•\tMalignant neoplasm of endometrium of corpus uteri (disorder)\n•\tMalignant tumour of breast, Malignant tumour of colon, Malignant tumour of lung, Malignant tumour of ovary\n•\tMalignant tumour of pancreas\nAll data is stored in the IG Toolkit-compliant and ISO 27001:2013-certified UCL Data Safe Haven.\nAll samples from the biobank have been collected using a standardised protocol and stored in liquid nitrogen at HTA licensed facilities at UK Biocentre, Oxford, UK."", 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",cb7370a6-a1b0-4473-a32f-ec85ec0155a5,https://web.www.healthdatagateway.org/dataset/cb7370a6-a1b0-4473-a32f-ec85ec0155a5,"{'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}, 'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}, 'access': {'jurisdiction': 'GB-ENG', 'accessRequestCost': 'Not specified', 'dataController': 'UCL', 'dataProcessor': 'Not Applicable', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED'}}","{'temporal': {'distributionReleaseDate': '2018-11-05', 'startDate': '2001-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:14:19Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T16:16:32Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Congenital Anomaly Register and Information Service (CARIS)', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'SAIL', 'identifier': '5f3f98068af2ef61552e1d75'}, 'abstract': 'Information about any foetus or baby who has or is suspected of having a congenital anomaly and whose mother is normally resident in Wales at time of birth.', 'keywords': ['Congenital Anomaly', 'SAIL', 'core-res', 'CARS'], 'contactPoint': 'SAILDatabank@swansea.ac.uk'}",6fe7e004-eb51-4c7b-9905-1ec9a4827dca,"{'followup': 'UNKNOWN', 'pathway': 'All pathways pertaining to congenital anomalies', 'spatial': ['https://www.geonames.org/2634895/wales.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-4'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'5.0.0': '1b0f9f08-6090-4ee0-960f-be284e281074', '6.0.0': 'cbab40e4-9e61-4466-b706-db47771d2512', 'latest': 'cbab40e4-9e61-4466-b706-db47771d2512'}","{'description': 'CARIS aims to collect reliable data about congenital anomalies that can then be used to help:\n\n- build up and monitor the picture of congenital anomalies in Wales\n- assess interventions intended to help prevent or detect congenital anomalies\n- plan and co-ordinate provision of health services for affected babies and children\n- assess possible clusters of birth defects and their causes\n\nCARIS collects information about any fetus or baby who has or is suspected of having a congenital anomaly and whose mother is normally resident in Wales at time of birth. It includes babies in whom anomalies are diagnosed at any time from conception to the end of the first year of life. Data collection commenced on 1st January 1998 and includes any baby where pregnancy ended after this date.\n\nCARIS uses a multi-source data collection method using a wide range of sources within the NHS. This ranges from antenatal ultrasound, clinical letters, post-mortems and laboratory results. CARIS also accesses a number of databases including SHIRE (Medical Genetics database), PEDW, NCCHD, Paediatric Cardiology database. Medical records are accessed to confirm, validate and add further details to the information already collected.\n\nDue to the nature of this dataset linkage based on the babies is challenging. This is because many pregnancies (approximately 20% of the total) end in fetal loss or termination. However, linkage based on the mother can be performed.', 'isPartOf': 'No Group', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/']}",cbab40e4-9e61-4466-b706-db47771d2512,https://web.www.healthdatagateway.org/dataset/cbab40e4-9e61-4466-b706-db47771d2512,"{'formatAndStandards': {'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'format': ['SQL database table']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE', 'RESEARCH SPECIFIC RESTRICTIONS'], 'isReferencedBy': ['Rolfe et al., (2017); Linking AWPS and CARIS data to estimate perinatal mortality in Wales due to congenital anomalies. https://doi.org/10.23889/ijpds.v1i1.238'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'resourceCreator': ['[""Public Health Wales NHS Trust""]'], 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/']}, 'access': {'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'deliveryLeadTime': '2-6 MONTHS', 'dataProcessor': 'SAIL Databank', 'dataController': 'Public Health Wales NHS Trust', 'accessRights': ['https://saildatabank.com/application-process/'], 'jurisdiction': ['GB']}}","{'temporal': {'endDate': '2019-12-16', 'startDate': '1998-01-01', 'accrualPeriodicity': 'ANNUAL', 'timeLag': '1-2 MONTHS', 'distributionReleaseDate': '2019-11-12'}, 'origin': {'collectionSituation': ['PRIMARY CARE', 'IN-PATIENTS'], 'purpose': ['STUDY', 'DISEASE REGISTRY'], 'source': ['EPR']}}",2021-09-13T15:30:19Z,"[{'observedNode': 'EVENTS', 'measuredValue': '3000000', 'observationDate': '01/09/2021', 'measuredProperty': 'Count', 'disambiguatingDescription': 'Approx 70-80% coverage of Welsh population through GP registrations.'}]",6.0.0,"{'qualifiedRelation': ['Yes. To any SAIL dataset & reference data.'], 'derivation': ['Not Available'], 'tools': ['https://conceptlibrary.saildatabank.com/']}",2021-09-24T10:29:23Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 4, 'structuralMetadata.tableName': 4, 'structuralMetadata.tableDescription': 4, 'structuralMetadata.dataElementsCount': 171, 'structuralMetadata.columnName': 171, 'structuralMetadata.columnDescription': 171, 'structuralMetadata.dataType': 171, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '80eb4329-7b39-46ed-9540-25a2d1656e71', 'description': ""Mother's details"", 'name': 'MOTHER', 'dataElementsCount': 17, 'dataElements': 'a3eecee9-36c5-4aa1-a960-ea581a1df502, 13b9cc05-f657-4ae4-82d2-e68184cc8f7d, 2c0bfdd1-e9c1-448a-b0f5-ac53f360dd1a, 9da05913-baee-44f9-96bf-bd429ac71be0, 5d49fbb7-328c-4f68-bd2f-c3e9fd7dd625, 2d3772f1-c3a7-4233-9c1b-73c848586243, 6414b9b9-3a65-452e-970a-66d8daf36614, eedd52a9-ceee-41ab-bad7-2296c8f9d7ce, 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"{'title': 'RIO', 'keywords': ['RIO', 'Malignant tumour of breast', 'UKCRC Tissue Directory'], 'abstract': 'Collection of samples and data across the following diseases: Malignant tumour of breast', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY', 'contactPoint': 'rio-icrctsu@icr.ac.uk'}, 'contactPoint': 'rio-icrctsu@icr.ac.uk', 'doiName': 'Not Available'}",18bc81e3-7d99-4152-bd7a-3c90ee7e489d,"{'typicalAgeRange': 'Not Known', 'physicalSampleAvailability': ['IN PROGRESS'], 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '93e10dd7-8a36-4de1-87b8-3c78042e5d79', '3.0.0': 'cde234d0-748b-4df6-a59d-3268cc7e8c1d', '1.0.0': 'c115ff01-f47c-44ea-8986-adfafa2c50ea', '2.0.0': '209f42a8-4581-49e1-a0c2-25069a37f230', 'latest': 'cde234d0-748b-4df6-a59d-3268cc7e8c1d'}","{'description': 'Window study of the PARP inhibitor rucaparib in patients with primary triple negative or BRCA1/2 related breast cancer (RIO)', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",cde234d0-748b-4df6-a59d-3268cc7e8c1d,https://web.www.healthdatagateway.org/dataset/cde234d0-748b-4df6-a59d-3268cc7e8c1d,"{'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['NULL'], 'format': ['In Progress'], 'conformsTo': ['NULL']}, 'access': {'accessRequestCost': 'Not specified', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'dataController': 'Institute of Cancer Research', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'dataProcessor': 'Not Applicable', 'jurisdiction': 'GB-ENG'}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}}","{'temporal': {'startDate': '2015-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:16:39Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:13:07Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Postponed Admitted Procedures', 'abstract': 'Reason for cancelled admitted procedures.', 'publisher': {'name': 'SAIL', 'memberOf': 'ALLIANCE', 'contactPoint': 'SAILDatabank@swansea.ac.uk'}, 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'keywords': ['Admitted', 'Procedures', 'Postponed', 'SAIL'], 'doiName': 'In Progress'}",bff94600-a254-4111-82f7-6167084d81ca,"{'spatial': 'Wales', 'typicalAgeRange': '0-150', 'followup': 'OTHER', 'pathway': 'All secondary care elective pathways', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '307cffb3-4cdf-422b-aaa3-305c8efacc38', '4.0.0': 'ce192e2e-4f31-4bb0-9c1f-5c4173c03011', '3.0.0': '947ab204-b052-4cac-897b-d771f8dcfd1f', '2.0.0': '5547663c-5be2-4dbb-ad21-baf064838fe0', '0.0.1': '0006bdc9-7d4e-4243-9900-3a7bb1cc4e9e', 'latest': 'ce192e2e-4f31-4bb0-9c1f-5c4173c03011'}","{'description': 'Information on reason for cancelled and postponed admitted procedures. Covers elective inpatient and day case activity. Be aware of several exclusion criteria: LHBs are required to submit data for elective inpatient and day case activity only via the submission of the postponed intended admission. Cancelled Regular Day / Night Attendance procedures are excluded. Maternity activity (i.e. Admission Method ‘31’ and ‘32’) is excluded. Inpatient and day case patients who are admitted and discharged without having their elective procedure undertaken are included. Those procedures that are brought forward are excluded. Procedures that are postponed one or more times during the same admitted stay but are subsequently performed during that admitted stay are excluded. Procedures that are postponed one or more times during the same admitted stay and not performed during that stay should be reported as one postponement. Procedures that are postponed twice for the same intended admission date should be counted as one postponement. Procedures that are postponed but are subsequently rescheduled and performed during the same admitted stay are excluded. Patients whose procedures were scheduled to take place outside Wales are excluded. Local Health Boards are required to submit data on Welsh residents whose procedures are intended to take place in their Local Health Board. For example, if a patient is on a waiting list in Cardiff University Health Board but are sent to Cwm Taf to have their procedure (waiting list initiative). Cwm Taf schedule the intended admission date and subsequently postpone the procedure, the postponement should be submitted by Cwm Taf. Velindre NHS Trust are excluded.\n\nFormerly known as Cancelled Admitted Procedures Dataset.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/']}",ce192e2e-4f31-4bb0-9c1f-5c4173c03011,https://web.www.healthdatagateway.org/dataset/ce192e2e-4f31-4bb0-9c1f-5c4173c03011,"{'access': {'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'jurisdiction': 'GB', 'accessRights': ['https://saildatabank.com/application-process/'], 'dataController': 'SAIL Databank', 'accessRequestCost': 'Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.', 'deliveryLeadTime': '2-6 MONTHS', 'dataProcessor': 'SAIL Databank'}, 'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'dataUseLimitation': 'GENERAL RESEARCH USE', 'resourceCreator': ['NHS Wales’ Informatics Service (NWIS)']}, 'formatAndStandards': {'language': 'en', 'conformsTo': 'LOCAL', 'format': ['SQL database table'], 'vocabularyEncodingScheme': 'LOCAL'}}","{'temporal': {'accrualPeriodicity': 'QUARTERLY', 'endDate': '2020-05-28', 'timeLag': '1-2 MONTHS', 'distributionReleaseDate': '2019-07-10', 'startDate': '2013-01-01'}, 'origin': {'collectionSituation': 'IN-PATIENTS', 'source': 'EPR', 'purpose': 'CARE'}}",2020-01-13T14:47:29Z,,4.0.0,"{'qualifiedRelation': ['Yes. 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For example, if a patient is on a waiting list in Cardiff University Health Board but are sent to Cwm Taf to have their procedure (waiting list initiative). Cwm Taf schedule the intended admission date and subsequently postpone the procedure, the postponement should be submitted by Cwm Taf.\n•Velindre NHS Trust are excluded.', 'name': 'CANCELLED_ADMITTED_PROCEDURE', 'dataElementsCount': 53, 'dataElements': '4a795e1f-c2cc-40a9-8116-1ff8be2cb08b, 74ef09f6-9672-4026-8da3-b82e424e7002, 16a83941-a029-429b-9c63-d02ebd9432b9, f055a964-32a7-4eeb-943f-fa0e430e24f7, 36257e9d-1f72-45ce-a499-f25ab8d8ec91, a4ffe342-3e8b-48fe-b8dd-2b1204566358, def6f362-53f3-48fb-b925-4925c46a987e, 25ec119e-fef7-4ddf-b2f9-0d47a49e2117, 40aa8f65-cae6-417a-8b18-3f3a15699dda, a88c2cf2-3595-4433-9faa-1fceb574f3da, 21229001-13c2-4dc2-8b63-a9c4fef70356, cf0df8c0-2127-483d-b0f0-0ed3c6d1e6a7, cad9504b-90b4-429c-87f5-bc82c1b67c2b, 57e9722b-b505-487e-a894-9c0815ac443f, 5adaa702-b971-4fa8-b617-f5ea77924116, 6ee6005a-40f0-4ea4-b404-5ef12a255d88, 0dff3800-7288-4148-a380-711c6f5103a8, 2c7551b2-9500-4441-837d-859e764d6884, 445cdf5e-0962-45b9-a1b3-a26d4dc67a22, 76d1413b-2ba3-455f-975e-ddcc14e44877, 8b49da7f-1db8-493f-b577-5406a69463db, 9eb62b53-5e0d-413b-ab89-23b6a68abf9f, 8d27074b-65af-4056-be21-b813e12a9624, 7549a0c4-0ad9-4c77-ae8f-771801af8a0c, 7a8f3aa6-c387-467e-8f00-19bec531d7ee, b06c11e6-b5da-4bad-8deb-737d5f56c239, f1d8ec49-b4ff-44ca-9405-cc3496be8c3d, b1cc4be6-8213-4f25-9d98-9206560f11b2, 2e545590-fea6-41ba-91ed-0b80a6c477a3, 2b9adb88-60e2-4423-8301-cc15ec2e85b1, 4475d62f-56fe-492c-9831-31ad0c564c63, 40a910f6-54ef-47e5-b40b-10e031e3858f, 7541e78d-1e97-44e0-b15a-1f7c33074427, 208d0295-237f-4f14-9e41-b592357e186b, f86c66af-647c-46b7-96b5-28af4920f839, f3b899d1-7f2e-4265-ae61-8776d8668165, 49603b96-98f4-47a9-8c9f-9cc2a583f8f7, c3751ccb-cc4c-4dd6-a0ec-391550c16b63, 20c55365-c251-455b-8efa-38ae6f5ba207, 39a2b734-7b88-41b6-96c0-fb7f45ff5b69, 7e779680-dfb6-4b6e-9db7-c5a8ca450bdc, 670a9748-df96-4eaf-841d-abfb32da481c, 3e32d3cf-b777-464d-913a-97b762350b82, 0ce97ca7-35b6-4eb4-b268-895861c2f015, 3db46aa2-df24-437e-8528-720877acef55, be200ec8-3aed-434f-b198-74fdfd32584e, 8c052d02-1969-4f21-ae2d-eb572bcd9e37, 47fd788c-96b3-4710-ae74-324c6e16e6eb, 9096c95f-8db8-4389-9b1a-fd3b6cc31bb6, a475f999-1b49-430a-8149-78dac735ebd1, ce9fe9bd-8906-4ade-9c3d-b793d1e02d0a, 1f2946ca-8437-4d88-a938-0716f01cce3c, 4c1a1ea3-5305-4e13-9b17-a7a81c87cb18'}]}"
"{'title': 'Maternity Services Dataset', 'publisher': {'name': 'BARTS HEALTH', 'memberOf': 'ALLIANCE', 'contactPoint': 'surjeet.janjuha@nhs.net'}, 'abstract': 'Nationally defined dataset containing both administrative & clinical details for maternity services activity. Items are coded using the national definitions as well as some in SNOMED.', 'contactPoint': 'surjeet.janjuha@nhs.net'}",173d07ab-5930-4d19-b3de-dcca193e62fd,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '1cdd3b9f-e18d-406e-ba7c-e0a7229e9ff0', '2.0.0': 'ce1bcddb-a6af-4511-84c6-2a252d3eb202', '1.0.0': 'f8bab14a-bc9b-4dd1-a6c6-c57588605849', 'latest': 'ce1bcddb-a6af-4511-84c6-2a252d3eb202'}","{'description': None, 'isPartOf': 'MSDS'}",ce1bcddb-a6af-4511-84c6-2a252d3eb202,https://web.www.healthdatagateway.org/dataset/ce1bcddb-a6af-4511-84c6-2a252d3eb202,"{'access': {'accessRights': 'Available locally within Trust corporate Data Warehouse System and authorised access by Trust staff only.\nDataset is also available via SDLP platform.', 'deliveryLeadTime': 'OTHER'}}",,2020-01-13T16:54:42Z,,2.0.0,,2021-02-21T15:18:26Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'CAFCASS Wales (CAFW)', 'abstract': 'CAFCASS (Children and Family Court Advisory and Support Service) Wales Family Justice dataset.', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'publisher': {'name': 'SAIL', 'identifier': '5f3f98068af2ef61552e1d75', 'memberOf': 'ALLIANCE'}, 'keywords': ['CAFW', 'SAIL', 'core-res']}",29a714e1-5289-4362-be24-2848c954344e,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'OTHER', 'pathway': 'Family justice cases', 'typicalAgeRange': '0-18', 'spatial': ['United Kingdom,Wales']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'4.0.0': 'f5d0e254-1005-43a9-88d3-5180c015b7f0', '5.0.0': 'ce251255-cef6-4963-9ca5-ec798ab157d2', 'latest': 'ce251255-cef6-4963-9ca5-ec798ab157d2'}","{'description': 'Cafcass (Children and Family Court Advisory and Support Service) Wales Family Justice dataset.\n\nThe Children and Family Court Advisory and Support Service (Cafcass) looks after the interests of children involved in family proceedings. It is independent of the courts and social services, but works under the rules of the Family Court and legislation to work with children and their families, and then advise the courts on what is considered to be in the best interests of individual children.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/']}",ce251255-cef6-4963-9ca5-ec798ab157d2,https://web.www.healthdatagateway.org/dataset/ce251255-cef6-4963-9ca5-ec798ab157d2,"{'access': {'deliveryLeadTime': '2-6 MONTHS', 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'jurisdiction': ['GB-WLS'], 'dataProcessor': 'SAIL Databank', 'dataController': 'SAIL Databank', 'accessRights': ['https://saildatabank.com/application-process/']}, 'formatAndStandards': {'language': ['en'], 'conformsTo': ['LOCAL'], 'format': ['SQL database table'], 'vocabularyEncodingScheme': ['LOCAL']}, 'usage': {'isReferencedBy': ['Johnson, R. D., Ford, D. V., Broadhurst, K., Cusworth, L., Jones, K. H., Akbari, A., Bedston, S., Alrouh, B., Doebler, S., Lee, A., Smart, J., Thompson, S., Trinder, L., & Griffiths, L. J. (2020). Data Resource: population level family justice administrative data with opportunities for data linkage. International Journal of Population Data Science, 1339. https://doi.org/10.23889/ijpds.v5i1.1339'], 'resourceCreator': ['[""Cafcass Cymru: https://gov.wales/cafcass-cymru""]'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/']}}","{'temporal': {'distributionReleaseDate': '2019-04-25', 'startDate': '2005-01-20', 'endDate': '2022-03-31', 'accrualPeriodicity': 'IRREGULAR', 'timeLag': '2-4 WEEKS'}, 'origin': {'purpose': ['ADMINISTRATIVE'], 'source': ['OTHER'], 'collectionSituation': ['OTHER']}}",2021-09-13T14:14:26Z,"[{'observedNode': 'EVENTS', 'measuredValue': '3000000', 'observationDate': '01/09/2021', 'measuredProperty': 'Count', 'disambiguatingDescription': 'Cafcass court cases in Wales\n'}]",5.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Linkable at the person level to any dataset with SAIL anonymised linkage field.'], 'tools': ['https://conceptlibrary.saildatabank.com/']}",2022-06-01T10:37:26Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 14, 'structuralMetadata.tableName': 14, 'structuralMetadata.tableDescription': 14, 'structuralMetadata.dataElementsCount': 108, 'structuralMetadata.columnName': 108, 'structuralMetadata.columnDescription': 108, 'structuralMetadata.dataType': 108, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '65b9e388-a05c-4b8f-afdd-222a86ed849e', 'description': 'List of all service users.', 'name': 'CAFCASS_CONTACTS', 'dataElementsCount': 4, 'dataElements': 'dd6aadcb-af85-4e2a-ba17-04f72c67d886, 95d91d66-57e6-4cbc-bf9b-d5b690917e92, e9264901-6368-4617-9da1-7e9f1c0de887, e641eb9e-d598-4e79-bd36-9d8200530e50'}, {'id': '0efc736e-529b-4d0c-b250-998049c8f29d', 'description': 'List of hearings related to a case (one case has many hearings).', 'name': 'CAFCASS_HEARING', 'dataElementsCount': 6, 'dataElements': '02a4a7e1-1ff8-49f2-bb4f-40e591883b3d, 90c06cf5-a1d1-43f5-840e-062410666b83, 1ca51e9d-5030-42c1-a4e1-18f7037c3a75, 41648742-4db7-4b26-9425-3f1339187c9c, e052e955-ebef-4eab-9c7d-fe0d912735de, af361a9c-66d2-4634-90da-f2d3c27e4edd'}, {'id': 'ea905a33-d9e4-494b-aac9-3d0b0a7765e4', 'description': 'Individual Case Reports (one case has many case reports).', 'name': 'CAFCASS_CASEREPORT', 'dataElementsCount': 12, 'dataElements': '4f3ee840-4b5b-4dfa-9318-dd3bac280e41, c500fa50-1d74-497c-893d-f7a0dbaa1ddf, 034e0604-aedb-47a3-898a-817aabcf7f71, 910a4fd8-bf94-4aee-9d14-5f7cb5b629ef, 9ba89197-a10f-49bb-8fdd-ec86ff35fffb, 4f92aa66-4e8c-4977-894f-9f05aa279509, d3c7cfd9-f059-45f8-9284-63becafed2f8, 5747d868-420e-4e6a-aa9e-6328a22e7bcb, 22718be1-ec6d-498f-87fd-9d2bfe415485, 46c64a6e-a9c9-408e-80fa-65f418aaf307, 1f297dc4-8325-4f1e-b504-276f57077b7a, d12c7c9d-4b83-4655-aff6-d83208db8e83'}, {'id': '89cc587e-7568-4cf6-9934-971fa5eee2d1', 'description': 'Links between applications and service users (many to many).', 'name': 'CAFCASS_APPLICATIONSERVICEUSERS', 'dataElementsCount': 7, 'dataElements': '865a857b-d796-435b-92e4-c484a872322a, e64457a6-6a1f-4043-a8ba-e811820b3acf, 5bf3d57d-a6ba-4605-84a9-1520577a71dc, 7883174b-8a82-4554-891e-df650651caba, d4add2ff-f7e8-4143-b3a8-abac6d1a04ed, 596d492d-4f0c-4dea-8b63-88e1c84fd154, 94b89592-3a4c-4fca-8dd3-b9624c83f618'}, {'id': '53568deb-19af-4024-8f45-bc4cd94401da', 'description': 'List of all referrals to Working Together for Children course.', 'name': 'CAFCASS_WT4C', 'dataElementsCount': 8, 'dataElements': '4e6f3caa-c2eb-451d-8297-6ba60453233f, f0946287-16f7-4ec7-a6cb-331a7477ef7d, d22aec55-4020-427a-9bec-bad3952b147a, c6e28063-070c-4f0a-9a2c-5003b072f1a3, 2bc1db70-cfc3-46a8-ab3a-9ac8a9d29974, 11839b4c-9811-4b61-8b4b-e8db9acc5ee3, fea578a2-281f-4eae-95d1-ed02c8d12ff3, aad0a82d-f4a8-4182-ae2c-fb0d019fddb0'}, {'id': '77a891c7-cabe-4594-8100-74e6e3613cf2', 'description': 'Link between hearing outcomes and the application table (allows final outcomes to close off an application). 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"{'title': 'North West London Community Data (NWL COM)', 'publisher': {'name': 'DISCOVER NOW', 'memberOf': 'HUB', 'contactPoint': 'researchers@registerfordiscover.org.uk'}, 'abstract': 'The NWL COM linked table holds activity data from Community Providers which contains records of care administered in a Community setting within NWL. Some of the data items included are breastfeeding and nutrition, scored assessments and screening activity', 'doiName': 'In Progress', 'keywords': ['Community', 'Discover-NOW', 'Community Providers', 'Community Setting', 'Community Services Data Set', 'CSDS', ""Children and Young People's Health Services Data Set"", 'Community Information Data Set', 'CIDS', 'Integrated Care', 'Real World data', 'Linked longitudinal'], 'contactPoint': 'researchers@registerfordiscover.org.uk'}",65dad445-ed81-4005-9f5a-4f8a7164043e,"{'typicalAgeRange': '0-150', 'followup': '> 10 YEARS', 'pathway': 'This dataset shows patient records across all community services commissioned in NWL. Patients in this dataset will have an unique patient key that can be used to link to other Discover-NOW datasets to determine the patient pathway', 'spatial': 'NHS Brent CCG; NHS Central London CCG; NHS Ealing CCG; NHS Hammersmith &Fulham CCG; NHS Harrow CCG; NHS Hillingdon CCG; NHS Hounslow CCG; NHS West London CCG', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '2d1ca450-0ecc-4bfd-92c7-bcddcd271fc7', '5.0.0': 'ce896b89-5f4a-407c-bb10-7eec51089458', '4.0.0': 'a1ff2a5a-604a-45e8-98de-858afd9a8acb', '3.0.0': 'e85e5c8c-b6be-4e8b-8a0b-13b785b457a2', '1.0.0': '8cb716c7-728c-4357-a4d8-afc287680da1', '0.0.1': 'bcea3430-3e0a-465c-bf18-93e3579e7e2d', 'latest': 'ce896b89-5f4a-407c-bb10-7eec51089458'}","{'description': ""Providers of publicly-funded community services are legally mandated to collect and submit community health data, as set out by the Health and Social Care Act 2012. \n\nThe Community Services Data Set (CSDS) expands the scope of the  Children and Young People's Health Services Data Set (CYPHS) data set, by removing the 0-18 age restriction. The CSDS supersedes the CYPHS data set, to allow adult community data to be submitted.\n\nThe structure and content of the CSDS remains the same as the CYPHS data set. The Community Information Data Set (CIDS) has been retired, to remove the need for a separate local collection and reduce burden on providers.\n\nReports from the CSDS are available to download from the Community Services Data Set reports webpage."", 'isPartOf': 'COMMUNITY', 'associatedMedia': ['https://imperialcollegehealthpartners.com/discover-now/north-west-london-covid-19-data-repository/', 'https://www.nwlondonccgs.nhs.uk/professionals/whole-systems-integrated-care-wsic-dashboards-and-information-sharing/information-de-identified-users']}",ce896b89-5f4a-407c-bb10-7eec51089458,https://web.www.healthdatagateway.org/dataset/ce896b89-5f4a-407c-bb10-7eec51089458,"{'access': {'dataController': 'Joint data controller model across North West London', 'dataProcessor': 'NHS BRENT CCG', 'accessRequestCost': 'In Progress', 'jurisdiction': 'GB', 'deliveryLeadTime': '1-2 MONTHS', 'accessRights': ['https://imperialcollegehealthpartners.com/discover-now/nwl-covid-data-access/'], 'accessService': ""Researchers will have access to a VDI environment with a specific username and password. The researchers will get access to the datasets that is present in the hub's catalogue and would be able to carry out their research within the safe haven. There are restrictions applied which prevents the researchers from taking data out of the safe haven, once the research/analysis is completed the admin team will need to be contacted for taking the analysis off the safe haven""}, 'usage': {'investigations': ['https://www.registerfordiscover.org.uk/researchers/discover-for-researchers-and-industry'], 'resourceCreator': 'NHS Brent CCG\nDiscover-NOW', 'isReferencedBy': ['Bottleet al. BMC Medical Informatics and Decision Making (2020) 20:71 https://doi.org/10.1186/s12911-020-1082-7'], 'dataUseRequirements': ['COLLABORATION REQUIRED', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': 'NO RESTRICTION'}, 'formatAndStandards': {'format': ['Excel', 'SQL', 'Tableau', 'R'], 'vocabularyEncodingScheme': ['LOCAL', 'NHS NATIONAL CODES', 'ODS'], 'conformsTo': 'LOCAL', 'language': 'en'}}","{'origin': {'purpose': ['CARE', 'ADMINISTRATIVE'], 'collectionSituation': 'COMMUNITY', 'source': 'EPR'}, 'temporal': {'timeLag': '1-2 MONTHS', 'accrualPeriodicity': 'MONTHLY', 'distributionReleaseDate': '2022-12-18', 'startDate': '2013-01-01'}}",2020-01-10T17:02:26Z,"[{'observedNode': 'Persons', 'measuredValue': ' 748,472', 'disambiguatingDescription': '', 'observationDate': '2020-12-08', 'measuredProperty': 'Count'}]",5.0.0,"{'derivation': ['Long term condition, risk segmentation, patient segmentatation'], 'qualifiedRelation': ['This can be linked to: Admitted Patient Care Outpatient Care High Cost drugs Patient level data Primary care events Primary care prescriptions  Adult social care  Mental Health  Accident and Emergency']}",2021-03-01T13:42:13Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 148, 'structuralMetadata.columnName': 148, 'structuralMetadata.columnDescription': 114, 'structuralMetadata.dataType': 148, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '831d3acf-011b-41fa-924e-5300a7f3d65b', 'description': 'Community Activity', 'name': 'Community', 'dataElementsCount': 148, 'dataElements': '400a7135-6517-4860-a823-150aee546165, 078e2665-ee7e-4216-95a9-a08eb223da60, cf22b5eb-b79b-4fd4-8a9c-26115c046436, 164fc225-5bbd-4cdf-a0b0-dfd5f79c724e, c96b7b0c-ac5d-4ea7-b1a0-bc4eceac1d1e, 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"{'title': 'Welsh Demographic Service (WDS)', 'publisher': {'name': 'SAIL', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'memberOf': 'ALLIANCE'}, 'abstract': 'Register of all individuals registered with a Welsh GP, includes individuals anonymised address and practice history.', 'doiName': 'In Progress', 'keywords': ['Welsh', 'SAIL', 'NCS', 'National Core Study', 'COVID-19'], 'contactPoint': 'SAILDatabank@swansea.ac.uk'}",8a8a5e90-b0c6-4839-bcd2-c69e6e8dca6d,"{'pathway': 'All pathways about patients living in Wales', 'spatial': 'Wales', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'cc950c14-04f1-49b3-987d-0851ad428992', '5.0.0': 'cea328df-abe5-48fb-8bcb-c0a5b6377446', '1.0.0': 'f401bdee-81d6-42a1-81c0-74d75a0a7fd3', '3.0.0': '46568011-ae01-4e3a-9ef7-187606316668', '2.0.0': '92a4f4d2-2ba0-4c0a-9dec-f5d312d6bf8a', '4.0.0': 'b724a905-e8ae-4ab5-b543-91435f8d3514', 'latest': 'cea328df-abe5-48fb-8bcb-c0a5b6377446'}","{'description': 'Administrative information about individuals in Wales that use NHS services; such as address and practice registration history. It replaced the NHS Wales Administrative Register (NHSAR) in 2009.\n\nData drawn from GP practices via Exeter System.\n\nThis dataset provides linkage from anonymous individual to anonymous residences, thus enable to group households of individuals.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/'], 'isPartOf': 'NOT APPLICABLE'}",cea328df-abe5-48fb-8bcb-c0a5b6377446,https://web.www.healthdatagateway.org/dataset/cea328df-abe5-48fb-8bcb-c0a5b6377446,"{'access': {'accessRights': ['https://saildatabank.com/application-process/'], 'accessRequestCost': 'Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.', 'dataProcessor': 'SAIL Databank', 'dataController': 'SAIL Databank', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'jurisdiction': 'GB', 'deliveryLeadTime': '2-6 MONTHS'}, 'formatAndStandards': {'conformsTo': 'LOCAL', 'format': ['SQL database table'], 'language': 'en', 'vocabularyEncodingScheme': 'LOCAL'}, 'usage': {'isReferencedBy': ['Song et al., (2018); Assessing lifestyle risk factors and inequalities in health outcomes in most deprived communities in Wales. https://doi.org/10.23889/ijpds.v3i4.789'], 'resourceCreator': 'NHS Wales Informatics Service (NWIS)', 'dataUseRequirements': 'PROJECT SPECIFIC RESTRICTIONS', 'dataUseLimitation': ['GENERAL RESEARCH USE', 'RESEARCH SPECIFIC RESTRICTIONS']}}","{'temporal': {'startDate': '1990-01-01', 'endDate': '2020-06-21', 'timeLag': '1-2 MONTHS', 'accrualPeriodicity': 'QUARTERLY', 'distributionReleaseDate': '2019-09-26'}, 'origin': {'purpose': ['STUDY', 'ADMINISTRATIVE'], 'source': 'EPR', 'collectionSituation': ['PRIMARY CARE', 'OTHER']}}",2020-01-13T14:47:30Z,,5.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Yes. To any SAIL dataset & reference data.'], 'tools': ['https://conceptlibrary.saildatabank.com/']}",2021-04-09T18:29:21Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 3, 'structuralMetadata.tableName': 3, 'structuralMetadata.tableDescription': 3, 'structuralMetadata.dataElementsCount': 22, 'structuralMetadata.columnName': 22, 'structuralMetadata.columnDescription': 22, 'structuralMetadata.dataType': 22, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '412033ca-bd49-4b4b-8434-ef3586970b13', 'description': 'Records of people [living or deceased] who have both lived in Wales, and have ever registered with a GP practice in Wales. Provides demographic details e.g. date of birth/death, gender, etc.', 'name': 'AR_PERS', 'dataElementsCount': 6, 'dataElements': 'e8f58ef7-3c50-402c-8d6c-4cb724e523f5, 5a2bfb79-b909-4d21-a964-5b2aaf963fa7, e787e9ee-1cdf-47f5-a3e2-a6b4458eebcc, 61d422c3-c608-4e93-af8d-da5b62a2af97, 883de570-4609-4f2f-8a31-4f0e5151249e, c0b175f4-1617-47f7-80ed-9341297f5f9d'}, {'id': 'a8e08496-5f61-41ac-a066-b63d2ad3a89a', 'description': 'Complete address history for those in AR_PERS, including at LSOA geography-level. Known issues include full-time students, people failing to notify GPs of change in address, and/or people registering with multiple GPs [de-registration of patients]. Continuous periods of residency may not exist; gaps of more than 30 days are flagged.', 'name': 'AR_PERS_ADD', 'dataElementsCount': 10, 'dataElements': 'fbc92a43-7f44-4ab9-bb68-4a5df467b296, a885c8f8-86b6-4515-97b6-9e7663a4eab0, d5d9c559-b549-4f90-89e6-b7025df9613b, 09e67467-84a5-407f-a0a0-7a67365b74d4, 6429625f-7b02-4cb0-869d-3d70a7832225, 21bf168f-852f-4ac5-a324-7e540a94a1ac, 8a329781-e1c2-47e2-864a-be46b6e36a44, 65b63a87-8795-4c18-b238-f35194779d14, 4a58cf29-4546-4244-95b4-87bcad8f65b5, 69394032-3aa3-48cc-9cd7-f2fdb4623089'}, {'id': '3782dc29-ee93-4952-9891-87d66d7e8e48', 'description': 'GP registration history for people registered with GP practices in Wales; primary care-level data related to the Welsh Demographic Service. Information is excluded for those Welsh residents that are registered with a GP practice in England. Each row is a separate GP registration period. Covers all Practices (not just SAIL) and this is flagged.', 'name': 'AR_PERS_GP', 'dataElementsCount': 6, 'dataElements': '4ccccbb0-37ae-4bff-af13-f8442818babe, eb5c2136-eaa5-4f18-bd26-68b4057b8d18, 10255e66-9c87-4d62-886b-117f09aec6bc, a74f42b3-6816-4aac-86bd-331bdc22ec49, c2d4276b-05bf-4afe-a25e-570205187773, f11cfaf5-b300-4b5a-9c6e-3aef41eb50cf'}]}"
"{'title': '4 LMIC Asian Country ChrOnic: estimating respiratory disease burden in adults', 'contactPoint': 'RESPIRE@ed.ac.uk', 'publisher': {'memberOf': 'HUB', 'contactPoint': 'RESPIRE@ed.ac.uk', 'name': 'BREATHE'}, 'keywords': ['middle-income', 'Chronic Respiratory Disease', 'India', 'COPD', 'adults', 'Asian', 'asthma', 'RESPIRE', 'BREATHE', 'low-income'], 'abstract': 'The purpose of this dataset collected is to assess the burden of CRD and its social and economic impact on the community and health system.'}",490747bf-b268-41f3-8f35-f6bc4a4bdbfa,"{'typicalAgeRange': '>18', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'India'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'be9bf427-d96d-4b1a-b1d1-83bdc3e8790b', '1.0.0': 'cf64602c-7703-4f29-bd90-e0d511e2b24e', 'latest': 'cf64602c-7703-4f29-bd90-e0d511e2b24e'}","{'description': 'The dataset contains quantitative and qualitative datasets. Quantitative dataset have questionnaire and spirometry data collected from randomly selected adult population. Whereas the qualitative data contains in depth interview data collected from patient, physician and different stakeholders from private and public health system in rural part of India. The purpose of this dataset collected is to assess the burden of CRD and its social and economic impact on the community and health system.\n\nChronic Respiratory Diseases (CRD) especially asthma & Chronic Obstructive Pulmonary Disease (COPD) are common public health problems with high prevalence and mortality rates across the world. Although the majority of deaths and disability occur in developing countries, there is very little data on the true prevalence of asthma and COPD in these countries. Chronic respiratory symptoms are common in the general population but weak primary health care systems in resource-poor countries are often unable to diagnose the underlying disease condition. Factors contributing to low rates of diagnosis include limited access to, negative perceptions of, and lack of diagnostic capability in healthcare facilities. Determining the prevalence of asthma & COPD in the community has remained a challenge because of the poor sensitivity and specificity of the widely used questionnaire-based research tools, while spirometry, which is the gold standard diagnostic test, is a challenge to use in community-based epidemiological surveys. \n\nInformed by a scoping review of existing questionnaires and protocols used in Low- and Middle-Income Countries (LMICs) to identify CRDs, we conducted a pilot survey to explore feasibility of using screening process in four countries (Bangladesh, India, Malaysia, and Pakistan). Our pilot findings will inform a future fully powered survey to determine the prevalence of asthma, COPD and other CRD in the community, using robust random sampling strategies, and quality assured spirometry undertaken by field workers.\n\nFor further information, see: https://www.ed.ac.uk/usher/respire/chronic-respiratory-disorders/estimating-chronic-respiratory-disease-burden', 'isPartOf': 'BREATHE'}",cf64602c-7703-4f29-bd90-e0d511e2b24e,https://web.www.healthdatagateway.org/dataset/cf64602c-7703-4f29-bd90-e0d511e2b24e,"{'usage': {'isReferencedBy': ['Systematic scoping review protocol of methodologies of chronic respiratory disease surveys in low/middle-income countries. Agarwal D, Hanafi NS, Chippagiri S, Brakema EA, Pinnock H, Khoo EM, Sheikh A, Liew SM, Ng CW, Isaac R, Chinna K, Ping WL, Hussein NB, Juvekar S & the RESPIRE Collaborators. NPJ Prim Care Respir Med. 2019 May; 29:17'], 'resourceCreator': 'RESPIRE Collaboration'}, 'access': {'jurisdiction': 'IN', 'deliveryLeadTime': 'OTHER', 'dataProcessor': 'RESPIRE', 'accessRights': 'Access is managed on a project-by-project basis. Contact the RESPIRE team: https://www.ed.ac.uk/usher/respire/about/projects', 'dataController': 'RESPIRE'}, 'formatAndStandards': {'format': ['CSV/WORD/PDF/Audio'], 'conformsTo': ['LOCAL'], 'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL']}}","{'temporal': {'startDate': '2018-09-01', 'endDate': '2020-08-31'}}",2020-08-25T18:16:28Z,,1.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-04-14T08:27:38Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Referral to Treatment Times', 'abstract': 'Information on the total time waited from referral by a GP or other medical practitioner to hospital treatment in the NHS.', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'publisher': {'contactPoint': 'SAILDatabank@swansea.ac.uk', 'name': 'SAIL', 'memberOf': 'ALLIANCE'}, 'doiName': 'In Progress', 'keywords': ['Referral to treatment', 'SAIL']}",0bf54842-c1db-4bdb-9f55-c5be490bf758,"{'pathway': 'Treatment / diagnostic intervention referral pathway including welsh residents treated (or waiting for treatment) in England', 'followup': 'OTHER', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'Wales', 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'cdd57288-8468-4469-a61d-509c096ea32c', '4.0.0': 'cfdb9fbd-9f67-435c-b257-6b51430451bb', '1.0.0': '4495f190-42c4-49a3-8ab3-0fb0c38cfae1', '3.0.0': '009417f0-232a-4ebc-b12c-59c5352a49d3', '2.0.0': 'fd8c878e-c497-4ec2-bc67-ecb347613384', 'latest': 'cfdb9fbd-9f67-435c-b257-6b51430451bb'}","{'description': 'Monitoring the 26 week Referral to Treatment Time target.\n\nMonthly return submitted by Local Health Boards.\n\nTreatment/diagnostic intervention referral pathway, including welsh residents treated (or waiting for treatment) in England.\n\nhttps://data.gov.uk/dataset/169ea19a-21e0-472a-8245-ec2d60c219f9/referral-to-treatment-times-for-wales', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/'], 'isPartOf': 'NOT APPLICABLE'}",cfdb9fbd-9f67-435c-b257-6b51430451bb,https://web.www.healthdatagateway.org/dataset/cfdb9fbd-9f67-435c-b257-6b51430451bb,"{'usage': {'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'dataUseLimitation': 'GENERAL RESEARCH USE', 'resourceCreator': ['NHS Wales’ Informatics Service (NWIS)'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION']}, 'access': {'accessRequestCost': 'Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.', 'dataController': 'SAIL Databank', 'deliveryLeadTime': '2-6 MONTHS', 'accessRights': ['https://saildatabank.com/application-process/'], 'dataProcessor': 'SAIL Databank', 'jurisdiction': 'GB-WLS', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). 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Most datasets are available to access through remote access to the SRS. 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"{'title': 'National Audit of Psychosis - Early Intervention Psychosis Audit patient experience survey', 'publisher': {'name': 'HQIP', 'contactPoint': 'DataSharing@hqip.org.uk', 'memberOf': 'ALLIANCE'}, 'keywords': ['Diabetes', 'Paediatric', 'NPDA', 'Spotlight', 'Technology', 'Audit'], 'abstract': 'Survey data of people who have been treated in EIP services in February 2018, about the care they have received, and how they feel about it.', 'contactPoint': 'DataSharing@hqip.org.uk'}",a464c126-8591-4af6-a10f-99c020f59527,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '3c77aefc-eb85-4541-8b76-f702b265ea04', '3.0.0': 'd15b6d4a-a5de-4df4-8f29-4a8926af8024', '1.0.0': '09f8db5a-e3ee-4adf-b001-fcdf99cdbcc4', '2.0.0': '78d25670-9d20-4eb7-a79a-f29e53cc981f', 'latest': 'd15b6d4a-a5de-4df4-8f29-4a8926af8024'}","{'description': 'Survey data of people who have been treated in Early Intervention Psychosis (EIP) services, about the care they have received, and how they feel about it. People who have used EIP services helped develop the survey, and the survey asks about elements of care they felt were important.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",d15b6d4a-a5de-4df4-8f29-4a8926af8024,https://web.www.healthdatagateway.org/dataset/d15b6d4a-a5de-4df4-8f29-4a8926af8024,"{'access': {'deliveryLeadTime': 'OTHER', 'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data', 'jurisdiction': 'GB-GBN'}, 'formatAndStandards': {'language': ['en']}}",,2020-01-13T13:59:38Z,,3.0.0,,2021-04-14T08:11:05Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
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Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.', 'deliveryLeadTime': '2-6 MONTHS', 'accessRights': ['https://saildatabank.com/application-process/'], 'jurisdiction': 'GB-WLS', 'dataController': 'NHS Wales Shared Services Partnership', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). 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"{'title': 'NIHR IBD BioResource: Case report form', 'contactPoint': 'nbr@bioresource.nihr.ac.uk', 'publisher': {'identifier': '607db9c3e1f9d3704d570d0a', 'memberOf': 'HUB', 'name': 'GUT REACTION'}, 'abstract': 'Each participant recruited has an IBD-specific CRF completed by their clinical care team. These are non-exhaustive - we have the chance to ask for more information - but form the basis of analysis and recall.', 'keywords': ['IBD', ""Crohn's"", 'colitis', 'recall', 'clinical', 'CRF', 'feasibility', 'cohort discovery']}",877a7275-b99d-4ed4-9691-de577e0ab49e,"{'followup': '1 - 10 YEARS', 'spatial': 'https://www.geonames.org/2635167/united-kingdom.html', 'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM'], 'typicalAgeRange': '18-85'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'd2981964-3ff7-47e2-91e1-ac5812227a80'},"{'description': 'The NIHR IBD Bioresource comprises ~34k participants with Inflammatory Bowel Disease (IBD). The NIHR IBD BioResource acquires a case report form at recruitment for each participant recruited on the basis of their disease. Typically variables include questions that may be used to partition or group patients by their disease course and severity, and include disease history and medication use. This is used to pre-screen or match participants when inviting them to take part in experimental medicine studies. De-identified versions of this data are available to researchers investigating the feasibility of future studies.', 'associatedMedia': ['https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction-data-sources', 'https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction/'], 'isPartOf': 'Not Applicable'}",d2981964-3ff7-47e2-91e1-ac5812227a80,https://web.www.healthdatagateway.org/dataset/d2981964-3ff7-47e2-91e1-ac5812227a80,"{'access': {'accessRights': ['https://bioresource.nihr.ac.uk/using-our-bioresource'], 'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)', 'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)', 'jurisdiction': ['GB-GB'], 'accessService': 'Some de-identified data may be released to researchers in a platform-independent filetype (e.g. CSV). However, access to any data acquired via NHS Digital is subject to strict restrictions governing where data may be accessed and from which locale - access in a Trustworthy Research Environment (TRE) at AIMES secure data centre (https://aimes.uk/).', 'deliveryLeadTime': '2-6 MONTHS', 'accessRequestCost': ['https://bioresource.nihr.ac.uk/using-our-bioresource/industry-researchers/industry-bioresource-usage-costs/']}, 'formatAndStandards': {'language': ['en'], 'format': ['text', 'csv'], 'vocabularyEncodingScheme': ['SNOMED CT', 'HPO'], 'conformsTo': ['I2B2']}, 'usage': {'dataUseLimitation': ['RESEARCH USE ONLY'], 'isReferencedBy': ['Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'resourceCreator': ['NIHR BioResource. Acknowledgement text: ""We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.""'], 'investigations': ['https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction-data-sources', 'https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction/']}}","{'temporal': {'startDate': '2016-01-13', 'distributionReleaseDate': '2021-03-31', 'accrualPeriodicity': 'QUARTERLY', 'timeLag': '1-2 MONTHS'}, 'origin': {'source': ['PAPER BASED'], 'purpose': ['STUDY'], 'collectionSituation': ['CLINIC']}}",2021-09-13T16:00:35Z,"[{'observedNode': 'PERSONS', 'measuredValue': '33904', 'disambiguatingDescription': 'Participants who have clinical data (disease and/or medication data collected at recruitment by a healthcare professional)', 'observationDate': '01/09/2020', 'measuredProperty': 'COUNT'}]",6.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['ALL', 'COVID-19 SARI-Watch (formerly CHESS)', 'Civil Registration - Deaths', 'Covid-19 Second Generation Surveillance System', 'Emergency Care Data Set (ECDS)', 'Hospital Episode Statistics Accident and Emergency', 'Hospital Episode Statistics Admitted Patient Care', 'Hospital Episode Statistics Critical Care', 'Hospital Episode Statistics Outpatients', 'Intensive Care National Audit & Research Centre (ICNARC) Case Mix Programme (https://www.icnarc.org/Our-Audit/Audits/Cmp/About)']}",2021-09-13T16:00:36Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 615, 'structuralMetadata.columnName': 615, 'structuralMetadata.columnDescription': 615, 'structuralMetadata.dataType': 615, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '6da68c72-83ab-4a76-a8fa-5e4ab6cbf709', 'description': 'DDI:Clinical', 'name': 'IBD NIHR BioResource: Case report form', 'dataElementsCount': 615, 'dataElements': 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"{'title': 'HES Critical Care data for QResearch', 'publisher': {'identifier': '61ba059ac688870b12a4e05b', 'memberOf': 'ALLIANCE', 'name': 'QResearch'}, 'keywords': ['Hospital', 'Critical Care', 'NCS', 'National Core Study'], 'contactPoint': 'qresearch@phc.ox.ac.uk', 'abstract': 'Record-level patient data set of patients admitted for treatment and receiving Critical Care (intensive care or high dependency care) at NHS hospitals in England. A record represents one episode of Critical Care.'}",87966461-0162-4649-84e3-76adc5cd0274,"{'typicalAgeRange': '0-115', 'followup': '> 10 YEARS', 'pathway': 'Secondary care', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['United Kingdom,England']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '5c4279f1-0646-4732-8e8c-80da42e52753', '2.0.0': 'd3e74665-3555-4955-823f-37295862e4b6', 'latest': 'd3e74665-3555-4955-823f-37295862e4b6'}","{'description': ""Hospital Episode Statistics (HES) is a database containing details of all admissions, A and E attendances and outpatient appointments at NHS hospitals in England.\n\nAdult Critical Care (ACC) is a subset of APC data. An Intensive Care Unit (ICU) or High Dependency Unit (HDU) ward in a hospital, known as a critical care unit, provides support, monitoring and treatment for critically ill patients requiring constant support and monitoring to maintain function in at least one organ, and often in multiple organs. Medical equipment is used to take the place of patients’ organs during their recovery.\n\nSome critical care units are attached to condition-specific treatment units, such as heart, kidney, liver, breathing, circulation or nervous disorders. Others specialise in neonatal care (babies), paediatric care (children) or patients with severe injury or trauma.\n\nInitially this data is collected during a patient's time at hospital as part of the Commissioning Data Set (CDS). This is submitted to NHS Digital for processing and is returned to healthcare providers as the Secondary Uses Service (SUS) data set and includes information relating to payment for activity undertaken. It allows hospitals to be paid for the care they deliver.\n\nThis same data can also be processed and used for non-clinical purposes, such as research and planning health services. Because these uses are not to do with direct patient care, they are called 'secondary uses'. This is the HES data set.\n\nHES data covers all NHS Clinical Commissioning Groups (CCGs) in England, including:\n\nprivate patients treated in NHS hospitals patients resident outside of England care delivered by treatment centres (including those in the independent sector) funded by the NHS Each HES record contains a wide range of information about an individual patient admitted to an NHS hospital, including:\n\nclinical information about diagnoses and operations patient information, such as age group, gender and ethnicity administrative information, such as dates and methods of admission and discharge geographical information such as where patients are treated and the area where they live We apply a strict statistical disclosure control in accordance with the NHS Digital protocol, to all published HES data. This suppresses small numbers to stop people identifying themselves and others, to ensure that patient confidentiality is maintained.""}",d3e74665-3555-4955-823f-37295862e4b6,https://web.www.healthdatagateway.org/dataset/d3e74665-3555-4955-823f-37295862e4b6,"{'formatAndStandards': {'conformsTo': ['NHS DATA DICTIONARY'], 'vocabularyEncodingScheme': ['ICD10', 'OPCS4'], 'format': ['CSV', 'Stata', 'SQL Server Database'], 'language': ['en']}, 'access': {'accessRights': ['https://www.qresearch.org/information/information-for-researchers/'], 'dataProcessor': 'University of Oxford', 'accessRequestCost': ['https://www.qresearch.org/information/information-for-researchers/'], 'deliveryLeadTime': '1-2 MONTHS', 'dataController': 'University of Oxford', 'accessService': 'Remote Desktop to dedicated Windows Server.\n\nStandard Server Spec:\n16GB RAM, 4 Logical Xeon Gold Processors, 200 GB HDD\n\nMax available Server Spec:\n512GB RAM, 72 Logical Xeon Gold Processors, 2TB HDD. Tesla V100 GPU', 'jurisdiction': ['GB-ENG']}, 'usage': {'dataUseRequirements': ['ETHICS APPROVAL REQUIRED', 'NOT FOR PROFIT USE'], 'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY']}}","{'temporal': {'distributionReleaseDate': '2022-02-04', 'accrualPeriodicity': 'QUARTERLY', 'timeLag': 'MORE 6 MONTHS', 'endDate': '2021-03-31', 'startDate': '2009-04-01'}, 'origin': {'purpose': ['CARE'], 'collectionSituation': ['IN-PATIENTS'], 'source': ['EPR']}}",2022-03-21T11:50:34Z,"[{'measuredValue': '35047612', 'observedNode': 'EVENTS', 'observationDate': '04/02/2022', 'measuredProperty': 'Count'}]",2.0.0,,2022-06-08T09:51:07Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 33, 'structuralMetadata.columnName': 33, 'structuralMetadata.columnDescription': 33, 'structuralMetadata.dataType': 33, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '10ef1396-0dbd-44b3-bbc2-805bd6212e77', 'description': 'Critical Care', 'name': 'vwCore', 'dataElementsCount': 33, 'dataElements': 'd0f1a23d-e072-43f2-b462-804acb59b006, e78fbbe1-6460-49c0-af5d-b7b51557cb08, f859bfe2-1c40-47b3-bf79-2221cf601b08, e443b4b9-625a-4e96-a84e-1d2ed226c3be, 769baf6a-da7c-4d6d-a169-490573b53052, b6d61c1a-e2af-45e7-8f42-304a9df99751, 64042cad-3230-4a18-b58c-0ad59b31fa41, 5915a950-e6e3-4015-8bb2-9733be45bb62, 6bceada0-d6b0-4f74-8178-498001ef24f3, 86a46664-c114-4f7d-b40d-66916c3ac1a2, 3316313c-d678-4d87-beed-eb0c122e68dd, 49a1a0d7-30cf-4466-abb9-627c54c51d25, 50bfedf9-4217-4a3a-8857-94ebafd26bbc, a7df4336-4c9e-4954-9626-cf3ec70b8f47, 98c9e24b-22ae-41a9-9682-2e0c0167d190, bc4eab94-7e8a-4f95-be9c-51f106e3d8f9, 681f9907-d566-47fa-a208-df5c75ece240, ead6432c-59ef-41d7-8d13-a5bcdcc6e6ba, 229489c4-b68f-4d2f-b998-bde9869e159e, 22d3d732-24f9-44df-9346-569b03a1d99f, b5fd32fc-ce0d-4199-9158-7a575f45b293, 18ec2bd6-7fe8-45be-814e-f2fb73018b6b, 76ad048b-409c-45c9-8464-134f2c49b443, ae588107-3d97-4857-9098-5def58819775, 260dc10f-a555-414e-8736-0ce43889e801, 5cd8077c-1ab3-4b99-a69e-406a757b1512, fb179d5d-1224-4810-b2ce-ea05da8ed654, b6ae2297-8ce6-49a1-aee3-87b4689a911f, 71e6732f-29e3-4ddf-9f76-1e0d5bd7851c, 9bf546fa-9d77-4a7b-889b-c4f18a8d91f2, 31c6b2cc-ffd7-491b-ba71-8ca1792d23cb, 21a67c5d-e3ea-42c1-b236-5831f2f0179c, 579e8e79-dc94-4ba7-87e3-df1c6cf25a94'}]}"
"{'title': 'Annual District Birth Extract (ADBE)', 'publisher': {'name': 'SAIL', 'identifier': '5f3f98068af2ef61552e1d75', 'memberOf': 'ALLIANCE'}, 'keywords': ['Birth', 'SAIL', 'core'], 'abstract': 'Register of all births in Wales.', 'contactPoint': 'SAILDatabank@swansea.ac.uk'}",12a77014-4a77-4eb1-8b26-f49689352d1b,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Secondary', 'followup': 'OTHER', 'typicalAgeRange': '0-4', 'spatial': ['https://www.geonames.org/2634895/wales.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'6.0.0': 'd62892f9-539e-48be-b77e-d3f903d3d118', '8.0.0': 'd42aa93a-ecc3-480b-a55b-d089dbc11413', '7.0.0': '5f52b9c2-a132-4690-a236-4573cf94cf90', 'latest': 'd42aa93a-ecc3-480b-a55b-d089dbc11413'}","{'description': 'Office for National Statistics (ONS) register of all births in Wales.\n\nThe data are collected from birth registrations.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', '', 'https://saildatabank.com/']}",d42aa93a-ecc3-480b-a55b-d089dbc11413,https://web.www.healthdatagateway.org/dataset/d42aa93a-ecc3-480b-a55b-d089dbc11413,"{'access': {'deliveryLeadTime': '2-6 MONTHS', 'dataController': 'SAIL Databank', 'accessRights': ['https://saildatabank.com/application-process/'], 'dataProcessor': 'SAIL Databank', 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'jurisdiction': ['GB']}, 'formatAndStandards': {'language': ['en'], 'format': ['SQL database table'], 'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['[""Digital Health and Care Wales""]'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'isReferencedBy': ['Schlüter et al., (2019); Impact of cystic fibrosis on birthweight: a population based study of children in Denmark and Wales. http://dx.doi.org/10.1136/thoraxjnl-2018-211706']}}","{'temporal': {'timeLag': '2-4 WEEKS', 'endDate': '2021-06-28', 'accrualPeriodicity': 'QUARTERLY', 'startDate': '1996-01-01', 'distributionReleaseDate': '2021-11-11'}, 'origin': {'collectionSituation': ['CLINIC'], 'purpose': ['DISEASE REGISTRY', 'AUDIT', 'ADMINISTRATIVE', 'FINANCIAL', 'OTHER'], 'source': ['EPR']}}",2021-09-13T14:09:56Z,"[{'observedNode': 'EVENTS', 'measuredValue': '3000000', 'disambiguatingDescription': 'Approx 70-80% coverage of Welsh population through GP registrations.', 'observationDate': '01/09/2021', 'measuredProperty': 'Count'}]",8.0.0,"{'derivation': ['Not Available'], 'tools': ['https://conceptlibrary.saildatabank.com/'], 'qualifiedRelation': ['Yes. To any SAIL dataset & reference data.']}",2022-01-04T09:18:30Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 93, 'structuralMetadata.columnName': 93, 'structuralMetadata.columnDescription': 93, 'structuralMetadata.dataType': 93, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '85d9a2fe-5b9a-452e-9aa4-06f60e881000', 'description': 'The Office for National Statistics (ONS) Annual District Birth Extract (ADBE) is a register of all births relating to Welsh residents, including those born out of Wales and subsequently registered in Wales. Birth statistics are derived from information recorded when live births and stillbirths are registered as part of civil registration, a legal requirement; these data represent the most complete data source available. The registration of births is a service carried out by the Local Registration Service in partnership with the General Register Office (GRO) in England and Wales. ONS produces five birth statistical releases between July and November each year. These releases include statistics about births that occurred during the previous year. This is all data related to the ONS Annual District Birth Extract. The registration of life events (births, deaths, marriages and civil partnerships) is a service carried out by the Local Registration Service in partnership with the General Register Office (GRO) in Southport, England. 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"{'title': 'Follow-COVID', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE', 'identifier': '607db9c4e1f9d3704d570d1f'}, 'abstract': 'Follow-COVID is a study of over 100 patients across multiple regions within Scotland over the course of 6 years. \n\nThe study seeks to identify the long term consequences and future care needs of COVID-19 survivors.', 'keywords': ['COVID-19', 'Coronavirus', 'Covid', 'CO-CONNECT', 'Blood', 'Respiratory', 'HIC', 'LUNG FUNCTION', 'Long Covid'], 'contactPoint': 'HICBusiness-Support@dundee.ac.uk'}",e50d2b20-ef95-43fe-bbf0-83224d88e480,"{'typicalAgeRange': '18-99', 'spatial': ['https://www.geonames.org/2636157/tayside-region.html', 'https://www.geonames.org/3333236/south-lanarkshire.html', 'https://www.geonames.org/3333233/north-lanarkshire.html', 'https://www.geonames.org/2646944/highland.html'], 'physicalSampleAvailability': ['WHOLE BLOOD', 'URINE'], 'followup': '1 - 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'd524cd6b-14be-44a5-868c-f3e187d4e5d8'},"{'description': 'As COVID-19 is a new disease, there is a need to identify the long term consequences and future care needs of COVID19 survivors. Follow-COVID has recruited over 100 patients and has used  blood testing, urine, respiratory samples, and tests of blood vessel function to measure the long term consequences of this disease.\n\nThe study consists of a preliminary patient visit, followed by a second in-person visit several months later. There are then phone call consultations 1 year, 2 years and 5 years after the first visit, giving a longitudinal view of the progression of symptoms and long covid.'}",d524cd6b-14be-44a5-868c-f3e187d4e5d8,https://web.www.healthdatagateway.org/dataset/d524cd6b-14be-44a5-868c-f3e187d4e5d8,"{'access': {'accessRights': ['https://www.dundee.ac.uk/hic/governanceapprovalsupport/'], 'deliveryLeadTime': 'VARIABLE', 'accessService': 'HIC has implemented a remote-access ""Safe Haven"" environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details are available via the following link:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/', 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"{'title': 'INTERVAL', 'keywords': ['genetics, genomics, proteomics, metabolomics, lipidomics'], 'publisher': {'name': 'The University of Cambridge', 'contactPoint': 'srf42@medschl.cam.ac.uk', 'memberOf': 'OTHER'}, 'contactPoint': 'srf42@medschl.cam.ac.uk', 'abstract': 'The INTERVAL bioresource comprises 50,000 English blood donors, on whom deep molecular phenotypes (e.g. genomics, proteomics, metabolomics, lipidomics) have been generated.'}",c1fa9b47-a954-4587-a0c2-bae0f3ec2b9b,"{'followup': 'OTHER', 'spatial': 'England', 'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM', 'WHOLE BLOOD'], 'typicalAgeRange': '18-80'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'd58d02f1-47c2-44fc-b16e-4f6cbbb46e62'},"{'description': 'In over 100 years of blood donation practice, INTERVAL is the first randomised controlled trial to assess the impact of varying the frequency of blood donation on donor health and the blood supply. It provided policy-makers with evidence that collecting blood more frequently than current intervals can be implemented over two years without impacting on donor health, allowing better management of the supply to the NHS of units of blood with in-demand blood groups. INTERVAL was designed to deliver a multi-purpose strategy: an initial purpose related to blood donation research aiming to improve NHS Blood and Transplant’s core services and a longer-term purpose related to the creation of a comprehensive resource that will enable detailed studies of health-related questions.\n\nApproximately 50,000 generally healthy blood donors were recruited between June 2012 and June 2014 from 25 NHS Blood Donation centres across England. Approximately equal numbers of men and women; aged from 18-80; ~93% white ancestry. All participants completed brief online questionnaires at baseline and gave blood samples for research purposes. Participants were randomised to giving blood every 8/10/12 weeks (for men) and 12/14/16 weeks (for women) over a 2-year period. ~30,000 participants returned after 2 years and completed a brief online questionnaire and gave further blood samples for research purposes. \n\nThe baseline questionnaire includes brief lifestyle information (smoking, alcohol consumption, etc), iron-related questions (e.g., red meat consumption), self-reported height and weight, etc. The SF-36 questionnaire was completed online at baseline and 2-years, with a 6-monthly SF-12 questionnaire between baseline and 2-years.\n\nAll participants have had the Affymetrix Axiom UK Biobank genotyping array assayed and then imputed to 1000G+UK10K combined reference panel (80M variants in total). 4,000 participants have 50X whole-exome sequencing and 12,000 participants have 15X whole-genome sequencing. Whole-blood RNA sequencing has commenced in ~5,000 participants.\n\nThe dataset also contains data on clinical chemistry biomarkers, blood cell traits, >200 lipoproteins, metabolomics (Metabolon HD4), lipidomics, and proteomics (SomaLogic, Olink), either cohort-wide or is large sub-sets of the cohort.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['http://www.donorhealth-btru.nihr.ac.uk/project/bioresource/']}",d58d02f1-47c2-44fc-b16e-4f6cbbb46e62,https://web.www.healthdatagateway.org/dataset/d58d02f1-47c2-44fc-b16e-4f6cbbb46e62,"{'access': {'jurisdiction': 'GB-ENG', 'dataProcessor': 'The University of Cambridge', 'accessRights': ['http://www.donorhealth-btru.nihr.ac.uk/wp-content/uploads/2020/04/Data-Access-Policy-v1.0-14Apr2020.pdf'], 'deliveryLeadTime': '2-6 MONTHS', 'accessRequestCost': 'Cost recovery.', 'dataController': 'The University of Cambridge'}, 'usage': {'dataUseLimitation': 'GENERAL RESEARCH USE', 'dataUseRequirements': ['NOT FOR PROFIT USE', 'RETURN TO DATABASE OR RESOURCE', 'USER SPECIFIC RESTRICTION'], 'resourceCreator': 'INTERVAL must be acknowledged in all publications using these data. Further details will be issued through the Data Access Committee.'}, 'formatAndStandards': {'language': 'en'}}","{'temporal': {'timeLag': 'NOT APPLICABLE', 'accrualPeriodicity': 'OTHER', 'startDate': '2012-06-01'}, 'origin': {'purpose': 'TRIAL', 'collectionSituation': 'OTHER', 'source': 'ELECTRONIC SURVEY'}}",2020-12-23T11:25:27Z,,0.0.1,,2020-12-23T11:23:03Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Use of digital auscultation to improve diagnosis of paediatric pneumonia', 'publisher': {'name': 'BREATHE', 'memberOf': 'HUB', 'identifier': '607db9c2e1f9d3704d570ce6'}, 'contactPoint': 'RESPIRE@ed.ac.uk', 'keywords': ['RESPIRE', ' Bangladesh', ' community', ' digital auscultation', ' diagnosis', ' paediatric', ' pneumonia', ' Sylhet'], 'abstract': 'This study aims to improve the diagnostic accuracy of child pneumonia by using automated lung sound classification through digital auscultation.'}",198bd2cc-ca40-4dff-992c-a9480703fc37,"{'typicalAgeRange': '0-5', 'spatial': 'https://www.geonames.org/countries/GB/united-kingdom.html'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '78cf87fc-33a5-49b0-bee7-7d8030fe06e8', '1.0.0': 'd5af13e0-cbcc-47f9-8d85-21867f198051', 'latest': 'd5af13e0-cbcc-47f9-8d85-21867f198051'}","{'description': 'Integrated Community Case Management (iCCM) is a World Health Organization (WHO) approach in which community health workers deliver basic healthcare services in the community setting, including childhood pneumonia treatment.\n\nThe WHO pneumonia guidelines are sensitive but non-specific, in order to ensure that children with possible pneumonia receive antibiotic treatment. As a result, while the guidelines miss few children with pneumonia (high sensitivity), many children who do not have pneumonia incorrectly receive antibiotics (low specificity), resulting in antibiotic overuse.\n\nThe WHO guidelines do not include lung auscultation (listening to lung sounds) in their pneumonia definition for frontline healthcare workers, likely due to its high inter-observer variability, regardless of healthcare providers’ training level. Digital auscultation by electronic stethoscopes may help to overcome these limitations. Inclusion of lung auscultation in the current algorithm could enhance the specificity of the guidelines.\n\nThis study aims to improve the diagnostic accuracy of child pneumonia by using automated lung sound classification through digital auscultation.\n\nThe embedded PhD will use the study data to (i) assess the consistency of lung sounds recorded by primary health care workers from under-five children using a digital stethoscope against pre-defined quality thresholds and (ii) determine the reliability and performance of the interpretations of recorded lung sounds by the Smartscope analysis system compared to reference interpretations by a paediatric listening panel.\n\nFor further information, see associated media\n\nhttps://www.ed.ac.uk/usher/respire/phd-studentships/salahuddin-ahmed', 'associatedMedia': ['https://www.ed.ac.uk/usher/respire/acute-respiratory-disorders/digital-auscultation-pneumonia-diagnosis'], 'isPartOf': 'RESPIRE'}",d5af13e0-cbcc-47f9-8d85-21867f198051,https://web.www.healthdatagateway.org/dataset/d5af13e0-cbcc-47f9-8d85-21867f198051,"{'access': {'jurisdiction': ['GB-ENG', 'GB-SCT', 'GB-WLS'], 'dataProcessor': 'NOT APPLICABLE', 'accessRights': ['https://www.ed.ac.uk/usher/respire'], 'accessService': 'Access service varies on a project-by-project basis. Contact the RESPIRE team for further in formation', 'deliveryLeadTime': 'VARIABLE', 'dataController': 'BREATHE'}, 'formatAndStandards': {'language': ['en'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL'], 'format': ['text']}, 'usage': {'resourceCreator': ['RESPIRE collaboration'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}}","{'temporal': {'timeLag': 'NOT APPLICABLE', 'startDate': '2019-05-01', 'endDate': '2021-01-31', 'distributionReleaseDate': '2021-01-31', 'accrualPeriodicity': 'STATIC'}, 'origin': {'collectionSituation': ['COMMUNITY'], 'purpose': ['STUDY']}}",2021-04-09T15:30:20Z,"[{'observedNode': 'FINDINGS', 'measuredProperty': 'Count', 'observationDate': '31/01/2021', 'measuredValue': '1'}]",1.0.0,,2021-10-15T13:02:22Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'TRACK-COVID', 'contactPoint': 'helpdesk@trackcovid.org.uk', 'publisher': {'contactPoint': 'helpdesk@trackcovid.org.uk', 'memberOf': 'OTHER', 'name': 'UNIVERSITY OF CAMBRIDGE'}, 'keywords': ['COVID', 'COVID-19', 'SARS-CoV2', 'Serology', 'coronavirus', 'Antibodies', 'Seroprevelance', 'Prevelance', 'TRACK-COVID', 'CO-CONNECT'], 'abstract': 'SARS-CoV-2 virus stimulates a rapid antibody response in people with symptomatic and asymptomatic infection. Seroprevalence of SARS-CoV-2 antibodies in a population can serve as a useful measure of exposure and spread.'}",9e89af6b-bfa8-43dc-a2d4-5540c899a670,"{'spatial': 'England', 'typicalAgeRange': '18-100', 'followup': '1 - 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'cb28b345-b479-4e45-9091-83e0d33fb233', '2.0.0': 'd614f4fc-fae9-4775-86d9-4d4710017cf4', '0.0.1': 'f565f040-2201-4fea-8e03-705d2137a179', 'latest': 'd614f4fc-fae9-4775-86d9-4d4710017cf4'}","{'description': 'Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) virus stimulates a rapid antibody response in people with symptomatic and asymptomatic infection. Seroprevalence of SARS-CoV-2 antibodies in a population can serve as a useful measure of exposure and spread.To help plan key aspects of the public health response (e.g., shielding; eventual vaccination implementation strategies), decision-makers need regularly updated data on the evolution of SARS-CoV-2 infection (and potential immunity) in the community. The rationale is that serial longitudinal seroepidemiological surveys can help to quantify and monitor the proportion of the population that has antibodies against SARS-CoV-2, providing information on the proportion of the population exposed and the cumulative incidence of infection in the population. Hence, there is a strategic need for data from serial sero-survey studies of SARS-CoV-2 in UK.\n\nTo provide scientists and national decision-makers with detailed information to help control and understand the novel coronavirus pandemic (“COVID-19”), this study aims to track up to 90,000 individuals across England during the coming the year or so. Individuals who participated in the INTERVAL, COMPARE or STRIDES BioResource studies will be invited to take part.\n\nThe TRACK-COVID study is being conducted by researchers at the University of Cambridge to investigate why some people have symptoms of the new coronavirus (SARS-CoV-2 virus) and others don’t will help to determine the extent of infection in the general population as well as it will help to design new ways to prevent and treat such infections.\n\nThe aim of this research is to determine risk factors for infection of the novel coronavirus (COVID-19). The secondary aim to investigate why some people who carry the virus are symptomatic while others never are.\n\nThe research will provide a better understanding of the biological and environmental determinants of COVID-19 virus.'}",d614f4fc-fae9-4775-86d9-4d4710017cf4,https://web.www.healthdatagateway.org/dataset/d614f4fc-fae9-4775-86d9-4d4710017cf4,"{'access': {'accessRights': ['In Progress'], 'dataController': 'University of Cambridge', 'jurisdiction': 'GB-ENG'}, 'formatAndStandards': {'vocabularyEncodingScheme': 'LOCAL', 'conformsTo': 'OMOP', 'format': ['.csv'], 'language': 'en'}}","{'origin': {'purpose': 'STUDY'}, 'temporal': {'accrualPeriodicity': 'OTHER', 'timeLag': 'VARIABLE'}}",2021-02-22T13:04:47Z,,2.0.0,,2021-02-26T17:18:17Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 3, 'structuralMetadata.tableName': 3, 'structuralMetadata.tableDescription': 3, 'structuralMetadata.dataElementsCount': 340, 'structuralMetadata.columnName': 340, 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"{'title': 'UK BioLAM', 'contactPoint': 'mszsj@exmail.nottingham.ac.uk', 'publisher': {'contactPoint': 'Sam.Rising@nottingham.ac.uk', 'memberOf': 'ALLIANCE', 'name': 'NIHR Nottingham Biomedical Research Centre', 'identifier': '6214e1ff39af25bbdff24338'}, 'keywords': ['Lymphangioleiomyomatosis', 'LAM', 'mTOR', 'mechanistic target of rapamycin ', 'rapamycin'], 'abstract': 'Lymphangioleiomyomatosis (LAM) is a multi-system disease of women.  Metabolomics have been used to determine if metabolites downstream of mTOR and other LAM realted pathways were present or related to disease progression in a national cohort.'}",5345e2b8-13f3-41ce-9f56-87aaa9f3f55e,"{'spatial': ['United Kingdom,England'], 'physicalSampleAvailability': ['OTHER'], 'typicalAgeRange': '18-65', 'followup': 'UNKNOWN'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'd7b7faa1-e8c5-4c0b-8dc0-a9af1ec659da'},"{'description': 'Lymphangioleiomyomatosis (LAM) is a rare lung and lymphatic disease categorised by infiltration of smooth muscle type cells in the lungs and lymphatics leading to progressive respiratory impairment. The disease only effects women and is caused by a defect in one of the two proteins associated with tuberous sclerosis, tuberin and hamartin.', 'isPartOf': 'NOT APPLICABLE'}",d7b7faa1-e8c5-4c0b-8dc0-a9af1ec659da,https://web.www.healthdatagateway.org/dataset/d7b7faa1-e8c5-4c0b-8dc0-a9af1ec659da,"{'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'format': ['csv'], 'conformsTo': ['LOCAL']}, 'access': {'jurisdiction': ['GB-ENG'], 'accessRights': ['In Progress'], 'dataController': 'Professor Simon Johnson'}, 'usage': {'dataUseLimitation': []}}","{'temporal': {'timeLag': 'VARIABLE', 'accrualPeriodicity': 'IRREGULAR', 'startDate': '2004-10-01'}, 'origin': {'source': ['PAPER BASED'], 'purpose': ['STUDY'], 'collectionSituation': ['IN-PATIENTS']}}",2022-05-17T16:15:17Z,"[{'measuredValue': '300', 'observationDate': '01/10/2004', 'measuredProperty': 'Count', 'observedNode': 'PERSONS'}]",1.0.0,,2022-05-17T16:15:17Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 49, 'structuralMetadata.columnName': 49, 'structuralMetadata.columnDescription': 49, 'structuralMetadata.dataType': 49, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '8ad630fc-20bc-4bbe-a686-9cdaf41451cb', 'description': 'BioLAM data', 'name': 'BioLAM data.csv', 'dataElementsCount': 49, 'dataElements': '4bd485a0-030c-49ca-9823-96146272ddf8, 9a57f72c-4d26-4597-bbf9-2481c8bba9da, e103f3f0-a4bf-415f-8fa3-8507ec88ce19, 1afe3c1e-acd1-44a0-83e3-32958b0d69a4, 43c8ad0a-0fbf-49f9-9c96-1a197f9df130, 04e576b2-1b8d-483e-92a7-04b3b9b7ab34, ba71cf83-7aa6-4716-b8f9-4821628ae98c, 30653f94-276c-44e0-ba5b-9878f12bef60, 5cf5d1c8-bc04-4b11-8f84-8f3b0a8e02f7, b90cd28c-9dd8-4244-a01c-8a49d2525a3c, 21be08b2-84de-491a-9da6-1e46f3188eeb, e623c7eb-2cfa-4c1f-bca2-1dcbce8f4ee9, d4968fe1-f38d-4906-988e-da8ac32baa0f, 0d3107a4-3ff7-4efd-9bea-d92af5ae7fbd, dad7a195-7d68-4238-9aaf-e2094ef2e836, 934bd806-98c1-439d-95af-236d84aa6260, 2d88861a-ecb9-4d55-9e62-ebfdec0cd44a, 7f4cbd7a-7229-456a-b3ce-a52dbc2bdf2d, 4f093843-2b69-4c60-a019-5def503d7cd9, b75c42d2-111b-4364-acb8-6a0981b35c59, d7e60228-9ec5-470f-a631-54cfddf14c1b, 210a2431-48dc-4621-99fb-d9a5b368018a, 97bef01a-598c-4551-9f60-e2ac989c0b3f, cfc5637b-ce81-43cb-881a-185d68cf5e32, 199c7db0-beb4-465c-ab3f-1953fd05e19a, 359a7e09-4e20-4403-badb-5b324addf3c4, dd1ecbbf-9ae2-4e24-810f-b79b65149e5e, 7b08e0a3-138a-463f-ba00-fc5750372327, 8408aac7-8577-4b2b-9ae3-972db9e74c48, ec201622-d8ab-4bcb-bef0-dfa39d70ee3c, c8dc7e26-ef82-4c68-8cd6-94be2b7e0122, 37714f63-6ce0-43c0-aa65-b354fac8fc39, 8ce4fe81-5249-494d-978b-41abdaa0665f, 36f62807-2904-4d64-9278-e8b260270cd4, 891f0e67-a3b8-4711-9c4f-08c452bec560, eb69d6ad-e112-4e49-9b58-1fd41fa2812e, 2e737deb-c7d4-4076-84a6-2d565267302a, 7fee30d7-1b3b-49dd-af74-03cdf0fbbb4d, c19fd144-8221-420d-8534-b3ad428816eb, 6b2318fd-1f61-47a2-8210-1b70f7871636, 50cd37f1-5f56-42d5-8a2a-aa0d228bbbb8, b64848df-d6a6-4508-9388-0e7961ef68b1, 03db7dd3-0b35-4f04-8f8a-f1b4a0c0e8c0, 468d36c3-e81c-4acb-9bbe-bb97e724b203, 39fdd5d9-5c15-4e0f-8cf8-420a99d92277, 5fdb92ec-c368-44fd-9072-3f2aee890e38, 71aa8871-8ced-4735-9660-9158d593c664, 803e3ee6-0e02-4bbd-a69a-c42c8bf16906, b1f9282b-e6bf-4a70-83ac-23bcc77809e0'}]}"
"{'title': 'HES Admitted Patient Care data for CPRD GOLD', 'publisher': {'name': 'CPRD', 'identifier': '607db9c2e1f9d3704d570cee', 'memberOf': 'ALLIANCE'}, 'abstract': 'CPRD GOLD linked Hospital Episode Statistics Admitted Patient Care (HES APC) data contain details of admissions to, and attendances at, English NHS providers, including admission and discharge dates, diagnoses, procedures and specialists seen under.', 'contactPoint': 'enquiries@cprd.com', 'keywords': ['APC', 'Inpatient', 'Patient', 'Care', 'Admitted', 'HES'], 'doiName': 'https://doi.org/10.48329/fagm-ez75'}",4bcf64a6-f404-4ef4-ae6e-172512ab5f43,"{'pathway': 'Secondary care', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': '1 - 10 YEARS', 'spatial': ['https://www.geonames.org/6269131/england.html'], 'typicalAgeRange': '0-115'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '5408c7d0-fbb9-474a-834f-538b9ab197b1', '5.0.0': 'd7eeb562-2433-47c9-8b3f-72d55c24bb45', '3.0.0': '77b5cf84-d4f2-4418-bafa-73306cf2d2b2', '4.0.0': '97ae3443-b60b-4b33-b861-83663caea1dc', '1.0.0': '0f8b079d-0db8-4b8c-8af6-a51b87b8f795', '0.0.1': '7c9a21d2-912f-4915-9561-e7dc869c529b', 'latest': 'd7eeb562-2433-47c9-8b3f-72d55c24bb45'}","{'description': 'CPRD GOLD linked Hospital Episode Statistics Admitted Patient Care (HES APC) data contain details of all admissions to, or attendances at English NHS healthcare providers. This includes private patients treated in NHS hospitals, patients resident outside of England and care delivered by treatment centres (including those in the independent sector) funded by the NHS. All NHS healthcare providers in England, including acute hospital trusts, primary care trusts and mental health trusts, provide data.\nHES APC data include the complete set of hospital episode information (admission and discharge dates, diagnoses (identifying primary diagnosis), specialists seen under and procedures undertaken) for each linked patient with a hospitalisation record. In addition, Augmented care data (intensive and/or high dependency levels of care) and Maternity data are available.', 'associatedMedia': ['https://www.cprd.com/linked-data'], 'isPartOf': 'CPRD GOLD'}",d7eeb562-2433-47c9-8b3f-72d55c24bb45,https://web.www.healthdatagateway.org/dataset/d7eeb562-2433-47c9-8b3f-72d55c24bb45,"{'formatAndStandards': {'language': ['en'], 'conformsTo': ['NHS DATA DICTIONARY'], 'format': ['Tab delimited text'], 'vocabularyEncodingScheme': ['ICD10', 'ICD9', 'ODS', 'OPCS4']}, 'usage': {'investigations': ['https://www.cprd.com/protocol-list'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'NO GENERAL METHODS RESEARCH', 'NO LINKAGE', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'resourceCreator': ['NHS Digital'], 'dataUseRequirements': ['GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'isReferencedBy': ['Herbert A,Wijlaars L,Zylbersztejn A,Cromwell D,Hardelid P. Data Resource Profile: Hospital Episode Statistics Admitted Patient Care (HES APC). International Journal of Epidemiology,Volume 46,Issue 4,August 2017,Pages 1093 - 1093i.']}, 'access': {'accessRights': ['HTTPS://CPRD.COM/DATA-ACCESS'], 'accessRequestCost': ['https://www.cprd.com/pricing'], 'deliveryLeadTime': 'VARIABLE', 'jurisdiction': ['GB-ENG'], 'dataProcessor': 'CPRD', 'dataController': 'Clinical Practice Research Datalink (CPRD)', 'accessService': 'Access to CPRD data, including UK Primary Care Data, and linked data such as Hospital Episode Statistics, is subject to protocol approval via CPRD’s Research Data Governance (RDG) Process. Independent scientific and patient advice is provided by Expert Review Committees (ERCs) and the Central Advisory Committee (CAC): https://www.cprd.com/research-applications'}}","{'origin': {'purpose': ['CARE'], 'source': ['EPR'], 'collectionSituation': ['IN-PATIENTS']}, 'temporal': {'endDate': 'Invalid date', 'startDate': '1997-04-01', 'timeLag': 'MORE 6 MONTHS', 'accrualPeriodicity': 'QUARTERLY', 'distributionReleaseDate': '2022-02-04'}}",2020-01-10T18:12:15Z,"[{'observedNode': 'PERSONS', 'measuredValue': 8066341, 'disambiguatingDescription': 'Number of CPRD GOLD patients matched to single HES identifier', 'observationDate': '04/02/2022', 'measuredProperty': 'Count'}]",5.0.0,"{'qualifiedRelation': ['CPRD GOLD', 'CPRD GOLD SGSS', 'CPRD GOLD CHESS', 'CPRD GOLD ICNARC', 'Death Registration data for CPRD GOLD', 'HES Outpatient data for CPRD GOLD', 'HES Accident and Emergency data for CPRD GOLD', 'HES Diagnostic Imaging Dataset for CPRD GOLD', 'Patient postcode linked deprivation measures 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"{'title': 'Research on use of an online learning platform on under-five pneumonia', 'abstract': 'The aim of this fellowship is to use an online case management training application to facilitate final year medical students on the correct identification and management of pneumonia in children under five.', 'publisher': {'memberOf': 'HUB', 'identifier': '607db9c2e1f9d3704d570ce6', 'name': 'BREATHE'}, 'contactPoint': 'RESPIRE@ed.ac.uk', 'keywords': ['Medical Students', 'BREATHE', 'Pneumonia', 'RESPIRE', 'Pakistan', 'Online Learning']}",a3d85fd2-9df3-4f6e-9035-0830a3488ddb,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '18-150', 'spatial': 'https://www.geonames.org/1168579/islamic-republic-of-pakistan.html'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'd6b0cd86-7054-421c-b46e-d0cc779e6f7b', '4.0.0': 'd7f1b4ab-ae3c-4318-afc9-1b561d46d442', '2.0.0': '0d0ce21e-afc1-4d9f-bf54-e0545363a0cc', '3.0.0': '1448582a-9412-446a-ac55-3cc2a2320f51', '0.0.1': '24661368-557a-4f29-a694-27e5995f4e2e', 'latest': 'd7f1b4ab-ae3c-4318-afc9-1b561d46d442'}","{'description': 'The aim of this fellowship is to use an online case management training application to facilitate final year medical students on the correct identification and management of pneumonia in children under five. Improved knowledge and skills of the undergraduate medical students in correct identification and treatment of childhood pneumonia will enable them to deal with cases more effectively, reducing pneumonia related morbidity and mortality in children under five. This innovative curriculum format could also be adapted to improve case management of other common paediatric illnesses.\n\nFor further information, see: https://www.ed.ac.uk/usher/respire/respire-fellowships/nomana-zeeshan', 'isPartOf': 'BREATHE'}",d7f1b4ab-ae3c-4318-afc9-1b561d46d442,https://web.www.healthdatagateway.org/dataset/d7f1b4ab-ae3c-4318-afc9-1b561d46d442,"{'access': {'dataProcessor': 'RESPIRE', 'dataController': 'RESPIRE', 'accessRights': ['https://www.ed.ac.uk/usher/respire/about/projects'], 'jurisdiction': ['PK'], 'accessService': 'Access is managed on a project-by-project basis. Contact the RESPIRE team'}, 'formatAndStandards': {'language': ['en'], 'format': ['text'], 'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL']}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': ['RESPIRE Collaboration']}}","{'temporal': {'startDate': '2019-04-01', 'timeLag': 'NOT APPLICABLE', 'endDate': '2020-12-31', 'accrualPeriodicity': 'STATIC'}}",2020-08-05T18:19:53Z,"[{'observationDate': '30/12/2020', 'measuredProperty': 'Count', 'observedNode': 'FINDINGS', 'measuredValue': '1'}]",4.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-08-17T15:56:28Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'BathTAP Headache Cohort 1', 'publisher': {'memberOf': 'HUBS', 'name': 'ALLEVIATE', 'identifier': '613b2174b8b58d157f531e7a'}, 'keywords': ['Alleviate', 'Pain Hub', 'Pain', 'Headache'], 'contactPoint': 'hssce@bath.ac.uk', 'abstract': 'The BathTAP headache study explores the effect of a headache on cognitive performance .'}",9cff3fc9-25d6-49fe-8218-dbbc3b3bc1ab,"{'typicalAgeRange': '18-55', 'spatial': ['https://www.geonames.org/2656173/bath.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'd864c698-b98c-4a1e-9c6a-7b941d61a35c'},"{'description': 'People who experience frequent headaches completed a battery of attention-based computer tasks on two separate occasions: once when they were experiencing a headache, and again when headache free. The tasks were: a flanker task, n-back task, attentional switching task, and dual task. Outcomes are speed of response and/or accuracy scores on these tasks.'}",d864c698-b98c-4a1e-9c6a-7b941d61a35c,https://web.www.healthdatagateway.org/dataset/d864c698-b98c-4a1e-9c6a-7b941d61a35c,"{'access': {'accessRights': ['https://www.bath.ac.uk/research-centres/centre-for-pain-research-cpr/'], 'jurisdiction': ['GB-ENG'], 'dataController': 'University of Bath'}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'format': ['Database'], 'language': ['en'], 'conformsTo': ['LOCAL']}, 'usage': {'isReferencedBy': ['Moore, D. J., Keogh, E., & Eccleston, C. (2013). Headache impairs attentional performance. Pain, 154(9), 1840–1845. https://doi.org/10.1016/j.pain.2013.06.006']}}","{'temporal': {'startDate': '2013-09-01', 'distributionReleaseDate': '2013-09-01', 'endDate': '2013-09-01', 'timeLag': 'NOT APPLICABLE', 'accrualPeriodicity': 'STATIC'}, 'origin': {'collectionSituation': ['OTHER'], 'purpose': ['STUDY'], 'source': ['OTHER']}}",2021-11-01T10:59:18Z,"[{'disambiguatingDescription': 'Computer task performance', 'measuredValue': '75', 'measuredProperty': 'Count', 'observationDate': '01/09/2013', 'observedNode': 'PERSONS'}]",1.0.0,,2021-11-01T10:59:18Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 45, 'structuralMetadata.columnName': 45, 'structuralMetadata.columnDescription': 45, 'structuralMetadata.dataType': 45, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '3fbbbd6a-5ef4-4929-9bee-f04dbf89e376', 'name': 'BathTAP Headache 1', 'dataElementsCount': 45, 'dataElements': 'd9ba1632-24ab-4c28-b77e-d6329b781412, f743756f-3f77-46dd-8656-5d85dded123d, a018b117-66bc-4db6-8362-01db450c23df, e40c5e14-1290-4bc0-9c6a-65300c6ac258, 8b91afaa-99e4-4518-9183-c95629aa56c2, fd2eefe0-e872-4b10-a204-6eecebd81d93, 0972641c-365e-4503-ad44-6dfe8e6de152, afef7967-a516-492f-a0b4-352ad51b88ea, 382520c3-8070-4cce-bd8a-289ca190835a, c2036bb2-ae0f-4dfc-a2bf-4561256d50d8, c97e5745-f910-4ad2-a899-f37d688641fc, f26acdfd-0178-45ec-8725-7954ec11e8eb, d021d7f0-b597-423d-982e-3bc34cb2cf30, 78a5109b-bb93-43d1-a09d-c58534adf2eb, 7dfde746-6ac0-4928-9943-164c6799fd81, 7b50133a-f911-40f9-acfc-d96b5b756f17, f10a2f13-4755-4f73-b6b1-f74b4da3bf98, 67df5a78-f46c-4172-956d-df3d88ec24b4, 34ea0b55-44b9-4867-b05f-e25ef0fee53f, ab9491dc-7e74-44d7-ac25-0b1b0aa9170a, 95c91099-3bee-4452-8db2-0d65827b3c20, f5da36c3-a00a-421d-b816-56670e61775b, c9024704-1464-41f2-a0aa-ce4ca3e27fcf, ee62e721-a789-4728-abf5-0f86c2af3d37, 966dac5c-6c7c-4a3f-b564-7d8ddb19998f, bd7902e9-b24d-445f-abd1-fe19959ba156, 5e378346-d7f5-42c0-b0e2-a2644ebd17cb, 83285f18-488f-49e3-99ee-45dd9160a8f4, 7dc577d1-461e-4df8-9e71-355437020cc4, f0bebb92-1476-47b8-bcc2-8aa9200865e8, 69ed80eb-811f-4d23-ac5e-95837588b10f, f0ebed0d-b5ea-4872-a570-4220e0a3e46d, ac14e35c-d10f-4be3-b7e8-f946b91b4a69, 7152eefc-74fa-42a8-8ce9-906160c7ca7f, 6fb66e16-f5f2-4dac-83cf-3ba5f4029ee3, 65671e74-3cf8-4c22-be73-7c65e1a2a7ba, 0f2011cb-02a1-4a17-86a8-0b57bc460918, 3ca883fa-5583-46b5-8d22-e218c74ea165, ab714cce-97f7-407c-8710-9908ed660fc0, 9a9acc92-cb3e-4300-aa66-43c848d117a4, 06682ee5-9833-478b-bd9f-4fbc3be340d7, 71d5dda2-fba7-4359-a774-b3b68d40d38e, ff2bd5d5-133f-4db9-827f-5bb8107bb5ff, e4792381-aa75-4a0a-bedb-784310f78929, 6b2b190c-8641-4551-a1d0-ca933c8747a7'}]}"
"{'title': 'HIV PiNS', 'publisher': {'identifier': '613b2174b8b58d157f531e7a', 'name': 'ALLEVIATE', 'memberOf': 'HUBS'}, 'keywords': ['HIV', 'Alleviate', 'Pain', 'Pain Hub', 'Neuropathy', 'Anxiety', 'Depression', 'Quality of Life', 'Triglycerides'], 'abstract': 'The HIV Pain in Neuropathy Study contains pain related information about HIV patients suffering from HIV-associated sensory neuropathy (HIV-SN), a frequent complication of HIV infection and major source of morbidity.', 'contactPoint': 'a.rice@imperial.ac.uk'}",1abc859e-4ac6-431a-b550-af1afb36df1b,{'typicalAgeRange': '30-70'},"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'd89732fc-1bc3-4bd6-a634-9e9d03f3fea4'},{'description': 'A cross-sectional deep profiling study examining HIV-SN was conducted in people\nliving with HIV in a high resource setting using a battery of measures which included the following:\n- 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"{'title': 'COG-UK Viral Genome Sequences', 'keywords': ['COVID-19', 'genomics', 'SARS-CoV-2', 'COG-UK', 'viral sequence', 'FASTA', 'CO-CONNECT', 'NCS', 'National Core Study'], 'publisher': {'name': 'COVID-19 GENOMICS UK', 'memberOf': 'ALLIANCE', 'identifier': '607db9c2e1f9d3704d570cea'}, 'doiName': '10.1016/S2666-5247(20)30054-9', 'contactPoint': 'contact@cogconsortium.uk', 'abstract': 'COG-UK Consortium has published a dataset which contains over 20K SARS-CoV-2 viral genome sequences available as open access.'}",1fe02b65-7b77-43bf-93c8-4f0743fee672,"{'typicalAgeRange': '0-150', 'spatial': ['United Kingdom'], 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'be22a45f-ffc0-41cc-89f6-57f2733672e5', '5.0.0': 'd8fddd9b-56f2-44a5-9bf9-9efd8d727a8a', '2.0.0': 'c6dc78fa-1543-4fbf-87d8-a3f48e7de813', '3.0.0': '22e67d6b-3c86-46bc-8472-97ebe70773fa', '0.0.1': '43bc7592-bbcc-4521-b3a0-3949e0f44546', '4.0.0': '3cefb3f4-a463-4762-909b-3e4f3cef8e93', 'latest': 'd8fddd9b-56f2-44a5-9bf9-9efd8d727a8a'}","{'description': 'The current COVID-19 pandemic, caused by the SARS-CoV-2 virus, represents a major threat to health in the UK and globally. To fully understand the transmission and evolution of the virus requires sequencing and analysing viral genomes at scale and speed. The numbers of samples calls for a rapid increase in the UK’s pathogen genome sequencing capacity rapidly and robustly.\n\nTo provide this increased capacity to collect, sequence and analyse the whole genomes of virus samples in the UK, the COVID-19 Genomics UK (COG-UK) consortium is pooling the world leading knowledge and expertise in genomics of the four UK Public Health Agencies, multiple regional University hubs, and large sequencing centres such as the Wellcome Sanger Institute.', 'isPartOf': 'No Group'}",d8fddd9b-56f2-44a5-9bf9-9efd8d727a8a,https://web.www.healthdatagateway.org/dataset/d8fddd9b-56f2-44a5-9bf9-9efd8d727a8a,"{'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': ['COG-UK Consortium']}, 'formatAndStandards': {'conformsTo': ['HTTPS://WWW.COGCONSORTIUM.UK/PROTOCOLS/'], 'vocabularyEncodingScheme': ['HTTPS://WWW.COGCONSORTIUM.UK/PROTOCOLS/'], 'format': ['FASTA'], 'language': ['en']}, 'access': {'dataProcessor': 'CLIMB', 'jurisdiction': ['GB'], 'accessRights': ['https://www.cogconsortium.uk/data/'], 'accessRequestCost': ['0 GBP'], 'deliveryLeadTime': '2-4 WEEKS', 'dataController': 'Public Health Authorities (ENG, NI, WAL, SCOT)'}}","{'temporal': {'startDate': '2020-01-28', 'distributionReleaseDate': '2020-04-27', 'endDate': '2020-09-30', 'accrualPeriodicity': 'MONTHLY'}}",2020-04-27T17:09:27Z,[{}],5.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2022-06-09T11:42:15Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 7, 'structuralMetadata.columnName': 7, 'structuralMetadata.columnDescription': 7, 'structuralMetadata.dataType': 7, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '5231e652-c135-4d09-b499-e23483841736', 'description': 'COG-UK Serquence Metadata', 'name': 'cog_2020-04-24_metadata', 'dataElementsCount': 7, 'dataElements': 'edcdebdc-aa27-4084-a5c3-4c49db6143d0, 559c7c3d-26ca-4392-983c-a26cd101fa2a, 4a902e57-bed8-489c-ba13-b001f25ec035, e349836a-aa76-4aea-a264-495dfe76f36d, 81458db7-8acf-4e66-9074-244372001374, 0f0eb026-b89b-4913-9647-c70c013e63ed, 3c5dd03c-1108-41ce-83cd-2ba42a6d475f'}]}"
"{'title': 'Generation Scotland: Scottish Family Health Study', 'publisher': {'identifier': '607db9c3e1f9d3704d570cfe', 'memberOf': 'ALLIANCE', 'name': 'GENERATION SCOTLAND'}, 'keywords': ['Edinburgh', 'Generation', 'NHS Scotland', 'Scotland', 'UKCRC Tissue Directory', 'genetic', 'Fit and well', 'Glasgow', 'Alleviate', 'Pain', 'Pain Hub', ' Dundee', 'Aberdeen'], 'contactPoint': 'info@generationscotland.org', 'doiName': 'http://dx.doi.org/10.7488/ds/2277', 'abstract': 'A biobank of data and samples for medical research. GS:SFHS is an intensively phenotyped, family-based cohort for the study of the genetic basis of common complex diseases and response to treatments, with consent to record linkage and recontact.'}",f4f0ef1a-46cf-4734-8516-3adb0b62ae6d,"{'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM', 'URINE', 'WHOLE BLOOD'], 'typicalAgeRange': '18-90', 'spatial': ['https://www.geonames.org/2638360/scotland.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '301233da-53f8-4cea-8f74-4d4aa8d8c42c', '3.0.0': 'd95be3ed-f767-4ea5-9e4d-295446f68eb5', '2.0.0': 'e0041506-9539-4cb2-a699-c2f0967dfe42', '1.0.0': '17ff9515-8296-435b-a50e-014168714689', 'latest': 'd95be3ed-f767-4ea5-9e4d-295446f68eb5'}","{'description': 'A collaboration between the Universities of Edinburgh, Glasgow, Dundee and Aberdeen, and NHS Scotland, to provide resources for genetic and medical research.\n\nThe Scottish Family Health Study (GS:SFHS) is a collection of genetic, medical, familThe Generation Scotland: Scottish Family Health Study (GS:SFHS) is a collection of genetic, medical, family history and lifestyle information from over 24,000 volunteers. It is an intensively phenotyped, family-based cohort for the study of the genetic basis of common complex diseases and response to treatments. The cohort includes just over 24,000 participants recruited 2006-11, with most consenting to record linkage and recontact. Participants gave blood or saliva samples (for processing, biochemistry and cryopreservation) and a urine sample.  The blood or saliva samples were processed to DNA and extensive genotyping was carried out on over 20,000 participants by 2015, with DNA methylation assayed on 10,000 by 2019. Follow up is primarily through record linkage and includes linkage to GP records and also via online questionnaires, including CovidLife.y history and lifestyle information from over 24,000 volunteers.  it is an intensively phenotyped, family-based cohort for the study of the genetic basis of common complex diseases and response to treatments. The cohort includes just over 24,000 participants recruited 2006-11, with most consenting to record linkage and recontact. Participants gave blood or saliva samples (for processing, biochemistry and cryopreservation) and a urine sample.  The blood or saliva samples were processed to DNA and extensive genotyping was carried out on over 20,000 participants by 2015, with DNA methylation assayed on 10,000 by 2019.', 'isPartOf': 'Generation Scotland'}",d95be3ed-f767-4ea5-9e4d-295446f68eb5,https://web.www.healthdatagateway.org/dataset/d95be3ed-f767-4ea5-9e4d-295446f68eb5,"{'access': {'accessRights': ['https://www.ed.ac.uk/generation-scotland/for-researchers/access-to-resources/access'], 'jurisdiction': ['GB-SCT'], 'dataProcessor': 'Not Applicable', 'dataController': 'University of Edinburgh', 'deliveryLeadTime': 'OTHER'}, 'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['OPCS4', 'READ', 'ICD10', 'ICD9', 'NHS SCOTLAND NATIONAL CODES', 'LOCAL'], 'format': ['text/csv '], 'conformsTo': ['NHS SCOTLAND DATA DICTIONARY']}, 'usage': {'resourceCreator': ['University of Edinburgh'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'COMMERCIAL RESEARCH USE', 'GEOGRAPHICAL RESTRICTIONS'], 'isReferencedBy': ['Smith 2012 Cohort profile Generation Scotland: Scottish Family Health Study (GS:SFHS).  http://www.ncbi.nlm.nih.gov/pubmed/?term=22786799. '], 'dataUseRequirements': ['RETURN TO DATABASE OR RESOURCE', 'COLLABORATION REQUIRED']}}","{'temporal': {'startDate': '2006-01-23', 'endDate': '2011-05-10', 'accrualPeriodicity': 'STATIC', 'timeLag': 'NOT APPLICABLE'}}",2020-09-15T12:11:40Z,"[{'observedNode': 'PERSONS', 'measuredValue': '24000', 'disambiguatingDescription': 'Adults born before 1992, residing in Scotland at time of recruitment', 'observationDate': '10/05/2011', 'measuredProperty': 'Count'}]",3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-11-19T16:21:58Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Vascular Regsitry - Oragnisational Audit dataset', 'contactPoint': 'datasharing@hqip.org.uk', 'publisher': {'name': 'HQIP', 'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d23'}, 'keywords': ['NVR', 'Vascular', 'Registry', 'Organisational'], 'abstract': 'The NVR organisational audit dataset includes data collected between 9 July and 8 October 2018 on hospital vascular services in England, Wales, Scotland and Northern Ireland. It includes data on the availability of and access to arterial surgical services, personnel and facilities, as well as detailed information about the organisation and systems relating to specific vascular interventions, such as bypass surgery and angioplasty for lower limb ischaemia.'}",3c661240-e4d2-456c-a809-133c23f9c469,"{'pathway': 'Characteristics of hospitals in the UK that provided vascular surgical services in August 2018', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2638360/scotland.html', 'https://www.geonames.org/2634895/wales.html'], 'followup': 'UNKNOWN'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '746a7620-9acd-46e1-93e8-e94096f6384e', '5.0.0': 'd977abd8-a966-4b4c-99f0-7a4c368f9934', '1.0.0': '7f669d1d-22b4-440d-a36c-5982ef6069e3', 'latest': 'd977abd8-a966-4b4c-99f0-7a4c368f9934'}","{'description': 'The NVR organisational audit dataset includes data collected between 9 July and 8 October 2018 on hospital vascular services in England, Wales, Scotland and Northern Ireland. It includes data on the availability of and access to arterial surgical services, personnel and facilities, as well as detailed information about the organisation and systems relating to specific vascular interventions, such as bypass surgery and angioplasty for lower limb ischaemia.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",d977abd8-a966-4b4c-99f0-7a4c368f9934,https://web.www.healthdatagateway.org/dataset/d977abd8-a966-4b4c-99f0-7a4c368f9934,"{'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['NO RESTRICTION'], 'resourceCreator': ['Data has been provided by the Healthcare Quality Improvement Partnership from the National Vascular Registry']}, 'access': {'jurisdiction': ['GB-EA'], 'accessRequestCost': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data\nhttps://www.vsqip.org.uk/about-us/accessing-nvr-data/'], 'deliveryLeadTime': 'VARIABLE', 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England', 'dataProcessor': 'Royal College of Surgeons of England', 'accessRights': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data\nhttps://www.vsqip.org.uk/about-us/accessing-nvr-data/']}, 'formatAndStandards': {'language': ['en'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL'], 'format': ['CSV', 'xlsx']}}","{'temporal': {'startDate': '2001-09-20', 'timeLag': 'VARIABLE', 'accrualPeriodicity': 'ANNUAL'}, 'origin': {'purpose': ['AUDIT'], 'source': ['ELECTRONIC SURVEY'], 'collectionSituation': ['IN-PATIENTS']}}",2020-01-13T14:55:20Z,"[{'observedNode': 'FINDINGS', 'measuredValue': 80, 'disambiguatingDescription': 'Number of Trusts in the UK who responded to the organisational audit survey', 'observationDate': '12/11/2020', 'measuredProperty': 'Count'}]",5.0.0,"{'qualifiedRelation': ['Data linked with that from other custodians may be available but the release of linked data will be subject to the separate permission of all relevant data controllers'], 'derivation': ['Not Available']}",2021-10-01T11:56:53Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 62, 'structuralMetadata.columnName': 62, 'structuralMetadata.columnDescription': 62, 'structuralMetadata.dataType': 62, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'da1bab41-15df-4090-b0a3-32fda90740d3', 'description': 'NVR - Organisational Audit data fields', 'name': 'NVR - Organisational', 'dataElementsCount': 62, 'dataElements': '68c0ab97-f217-4ca7-b2ab-6d801efa9071, c2944cc2-b682-41be-809b-0ba73c6a572c, 18b7ea09-7c72-42f2-9f80-7acdd5c57484, 10206a80-24d8-4d75-9f24-0f20e4d76333, 72e41385-a822-41f4-86e8-e8abbf251e59, c19c8207-1d27-47b1-bdde-19b8ed89af9e, 3309569a-cd28-4dfd-8bc0-af4301c956fe, cba6282e-8df2-465d-a60c-36585f3ef024, 000e8bae-0b9d-4edb-bd99-002712921b35, d3f4fb21-b1c5-4007-964c-a43525f62495, 5ae1ec37-9c8c-4f6e-b092-b69cf1ac2cf5, 13c03060-727d-48af-a304-d1d6b70f6b0b, d1af2f4b-deb9-42f7-a215-2d6ce2e57695, c5beb602-e907-4ce8-9056-1cf4975652bf, 3206fb76-28ca-4144-8637-02accb4234ca, cd6180b6-78ef-4911-b50c-3617217e028e, 4bee15c2-8d9a-4e09-a193-e5f5b046df56, 4bb2b6e4-d1f7-4250-989c-b8593ac2910f, 531ae846-6cee-425f-ad90-4f91bc249aad, 57a9ff02-3575-4730-89fa-a26e0f4b5e39, 21b1801b-fa2c-4ac9-aff1-7460dc8af4b7, c9da1913-3a78-4c45-8f9a-c892bce2384d, f9739e9b-79dd-49ad-a75f-fbfe752eebb2, 377f13ac-f87c-49eb-b1c1-160390aaa21a, 9d216f60-709b-47e2-ade3-6bfb34c59704, a8e0dbe7-49f8-43ca-b1c2-79922f38fed7, 19a4de3e-d3d4-412a-9d37-f37442660b73, be56ed2a-4492-4dc0-a0fe-925b9d97fce0, ee32bfae-f3d8-40d8-901d-31d8e1abda39, fe890d4e-e542-42c3-8461-18032ec03226, 122dc89e-cbeb-4c9a-91e4-1660fdc52cbf, fdd4357e-3eb4-4929-9b37-0279ba48f238, 63f9d497-e923-47b5-81b3-88ff43e35e0d, 839c161f-9502-4dce-af81-941c92899516, e7764fdc-3a84-4ba9-9536-54657a3274c2, 52f6203d-1636-441b-8791-e0aada2d652d, 393ba92e-98e9-49ca-a35d-bab6793262fd, 61ed1df5-dd6b-4b0e-83e1-48d4c72af510, 6388cdaf-3040-484c-b95a-95ab515f97bc, 5a6581df-137c-4a5e-a672-d1fff2ae0e8a, d0d73585-b54d-4557-8cdb-fd014609f2b3, 227c2d76-43f4-4db5-9ac7-002075d8bcfc, 53322f95-3c15-4023-bb77-a8bb774720f5, 1a7024eb-7481-4553-800f-73c003f3e764, b964891c-fcc2-4de3-8e62-30e8d642cbd2, 0baf71e2-39db-4fc5-84c3-af0019e9e7e4, 2afa1b49-34b2-4422-b117-483d28133a62, aceb73b8-2e46-43c7-9d4c-6e20ac64bbe2, 5b725805-c2a7-403c-b3db-4d4ec0729d0d, 2b4600b3-284c-4b86-a269-cbfe3fcb9792, 8bc85d67-c065-44a1-af62-14d5622e73e5, 6df13ee7-27c3-4b47-a3c3-6948a05a76c7, e5000ade-7b81-4603-8719-c600fe93efdc, b1e99706-8eca-43fd-8e39-ac56278b6051, 255f8c76-8802-42d4-ba56-6af9cfdca2c5, 1b125a62-2d96-4777-bf72-651442bdc47c, 82e0c29b-b442-472f-9632-e41a9eefefa1, e2e8c728-f00f-4cb1-a0c0-0702284861bd, d3f66729-ab27-4efd-91d5-4794b4f72bf2, c31485e4-9a5e-4914-b01c-c1c6ef56eb0a, 7d8fc7ac-40cd-43e6-9e90-9b3bd4ac30b2, 0bd99276-74e8-42c3-ad45-70baf853b0e1'}]}"
"{'title': 'CDE Documentation', 'abstract': ""Locally defined dataset containing details of all patient data recorded within PowerForms within the Trust's EHR system. The forms list is too long to note here but includes everything from admission assessments, clinical assessments, referral information and discharge information. With recent system upgrade, these also now include Nursing information."", 'contactPoint': 'BartsHealth.ResearchDataRequest@nhs.net', 'publisher': {'name': 'BARTS HEALTH', 'memberOf': 'ALLIANCE', 'identifier': '607db9c2e1f9d3704d570cde'}}",f866b225-10b8-4df4-9c32-072411f816d8,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '8a91286f-3d29-40fc-ae5b-196c46a50426', '1.0.0': 'd9fc7ff7-6de4-4757-a2e3-d49f222ea1dd', 'latest': 'd9fc7ff7-6de4-4757-a2e3-d49f222ea1dd'}","{'description': ""Locally defined dataset containing details of all patient data recorded within PowerForms within the Trust's EHR system. The forms list is too long to note here but includes everything from admission assessments, clinical assessments, referral information and discharge information. With recent system upgrade, these also now include Nursing information."", 'isPartOf': 'CDE'}",d9fc7ff7-6de4-4757-a2e3-d49f222ea1dd,https://web.www.healthdatagateway.org/dataset/d9fc7ff7-6de4-4757-a2e3-d49f222ea1dd,"{'access': {'deliveryLeadTime': 'OTHER', 'accessRights': ['Available locally within Trust corporate Data Warehouse System and authorised access by Trust staff only.Dataset is also available within Discovery.']}}",,2021-04-06T16:36:55Z,[{}],1.0.0,,2022-01-27T08:59:39Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 25, 'structuralMetadata.columnName': 25, 'structuralMetadata.columnDescription': 25, 'structuralMetadata.dataType': 25, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'c2f2afc5-d4be-45c8-80bd-87f7bbf88cd0', 'name': 'dbo.PI_CDE_DOC_RESPONSE', 'dataElementsCount': 25, 'dataElements': 'ac77e5b8-b4d5-47b3-ae12-1da81f0adff0, a1796693-3b76-41ec-a69b-2dc926e9499e, ef3f348e-ea95-4082-819a-d046dcbf3322, 2cc445b8-7f2c-4b05-b1d6-68ecbd976654, 86ec92ab-2ae4-4c19-be85-e57ddb210c0a, d16ab780-ff11-4596-98df-e85a829397f5, 392cd864-39fb-44b5-8b07-f06756c8c62c, 9d67dce0-8901-4abc-ae3c-c00f457b1038, 9a7aabf1-b3a5-4fac-8968-027921e3730a, 4b7c0df8-40a6-4ecf-91e8-1ce13da04dba, a7c5616c-a741-47a8-9091-36a8fc13e8a5, 5973e9a0-e753-41ca-a8f5-c6dace60d541, 6d09af5a-44bf-4f2c-a734-a6d2f04f62df, 0925a0c0-e5e9-47a4-b169-033fb669c8ea, 5d3af6f4-9bc8-45c6-b1aa-52ba50228d0c, 3155c04f-ab9a-48b1-9553-e82d87604f4a, 2a4d70f2-9a5a-45f2-b673-4ab0136edf11, 7400eb72-b15d-49f2-a602-13ac68744c7c, bc2ec058-88a8-48ef-acd6-8b24ae663371, d6e83754-f58d-40ca-b17e-28c1c24f050a, a8e5c7d7-a03d-4111-8214-1f0214dfe4ad, 5173c273-f564-494d-8671-5669fdf27823, ce0a90db-61fb-4ef8-a93b-1e3b253d09f4, 4e22cbe8-f501-45c3-b8b4-889c5d2b4d89, efc9cb8b-2bb2-4d0b-aa3c-e1170f03fa0b'}]}"
"{'title': 'Deeply phenotyped clinical data for hospitalised Atrial Fibrillation patients', 'publisher': {'name': 'PIONEER', 'memberOf': 'HUB', 'identifier': '607db9c5e1f9d3704d570d5f'}, 'contactPoint': 'PIONEER@UHB.NHS.UK', 'keywords': ['arrhythmia', 'atrial fibrillation', 'High blood pressure', 'Acute', 'Heart conditions', 'Stroke', 'Heart failure', 'Cardiomyopathy', 'Chronic', 'blood clots', 'embolisms', 'beta-blockers', 'a-fib', ' anticoagulants', 'calcium channel blockers', 'sinus mode', 'heart condition', 'rapid heart rhythm', 'cardioversion', 'pacemakers'], 'abstract': 'Acute presentations of Atrial Fibrillation with hypertension, atherosclerosis or heart valve problems. Granular care pathways. Demography, multi-morbidity, investigations, interventions and treatments. Serial physiology, blood biomarkers, outcomes.'}",572b3ccd-4213-4a41-9255-3096952a2954,"{'followup': '1 - 10 YEARS', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150', 'spatial': ['https://www.geonames.org/2634343/west-midlands.html'], 'pathway': 'Data is representative of the multi-ethnicity population within the West Midlands (42% non white). Data includes all patients admitted during this timeframe, with National data Opt Outs applied, and therefore is representative of admissions to secondary care. Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'da139725-1b1e-4ccd-83ab-2951d2fedca5'},"{'description': 'Atrial fibrillation (AF) is a condition of the heart where the heart control rhythm changes from the normal sinus mode to a rapid activity. It is an irregular and often very rapid heart rhythm, known as a type of arrhythmia that can lead to thrombotic events and cardiac dysfunction. AF increases the risk of stroke, heart failure and other heart-related complications.\n\nThe cause is not fully understood, but it tends to affect certain groups of people, such as older people and people living with long-term (chronic) conditions such as heart disease, high blood pressure or obesity. Congenital heart disease, pericarditis, cardiomyopathy, physical and mental stress, also contribute to disease pathogenesis. \n\nThis highly granular dataset includes patient demographics, key lifestyle and underlying health status information, procedures (catheter ablation, electrical cardioversion), medications (beta-blockers, calcium channel blockers, anticoagulants), risk factors and co-morbidities.\n\nPIONEER geography: The West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix. \n\nUHB is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.\n\nScope: Thematic dataset of Atrial Fibrillation and Atrial Flutter. Longitudinal & individually linked, so that the preceding & subsequent health journey can be mapped & healthcare utilisation prior to & after admission understood. The dataset includes highly granular patient demographics, co-morbidities taken from ICD-10 & SNOMED-CT codes. Serial, structured data pertaining to process of care (timings, admissions, wards, attending practitioner change and triage), presenting complaint, assessments, bed moves, consultation, DNAR TEAL, electrocardiogram, events, follow ups, physiology readings (heart rate, BMI, blood pressure, respiratory rate, NEWS2 score, oxygen saturations and clinical frailty scale and others), Lab analysis results (urea, albumin, platelets, potassium, white blood cell count, Covid 19 test and others) microbiology results, procedures, outpatients admissions, surgeries, therapies,  ventilation, drug administered and all outcomes.  Linked images available (radiographs, CT scans, MRI).\n\nAvailable supplementary data: Matched controls; ambulance, OMOP data, synthetic data.\n\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.'}",da139725-1b1e-4ccd-83ab-2951d2fedca5,https://web.www.healthdatagateway.org/dataset/da139725-1b1e-4ccd-83ab-2951d2fedca5,"{'formatAndStandards': {'language': ['en'], 'format': ['SQL'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['SNOMED CT', 'OPCS4', 'ICD10']}, 'access': {'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/'], 'deliveryLeadTime': '1-2 MONTHS', 'jurisdiction': ['GB-ENG'], 'dataProcessor': 'NOT APPLICABLE', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.'}, 'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'resourceCreator': ['This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}}","{'temporal': {'endDate': '2022-01-01', 'distributionReleaseDate': '2022-01-06', 'timeLag': 'OTHER', 'accrualPeriodicity': 'QUARTERLY', 'startDate': '2018-01-01'}, 'origin': {'purpose': ['CARE'], 'source': ['EPR'], 'collectionSituation': ['ACCIDENT AND EMERGENCY', 'OUTPATIENTS', 'IN-PATIENTS']}}",2022-02-15T11:26:25Z,"[{'measuredProperty': 'Count', 'observedNode': 'EVENTS', 'measuredValue': '48820', 'disambiguatingDescription': '48,820 spells diagnosed with atrial fibrillation', 'observationDate': '06/01/2022'}]",1.0.0,{'derivation': ['Not Available']},2022-02-15T11:26:25Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 28, 'structuralMetadata.tableName': 28, 'structuralMetadata.tableDescription': 28, 'structuralMetadata.dataElementsCount': 464, 'structuralMetadata.columnName': 464, 'structuralMetadata.columnDescription': 464, 'structuralMetadata.dataType': 464, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '13296061-c452-49de-b181-adfa3fd13043', 'description': 'Surgery details for each spell', 'name': 'AtrialFibSurgery', 'dataElementsCount': 27, 'dataElements': '4946d3d6-1945-4a08-9aff-74ca6f454a20, 9327f1ea-dd2c-4f75-a1ef-8d726b2cbeb6, 4f4cc763-3996-46bc-a062-60199f8e9a3b, 882ca940-a25d-4cd3-a59a-23945021ed00, 76be9978-be07-4a34-b139-ab111da1d8ea, 4d42fbac-a073-4b3f-91f5-deb478dc4f17, 68134749-684e-478c-a123-b568a73d819d, d97ec147-5c10-4f73-acab-7aa32f76b168, 5059540f-4446-43d9-86b3-384cd0f269ef, cb4db057-e3e0-4f79-8d6c-3d9c4f44793a, f58e5cf8-1c8f-4e65-b987-5a3057c5b4a6, 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"{'title': 'Child Health Systems Programme - School', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '5f8992a97150a1b050be0712', 'name': 'PUBLIC HEALTH SCOTLAND'}, 'keywords': ['Child Health'], 'contactPoint': 'phs.edris@phs.scot', 'abstract': 'The aim of the school health service is to promote the physical, mental and social well-being of children within school settings. It also provides remedial action and support for pupils with health problems and services for pupils with special educational'}",2c31cb1c-2b3d-40c5-b8d4-bf0b81f089b4,"{'typicalAgeRange': '5-9', 'spatial': ['https://www.geonames.org/2638360/scotland.html'], 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '39055f33-1082-49b2-b44c-f7dea76a5ed6', '7.0.0': 'da191840-9037-4e1f-8e6c-ec66eb80b798', '1.0.0': 'a6d19d5f-66fe-483e-b4c9-5b5e940724bf', '2.0.0': '7aeeafe6-1c85-4abc-a307-24b70d2e1586', '3.0.0': '4660884b-e40a-4251-ad19-40872641fa8c', '5.0.0': 'fcd366e3-b814-4a4a-873f-0ac7cfc75eb7', '4.0.0': '164bf6c1-79f2-4ada-98f6-85b7113d4d20', 'latest': 'da191840-9037-4e1f-8e6c-ec66eb80b798'}","{'description': 'The aim of the school health service is to promote the physical, mental and social well-being of children within a school setting. It also provides remedial action and support for pupils with health problems and services for pupils with special educational needs. The Child Health Systems Programme School System (CHSP School) facilitates the call/recall of both primary and secondary school pupils for screening, review and immunisation. It records referrals and referral updates as well as supporting efficient and effective administrative practice.', 'isPartOf': 'Child Health Surveillance Programme (CHSP)', 'associatedMedia': ['https://www.isdscotland.org/Health-Topics/Child-Health/Child-Health-Programme/Child-Health-Systems-Programme-School.asp']}",da191840-9037-4e1f-8e6c-ec66eb80b798,https://web.www.healthdatagateway.org/dataset/da191840-9037-4e1f-8e6c-ec66eb80b798,"{'formatAndStandards': {'format': ['text/csv'], 'vocabularyEncodingScheme': ['OTHER'], 'conformsTo': ['OTHER'], 'language': ['en']}, 'usage': {'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'NOT FOR PROFIT USE'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['National Services Scotland']}, 'access': {'accessRights': ['https://www.informationgovernance.scot.nhs.uk/pbpphsc/', 'https://www.isdscotland.org/Products-and-Services/eDRIS/', 'https://publichealthscotland.scot/contact-us/bespoke-data-analysis-requests/'], 'deliveryLeadTime': 'VARIABLE', 'dataProcessor': 'National Services Scotland', 'accessRequestCost': ['Research Projects - https://www.isdscotland.org/Products-and-Services/eDRIS/', 'Bespoke data analysis requests - https://publichealthscotland.scot/contact-us/bespoke-data-analysis-requests/'], 'dataController': 'Public Health Scotland', 'jurisdiction': ['GB-GBN'], 'accessService': 'Scottish National Data Safe Haven - https://www.isdscotland.org/Products-and-Services/eDRIS/'}}","{'temporal': {'accrualPeriodicity': 'MONTHLY', 'timeLag': 'OTHER', 'startDate': '2017-04-01', 'distributionReleaseDate': '2020-09-01'}}",2020-01-10T22:06:55Z,[{}],7.0.0,,2021-11-04T10:22:16Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Looked After Children Wales', 'publisher': {'name': 'SAIL', 'memberOf': 'ALLIANCE', 'contactPoint': 'SAILDatabank@swansea.ac.uk'}, 'keywords': ['Children', 'Welsh', 'SAIL'], 'doiName': 'In Progress', 'abstract': 'Information about looked after children. Includes demographic and episode level information.', 'contactPoint': 'SAILDatabank@swansea.ac.uk'}",cfdafacb-48f0-4ad8-9f20-193a5eec2da4,"{'pathway': 'Administrative. 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Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'}}","{'origin': {'source': 'EPR', 'purpose': 'ADMINISTRATIVE', 'collectionSituation': 'COMMUNITY'}, 'temporal': {'endDate': '2018-03-31', 'timeLag': '6 MONTHS PLUS', 'startDate': '1999-06-21', 'accrualPeriodicity': 'ANNUAL', 'distributionReleaseDate': '2019-12-11'}}",2020-06-01T14:56:00Z,,3.0.0,"{'qualifiedRelation': ['Yes. 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"{'title': ""King's Health Partners Cancer Biobank"", 'doiName': 'Not Available', 'contactPoint': 'cheryl.gillett@kcl.ac.uk', 'keywords': ['UKCRC Tissue Directory', 'Malignant tumour of breast', ""King's Health Partners"", 'Cancer', 'Biobank'], 'publisher': {'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE', 'contactPoint': 'cheryl.gillett@kcl.ac.uk'}, 'abstract': 'Collection of samples and data across the following diseases: Malignant tumour of breast.'}",a218d0b4-0273-4a04-ba17-c01dae6dcf33,"{'spatial': 'England', 'typicalAgeRange': '15-150', 'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM', 'TISSUE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '48959c3c-3d39-4bfe-a426-bd7ba10f6d5e', '3.0.0': 'da9cdc4c-2790-47f4-b4b5-76e87ce450ae', '2.0.0': '593a5263-e2b5-4433-81c1-30b35a520488', '1.0.0': '068cb414-658f-45f2-86c8-35e65bc9bede', 'latest': 'da9cdc4c-2790-47f4-b4b5-76e87ce450ae'}","{'description': ""King's Health Partners Cancer Biobank collects blood, tissue and urine samples from patients with a range of cancer types who are referred to Guy's & St Thomas' NHS Trust. The Breast Biobank alone has been providing tumour samples with matching clinico-pathological data for research studies since the 1970's. Other tumour types including lung, head and neck, prostate, UGI, bladder, colorectal, lymphoma and MPD have been added since 2008. The Biobank is accessible to both academic groups and commercial companies."", 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",da9cdc4c-2790-47f4-b4b5-76e87ce450ae,https://web.www.healthdatagateway.org/dataset/da9cdc4c-2790-47f4-b4b5-76e87ce450ae,"{'access': {'dataProcessor': 'Not Applicable', 'accessRequestCost': 'Not specified', 'jurisdiction': 'GB-ENG', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'accessRights': 'Please contact the publisher using Contact Point details provided.', 'dataController': ""Guy's & St Thomas' NHS Trust""}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}}","{'temporal': {'startDate': '1975-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:05:23Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T16:03:08Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Vascular Registry Audit  - Lower Limb Amputation clinical dataset', 'publisher': {'name': 'HQIP', 'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d23'}, 'contactPoint': 'datasharing@hqip.org.uk', 'keywords': ['NVR', 'Vascular', 'Registry', 'Carotid', 'Lower', 'Limb', 'Amputation', 'Clinical'], 'abstract': 'The dataset contains continuously ascertained patient-level data for patients undergoing lower limb amputation in NHS hosptials in England, Wales, Scotland and Northern Ireland. 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"{'title': 'UK Lung Volume Reduction Surgery', 'doiName': 'In Progress', 'publisher': {'memberOf': 'HUB', 'contactPoint': 'breathe.saildatabank@swansea.ac.uk', 'name': 'BREATHE'}, 'keywords': ['BREATHE', 'LUNG VOLUME REDUCTION'], 'contactPoint': 'breathe.saildatabank@swansea.ac.uk', 'abstract': 'An observational study comparing the effectiveness of lung volume reduction techniques for COPD.'}",9f98a674-12f6-42f4-b1a5-322b3b75eef1,"{'spatial': 'United Kingdom', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '57471e95-77e1-4381-823e-4f9a93e51d08', '2.0.0': 'db89a123-0402-4962-8a8f-78557ba4d84f', '1.0.0': 'def6669b-0fac-485c-84b2-2ea83ec31123', 'latest': 'db89a123-0402-4962-8a8f-78557ba4d84f'}","{'description': 'Many people with chronic obstructive pulmonary disease (COPD) remain very breathless and limited. In some patients, with the appropriate pattern of emphysema, an operation called lung volume reduction surgery is effective at removing the worst affected area of lung. New techniques have been developed where emphysema can be treated using a fibre-optic camera called a bronchoscope. Trials have shown that using a bronchoscope to place endobronchial valves into the airways can be very effective in carefully selected patients and the technique is now being adopted in hospitals across the UK.\n\nThis study will collect data from people undergoing these procedures at hospitals across the UK to evaluate how well they work in practice and what factors at baseline influence response.\n\nBaseline, three month and 12 month follow up data will be collected. This will include lung function data, measures of exercise capacity, questionnaires about health status and CT scan results.\n\nQuestions addressed will include:\n\n(1) What lung function improvement is seen in clinical practice?\n\n(2) What factors determine who is most likely to respond?\n\n(3) How safe are the procedures and what is the rate of complications?\n\n(4) What proportion of people undergoing bronchoscopic procedures require repeat procedures or surgery subsequently?\n\n(5) Does long term survival differ between people undergoing the different treatments?\n\nThe study is supported by The British Lung Foundation and sponsored by Imperial College, London. By building collaboration, the establishment of the network will also produce a structure that will make evaluation of future bronchoscopic techniques easier bringing innovative treatments into play more quickly.', 'isPartOf': 'No Group'}",db89a123-0402-4962-8a8f-78557ba4d84f,https://web.www.healthdatagateway.org/dataset/db89a123-0402-4962-8a8f-78557ba4d84f,"{'formatAndStandards': {'vocabularyEncodingScheme': 'LOCAL', 'language': 'en', 'conformsTo': 'LOCAL', 'format': ['SQL']}, 'access': {'accessRights': ['In Progress'], 'dataProcessor': 'HUB > BREATHE', 'deliveryLeadTime': '2-6 MONTHS', 'jurisdiction': 'GB', 'dataController': 'Imperial College London', 'accessRequestCost': 'Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'Imperial College London'}}","{'temporal': {'startDate': '2013-01-01', 'distributionReleaseDate': '2016-10-07', 'endDate': '2016-10-07', 'accrualPeriodicity': 'DAILY'}}",2020-04-27T09:08:22Z,,2.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-04-14T08:24:47Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'NHS Tayside, A&E Drugs given during an A&E visit', 'publisher': {'memberOf': 'ALLIANCE', 'contactPoint': 'hicsupport@dundee.ac.uk', 'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE'}, 'keywords': ['Accident and Emergency'], 'contactPoint': 'hicsupport@dundee.ac.uk', 'abstract': 'Accident and Emergency episode level data. June 2003 - current.'}",acfbef89-344c-49a5-8079-7344f4316e0f,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '40cafc92-f5c3-4883-a7ee-d6aa5f18a5a0', '2.0.0': 'dba474a3-90c4-423d-beb0-5ef79c490d24', '1.0.0': 'e8f5b1b5-2c08-439a-b337-70b454aa40f3', 'latest': 'dba474a3-90c4-423d-beb0-5ef79c490d24'}","{'description': None, 'isPartOf': 'University of Dundee Health Informatics Centre'}",dba474a3-90c4-423d-beb0-5ef79c490d24,https://web.www.healthdatagateway.org/dataset/dba474a3-90c4-423d-beb0-5ef79c490d24,"{'access': {'accessRights': 'https://www.dundee.ac.uk/hic/governanceapprovalsupport/', 'deliveryLeadTime': 'OTHER'}}",,2020-06-03T12:56:44Z,,2.0.0,,2021-01-28T16:46:44Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'The Consequence of Respiratory Syncytial Virus (RSV) Infection in Young Infants', 'publisher': {'memberOf': 'HUB', 'name': 'BREATHE', 'identifier': '607db9c2e1f9d3704d570ce6'}, 'abstract': 'This data set contains the information related to the current and previous respiratory health status of the children which was collected over a 12 month period through active household visits and objective measurements.', 'contactPoint': 'RESPIRE@ed.ac.uk', 'keywords': ['RESPIRE', ' RSV', ' Follow-up', ' Bangladesh', ' India', ' Pakistan', ' low-income', ' Asthma', ' Wheeze', ' Spirometry', ' exercise challenge test']}",51d41006-727e-43d4-bdb6-f8b427c295c6,"{'spatial': 'https://www.geonames.org/countries/GB/united-kingdom.html', 'typicalAgeRange': '6-8'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'cc382a10-e8c7-492e-b4cc-6b34f80bc3c8', '2.0.0': 'dbcf49c1-f23c-4bb8-8c4f-6fc4e996ff97', '0.0.1': 'deef7616-b14d-46d5-8a1f-b9366abc7913', 'latest': 'dbcf49c1-f23c-4bb8-8c4f-6fc4e996ff97'}","{'description': 'Each year, an estimated 33.1 million episodes of RSV-associated acute lower respiratory infections occur among under-five children globally, leading to 3.2 million hospitalisations and 118,200 deaths. The burden of RSV-associated severe acute lower respiratory tract infection is ten times higher in developing countries compared to that in developed countries (36.1 per 1000 life birth vs 3.2 per 1000 life birth, respectively). \n\nIn addition to acute mortality and morbidity, RSV infection has a long-term effect on children’s health. RSV infection can induce a state of bronchial hyper-reactivity that has an association with the development of asthma in later life, which, in turn, is a significant risk factor of chronic obstructive pulmonary disease in adulthood.\n\nIn this study, we are collecting longitudinal data of a group of 2,274 children aged between 6-8 years in three South Asian countries, namely Bangladesh, India and Pakistan.  Among these children, 402 had RSV infection in their first two months of life; the remaining 1,873 children did not have such conditions at the same period confirmed by laboratory testing.\n\nHealth workers are routinely visiting households of eligible children. Children whose parents provided consent are visited three times in one year period, at baseline, after six months and the end of the year. In the first visit, a research assistant explained the study objectives and procedures to a family member (primarily the mother) of the eligible children to provide consent for enrolling the children in the study.  The parents of the consented children were being interviewed using a structured questionnaire to record the current and previous health status of children. The asthma sign and symptoms were recorded using a questionnaire designed following the International Study of Allergies and Asthma in Childhood (ISAAC). During the second and third visits, similar questionnaires of the first visit are being planned to use for data collection. All children are intended to assess by a research physician to record the physical growth, lung function, exercise tolerance, and blood eosinophil level.\n\nFor more information please see: https://www.ed.ac.uk/usher/respire/acute-respiratory-disorders/rsv-infection', 'isPartOf': 'RESPIRE'}",dbcf49c1-f23c-4bb8-8c4f-6fc4e996ff97,https://web.www.healthdatagateway.org/dataset/dbcf49c1-f23c-4bb8-8c4f-6fc4e996ff97,"{'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['RESPIRE']}, 'access': {'dataProcessor': 'NOT APPLICABLE', 'jurisdiction': ['GB-ENG', 'GB-SCT', 'GB-WLS'], 'accessService': 'Access service varies on a project-by-project basis. Contact the RESPIRE team for further in formation', 'deliveryLeadTime': 'VARIABLE', 'dataController': 'BREATHE', 'accessRights': ['https://www.ed.ac.uk/usher/respire']}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL'], 'format': ['text']}}","{'origin': {'collectionSituation': ['COMMUNITY'], 'purpose': ['STUDY']}, 'temporal': {'distributionReleaseDate': '2021-01-31', 'timeLag': 'NOT APPLICABLE', 'endDate': '2021-01-31', 'startDate': '2018-01-08', 'accrualPeriodicity': 'STATIC'}}",2021-04-09T15:30:18Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '1', 'observationDate': '31/01/2021', 'measuredProperty': 'Count'}]",2.0.0,,2021-10-19T15:33:57Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Outpatient Dataset (OPDW)', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'SAIL', 'identifier': '5f3f98068af2ef61552e1d75'}, 'keywords': ['Outpatient', 'Dataset', 'SAIL', 'NCS', 'National Core Study', 'COVID-19', 'OPDW', 'core'], 'abstract': 'Attendance information for all hospital outpatient appointments.'}",d331159b-b286-4ab9-8b36-db39123ec229,"{'spatial': ['https://www.geonames.org/2634895/wales.html'], 'pathway': 'Single tier of care - Secondary care outpatients', 'followup': '1 - 10 YEARS', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'10.0.0': 'c5851b52-a5bb-4a2a-80ba-0bed3b2e7804', '11.0.0': 'dc5507d0-807e-4981-906b-731690a5e085', 'latest': 'dc5507d0-807e-4981-906b-731690a5e085'}","{'description': 'Attendance information for all NHS Wales hospital outpatient appointments.\n\nThe data are collected and coded at each hospital. Administrative information is collected from the central PAS (Patient Administrative System), such as specialty of care, appointment date and attendance status.\n\nThis dataset contains all scheduled outpatient appointments, including those where the patient failed to attend.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/'], 'isPartOf': 'NOT APPLICABLE'}",dc5507d0-807e-4981-906b-731690a5e085,https://web.www.healthdatagateway.org/dataset/dc5507d0-807e-4981-906b-731690a5e085,"{'access': {'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'jurisdiction': ['GB'], 'deliveryLeadTime': '2-6 MONTHS', 'dataController': 'SAIL Databank', 'accessRights': ['https://saildatabank.com/application-process/'], 'dataProcessor': 'SAIL Databank', 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.']}, 'formatAndStandards': {'language': ['en'], 'conformsTo': ['LOCAL'], 'format': ['SQL database table'], 'vocabularyEncodingScheme': ['LOCAL', 'OPCS4', 'NHS NATIONAL CODES', 'NHS WALES NATIONAL CODES', 'ICD10']}, 'usage': {'isReferencedBy': ['Carter et al., (2019); Identifying cerebral palsy from routinely-collected data in England and Wales. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6556471/'], 'resourceCreator': ['NHS Wales’ Informatics Service (NWIS)'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION']}}","{'origin': {'collectionSituation': ['OUTPATIENTS'], 'purpose': ['CARE', 'AUDIT', 'ADMINISTRATIVE', 'FINANCIAL', 'OTHER'], 'source': ['EPR']}, 'temporal': {'accrualPeriodicity': 'QUARTERLY', 'timeLag': '2-4 WEEKS', 'endDate': '2021-07-01', 'distributionReleaseDate': '2019-09-17', 'startDate': '2004-04-20'}}",2021-09-27T13:14:23Z,"[{'observedNode': 'EVENTS', 'measuredValue': '3000000', 'observationDate': '01/09/2021', 'measuredProperty': 'Count'}]",11.0.0,"{'derivation': ['Not Available'], 'tools': ['https://conceptlibrary.saildatabank.com/'], 'qualifiedRelation': ['Yes. 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"{'title': 'NHS Greater Glasgow & Clyde Bio-Repository', 'publisher': {'contactPoint': 'clare.orange@ggc.scot.nhs.uk', 'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY'}, 'keywords': ['Mesothelioma (malignant', 'Bio-Repository', 'UKCRC Tissue Directory', 'Malignant tumour of breast', 'clinical disorder)', 'NHS Greater Glasgow & Clyde', 'Malignant tumour of colon'], 'doiName': 'Not Available', 'contactPoint': 'clare.orange@ggc.scot.nhs.uk', 'abstract': 'Collection of samples and data across the following diseases: Malignant tumour of breast, Malignant tumour of colon, Mesothelioma (malignant, clinical disorder).'}",762976cc-83d0-4b31-a879-37f87f947406,"{'spatial': 'Scotland', 'physicalSampleAvailability': ['PLASMA', 'SERUM', 'TISSUE', 'WHOLE BLOOD'], 'typicalAgeRange': '15-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'db60cf6b-3d04-4212-9b12-fa47aec54980', '3.0.0': 'dcb4c87b-5884-41c0-b9af-d7d094dd0922', '1.0.0': '997a68e5-dafe-4225-8533-2f5ca56c90e0', '2.0.0': '2e20b776-a0bc-44ed-9882-ad63855a0ec4', 'latest': 'dcb4c87b-5884-41c0-b9af-d7d094dd0922'}","{'description': 'The NHS Greater Glasgow & Clyde Bio-repository is part of NHS Scotland NHS Research Scotland Infrastructure. There is a network of Bio-repository across Scotland designed to encourage use of tissue in research and boost availability of tissue across Scotland.\nEach Bio-repository node holds the responsibility for tissue governance for local and partner Health Boards with a main focus on facilitating access to surplus diagnostic and surgical tissue for use in research.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",dcb4c87b-5884-41c0-b9af-d7d094dd0922,https://web.www.healthdatagateway.org/dataset/dcb4c87b-5884-41c0-b9af-d7d094dd0922,"{'access': {'accessRights': 'Please contact the publisher using Contact Point details provided.', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED.', 'dataProcessor': 'Not Applicable', 'jurisdiction': 'GB-SCT', 'dataController': 'NHS Greater Glasgow & Clyde', 'accessRequestCost': 'Not specified'}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2000-01-01', 'distributionReleaseDate': '2019-01-11'}}",2020-01-13T17:16:33Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T16:09:12Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'NIHR BioResource: Health and Lifestyle Questionnaire', 'abstract': 'Most NIHR BioResource participants complete a self-report form on recruitment.  Typically this contains e.g. height, weight, smoking history and alcohol consumption, but also includes questions relating to disease history and current medications', 'publisher': {'name': 'NIHR BIORESOURCE', 'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d3f'}, 'keywords': ['recall', 'health', 'lifestyle', 'feasibility', 'cohort discovery'], 'contactPoint': 'nbr@bioresource.nihr.ac.uk'}",321e3ad6-96b9-4f19-bbc4-d06dfe2a59d5,"{'spatial': ['United Kingdom (https://www.geonames.org/2635167/united-kingdom.html)'], 'followup': '1 - 10 YEARS', 'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM'], 'typicalAgeRange': '18-85'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '1c3f55ec-d6fc-477e-a1b7-4b8dd43323c6', '2.0.0': 'dcb8a41b-f2ac-4ee1-9520-b7ef7214e9d6', 'latest': 'dcb8a41b-f2ac-4ee1-9520-b7ef7214e9d6'}","{'description': 'The NIHR Bioresource consists of several groups of participants: ~70k from the general population and blood donors (COMPARE, INTERVAL and STRIDES studies); ~19k with one of ~50 rare diseases (RD) including a ~5k pilot for GEL; ~30k with Inflammatory Bowel Disease (IBD) which include the members of Gut Reaction, the Health Data Research Hub for IBD; and ~20k with Anxiety or depression (GLAD study). It intends to extend recruitment in all areas, and to other rare and common disease groups, with a target of ~300k by 2022.  The NIHR BioResource acquires a self-reported health and lifestyle questionnaire from all participants at recruitment, save those recruited in rare disease clinics. Typically variables include height, weight, smoking history and alcohol consumption, with addition of questions relating to disease history and current medications. This is used to pre-screen or match participants when inviting them to take part in experimental medicine studies. De-identified versions of this data are available to researchers investigating the feasibility of future studies.', 'isPartOf': 'Not Applicable'}",dcb8a41b-f2ac-4ee1-9520-b7ef7214e9d6,https://web.www.healthdatagateway.org/dataset/dcb8a41b-f2ac-4ee1-9520-b7ef7214e9d6,"{'usage': {'isReferencedBy': ['Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'resourceCreator': ['NIHR BioResource. Acknowledgement text: ""We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.""'], 'dataUseLimitation': ['RESEARCH USE ONLY']}, 'formatAndStandards': {'conformsTo': ['I2B2'], 'format': ['text/csv'], 'language': ['en'], 'vocabularyEncodingScheme': ['SNOMED CT']}, 'access': {'accessService': 'Some de-identified data may be released to researchers in a platform-independent filetype (e.g. CSV). However, access to any data acquired via NHS Digital is subject to strict restrictions governing where data may be accessed and from which locale - access is currently via an experimental safe haven built in Microsoft Azure.', 'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)', 'deliveryLeadTime': '2-6 MONTHS', 'accessRights': ['https://bioresource.nihr.ac.uk/using-our-bioresource'], 'accessRequestCost': ['https://bioresource.nihr.ac.uk/using-our-bioresource/industry-researchers/industry-bioresource-usage-costs/'], 'jurisdiction': ['GB-GBN'], 'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)'}}","{'origin': {'purpose': ['STUDY'], 'collectionSituation': ['CLINIC', 'COMMUNITY', 'HOME'], 'source': ['ELECTRONIC SURVEY', 'PAPER BASED']}, 'temporal': {'accrualPeriodicity': 'QUARTERLY', 'startDate': '2002-05-20', 'timeLag': '1-2 MONTHS', 'distributionReleaseDate': '2021-03-31'}}",2021-02-21T19:14:10Z,"[{'observedNode': 'PERSONS', 'measuredValue': '50224', 'disambiguatingDescription': 'Participants who returned health and lifestyle questionnaires', 'observationDate': '26/11/2020', 'measuredProperty': 'COUNT'}]",2.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['ALL', 'COVID-19 SARI-Watch (formerly CHESS)', 'Civil Registration - Deaths', 'Covid-19 Second Generation Surveillance System', 'Emergency Care Data Set (ECDS)', 'Hospital Episode Statistics Accident and Emergency', 'Hospital Episode Statistics Admitted Patient Care', 'Hospital Episode Statistics Critical Care', 'Hospital Episode Statistics Outpatients', 'Intensive Care National Audit & Research Centre (ICNARC) Case Mix Programme (https://www.icnarc.org/Our-Audit/Audits/Cmp/About)']}",2022-04-01T15:23:16Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 4, 'structuralMetadata.tableName': 4, 'structuralMetadata.tableDescription': 4, 'structuralMetadata.dataElementsCount': 51, 'structuralMetadata.columnName': 51, 'structuralMetadata.columnDescription': 51, 'structuralMetadata.dataType': 51, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'bdc9d7b9-c509-4069-a03f-b7406e01f526', 'description': 'Consent', 'name': 'DDI::Consent', 'dataElementsCount': 2, 'dataElements': '85679ddf-983b-47ed-b6fa-fe4192ea2469, 068313fe-68a0-451c-94cd-47fbb8c56728'}, {'id': 'b0a96a67-5861-445b-a1e0-1e297a34bba9', 'description': 'Clinical Conditions', 'name': 'DDI::Clinical', 'dataElementsCount': 37, 'dataElements': '66c65804-eaee-4dbb-811f-c41e99edd197, 2bbb5ce7-8680-4388-bff2-be28ba111ad2, e1b1016c-2c3c-41ef-9d77-fd14345c788f, 13f0be28-502f-4358-8ecd-c42959a368b3, 6b329c3a-d20c-4e23-816d-a1b75d196b11, f4ed79ed-9949-4a65-84b3-ba7565cf13a3, e5086ab6-ddf1-402d-84a9-47e8ecb4f0dc, 0828c386-c7c6-4cfa-9e0d-4db47e3a34ae, 3d7b42eb-29d3-4873-a4fe-5fcfc67a1073, 3fb20d15-7a4d-4bf9-b484-ff85bfe442fa, 5ff34d91-df26-4bdd-83a9-a4ef8da6efaf, 5e888605-48ba-4ce3-ab1b-c6a72a306e84, 366d45aa-4214-446e-96fd-e2cfd4364bae, 9275feb3-c5af-4f51-9726-055b8881e3d7, 5a75cc35-f009-4ddd-abc7-350c735a26d6, d1a29f03-dd9f-4775-a540-5f29be834fed, 6a945358-4451-4758-94fd-1af7ec7ea436, c57f1cff-22a5-4aa2-aa75-8dd3132ae380, 2bcfd1f3-6524-49eb-902f-5afd01724775, a57c6186-9431-4bb1-a98c-b1b37e7540e9, 9c3ca209-1bc4-49c4-bc1c-f514a6470337, 07f608c4-ef4c-4ae1-bea7-a2d17e072506, 707feba0-739b-4501-aaf9-8aea6c41e534, ae81d9c0-02fd-4b50-af42-46a1a9ce948e, f3d708dd-76d7-4f22-bfe3-a74cc43379ca, a0118010-9d0c-4048-ba64-9a9558fa9f91, db696aa1-819e-472c-bf0c-a75b7b3b7e4e, 1f565670-adc5-49e0-9593-e56cfab3b039, 5858a202-6f5b-45b9-bcb8-320122e2c836, c07edc5a-fca8-4257-baeb-1e735edc8242, 529d49e2-8eb2-49bb-9f06-ec08a44c17c3, 0dfe8045-7c44-4109-a358-3b124a9c1388, c514b6ea-9cb2-44c6-ab39-ad5f2508fadc, 763b3548-9776-45cb-8e2a-a91c701d26d7, 24e68e39-3ede-4731-b8ad-90e55c8ca32a, 4cf6ce06-fc20-413a-b4e0-7dbca6267830, 1e6629c2-9aa4-4ead-b4b1-f6478fe06026'}, {'id': '18509575-a526-4ef6-ab6b-9364284cf582', 'description': 'Demographics', 'name': 'DDI::Demographics', 'dataElementsCount': 3, 'dataElements': '6be8f9c9-2220-4734-b9e0-adc8801037e7, cd99fdf6-5afd-46e1-a2af-e9932a2981de, c7ef91b7-f068-462c-a48d-d8431c90c02e'}, {'id': 'a0fdded3-e04c-43ea-8e81-d23aaa604a3e', 'description': 'Health & Lifestyle', 'name': 'DDI::HLQ', 'dataElementsCount': 9, 'dataElements': '7f117e3c-dfac-4c23-b778-d75191955816, 13e97a19-e265-4ae7-9a1c-bdfac4e594bb, 2baaf516-eaad-492d-967e-bf9b020d8dea, be75dd72-09a8-4453-b092-fc144ace86d8, 86d6cf9a-7255-4898-bfae-f09edf14e41d, 938df05e-6c33-42dc-971d-b12f6c795ef1, 12b9f7d0-bb2d-4f86-b7dc-7cb1f5076c52, 8fbdda63-4b15-4ccb-8131-48e59e02f7ac, 6cd791ef-52ca-4194-b982-9337d5a1d314'}]}"
"{'title': 'Prescribing', 'contactPoint': 'hicsupport@dundee.ac.uk', 'publisher': {'identifier': '607db9c4e1f9d3704d570d1f', 'memberOf': 'ALLIANCE', 'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE'}, 'abstract': 'Community-dispensed primary care prescription data.', 'keywords': ['medicine', 'Prescribing', 'Prescriptions', 'drugs', 'Scotland', 'Tayside', 'Fife', 'HIC']}",6d044471-62d2-4190-b315-503f77d33ef2,"{'pathway': 'Primary care prescription data limited to Tayside and Fife regions in Scotland only.', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2636157/tayside-region.html', 'http://www.geonames.org/2649469/fife.html'], 'followup': 'UNKNOWN'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '64640c6f-bc49-419f-bb2c-13c07d94adc9', '4.0.0': 'dcd6f957-1fcc-481a-bbd2-89abfe933449', '0.0.1': '8e122714-9f0c-43a1-a2fe-62a7365bab4a', '2.0.0': '3e13c6f0-2760-4ece-b047-77d750d9cdbd', '3.0.0': '1afb9620-da7d-4098-85fc-185334b5a369', 'latest': 'dcd6f957-1fcc-481a-bbd2-89abfe933449'}","{'description': 'Primary care prescriptions for patients in the Tayside and Fife regions in Scotland. 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"{'title': 'Decode-ME', 'keywords': ['Alleviate', 'Pain', 'Pain Hub', 'Fatigue'], 'contactPoint': 'Diana.Garcia@ed.ac.uk', 'abstract': 'Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic disease affecting an estimated 250,000 people in the UK. DecodeME is the world’s largest ME/CFS genetic study. It has Patient and Public Involvement at its heart.', 'publisher': {'identifier': '613b2174b8b58d157f531e7a', 'memberOf': 'HUBS', 'name': 'ALLEVIATE'}}",a71d0b2a-620c-4c04-b7bb-45843461db9f,"{'typicalAgeRange': '0-150', 'spatial': ['https://www.geonames.org/2635167/united-kingdom-of-great-britain-and-northern-ireland.html', '']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'dd6e4344-9cee-41f3-8062-6bb9cdfda012'},"{'description': 'DecodeME aims to find genetic causes of why people become ill with ME/CFS. It aims to recruit 25,000 participants in the UK who have been diagnosed with ME/CFS by a health professional. Participants are assessed according to Canadian Consensus and Institute of Medicine (NAM) criteria. Participant data has been collected using the CureME Questionnaire with additional questions. 5,000 of these participants will have been diagnosed with ME/CFS following COVID-19 infection. Phenotype data include information relating to post-exertional malaise, fatigue and pain symptoms.'}",dd6e4344-9cee-41f3-8062-6bb9cdfda012,https://web.www.healthdatagateway.org/dataset/dd6e4344-9cee-41f3-8062-6bb9cdfda012,"{'access': {'dataController': 'University of Edinburgh', 'jurisdiction': ['GB'], 'accessRights': ['https://www.decodeme.org.uk/']}, 'formatAndStandards': {'format': ['questionnaire'], 'conformsTo': ['OTHER'], 'language': ['en'], 'vocabularyEncodingScheme': ['OTHER']}, 'usage': {'resourceCreator': ['University of Edinburgh']}}","{'temporal': {'startDate': '2021-10-26', 'timeLag': 'NOT APPLICABLE', 'accrualPeriodicity': 'STATIC'}, 'origin': {'purpose': ['STUDY']}}",2021-10-29T09:16:23Z,"[{'observedNode': 'PERSONS', 'measuredValue': '25000', 'disambiguatingDescription': 'The study aims to recruit 25,000 patients in the UK who have been diagnosed with ME/CFS by a health professional', 'observationDate': '26/10/2021', 'measuredProperty': 'Count'}, {'observedNode': 'PERSONS', 'measuredValue': '5000', 'disambiguatingDescription': 'The study aims to recruit  5,000 of participants who have been diagnosed with ME/CFS following COVID-19 infection.', 'observationDate': '26/10/2021', 'measuredProperty': 'Count'}, {'observedNode': 'PERSONS', 'measuredValue': '5000', 'disambiguatingDescription': 'The study aims to recruit  5,000 of participants who have been diagnosed with ME/CFS following COVID-19 infection.', 'observationDate': '26/10/2021', 'measuredProperty': 'Count'}]",1.0.0,,2021-10-29T09:16:23Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'MesobanK', 'keywords': ['Mesothelioma (malignant', 'clinical disorder)', 'UKCRC Tissue Directory', 'MesobanK'], 'abstract': 'Collection of samples and data across the following diseases: Mesothelioma (malignant, clinical disorder).', 'publisher': {'contactPoint': 'sallyanne.meakins@nhs.net', 'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY'}, 'doiName': 'Not Available', 'contactPoint': 'sallyanne.meakins@nhs.net'}",b03835b7-7408-49a0-a9aa-ea405f9855c9,"{'physicalSampleAvailability': ['CANCER CELL LINES', 'DNA', 'PLASMA', 'SERUM', 'TISSUE'], 'spatial': 'England', 'typicalAgeRange': '40-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'fa624ba9-382b-4461-a410-0710531e3034', '3.0.0': 'ddbc149a-db56-41de-bd2c-3624149f6e7e', '0.0.1': '33fd4a37-6896-45b5-a853-944f6114527a', '2.0.0': '5ad32bfa-8d4b-45cb-aa10-3b0a4bcfd258', 'latest': 'ddbc149a-db56-41de-bd2c-3624149f6e7e'}","{'description': 'A global solution to a global problem.\nMesobank is a Research Tissue Bank dedicated to the study of mesothelioma. We provide a comprehensive sample and data set from patients with mesothelioma and support biomedical research directly concerned with asbestos related disease undertaken within the UK, EEA, USA, Canada, Australia and New Zealand..', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",ddbc149a-db56-41de-bd2c-3624149f6e7e,https://web.www.healthdatagateway.org/dataset/ddbc149a-db56-41de-bd2c-3624149f6e7e,"{'access': {'jurisdiction': 'GB-ENG', 'accessRequestCost': 'Not specified', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED.', 'dataController': 'Papworth Hospital NHS Foundation Trust', 'dataProcessor': 'Not Applicable', 'accessRights': 'Please contact the publisher using Contact Point details provided.'}, 'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}}","{'temporal': {'startDate': '2014-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:16:31Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:06:46Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'NIMRAD-TRANS', 'doiName': 'Not Available', 'abstract': 'Collection of samples and data across the following diseases: Malignant neoplasm of upper respiratory tract (disorder).', 'contactPoint': 'joely.irlam@ics.manchester.ac.uk', 'keywords': ['FFPE', 'HNSCC', 'UKCRC Tissue Directory', 'NIMRAD-TRANS', 'Malignant neoplasm of upper respiratory tract (disorder)'], 'publisher': {'name': 'TISSUE DIRECTORY', 'contactPoint': 'joely.irlam@ics.manchester.ac.uk', 'memberOf': 'ALLIANCE'}}",039b55f7-d416-49ab-9bdb-4ff7dbc733df,"{'typicalAgeRange': '40-150', 'physicalSampleAvailability': ['CDNA/MRNA', 'MICRORNA', 'TISSUE', 'WHOLE BLOOD'], 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '35619ee5-40e9-4f91-872b-01be50402aae', '3.0.0': 'ddd49721-ff49-4f68-b3f5-e95a417fb0ac', '1.0.0': 'fde89fc1-e810-4624-9550-f012fc85b167', '2.0.0': '3784d68e-d213-43a7-bf30-8f4d34de022c', 'latest': 'ddd49721-ff49-4f68-b3f5-e95a417fb0ac'}","{'description': 'A retrospective sample collection of formalin fixed paraffin embedded (FFPE) pre-treatment diagnostic biopsies from patients with Head and Neck Squamous Cell carcinoma (HNSCC) enrolled on the NIMRAD trial.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",ddd49721-ff49-4f68-b3f5-e95a417fb0ac,https://web.www.healthdatagateway.org/dataset/ddd49721-ff49-4f68-b3f5-e95a417fb0ac,"{'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}, 'access': {'jurisdiction': 'GB-ENG', 'dataProcessor': 'Not Applicable', 'accessRequestCost': 'Not specified', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED.', 'dataController': 'University of Manchester', 'accessRights': 'Please contact the publisher using Contact Point details provided.'}}","{'temporal': {'startDate': '2014-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:16:34Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:09:19Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'VIKING GENES', 'doiName': '10.1101/2021.10.15.21265045', 'contactPoint': 'accessQTL@ed.ac.uk', 'publisher': {'identifier': '607db9c7e1f9d3704d570d97', 'memberOf': 'OTHER', 'name': 'VIKING GENES'}, 'keywords': ['Scotland', 'Orkney', 'Shetland', 'Isolate', 'Multiomics'], 'abstract': 'Viking Genes is a research project consisting of three population cohorts, VIKING II, VIKING Health Study Shetland and the Orkney Complex Disease Study (ORCADES). It aims to discover the genes and variants that influence the risk of complex diseases.'}",43636f80-27fd-43d0-8556-d0a2de0cd819,"{'typicalAgeRange': '16-99', 'pathway': 'Data is from healthy volunteers with ancestry from the Northern isles of Scotland.', 'physicalSampleAvailability': ['DNA'], 'spatial': ['https://www.geonames.org/2640923/orkney-islands.html', 'https://www.geonames.org/2638010/shetland-islands.html'], 'followup': '> 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'de794427-edf8-4c9e-b089-9d7b56d01373', '1.0.0': 'ddf35f0d-ca89-4f74-bbdd-65d1a84b38ca', 'latest': 'ddf35f0d-ca89-4f74-bbdd-65d1a84b38ca'}","{'description': 'The dataset is described on the study website at https://www.ed.ac.uk/viking\nThe data dictionary for the VIKING II study has DOI https://doi.org/10.7488/ds/3145.', 'associatedMedia': ['https://www.facebook.com/vikinggene/', 'https://www.ed.ac.uk/viking', ''], 'isPartOf': 'Multi-omics Consortium'}",ddf35f0d-ca89-4f74-bbdd-65d1a84b38ca,https://web.www.healthdatagateway.org/dataset/ddf35f0d-ca89-4f74-bbdd-65d1a84b38ca,"{'usage': {'dataUseLimitation': ['RESEARCH USE ONLY'], 'dataUseRequirements': ['COLLABORATION REQUIRED'], 'resourceCreator': ['DNA extractions were performed at the Edinburgh \nClinical Research Facility, University of Edinburgh. We would like to acknowledge the invaluable contributions of the research nurses in the Northern Isles, the administrative team at the University of Edinburgh and the people of Orkney and Shetland.']}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL'], 'format': ['multipart']}, 'access': {'accessRights': ['https://www.ed.ac.uk/viking/data-access'], 'jurisdiction': ['GB-SCT'], 'dataController': 'The University of Edinburgh', 'accessService': 'In progress', 'deliveryLeadTime': 'VARIABLE'}}","{'origin': {'source': ['OTHER'], 'collectionSituation': ['CLINIC', 'HOME'], 'purpose': ['STUDY']}, 'temporal': {'timeLag': 'VARIABLE', 'endDate': '2021-04-01', 'accrualPeriodicity': 'IRREGULAR', 'startDate': '2003-05-20'}}",2021-04-01T15:16:00Z,"[{'measuredValue': '8000', 'disambiguatingDescription': 'The 8000 research volunteers are people with ancestry from the Northern Isles of Scotland, UK. This is defined as having two or more immediate grandparents from Orkney or Shetland.', 'observedNode': 'PERSONS', 'observationDate': '01/03/2005', 'measuredProperty': 'Count'}]",1.0.0,,2021-12-02T09:42:01Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': ""Children's Health in London and Luton (CHILL)"", 'publisher': {'contactPoint': 'breathe.saildatabank@swansea.ac.uk', 'name': 'BREATHE', 'memberOf': 'HUB'}, 'contactPoint': 'breathe.saildatabank@swansea.ac.uk', 'abstract': ""CHILL cohort was established in 2018/19 and comprises 3,225 primary schoolchildren in central London and Luton. The cohort will assess the impact of London's Ultra Low Emission Zone on respiratory health."", 'keywords': ['CHILD HEALTH', 'Luton', 'CHILL', 'AIR POLLUTION', 'Childre', 'London', 'COHORT', 'BREATHE'], 'doiName': 'In Progress'}",722be723-04bd-48b4-923b-e7d393f0c22b,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '5-14', 'spatial': 'London and Luton', 'followup': '1 - 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'e363e9b4-f443-4929-8598-76b00dfe60d4', '4.0.0': 'de4b46f5-1591-442d-a896-6e0d91657c01', '1.0.0': '39e360c1-3efa-4b49-9643-4fd8f160c359', '2.0.0': '957329a0-6f7f-4df7-ad46-1aa4be1a507d', '3.0.0': '868613e0-23cc-4f8a-82da-18984589afd7', 'latest': 'de4b46f5-1591-442d-a896-6e0d91657c01'}","{'description': 'CHILL is a research study which aims to find out whether reducing air pollution from traffic is good for children’s health. We are particularly interested in whether interventions to reduce air pollution can improve children’s lung growth and respiratory symptoms, activity levels and brain function. We are also interested in whether exposure to air pollution in childhood leaves markers on genes that reflect pollution levels over time. We have recruited over 3,300 primary school pupils across London and Luton to take part from 44 London schools and 41 Luton schools. These children will be assessed once a year for up to four years.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://www.qmul.ac.uk/chill/']}",de4b46f5-1591-442d-a896-6e0d91657c01,https://web.www.healthdatagateway.org/dataset/de4b46f5-1591-442d-a896-6e0d91657c01,"{'formatAndStandards': {'language': 'en', 'conformsTo': 'LOCAL', 'vocabularyEncodingScheme': ['LOCAL', 'NHS NATIONAL CODES']}, 'usage': {'resourceCreator': 'Queen Mary University of London', 'isReferencedBy': [""Jawad, M. 2021. Children's Health In London and Luton. https://clinicaltrials.gov/ct2/show/NCT04695093 ""]}, 'access': {'dataController': 'CHILL', 'accessRights': ['https://www.qmul.ac.uk/chill/'], 'jurisdiction': 'GB', 'dataProcessor': 'CHILL'}}","{'origin': {'source': 'ELECTRONIC SURVEY', 'purpose': 'STUDY', 'collectionSituation': 'COMMUNITY'}, 'temporal': {'startDate': '2018-01-01', 'distributionReleaseDate': '2019-05-01', 'accrualPeriodicity': 'ANNUAL', 'timeLag': 'NOT APPLICABLE'}}",2020-01-13T15:48:22Z,,4.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-03-02T16:00:38Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'UK Renal Registry - COVID-19 dataset', 'publisher': {'identifier': '609bc283781cac1dbab2a385', 'name': 'RENAL ASSOCIATION', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'ukrr-research@renalregistry.nhs.uk', 'abstract': 'Patient-level data for adults and children with CKD or adults with an AKI on dialysis who are under the care of NHS hospital renal centres in England, Northern Ireland and Wales and who have a positive laboratory test for SARS-CoV-2.', 'keywords': ['UK Renal Registry', 'Chronic kidney disease (disorder)', 'Acute kidney injury', 'CKD', 'AKI', 'End-stage kidney disease', 'ESKD', 'Kidney failure', 'kidney replacement therapy', 'KRT', 'RRT', 'Renal replacement therapy', 'Renal', 'Kidney', 'Transplant', 'Dialysis', 'COVID-19', 'SARS-CoV-2']}",2a3dba77-34ff-4781-b273-1b3d54d11f32,"{'followup': '0 - 6 MONTHS', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/6269131', 'https://www.geonames.org/2634895', 'https://www.geonames.org/2641364/'], 'pathway': 'The dataset includes all patients with a positive laboratory test for SARS-COV-2 that are reported to the UK Renal Registry by renal centres in England, Northern Ireland and Wales.'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'de8d0b95-b968-45f2-8cd4-2c87d72ff729'},"{'description': 'The dataset contains patient-level data for adults and children with chronic kidney disease (CKD) or adults with an acute kidney injury (AKI) on dialysis who are under the care of NHS hospital renal centres in England, Northern Ireland and Wales and who have a positive laboratory test for SARS-CoV-2. The data were collected weekly, but this is now moving to monthly, and include patient identifiable information and limited socio-demographic and clinical data. Public Health Scotland submits aggregate data to the UKRR on a monthly basis. Data collection commenced in March 2020 and coverage of renal centres is very good (see COVID-19 surveillance reports here: https://renal.org/audit-research/publications-presentations/report/covid-19-surveillance-reports).', 'associatedMedia': ['https://renal.org/audit-research/publications-presentations/report/covid-19-surveillance-reports', 'https://renal.org/audit-research/data-permissions/data/ukrr-covid-19-dataset'], 'isPartOf': 'UK Renal Registry, The Renal Association'}",de8d0b95-b968-45f2-8cd4-2c87d72ff729,https://web.www.healthdatagateway.org/dataset/de8d0b95-b968-45f2-8cd4-2c87d72ff729,"{'access': {'dataController': 'The Renal Association', 'accessRights': ['https://renal.org/audit-research/how-access-data/ukrr-data/apply-access-ukrr-data'], 'deliveryLeadTime': '2-6 MONTHS', 'accessService': ""Data are released to researchers who have successfully gone through the UKRR's data application process. Prior to any data sharing with successful applicants, a fixed term data sharing agreement (DSA) is drawn up between the Renal Association and the recipient. This specifies the scope of the analyses permitted, the data items to be shared, the frequency of the data sharing, the names of the researchers and the time limit beyond which data must be destroyed."", 'accessRequestCost': ['Charges may apply for new aggregate data and extracts of pseudonymous patient level data. The charges are to recover the costs of managing the application process and preparing extracts of data. The costs depend on the level of service required from the UKRR and whether this is limited to a simple extract of data, or requires additional input such as methodological or statistical support. The UKRR can advise on costs once the expression of interest is received and applicants may also be requested to complete a costing form.'], 'jurisdiction': ['GB-GB']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'format': ['csv or xlsx or sas7bdat'], 'conformsTo': ['LOCAL']}, 'usage': {'investigations': ['https://renal.org/audit-research/projects/ukrr'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'ETHICS APPROVAL REQUIRED', 'GEOGRAPHICAL RESTRICTIONS', 'TIME LIMIT ON USE', 'NOT FOR PROFIT USE', 'USER SPECIFIC RESTRICTION', 'INSTITUTION SPECIFIC RESTRICTIONS'], 'resourceCreator': ['UK Renal Registry, The Renal Association'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}}","{'origin': {'collectionSituation': ['CLINIC', 'OUTPATIENTS', 'IN-PATIENTS'], 'purpose': ['DISEASE REGISTRY', 'AUDIT', 'CARE', 'STUDY'], 'source': ['EPR', 'ELECTRONIC SURVEY']}, 'temporal': {'timeLag': '2-4 WEEKS', 'accrualPeriodicity': 'MONTHLY', 'startDate': '2020-03-02', 'distributionReleaseDate': '2021-05-28'}}",2021-05-25T13:16:59Z,"[{'observedNode': 'PERSONS', 'measuredValue': '13000', 'disambiguatingDescription': 'Since March 2020, c. 13,000 patients with kidney disease who receive treatment from a renal centre in England, Northern Ireland and Wales have had a positive laboratory test for SARS-CoV-2.', 'observationDate': '28/04/2021', 'measuredProperty': 'Count'}]",1.0.0,"{'qualifiedRelation': ['NHS Digital (HES), PHE - external researchers must obtain their own permissions to link UKRR data to other datasets'], 'derivation': ['Not available']}",2021-08-13T09:39:03Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 9, 'structuralMetadata.columnName': 9, 'structuralMetadata.columnDescription': 9, 'structuralMetadata.dataType': 9, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'deb2f3b9-6cee-4e86-a2d3-642897147a22', 'description': 'Patient-level data for adults and children with chronic kidney disease (CKD) or adults with an acute kidney injury (AKI) on dialysis who are under the care of NHS hospital renal centres in England, Northern Ireland and Wales and who have a positive laboratory test for SARS-CoV-2.', 'name': 'UKRR - COVID-19 dataset', 'dataElementsCount': 9, 'dataElements': '3d901851-af35-4523-a579-340c3be70bb8, a1933147-53bc-4c98-b24d-9e72af79a40d, 4e67f3a4-21a9-4884-9399-6aa400dc4a7b, 4fe92e3e-a835-4ea2-9721-0fe46d729b02, e718fca3-aa94-4e56-aeea-f8e605c23a74, 59085a42-05ec-4083-b8f8-b6a716819847, 32b7541a-4440-46b8-a1e7-2c86183e4630, efb566ab-86b1-4b70-8306-7bccaf616b72, a60c32bb-9685-4bc0-8c48-2015960ffa75'}]}"
"{'title': 'Children’s Kidney Cancers - Great Ormond Street Hospital', 'contactPoint': 'datacan@uclpartners.com', 'keywords': ['CANCER', 'imaging', 'renal', 'clinical', 'tumour', 'Wilms', 'children', 'molecular', 'risk stratification'], 'abstract': 'GOSH is the custodian of the latest study dataset - IMPORT. All of the trial/study datasets include: full patient and tumour demographics, associated congenital abnormalities, tumour stage, treatment received and follow up for relapse and death.', 'publisher': {'name': 'DATA-CAN', 'memberOf': 'HUB', 'contactPoint': 'datacan@uclpartners.com'}}",3f71bef5-c5a2-400c-a482-2ad30b29a240,"{'pathway': 'Secondary Care', 'spatial': 'https://www.geonames.org/2643743/london.html', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': '> 10 YEARS', 'typicalAgeRange': '0-19'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'c5b109a6-8807-4f14-acce-1a9790aadd78', '4.0.0': 'df23aabd-3e5f-4fc2-aad6-af990cff6f19', '0.0.1': '78dd574c-1f31-4b1a-9637-658efba1f59f', '2.0.0': '38b7cb24-d401-4f7e-b4ff-ddfd9329ac40', '3.0.0': '395d4311-da00-49a4-b78e-5387c961d803', 'latest': 'df23aabd-3e5f-4fc2-aad6-af990cff6f19'}","{'description': 'GOSH is the custodian of the most recent study dataset (“IMPORT” - 650 patients, 2012-2019). All of the trial/study datasets include: Full patient and tumour\ndemographics, including associated congenital abnormalities, tumour stage, treatment received (surgery, chemotherapy, radiotherapy) with individual drug names and doses and additional pathological details on histological subtype (risk group), follow up for relapse and death. In addition, the most recent study – “IMPORT” (Improving Population Outcomes for Renal Tumours of childhood) contains data on the presenting symptoms that led to diagnosis of kidney cancer,\nan imaging archive of CT and MRI scans sent for central radiology review and biological samples (frozen tumour, blood, normal kidney) stored centrally on ~two\nthirds of cases. There is also tumour genomic copy number data available on about one third of the prior trial – SIOP WT 2001 (that ran in the UK, 2002-2011).\n\nChildhood renal tumour dataset\n\nThis document describes the research dataset constructed through the Improving Population Outcomes for Renal Tumours of childhood (IMPORT) study from 2012 – 2019 (https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/study-improving-treatment-children-kidney-cancer. The aim of this prospective clinical observational study is to achieve continuous improvement in short and long term outcomes for children with Wilms tumour and other rarer types of childhood renal tumours. The study collects clinical, molecular and imaging data to underpin the introduction of a more personalised approach to risk stratification – the process by which each child is assigned to one of several ‘standard of care’ treatment arms according to the predicted risk of their tumour recurring. \n\nIt is a live database, currently comprising data on 670 children with kidney tumours who are resident across the UK and Republic of Ireland. This represents >90% of all incident cases diagnosed in the population. Clinical data and patient samples are collected with explicit consent of their parent/guardian for use in research and for sharing with the relevant national cancer registration service according to where the child is resident at diagnosis.\n\nData are collected throughout the patient journey and are presented in tables with each data item as a comma separated value (CSV) corresponding to a data field captured through a case report form (CRF). These span the following timepoints from presentation to completion of treatment and then annual follow up or reporting of any events (relapse/death/second tumour). \n\nF1 Registration information\nF2 Pre-operative chemotherapy (Unilateral tumours only)\nF3 Surgical form – operative findings\nF4 Pathology form – institutional pathologist\nF6 Post-operative chemotherapy\nF11 Cardiotoxicity reporting form\nF12 Bilateral Wilms tumour form – additional registration information (12a) and response assessment (12b)\nF15 Reference Pathology – “Central review”\nF17 Treatment of relapse or progression\nF18 Follow up form – for annual follow up reporting and to report any relapse or death.\nF20A End of treatment summary (Unilateral tumours)\nF20B End of treatment summary (Bilateral tumours)\n\nDetails of the content of each CRF are in the table below.\n\nMost children (~90%) with Wilms tumour survive their cancer. Hence, an important aspect of the dataset is the planned linkage of each child’s data to their national cancer registration record. This will permit measurement of very long term health outcomes in adulthood by linkage to routine health care data utilising the approved information governance systems through which the UK’s national cancer registration services work with the NHS to ensure patient confidentiality. \n\nThe IMPORT study is one of five sequential clinical trials and studies that registered the majority of children diagnosed with kidney cancer in the UK and Republic of Ireland between 1980-2019 (over 3,000 patients). It is intended that these additional four closed trial datasets will be made available in the same way during 2020.\n\nThese trials’ primary endpoints, of relapse-free and overall survival according to clinically defined risk groups, have been published, with full clinical quality assurance completed. Over that 39 year period, risk stratification and treatment schedules have been refined many times, to reduce exposure to therapies that may cause long term side effects such as heart damage or second tumours. These adverse ‘late effects’ may take decades before they are first seen. Hence, these linked datasets are an important proof of principle about how very long term outcomes can be studied through linkage of clinical trials to routine health care data sources.  \n\nThe IMPORT dataset will continue to be enlarged and enriched with tumour molecular information (copy number, genomic sequencing) and imaging review data (CT/MRI scans). These data items are not available for the previous closed trials.\n\n\nOptional material if needed:\n\nPlans for the linked dataset with the national cancer registration and analysis service (NCRAS) of Public Health England. \n\nThis project will create a new permanent data linkage between each patient’s trial identifier and data and their existing national cancer registration record, with all personally identifiable data being handled within the existing nationally approved information governance and data protection frameworks of the clinical trial units and the cancer registration service of each nation. The following technical description applies to Public Health England’s National Cancer Registration and Analysis Service (NCRAS). Access to the linked community prescription data is made available through PHE’s Office for Data Release.\n\nNCRAS routinely collects and quality assures clinical information on all cases of cancer that occur in people living in England to construct a cancer registration record.  The data collected by NCRAS comes from several sources including Multi-Disciplinary Team meetings and pathology reports. The patient identifiers collected facilitate linkage to other routinely collected datasets, that include Hospital Episode Statistics (HES) with details of all admissions, A&E attendances and outpatient appointments at NHS hospitals in England, mortality data, the Systemic Anti-Cancer Therapy and Radiotherapy datasets from all hospital providers and community dispensed prescriptions data. \n\nPatient-level linkage to inpatient HES is routinely processed by NCRAS. PHE receives pseudonymised dispensed prescriptions data from NHS Business Services Authority, allowing patient-level linkage to the National Cancer Registration Dataset without revealing the identities of those without cancer.  Prescription data is available from April 2015 to February 2019, providing a 3-4 year window of prescription drug usage by survivors of childhood renal tumours. \n\nThe project’s primary aim is addressed by calculating cumulative and relative risks of hospitalisation for specific organ dysfunctions from the HES-linked data set and relative risks of prescriptions for specific drugs compared to the general population rates. This newly created linked dataset can be refreshed for future follow up studies and linkage to additional datasets that may become available such as patient-reported outcome measures.\n\nFor HES-based analyses, follow-up will start at whichever is the later of 1 April 1997 and date of renal tumour diagnosis.  For community prescriptions analyses, follow-up will start at whichever is the later of 1 April 2015 and date of renal tumour diagnosis.  For both sets of analyses, follow-up will end at whichever is earliest of death, emigration, latest date for which linked death certificate data are complete, and the latest date for which data are complete in the linked databases for HES or community prescriptions as applicable.\n\nCumulative risk of hospitalisation for specific organ dysfunctions will be estimated from the HES-linked data set with death treated as a competing risk.  Relative risk of hospitalisation for specific organ dysfunctions will be estimated by dividing the observed number in the HES-linked data set by the expected number obtained by multiplying the number of person-years accumulated in each age-sex-calendar year stratum in the study cohort by the general population rate in the corresponding stratum calculated from the entire HES database.  Relative risks of prescriptions for specific drugs will be estimated in a similar way using the linked community prescription data set and the entire community prescription database.\n\nThe IMPORT study is one of five sequential clinical trials and studies that registered the majority of children diagnosed with kidney cancer in the UK and Republic of Ireland between 1980-2019 (over 3,000 patients). It is intended that these additional four closed trial datasets will be made available in the same way during 2020', 'isPartOf': 'pediatric kidney cancer clinical trial datasets', 'associatedMedia': ['https://www.uhs.nhs.uk/Media/SUHTExtranet/Services/PaediatricOncology/Solids/UMBRELLA-protocol-UK-V5.pdf', 'https://www.authorea.com/users/5588/articles/445428-the-covid-19-pandemic-a-rapid-global-response-for-children-with-cancer-from-siop-cog-siop-e-siop-podc-ipso-pros-cci-and-st-jude-global?commit=43d910681b467e87b9bb6d2f8695ce966cd12213', 'https://siop-rtsg.org/index.php/news/71-experts-in-kidney-cancer-from-the-children-s-cancer-and-leukaemia-group-have-published-a-new-recommendation-on-when-a-biopsy-of-the-suspected-tumour-should-be-taken', 'https://pubmed.ncbi.nlm.nih.gov/12947062/', 'https://www.sciencedirect.com/science/article/abs/pii/S0959804912004984', 'https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-looking-at-treatment-for-children-and-young-people-with-wilms-tumour-siop-wt-2001#undefined', 'https://www.childrenwithcancer.org.uk/research/projects/wilms-tumour-diagnosis/', 'https://pubmed.ncbi.nlm.nih.gov/22415585/', 'https://www.childrenwithcancer.org.uk/research/projects/molecular-evolution-wilms-tumour/', 'https://www.annalsofoncology.org/cms/10.1093/annonc/mds025/attachment/ea4df72e-99de-473a-ae59-0b59200523de/mmc1.pdf']}",df23aabd-3e5f-4fc2-aad6-af990cff6f19,https://web.www.healthdatagateway.org/dataset/df23aabd-3e5f-4fc2-aad6-af990cff6f19,"{'access': {'jurisdiction': 'GB', 'dataController': 'GOSH', 'dataProcessor': 'UCL', 'deliveryLeadTime': '2-6 MONTHS', 'accessRequestCost': 'Not yet determined', 'accessService': 'Held within UCL Data Safe Haven - Access process has been detailed', 'accessRights': ['https://www.gosh.nhs.uk/about-us/contact-us/contact-our-medical-records-department', 'https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&cad=rja&uact=8&ved=2ahUKEwif3a7Jud_tAhWpRhUIHVN7B4QQFjAFegQIChAC&url=https%3A%2F%2Fwww.gosh.nhs.uk%2Ffile%2F17676%2Fdownload&usg=AOvVaw0vuwh26mhjknz1afc_oPRF', 'https://www.gosh.nhs.uk/teenagers/your-hospital-visit/your-information', 'https://www.gosh.nhs.uk/about-us/contact-us-hospital', 'https://www.gosh.nhs.uk/privacy']}, 'formatAndStandards': {'language': 'en', 'conformsTo': 'NHS DATA DICTIONARY', 'vocabularyEncodingScheme': 'ICD10', 'format': ['text/csv', 'text/xml', 'ms access', 'sql']}, 'usage': {'dataUseRequirements': ['COLLABORATION REQUIRED', 'ETHICS APPROVAL REQUIRED'], 'isReferencedBy': [""1. Stiller C. Childhood Cancer in Britain: Incidence, Survival and Mortality. Oxford University Press, 2007 2. Stiller CA, Kroll ME, Pritchard-Jones K. Population survival from childhood cancer in Britain during 1978-2005 by eras of entry to clinical trials. Ann Oncol. 2012, 23(9):2464-9. 3. Pritchard-Jones K et al, on behalf of the SIOP Renal Tumours Study Group. Doxorubicin omission from the treatment of stage II–III, intermediate-risk histology Wilms’ tumour: results of the SIOP WT 2001 randomised trial. The Lancet 2015 Sept. 386:1156-64. 4. Pritchard J, Imeson J, Barnes J, Cotterill S, Gough D, Marsden HB, Morris-Jones P, Pearson D. Results of the United Kingdom’s Children’s Cancer Study Group First Wilms Tumour study. J Clin Oncol, 1995, 13:124-133 Pritchard-Jones K, Moroz V, Vujanic G, Powis M, Walker J, Messahel B, Hobson R, Levitt G, Kelsey A, Mitchell C; on behalf of the Children’s Cancer and Leukaemia Group (CCLG) Renal Tumours Group. Treatment and outcome of Wilms' tumour patients: an analysis of all cases registered in the UKW3 trial. Ann Oncol. 2012 Sep;23(9):2457-63. 5. Mitchell C, Pritchard-Jones K, Shannon R, Hutton C, Stevens S, Machin D, Imeson J, Kelsey A, Vujanic GM, Gornall P, Walker J, Taylor R, Sartori P, Hale J, Levitt G, Messahael B, Middleton H, Grundy R, Pritchard J. Immediate nephrectomy versus pre-operative chemotherapy in the management of non-metastatic Wilms' Tumour; Results of a Randomised Trial (UKW3) by the UK Children's Cancer Study Group. European J Cancer, 42(15):2554-62, 2006. 6. C Mitchell, P Morris Jones, A Kelsey, GM Vujanic, B Marsden, R Shannon, P Gornall, C Owens, R Taylor, J Imeson, H Middleton and J Pritchard for the UKCCSG. The treatment of Wilms’ tumour: results of the United Kingdom Children’s Cancer Study Group (UKCCSG) second Wilms’ tumour study. British Journal of Cancer (2000) 83(5), 602–608 7. Hawkins M et al. The British Childhood Cancer Survivor Study: objectives, methods, population structure, response rates and initial descriptive information. Pediatr Blood Cancer 2008, 50:1018–1025. 8. https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/study-improving-treatment-children-kidney-cancer 9. Henson K, Brock R, Shand B et al. Cohort profile: prescriptions dispensed in the community linked to the national cancer registry in England. BMJ Open 2018, 8:e020980 10. Mathoulin-Pélissier S & Pritchard-Jones K. Evidence-based data and rare cancers: The need for a new methodological approach in research and investigation. Eur J Surg Oncol. 2019, 45:22-30. 11. Gatta G et al, oral presentation at ENCR conference, 2018. https://encr.eu/sites/default/files/2018-ENCR-Conference/GGatta%20presentation%20JRC%20ENCR%20Copenhagen.pdf 12. Gatta G et al. Childhood cancer survival in Europe 1999-2007: results of EUROCARE-5--a population-based study. Lancet Oncol 2014, 15:35–47. 13. Pritchard-Jones K, Graf N, van Tinteren H, Craft A. Evidence for a delay in diagnosis of Wilms’ tumour in the UK compared with Germany: implications for primary care for children. Arch Dis Child 2016, 101:417–20. 14. Whelan J, Hackshaw A, McTiernan A, Grimer R, Spooner D, Bate J, Ranft A, Paulussen M, Juergens H, Craft A, Lewis I. Survival is influenced by approaches to local treatment of Ewing sarcoma within an international randomised controlled trial: analysis of EICESS-92. Clin Sarcoma Res. 2018 Mar 30;8:6. doi: 10.1186/s13569-018-0093-y. eCollection 2018. 15. https://twitter.com/wilmsuk; https://www.facebook.com/groups/449199621834603/""], 'resourceCreator': 'Professor Kathy Prichard-Jones\nConsultant Oncologist at Great Ormond Street Hospital (GOSH)', 'dataUseLimitation': 'GENERAL RESEARCH USE', 'investigations': ['https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/study-improving-treatment-children-kidney-cancer', 'https://wessexhealthlines.nhs.uk/health-lines/cancerline/list-studies/improving_population_outcomes_for_renal_tumours_of_childhood_-__applying_p-medicine_tools_to_improve_treatment_decisions_for_wil/', 'https://www.cclg.org.uk/research/cclg-grants/wilms', 'https://pubmed.ncbi.nlm.nih.gov/32620510/', 'https://pubmed.ncbi.nlm.nih.gov/27969569/', 'https://www.cclg.org.uk/corecode/search/searchresults.aspx?q=projects', 'https://www.cuh.nhs.uk/news/uncovering-the-origin-of-rare-childhood-cancer-guides-treatment/', 'https://www.childrenwithcancer.org.uk/childhood-cancer-info/we-fund-research/projects-we-fund/molecular-evolution-wilms-tumour/', 'https://onlinelibrary.wiley.com/doi/full/10.1002/pbc.27627', 'https://www.uhs.nhs.uk/Media/SUHTExtranet/Services/PaediatricOncology/Solids/UMBRELLA-protocol-UK-V5.pdf', 'https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-looking-at-treatment-for-children-and-young-people-with-wilms-tumour-siop-wt-2001#undefined']}}","{'origin': {'source': 'EPR', 'collectionSituation': 'CLINIC', 'purpose': 'OTHER'}, 'temporal': {'startDate': '2012-04-01', 'accrualPeriodicity': 'MONTHLY', 'distributionReleaseDate': '2019-12-01', 'timeLag': '6 MONTHS PLUS', 'endDate': '2022-12-31'}}",2020-01-10T17:03:44Z,"[{'observedNode': 'Persons', 'measuredValue': '650', 'disambiguatingDescription': 'Cancer study participants', 'observationDate': '2021-02-01', 'measuredProperty': 'Count'}]",4.0.0,"{'derivation': ['Multiple derivations'], 'qualifiedRelation': ['Further development underway to link to UK registry data.\nThe clinical trial datasets will be linked into the national cancer registration services during 2021.  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However this secondary linkage is dependent on further research funding that is not yet in place.']}",2021-02-23T09:30:52Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 13, 'structuralMetadata.tableName': 13, 'structuralMetadata.tableDescription': 13, 'structuralMetadata.dataElementsCount': 344, 'structuralMetadata.columnName': 344, 'structuralMetadata.columnDescription': 344, 'structuralMetadata.dataType': 344, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '5bf26e45-25ed-4892-9231-ce1ddac64bc6', 'description': 'Follow up form – for annual follow up reporting and to report any relapse or death.', 'name': 'IMPORT_CRF18', 'dataElementsCount': 32, 'dataElements': '1f9812aa-6b45-4f0c-a057-01ac20f2ece2, 777ce436-7e27-4a8f-90a5-ae4a8fc49c2b, b04e0cc4-4bb4-4713-a7b5-cc817c6f4906, 6c7b1f50-3547-4c99-ba28-a3a3c3f80141, b47bec4e-ec03-4894-b1a2-f52a8e65f3a8, d2c705df-5679-49d6-9486-99773e425df8, 56d81091-0882-416d-b074-6540d3ca0a79, 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"{'title': 'IBD NIHR BioResource: SNP chip data', 'abstract': 'In order to do recall by genotype, participants have their DNA tested using one the SNP chip arrays from eg. Illumina and Affymetrix (now Thermosfisher).  The current iteration is the UK Biobank v2.1 from Thermofisher, which measures ~820k markers.', 'contactPoint': 'nbr@bioresource.nihr.ac.uk', 'keywords': ['IBD', ""Crohn's"", 'colitis', 'recall', 'SNP chip', 'Thermofisher', 'cohort discovery'], 'publisher': {'contactPoint': 'nbr@bioresource.nihr.ac.uk', 'name': 'GUT REACTION', 'memberOf': 'HUB'}}",3c749cfc-4008-4916-b64f-969d6a754c0f,"{'followup': '1 - 10 YEARS', 'spatial': 'United Kingdom (https://www.geonames.org/2635167/united-kingdom.html)', 'typicalAgeRange': '18-85', 'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '2643b129-5635-4fd5-8438-d0701e942b26', '3.0.0': 'df3cc57d-08ae-4e81-ae79-283d71cf8d95', '1.0.0': 'f7c563c0-9625-47be-a070-c121fe734f3c', '0.0.1': 'c105e7af-919a-4e1d-ac25-fc1d58f9f89a', 'latest': 'df3cc57d-08ae-4e81-ae79-283d71cf8d95'}","{'description': 'The NIHR IBD Bioresource comprises ~30k participants with Inflammatory Bowel Disease (IBD), which include the members of the HDR UK IBD Hub. The NIHR BioResource extracts DNA from blood and saliva samples taken at recruitment, and measures a panel of SNPs on each DNA sample, using a commodity SNP genotyping array from e.g. Illumina or Affymetrix (now Thermofisher). This is used to pre-screen or match participants when inviting them to take part in experimental medicine studies. De-identified versions of this data are available to researchers investigating the feasibility of future studies. The Technical Metadata describes a SNP annotation file – i.e. what the chip is measuring. The file itself has as many rows as there are SNPs represented on the chip, and is proprietary to the manufacturer, although deeply familiar to researchers.', 'isPartOf': 'Not Applicable'}",df3cc57d-08ae-4e81-ae79-283d71cf8d95,https://web.www.healthdatagateway.org/dataset/df3cc57d-08ae-4e81-ae79-283d71cf8d95,"{'usage': {'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': 'RESEARCH USE ONLY', 'isReferencedBy': ['Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/'], 'resourceCreator': 'NIHR BioResource. Acknowledgement text: ""We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.""'}, 'formatAndStandards': {'format': ['text/plink', 'text/vcf'], 'vocabularyEncodingScheme': 'OTHER', 'language': 'en', 'conformsTo': 'LOCAL'}, 'access': {'accessRequestCost': 'https://bioresource.nihr.ac.uk/using-our-bioresource/industry-researchers/industry-bioresource-usage-costs/', 'deliveryLeadTime': '2-6 MONTHS', 'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)', 'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)', 'accessService': ""Some de-identified data may be released to researchers in a platform-independent filetype (e.g. CSV). However, access to any data acquired via NHS Digital is subject to strict restrictions governing where data may be accessed and from which locale - access is currently via an experimental safe haven built in Microsoft Azure. 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"{'title': 'National Paediatric Diabetes Audit - core clinical dataset (care processes and outcomes)', 'abstract': 'Record level clinical data on the health checks (care processes) and outcomes for children and young people with diabetes who have attended PDUs (paediatric diabetes units) in England and Wales.', 'publisher': {'name': 'HQIP', 'contactPoint': 'DataSharing@hqip.org.uk', 'memberOf': 'ALLIANCE'}, 'keywords': ['Core', 'Diabetes', 'Paediatric', 'NPDA', 'Audit'], 'contactPoint': 'DataSharing@hqip.org.uk'}",e355c9b9-44f0-4ba3-a872-645aa88f4f2b,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'England and Wales', 'typicalAgeRange': '0-25'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '65126238-ace2-4edc-abaf-fd22432f2a83', '3.0.0': 'dfba178f-ce67-4c2d-8693-b23110aeecae', '1.0.0': '1cb498e5-34c0-41ab-88ca-bf28ab656c4e', '2.0.0': '5ea9c568-b850-4589-bcbb-6ee0cfd322cd', 'latest': 'dfba178f-ce67-4c2d-8693-b23110aeecae'}","{'description': 'The National Paediatric Diabetes Audit (NPDA) includes record-level clinical data on the health checks (care processes) and outcomes for children and young people with diabetes who have attended paediatric diabetes units (PDUs) in England and Wales.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",dfba178f-ce67-4c2d-8693-b23110aeecae,https://web.www.healthdatagateway.org/dataset/dfba178f-ce67-4c2d-8693-b23110aeecae,"{'formatAndStandards': {'language': 'en', 'vocabularyEncodingScheme': 'OTHER', 'format': ['CSV', 'XLXS', 'STATA', 'SPSS'], 'conformsTo': ['LOCAL', 'NHS DATA DICTIONARY']}, 'access': {'accessRequestCost': 'An indicative cost will be provided to applicants upon application. Charges will be basedon workload associated with the application and will be charged following sharing of thedata. They will include a standard £350 + VAT admin fee to cover consultation andprocessing of the application, plus a £350 + VAT per day of analyst time– chargeable inhalf day increments. These costs are limited to RCPCH activitiy in the administation and preparation of requested data. HQIP will also charge according to their costing model.', 'deliveryLeadTime': 'OTHER', 'accessRights': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-datahttps://www.rcpch.ac.uk/sites/default/files/2018-05/npda_data_access_may2018v2_0.pdf'], 'jurisdiction': 'GB-GBN', 'dataProcessor': 'National Paediatric Diabetes Audit Manager', 'dataController': 'Healthcare Quality Improvement Partnership (HQIP) Associate Director'}}","{'origin': {'purpose': 'AUDIT'}, 'temporal': {'startDate': '2019-04-01', 'distributionReleaseDate': '2020-03-01', 'timeLag': '6 MONTHS PLUS', 'endDate': '2020-03-31', 'accrualPeriodicity': 'ANNUAL'}}",2020-01-13T14:00:52Z,,3.0.0,"{'qualifiedRelation': ['The National Diabetes Audit managed by NHS Digital hold a linked NDA/NPDA dataset used for the production of the NDA Transition audit.', '']}",2021-04-14T08:10:58Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'MATCH', 'publisher': {'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE', 'identifier': '607db9c4e1f9d3704d570d1f', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'hicsupport@dundee.ac.uk', 'keywords': ['COVID-19', 'Coronavirus', 'HCW', 'Covid', 'Serology', 'CO-CONNECT', 'VIVALDI', 'VIVALDI 2', ''], 'abstract': '2000 health care workers in NHS Tayside and from social care will have blood samples tested to detect antibodies to SARS-CoV-2, to identify undiagnosed asymptomatic healthcare worker infections with COVID-19.'}",5429fc2a-3d72-414d-9393-4079c4c6c0fa,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'https://www.geonames.org/2636157/tayside-region.html', 'followup': 'UNKNOWN', 'typicalAgeRange': '18-100'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '5b99795a-3db4-4020-a8f9-aa64bcc2c5f0', '2.0.0': 'dfc16033-7620-4002-aa3b-e5bbc400bbfd', '0.0.1': '92f668ee-5ae8-4fb4-8755-4639fe100fde', 'latest': 'dfc16033-7620-4002-aa3b-e5bbc400bbfd'}","{'description': 'Up to 20% of cases of COVID-19 disease in some countries have been reported to be healthcare workers.  The prevalence of HCW infections has not been properly documented due to lack of comprehensive studies.  This information is crucial for infection control and to maintain the workforce during a pandemic.  In addition, as HCWs are frequently exposed to infected patients they represent an ideal population in which to characterise immune responses to the infection.  Discovering the frequency and impact of HCW infections will allow better workforce planning in the NHS as well as establishing whether a positive antibody test can allow staff to safely return to work with a low risk of infection.  2000 HCW in NHS Tayside and from social care will have blood samples tested with a validated laboratory assay to detect antibodies to SARS-CoV-2.  The aims of the study are to identify undiagnosed asymptomatic healthcare worker infections with COVID-19, to understand the burden of undetected infections and to identify in patients with detectable antibodies can be reinfected with COVID-19.', 'associatedMedia': ['https://discovery.dundee.ac.uk/en/projects/match-antibody-study']}",dfc16033-7620-4002-aa3b-e5bbc400bbfd,https://web.www.healthdatagateway.org/dataset/dfc16033-7620-4002-aa3b-e5bbc400bbfd,"{'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'conformsTo': ['OTHER'], 'format': ['Database']}, 'access': {'deliveryLeadTime': '1-2 MONTHS', 'jurisdiction': ['GB-SCT'], 'dataController': 'University of Dundee', 'accessService': 'HIC has implemented a remote-access ""Safe Haven"" environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details are available via the following link:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/', 'accessRights': ['https://www.dundee.ac.uk/hic/governanceapprovalsupport/']}, 'usage': {'resourceCreator': ['Professor James Chalmers, University of Dundee'], 'investigations': ['https://co-connect.ac.uk/']}}","{'temporal': {'endDate': '2020-09-02', 'startDate': '2020-05-28', 'accrualPeriodicity': 'STATIC', 'timeLag': 'NOT APPLICABLE', 'distributionReleaseDate': '2021-09-29'}, 'origin': {'source': ['EPR', 'ELECTRONIC SURVEY'], 'purpose': ['STUDY', 'CARE'], 'collectionSituation': ['OUTPATIENTS']}}",2021-02-10T11:09:11Z,"[{'observedNode': 'PERSONS', 'measuredValue': '2036', 'disambiguatingDescription': 'There are 2036 participants of the MATCH study', 'observationDate': '29/09/2021', 'measuredProperty': 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"{'title': 'Generation Scotland', 'publisher': {'contactPoint': 'info@generationscotland.org', 'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY'}, 'abstract': 'Collection of samples and data across the following diseases: Fit and well', 'contactPoint': 'info@generationscotland.org', 'keywords': ['Edinburgh', 'Dundee and Aberdeen', 'Generation', 'NHS Scotland', 'Scotland', 'UKCRC Tissue Directory', 'genetic', 'Fit and well', 'Glasgow'], 'doiName': 'Not Available'}",019fad36-65ea-4d47-8d6d-a47240eeb801,"{'spatial': 'Scotland', 'typicalAgeRange': '15-150', 'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM', 'URINE', 'WHOLE BLOOD']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '958131cf-0a9e-4f67-a07f-8a3f0ebb594f', '3.0.0': 'dfc3205c-3079-4e95-93e2-8a3a3beeea5a', '1.0.0': 'fb6dacfd-81b6-4422-aa10-6bdb26db20e2', '2.0.0': 'f72798fb-d168-4c3c-abce-f8300cbcb8b3', 'latest': 'dfc3205c-3079-4e95-93e2-8a3a3beeea5a'}","{'description': 'A collaboration between the Universities of Edinburgh, Glasgow, Dundee and Aberdeen, and NHS Scotland, to provide resources for genetic and medical research.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",dfc3205c-3079-4e95-93e2-8a3a3beeea5a,https://web.www.healthdatagateway.org/dataset/dfc3205c-3079-4e95-93e2-8a3a3beeea5a,"{'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}, 'access': {'accessRequestCost': 'Not specified', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'dataProcessor': 'Not Applicable', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'jurisdiction': 'GB-SCT', 'dataController': 'University of Edinburgh'}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2006-01-01'}}",2020-01-13T17:05:20Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T15:59:40Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'NIHR BioResource: Demographic', 'keywords': ['recall', 'demographics', 'feasibility', 'cohort', 'discover'], 'publisher': {'name': 'NIHR BIORESOURCE', 'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d3f'}, 'abstract': 'The NIHR BioResource acquires broad demographics – e.g. age, sex, ethnicity - from participants at recruitment.  This is used to pre-screen or match participants when inviting them to take part in experimental medicine studies', 'contactPoint': 'nbr@bioresource.nihr.ac.uk'}",d2c486bb-b95b-4093-bb58-b196cfc08c7b,"{'typicalAgeRange': '18-85', 'followup': '1 - 10 YEARS', 'spatial': ['United Kingdom (https://www.geonames.org/2635167/united-kingdom.html)'], 'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '8c573599-30cf-4708-bcbd-e2e37c795664', '1.0.0': 'dfd65358-d5a4-40f1-873a-c8c304799cbf', 'latest': 'dfd65358-d5a4-40f1-873a-c8c304799cbf'}","{'description': 'The NIHR Bioresource consists of several groups of participants: ~70k from the general population and blood donors (COMPARE, INTERVAL and STRIDES studies); ~19k with one of ~50 rare diseases (RD) including a ~5k pilot for GEL; ~30k with Inflammatory Bowel Disease (IBD) which include the members of Gut Reaction, the Health Data Research Hub for IBD; and ~20k with Anxiety or depression (GLAD study). It intends to extend recruitment in all areas, and to other rare and common disease groups, with a target of ~300k by 2022.  The NIHR BioResource acquires demographic details – e.g. age, sex, ethnicity - from participants at recruitment. This is used to pre-screen or match participants when inviting them to take part in experimental medicine studies. De-identified versions of this data are available to researchers investigating the feasibility of future studies.', 'isPartOf': 'Not Applicable'}",dfd65358-d5a4-40f1-873a-c8c304799cbf,https://web.www.healthdatagateway.org/dataset/dfd65358-d5a4-40f1-873a-c8c304799cbf,"{'usage': {'dataUseLimitation': ['RESEARCH USE ONLY'], 'resourceCreator': ['NIHR BioResource. Acknowledgement text: ""We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.""'], 'isReferencedBy': ['Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION']}, 'formatAndStandards': {'conformsTo': ['I2B2'], 'format': ['text/csv'], 'vocabularyEncodingScheme': ['LOCAL', 'NHS NATIONAL CODES'], 'language': ['en']}, 'access': {'accessRequestCost': ['https://bioresource.nihr.ac.uk/using-our-bioresource/industry-researchers/industry-bioresource-usage-costs/'], 'deliveryLeadTime': '2-6 MONTHS', 'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)', 'accessRights': ['https://bioresource.nihr.ac.uk/using-our-bioresource'], 'jurisdiction': ['GB-GBN'], 'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)', 'accessService': 'Some de-identified data may be released to researchers in a platform-independent filetype (e.g. CSV). However, access to any data acquired via NHS Digital is subject to strict restrictions governing where data may be accessed and from which locale - access is currently via an experimental safe haven built in Microsoft Azure.'}}","{'origin': {'purpose': ['STUDY'], 'source': ['ELECTRONIC SURVEY', 'PAPER BASED'], 'collectionSituation': ['CLINIC', 'COMMUNITY', 'HOME']}, 'temporal': {'accrualPeriodicity': 'QUARTERLY', 'distributionReleaseDate': '2021-03-31', 'startDate': '2002-05-20', 'timeLag': '1-2 MONTHS'}}",2021-02-21T18:21:27Z,"[{'observedNode': 'PERSONS', 'measuredValue': '144909', 'disambiguatingDescription': 'Participants who have demographic information (age and gender as a minimum)', 'observationDate': '26/11/2020', 'measuredProperty': 'COUNT'}]",1.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['ALL', 'COVID-19 SARI-Watch (formerly CHESS)', 'Civil Registration - Deaths', 'Covid-19 Second Generation Surveillance System', 'Emergency Care Data Set (ECDS)', 'Hospital Episode Statistics Accident and Emergency', 'Hospital Episode Statistics Admitted Patient Care', 'Hospital Episode Statistics Critical Care', 'Hospital Episode Statistics Outpatients', 'Intensive Care National Audit & Research Centre (ICNARC) Case Mix Programme (https://www.icnarc.org/Our-Audit/Audits/Cmp/About)']}",2021-11-25T11:59:48Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 10, 'structuralMetadata.columnName': 10, 'structuralMetadata.columnDescription': 10, 'structuralMetadata.dataType': 10, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '71bf5ee4-d590-4518-a2c4-a3170209da28', 'description': 'Demographics', 'name': 'Demographics', 'dataElementsCount': 10, 'dataElements': 'c30d2cfc-4556-4249-b5b3-ba3600d476fd, 4cfd5fa4-e0e6-4bb2-a01a-4f34643b8c36, 3da7b3ac-ffa7-4977-888e-d2142aa694df, 0c6ff593-5a93-4d15-b387-f9559f89dae4, 6ad0d53d-da45-471c-8500-72c1d46fe090, 28eaa36d-cc77-4f4c-ae05-258d7302cd0c, 196e2476-4650-46a2-90b1-db8389eb0da1, 273a10b1-46dc-4e97-8a0a-ab2ad8498c8e, 7f5b1bd1-96c2-4783-8d68-67c84b5b27c7, 10d553ea-c13e-41e1-b8ef-41b5507070dc'}]}"
"{'title': 'National Asthma and COPD Audit Programme (NACAP): secondary care workstream – children and young people asthma (organisational)', 'abstract': 'Contains organisational survey data collected from hospitals in England, Wales and Scotland in December 2019.', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'HQIP', 'contactPoint': 'DataSharing@hqip.org.uk'}, 'keywords': ['Asthma', 'Secondary Care workstream', 'Organisational', 'COPD', 'Children and Young People', 'NACAP', 'Audit'], 'contactPoint': 'DataSharing@hqip.org.uk'}",3efd9b30-1f84-48c0-a3e0-402ecb5c7724,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'b1b9d9b2-1415-4e9b-8ba7-a2bc79aa5c5d', '3.0.0': 'dfedefac-c389-4d07-a8a3-eb2e4ff34587', '1.0.0': '26952a13-53ba-4239-847a-a573a9e28ce4', '2.0.0': '76ec0282-02e0-4fff-b016-76bc6ffcb784', 'latest': 'dfedefac-c389-4d07-a8a3-eb2e4ff34587'}","{'description': 'Contains organisational survey data collected from hospitals in England, Wales and Scotland in December 2019.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",dfedefac-c389-4d07-a8a3-eb2e4ff34587,https://web.www.healthdatagateway.org/dataset/dfedefac-c389-4d07-a8a3-eb2e4ff34587,"{'formatAndStandards': {'language': ['en']}, 'access': {'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data\nhttps://www.rcplondon.ac.uk/projects/outputs/national-asthma-and-copd-audit-programme-nacap-resources', 'jurisdiction': 'GB-GBN', 'deliveryLeadTime': 'OTHER'}}",,2020-01-13T14:55:16Z,,3.0.0,,2021-04-14T08:13:28Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'COVID Tests', 'publisher': {'identifier': '5f8992a97150a1b050be0712', 'memberOf': 'ALLIANCE', 'name': 'PUBLIC HEALTH SCOTLAND'}, 'contactPoint': 'phs.edris@phs.scot', 'abstract': 'Contains the results of all PCR / Antigen Tests / LFTs reported to Public Health Scotland by NHS Scotland and UK Government Regional Testing Laboratories including Drive Through Centres and Mobile Units, and home testing kits', 'keywords': ['COVID', 'COVID-19', 'Testing', 'Scotland', 'antigen', 'CO-CONNECT', 'National Core Study', 'NCS']}",607b17d6-74de-466a-a377-238444707abb,"{'pathway': 'Testing results so may including multiple per person', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2638360/scotland.html'], 'typicalAgeRange': '0-150', 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'e00284e3-439b-4a6d-9781-679c539404f8'},"{'description': 'Contains the results of all PCR / Antigen Tests / LFTs reported to Public Health Scotland by NHS Scotland and UK Government Regional Testing Laboratories including Drive Through Centres and Mobile Units, and home testing kits', 'associatedMedia': ['https://public.tableau.com/app/profile/phs.covid.19/viz/COVID-19DailyDashboard_15960160643010/Overview#!/vizhome/COVID-19DailyDashboard_15960160643010/Overview'], 'isPartOf': 'SCOTLAND, COVID'}",e00284e3-439b-4a6d-9781-679c539404f8,https://web.www.healthdatagateway.org/dataset/e00284e3-439b-4a6d-9781-679c539404f8,"{'access': {'accessRequestCost': ['Research Projects - https://www.isdscotland.org/Products-and-Services/eDRIS/FAQ-eDRIS/index.asp#a4 ; Information Request Service - https://www.isdscotland.org/About-ISD/Information-Requests/'], 'dataController': 'Pubic Health Scotland', 'dataProcessor': 'National Services Scotland', 'accessRights': ['https://www.informationgovernance.scot.nhs.uk/pbpphsc/', 'https://www.isdscotland.org/About-ISD/Information-Requests/', 'https://www.isdscotland.org/Products-and-Services/eDRIS/'], 'jurisdiction': ['GB-SCT'], 'accessService': 'Scottish National Data Safe Haven (https://www.isdscotland.org/Products-and-Services/eDRIS/)', 'deliveryLeadTime': 'VARIABLE'}, 'usage': {'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'NOT FOR PROFIT USE'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['None']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['OTHER'], 'language': ['en'], 'conformsTo': ['OTHER'], 'format': ['text', 'csv']}}","{'origin': {'collectionSituation': ['OTHER'], 'source': ['LIMS'], 'purpose': ['CARE', 'ADMINISTRATIVE']}, 'temporal': {'timeLag': 'LESS 1 WEEK', 'startDate': '2020-02-01', 'accrualPeriodicity': 'DAILY'}}",2021-10-29T10:18:01Z,"[{'observedNode': 'EVENTS', 'observationDate': '22/10/2021', 'measuredProperty': 'Count', 'measuredValue': '24141005', 'disambiguatingDescription': 'Number of COVID Tests'}]",2.0.0,"{'qualifiedRelation': ['Early Pandemic Evaluation and Enhanced Surveillance of COVID-19 (EAVE II), COVID-19 Clinical Information Network (CO-CIN)']}",2021-10-29T10:18:01Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Laboratory turnaround times processing electronic blood test orders in the NHS', 'publisher': {'name': 'PIONEER', 'memberOf': 'HUB', 'identifier': '607db9c5e1f9d3704d570d5f'}, 'keywords': ['Acute Care', 'Laboratory turnaround time', 'Computerised Point of Entry System', 'care pathways', 'Admissions', 'Pathology', 'Laboratory', 'Blood tests', 'Workflows', 'Paper systems', 'LTAT', 'Electronic Healthcare System', 'CPOE', 'Paper based ordering', 'Operational Efficiency', 'Rapid Decision making', 'Decision support'], 'contactPoint': 'PIONEER@UHB.NHS.UK', 'abstract': 'Unique data of 323,899 blood tests pre- and post-implementation of a computerised order entry system with key clinical pathway time-points for all blood tests. Data on date/time of requests, laboratory processing times and reported results.'}",971e2827-3aa4-4af3-bdce-3c8419897654,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Data is representative of the multi-ethnicity population within the West Midlands (42% non white). Data includes all patients admitted during this timeframe, with National data Opt Outs applied, and therefore is representative of admissions to secondary care. Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.', 'spatial': ['https://www.geonames.org/2634343/west-midlands.html'], 'typicalAgeRange': '13-150', 'followup': '0 - 6 MONTHS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'e05de62a-91be-46b8-8c1d-c9ed89d8c740'},"{'description': 'Pathology services are a fundamental core of healthcare services and are essential in the delivery of many national priorities. A Report of the Review of NHS Pathology Services in England, chaired by Lord Carter of Coles, estimated that 70-80 per cent of all healthcare decisions affecting diagnosis or treatment involve a pathology investigation. With the increased demand on acute care services there is a growing requirement for rapid laboratory results to facilitate the decision to discharge or admit, including the escalation of care. Laboratory turn around times (LTAT) are defined as the interval between when a test is requested to the time the results are available to the clinical team. LTAT is considered one of the most noticeable markers of a laboratory service and is often used as a key performance indicator in healthcare settings. \n\nComputerised Provider Order Entry (CPOE) systems are computer-assisted systems that are designed to replace a hospital’s paper-based ordering system. When configured correctly CPOE systems should increase efficiency and improve patient care.  \n\nPIONEER geography: The West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix.  \n\nUHB is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”. \n\nScope: Clinical and operational pathway data for 323,899 blood tests ordered pre and post implementation of a CPOE system. Data on the time the new system was implemented. Date and time fields are provided for the specimens from the point they were requested through to processing times in the laboratory and finally the date/time results are reported back via the Electronic Health System. Data on the ward and specialty are provided.  \n\nAvailable supplementary data: Matched controls; ambulance, OMOP data, synthetic data. \n\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.'}",e05de62a-91be-46b8-8c1d-c9ed89d8c740,https://web.www.healthdatagateway.org/dataset/e05de62a-91be-46b8-8c1d-c9ed89d8c740,"{'access': {'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'jurisdiction': ['GB-ENG'], 'dataProcessor': 'NOT APPLICABLE', 'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/'], 'deliveryLeadTime': '1-2 MONTHS', 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust'}, 'formatAndStandards': {'format': ['SQL'], 'vocabularyEncodingScheme': ['OPCS4', 'ICD10'], 'language': ['en'], 'conformsTo': ['LOCAL']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'resourceCreator': ['This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)']}}","{'temporal': {'startDate': '2010-10-03', 'endDate': '2020-01-01', 'accrualPeriodicity': 'STATIC', 'timeLag': 'OTHER', 'distributionReleaseDate': '2022-01-10'}, 'origin': {'purpose': ['CARE'], 'collectionSituation': ['ACCIDENT AND EMERGENCY', 'IN-PATIENTS', 'OUTPATIENTS'], 'source': ['EPR']}}",2022-02-02T12:47:08Z,"[{'measuredProperty': 'Count', 'observedNode': 'EVENTS', 'measuredValue': '323899', 'disambiguatingDescription': '323,899 spells with laboratory investigations recorded.', 'observationDate': '10/01/2022'}]",1.0.0,{'derivation': ['Not Available']},2022-02-02T12:47:08Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 35, 'structuralMetadata.columnName': 35, 'structuralMetadata.columnDescription': 35, 'structuralMetadata.dataType': 35, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '6a1212b1-0cfa-4c7b-8a8e-33ac85f44795', 'description': 'Spell details for each specimen recorded', 'name': 'PDR33Admission', 'dataElementsCount': 35, 'dataElements': 'a56e7114-cb9d-404c-8a12-345e0b2dffca, 4281c70c-34ba-43d9-a4cd-a2a82ae13219, f19d01a9-d009-4655-bd67-be53b418427a, b361bda9-3a3f-47f5-9ffc-9ca7992fe1c6, 34eef8d6-cf49-484a-8923-3f35636990c2, 2a3c0f09-84ac-47b6-be9e-bc30d5070666, 8cbbf2ed-7952-481c-94ab-f344f7060d9c, d90a884a-4d45-4f13-bdbb-b364d895c91d, 790a6118-2377-4644-8aee-e270fa6131ca, 5899b57b-f961-4798-8065-d71a53619e2f, 4e0f3eb1-ea7b-443f-95ef-949244974d31, c4b4463a-4501-4ecb-a79e-23a09564ab4d, 82aa27ab-ca70-450f-96fd-a1eef1e6486c, 6c975bf4-b8a3-4ed1-b724-043d66083ace, d526b6bf-7596-4e25-adf5-2998fa879a41, 426a25c2-8f39-478e-87b1-129966b6f30e, f76e2923-77b4-4e52-b0c3-1f7f31d8a22c, 298e5fc4-fe24-4b14-85ac-1d5306d058de, b85e9dcd-4c6d-46af-8103-05fc56805b59, 18c888dd-bdfe-499d-92a4-c44e3772b5ba, 290a6942-afca-4b56-a729-5cd7a752e354, 70db42af-749e-4861-a060-eeb8efdfd9c5, d2f03556-3fe8-47b3-b39d-50873e80ef86, 9542ef21-d180-4033-8d9f-d2e02e5ff4cf, 1b5287a3-0f5b-46db-84f4-dd8d0d2af18b, 2252b7b0-c163-485b-a3b9-d88d5cfabcea, 713ba763-fd0e-42ca-be96-b9a9855733c8, 45ad5db4-4982-4c56-8e9a-68e9edacf79f, 1adfa201-1aa0-43e6-a7d7-7280400ba358, 337aa9f9-c011-4a87-aae4-03a116b6c568, 63238128-c84a-4beb-9c47-0fe977bcd1fb, da685817-1c11-4773-a583-731f730cc6bb, 3600d219-9a0d-4fda-8b05-4fed87ec8587, 18d2b13d-cc2f-4128-9cef-dca9672e592b, 7fed5627-6a78-4edb-9cfa-647e1be6b5c2'}]}"
"{'title': 'UK Renal Registry - Your Health Survey dataset', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '609bc283781cac1dbab2a385', 'name': 'RENAL ASSOCIATION'}, 'abstract': ""Patient-level data for adults with CKD who are under the care of NHS hospital renal centres in England. The data are collected using the 'Your Health Survey', which includes EQ5D-5L, POS-S Renal and PAM."", 'keywords': ['Kidney', 'Chronic kidney disease (disorder)', 'Patient reported outcomes', 'PROMS', 'Patient activation ', 'PAM', 'Renal', 'Quality of life', 'Renal replacement therapy', 'RRT', 'kidney replacement therapy', 'KRT', 'Person centred care', 'long term medical conditions', 'Personalised care', 'UK Renal Registry'], 'contactPoint': 'ukrr-research@renalregistry.nhs.uk'}",14ed4ab3-470b-45c8-b48f-27fd382a912e,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': '6 - 12 MONTHS', 'pathway': 'The TPCKD data were collected from more than 3,000 patients with CKD, including those on KRT, who were being treated at 10 renal centres in England between 2016 and 2018. The TP2 programme collected data from more than 200 patients with CKD, not on KRT, being treated at 4 renal centres in England in 2018.', 'typicalAgeRange': '18-150', 'spatial': 'https://www.geonames.org/6269131'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'e096053e-b028-4487-a6d0-6958cbb5f388'},"{'description': ""The dataset contains self-reported patient-level data for adults with chronic kidney disease (CKD) who are under the care of NHS hospital renal centres in England. The data are collected using a survey called 'Your Health Survey' that includes identifiable information, socio-demographic information, a quality of life measure (EQ5D-5L), symptom measure (POS-S Renal) and patient activation measure (PAM). In 2016–2017 over 3,000 Your Health Surveys were collected by the UKRR as part of the quality improvement project ‘Transforming participation in chronic kidney disease’ and in 2018 ‘Transforming participation 2’ used the surveys to measure a coaching intervention in over 200 patients. See here for further information: https://renal.org/audit-research/data-permissions/data/ukrr-ckd-patient-measures-dataset/pam-and-prom-data"", 'associatedMedia': ['https://renal.org/audit-research/data-permissions/data/ukrr-ckd-patient-measures-dataset/pam-and-prom-data', 'https://thinkkidneys.nhs.uk/CKD'], 'isPartOf': 'UK Renal Registry, The Renal Association'}",e096053e-b028-4487-a6d0-6958cbb5f388,https://web.www.healthdatagateway.org/dataset/e096053e-b028-4487-a6d0-6958cbb5f388,"{'access': {'dataController': 'The Renal Association', 'accessService': ""Data are released to researchers who have successfully gone through the UKRR's data application process. Prior to any data sharing with successful applicants, a fixed term data sharing agreement (DSA) is drawn up between the Renal Association and the recipient. This specifies the scope of the analyses permitted, the data items to be shared, the frequency of the data sharing, the names of the researchers and the time limit beyond which data must be destroyed."", 'accessRights': ['https://renal.org/audit-research/how-access-data/ukrr-data/apply-access-ukrr-data'], 'jurisdiction': ['GB-GB'], 'accessRequestCost': ['Charges may apply for new aggregate data and extracts of pseudonymous patient level data. The charges are to recover the costs of managing the application process and preparing extracts of data. The costs depend on the level of service required from the UKRR and whether this is limited to a simple extract of data, or requires additional input such as methodological or statistical support. The UKRR can advise on costs once the expression of interest is received and applicants may also be requested to complete a costing form.'], 'deliveryLeadTime': '2-6 MONTHS'}, 'usage': {'investigations': ['https://renal.org/audit-research/projects/ukrr'], 'isReferencedBy': ['Rachel Gair et al. 2019 Transforming Participation in Chronic Kidney Disease (https://www.thinkkidneys.nhs.uk/ckd/wp-content/uploads/sites/4/2019/01/Transforming-Participation-in-Chronic-Kidney-Disease-1.pdf)'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['UK Renal Registry, The Renal Association'], 'dataUseRequirements': ['ETHICS APPROVAL REQUIRED', 'GEOGRAPHICAL RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION', 'NOT FOR PROFIT USE', 'INSTITUTION SPECIFIC RESTRICTIONS']}, 'formatAndStandards': {'format': ['csv or xlsx or sas7bdat'], 'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL']}}","{'origin': {'source': ['PAPER BASED'], 'collectionSituation': ['CLINIC', 'COMMUNITY', 'OUTPATIENTS'], 'purpose': ['CARE', 'AUDIT', 'DISEASE REGISTRY']}, 'temporal': {'startDate': '2016-01-04', 'accrualPeriodicity': 'IRREGULAR', 'distributionReleaseDate': '2019-01-31', 'timeLag': '2-6 MONTHS'}}",2021-05-26T17:01:18Z,"[{'observedNode': 'PERSONS', 'measuredValue': '3200', 'measuredProperty': 'Count', 'observationDate': '04/01/2016'}]",1.0.0,"{'derivation': ['Not available'], 'qualifiedRelation': ['UK Renal Registry - CKD and AKI on Dialysis dataset']}",2021-06-04T09:24:34Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 48, 'structuralMetadata.columnName': 48, 'structuralMetadata.columnDescription': 48, 'structuralMetadata.dataType': 48, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '29714794-7f09-4652-a182-20c4f70a6adf', 'description': ""Patient-level data for adults with CKD who are under the care of NHS hospital renal centres in England. 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"{'title': 'Beta-blocker Stratification using MRI to assess portal pressure (B-SMaRT)', 'publisher': {'identifier': '607db9c6e1f9d3704d570d93', 'memberOf': 'ALLIANCE', 'name': 'UNIVERSITY OF NOTTINGHAM'}, 'keywords': ['cirrhosis', 'portal hypertension', 'varices', 'MRI', 'Magnetic resonance imaging', 'beta-blockers', 'Beta blockers'], 'abstract': 'Provide proof of concept that quantitative haemodynamic MRI markers can stratify the efficacy of carvedilol to lower clinically significant portal hypertension in patients with cirrhosis.', 'contactPoint': 'guru.aithal@nottingham.ac.uk'}",d602ca39-b287-4047-81c1-d635d3ceed5a,"{'spatial': ['United Kingdom,England,East Midlands'], 'followup': '1 - 10 YEARS', 'pathway': 'Secondary Care', 'typicalAgeRange': '18-80', 'physicalSampleAvailability': ['AVAILABILITY TO BE CONFIRMED']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'e09e1735-a54a-49cd-81f1-484040d76a5a'},"{'description': 'Beta-blocker Stratification using quantitative MRI techniques to assess portal pressure and Response to Treatment in patients with portal hypertension (B-SMaRT study).\n\nTo provide proof of concept that quantitative haemodynamic MRI markers can stratify the efficacy of carvedilol to lower clinically significant portal hypertension in patients with cirrhosis.\n\nDescriptive sequential pilot study of patients with cirrhosis, portal pressure measurement, research MRI (at 3T) and endoscopy with outcomes with repeat measures in those who are given Carvedilol'}",e09e1735-a54a-49cd-81f1-484040d76a5a,https://web.www.healthdatagateway.org/dataset/e09e1735-a54a-49cd-81f1-484040d76a5a,"{'access': {'deliveryLeadTime': 'VARIABLE', 'accessRights': ['In Progress'], 'jurisdiction': ['GB-ENG'], 'dataController': 'Professor Guruprasad Aithal', 'dataProcessor': 'N/A'}, 'formatAndStandards': {'format': ['Database'], 'conformsTo': ['DICOM', 'NHS DATA DICTIONARY', 'LOCAL'], 'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['NIHR Nottingham Biomedical Research Centre, Nottingham University Hospitals NHS Trust']}}","{'temporal': {'startDate': '2016-08-01', 'accrualPeriodicity': 'IRREGULAR', 'timeLag': 'VARIABLE'}, 'origin': {'collectionSituation': ['OUTPATIENTS'], 'purpose': ['STUDY'], 'source': ['PAPER BASED']}}",2022-03-14T11:45:46Z,"[{'observedNode': 'PERSONS', 'measuredValue': '46', 'observationDate': '01/08/2016', 'measuredProperty': 'Count'}]",1.0.0,,2022-03-14T11:45:46Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'SpiroMeta Consortium Dataset', 'keywords': ['BREATHE', 'SPIROMETA', 'GWAS'], 'publisher': {'name': 'BREATHE', 'contactPoint': 'breathe.saildatabank@swansea.ac.uk', 'memberOf': 'HUB'}, 'doiName': 'In Progress', 'abstract': '22 studies with quantitative lung function measures, 79,055 samples with FEV1 and FVC, 24,218 samples with peak expiratory flow.', 'contactPoint': 'breathe.saildatabank@swansea.ac.uk'}",fb6d98c5-e41d-4804-bb28-839556e0f657,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'The populations includes are broadly representative general populations, with differing age ranges (detailed in 10.1038/s41588-018-0321-7) and were not ascertained on disease status. Data from 22 studies with quantitative lung function measures, 79,055 samples with FEV1 and FVC, 24,218 samples with peak expiratory flow.', 'spatial': 'Worldwide', 'followup': '> 10 YEARS', 'typicalAgeRange': '15-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'b6e2f994-3570-4b48-8d66-11ff1e096d2f', '4.0.0': 'e172870f-37c4-4103-afae-8a60cae43ccb', '1.0.0': '6803bb01-a34e-4ffc-ba69-5146a34190b3', '2.0.0': 'f908efd6-c6ac-448b-89b9-222c50aec7c8', '3.0.0': '5d2758c6-b315-421f-9971-9df8ba83a2d4', 'latest': 'e172870f-37c4-4103-afae-8a60cae43ccb'}","{'description': 'https://www.nature.com/articles/s41588-018-0321-7', 'associatedMedia': ['https://www2.le.ac.uk/departments/health-sciences/research/gen-epi/staff-pages/mt47'], 'isPartOf': 'NOT APPLICABLE'}",e172870f-37c4-4103-afae-8a60cae43ccb,https://web.www.healthdatagateway.org/dataset/e172870f-37c4-4103-afae-8a60cae43ccb,"{'access': {'dataController': 'Department of Health Sciences, University of Leicester', 'accessService': 'Available as a flat file for researchers to download.', 'accessRequestCost': 'No cost to access full GWAS Summary statistics (https://www.ebi.ac.uk/gwas/publications/30804560)', 'accessRights': ['https://www.ebi.ac.uk/gwas/publications/30804560'], 'jurisdiction': 'GB', 'deliveryLeadTime': 'OTHER', 'dataProcessor': 'Department of Health Sciences, University of Leicester'}, 'usage': {'isReferencedBy': ['Shrine, N., Guyatt, A.L., Erzurumluoglu, A.M. et al. 2019. New genetic signals for lung function highlight pathways and chronic obstructive pulmonary disease associations across multiple ancestries. https://doi.org/10.1038/s41588-018-0321-7. Nat Genet 51, 481–493'], 'dataUseLimitation': 'GENERAL RESEARCH USE', 'dataUseRequirements': 'PROJECT SPECIFIC RESTRICTIONS', 'investigations': ['https://doi.org/10.1136/bmjresp-2020-000755'], 'resourceCreator': 'SpiroMeta Consortium. Please cite Shrine et al PMID: 30804560'}, 'formatAndStandards': {'vocabularyEncodingScheme': 'LOCAL', 'language': 'en', 'conformsTo': 'LOCAL', 'format': ['CSV']}}","{'origin': {'purpose': ['STUDY', 'DISEASE REGISTRY'], 'source': ['EPR', 'MACHINE GENERATED'], 'collectionSituation': ['CLINIC', 'COMMUNITY', 'HOME']}, 'temporal': {'endDate': '2019-02-25', 'timeLag': 'NOT APPLICABLE', 'startDate': '1966-01-01', 'accrualPeriodicity': 'STATIC', 'distributionReleaseDate': '2019-02-25'}}",2020-01-13T15:48:21Z,"[{'observedNode': 'Findings', 'measuredValue': '79,055', 'disambiguatingDescription': 'Samples with FEV1 and FVC\nFEV1 = Forced Expiratory Volume 1\nFVC = Forced Vital Capacity\n\n', 'observationDate': '2019-02-25', 'measuredProperty': 'Lung function'}, {'observedNode': 'Findings', 'measuredValue': '24,218', 'disambiguatingDescription': 'Samples with peak expiratory flow (further details in 10.1038/s41588-018-0321-7)', 'observationDate': '2019-02-25', 'measuredProperty': 'Lung function'}]",4.0.0,"{'qualifiedRelation': ['Not Available'], 'tools': ['https://doi.org/10.1136/bmjresp-2020-000755'], 'derivation': ['Not Available']}",2021-04-14T08:24:49Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Patient postcode linked deprivation measures for CPRD GOLD', 'abstract': 'CPRD GOLD linked small area level socio-demographic and socio-economic data mapped to the postcode of the patient, including the Index of Multiple Deprivation, Carstairs Index and Townsend Deprivation Index.', 'publisher': {'name': 'CPRD', 'identifier': '607db9c2e1f9d3704d570cee', 'memberOf': 'ALLIANCE'}, 'doiName': 'https://doi.org/10.48329/y101-0w14', 'keywords': ['Area level', 'Deprivation', 'Socioeconomic', 'SES'], 'contactPoint': 'enquiries@cprd.com'}",f5c9ba01-a9cb-4a85-9850-d9466b2ff4fb,"{'spatial': ['https://www.geonames.org/6269131/england.html'], 'followup': 'OTHER', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-115'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'3.0.0': '9f7608a0-2424-457d-ba50-f51a4444403b', '4.0.0': 'e17b9566-76e9-47b4-9cf9-26704e232992', '0.0.1': '999bf71b-1f04-4551-9e00-2bd4aea2fc4f', '2.0.0': 'bc6ae5bc-7175-49e2-b093-337dde427736', '1.0.0': '0e55bc1e-5cde-4c16-b704-0a0ff35bc70c', 'latest': 'e17b9566-76e9-47b4-9cf9-26704e232992'}","{'description': 'Patient postcode linked measures are available for patients in English practices that have consented to participate in the linkage scheme. Data are linked via Lower Super Output Area (LSOA), Super Output Area (SOA) in Northern Ireland and datazone (DZ) in Scotland. The latest available patient postcode of residence is mapped to an LSOA boundary. The LSOA of residence then allows linkage to the following LSOA-level deprivation measures:\n2004 English Index of Multiple Deprivation; 2007 English Index of Multiple Deprivation; 2010 English Index of Multiple Deprivation; 2015 English Index of Multiple Deprivation (composite and individual domains); Townsend Deprivation Index: calculated using unadjusted 2001 census data; Carstairs Index using 2011 census data.\n\nData are provided as quintiles, deciles or twentiles of the deprivation score to prevent disclosure of patient location. In order to prevent the possibility of deductive disclosure of a patients’ area of residence, researchers will only be provided with one of the above linked datasets for any one study.', 'isPartOf': 'CPRD GOLD', 'associatedMedia': ['https://www.cprd.com/linked-data']}",e17b9566-76e9-47b4-9cf9-26704e232992,https://web.www.healthdatagateway.org/dataset/e17b9566-76e9-47b4-9cf9-26704e232992,"{'formatAndStandards': {'vocabularyEncodingScheme': ['OTHER'], 'language': ['en'], 'conformsTo': ['OTHER'], 'format': ['Tab delimited text']}, 'access': {'dataProcessor': 'CPRD', 'dataController': 'Clinical Practice Research Datalink (CPRD)', 'accessService': 'Access to CPRD data, including UK Primary Care Data, and linked data such as Hospital Episode Statistics, is subject to protocol approval via CPRD’s Research Data Governance (RDG) Process. Independent scientific and patient advice is provided by Expert Review Committees (ERCs) and the Central Advisory Committee (CAC): https://www.cprd.com/research-applications', 'accessRequestCost': ['https://www.cprd.com/pricing'], 'jurisdiction': ['GB-ENG'], 'accessRights': ['HTTPS://CPRD.COM/DATA-ACCESS'], 'deliveryLeadTime': 'VARIABLE'}, 'usage': {'isReferencedBy': ['[]'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'NO LINKAGE', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'investigations': ['https://www.cprd.com/protocol-list'], 'dataUseRequirements': ['GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION']}}","{'origin': {'source': ['OTHER'], 'purpose': ['OTHER'], 'collectionSituation': ['OTHER']}, 'temporal': {'timeLag': 'NOT APPLICABLE', 'startDate': '1987-01-01', 'accrualPeriodicity': 'QUARTERLY', 'distributionReleaseDate': '2022-02-04'}}",2020-01-10T18:12:17Z,"[{'observedNode': 'PERSONS', 'measuredValue': 10559390, 'disambiguatingDescription': 'Number of CPRD GOLD patients eligible for postcode linkage', 'observationDate': '04/02/2022', 'measuredProperty': 'Count'}]",4.0.0,"{'tools': ['[]'], 'qualifiedRelation': ['CPRD GOLD', 'CPRD GOLD SGSS', 'CPRD GOLD CHESS', 'CPRD GOLD ICNARC', 'Death Registration data for CPRD GOLD', 'HES Admitted Patient Care data for CPRD GOLD', 'HES Outpatient data for CPRD GOLD', 'HES Accident and Emergency data for CPRD GOLD', 'HES Diagnostic Imaging Dataset for CPRD GOLD', 'Practice postcode linked deprivation measures for CPRD GOLD', 'Rural-Urban classification for CPRD GOLD', 'Cancer registration data for CPRD GOLD', 'National Radiotherapy Dataset (RTDS) for CPRD GOLD', 'Systemic Anti-Cancer Treatment (SACT) data for CPRD GOLD', 'Mental Health Dataset (MHDS) for CPRD GOLD', 'Mother-Baby Link for CPRD GOLD', 'Pregnancy Register for CPRD GOLD'], 'derivation': ['N/A']}",2022-02-18T12:01:28Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 7, 'structuralMetadata.tableName': 7, 'structuralMetadata.tableDescription': 7, 'structuralMetadata.dataElementsCount': 53, 'structuralMetadata.columnName': 53, 'structuralMetadata.columnDescription': 53, 'structuralMetadata.dataType': 53, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'c0d6b6c3-2575-482c-9c2d-8b37e65d2d7d', 'description': '2015 English Index of Multiple Deprivation (2011 LSOA boundaries)', 'name': 'IMD2015', 'dataElementsCount': 5, 'dataElements': '8ef2cbf4-72c9-4a10-98bc-3b80c1206f60, 7c9d1e30-1e02-4cfb-a24e-bbe5aef8b819, 1b5093d1-fdb4-4e7d-bf61-880d15f364a6, 585f821c-f080-4706-9fa6-1fea314ff17e, 8c23beb2-69b5-4953-b717-3e09585ee011'}, {'id': 'd35a0c53-f350-401a-86a7-7c8aab292fea', 'description': 'Townsend score: calculated at LSOA level using unadjusted 2001 census data', 'name': 'Townsend2001', 'dataElementsCount': 5, 'dataElements': 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"{'title': 'Cancer registry data for QResearch', 'abstract': 'QResearch linked National Cancer Registration and Analysis Service (NCRAS) cancer registration data contain a record for each notified, registrable tumour, diagnosed or treated in England.', 'publisher': {'name': 'QResearch', 'memberOf': 'ALLIANCE', 'identifier': '61ba059ac688870b12a4e05b'}, 'keywords': ['National Core Study', 'NCS'], 'contactPoint': 'qresearch@phc.ox.ac.uk'}",fd876055-ab0f-4562-9e8a-35efa3928b02,"{'followup': '> 10 YEARS', 'typicalAgeRange': '0-115', 'pathway': 'Multiple health care settings where cancer is diagnosed', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['United Kingdom,England']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'c6399a61-1da2-41e2-9e7f-63bf71decce7', '2.0.0': 'e17fbbfa-72e8-4642-8ec5-0fa25dd56a51', 'latest': 'e17fbbfa-72e8-4642-8ec5-0fa25dd56a51'}","{'description': 'QResearch linked National Cancer Registration and Analysis Service (NCRAS) cancer registration data contain a record for each notified, registrable tumour, diagnosed or treated in England.'}",e17fbbfa-72e8-4642-8ec5-0fa25dd56a51,https://web.www.healthdatagateway.org/dataset/e17fbbfa-72e8-4642-8ec5-0fa25dd56a51,"{'formatAndStandards': {'vocabularyEncodingScheme': ['ICD10', 'ICDO3'], 'format': ['CSV', 'TSV', 'Stata', 'SQL Server Database'], 'language': ['en'], 'conformsTo': ['NHS DATA DICTIONARY']}, 'access': {'dataController': 'University of Oxford', 'accessRights': ['https://www.qresearch.org/information/information-for-researchers/'], 'accessService': 'Remote Desktop to dedicated Windows Server.\n\nStandard Server Spec:\n16GB RAM, 4 Logical Xeon Gold Processors, 200 GB HDD\n\nMax available Server Spec:\n512GB RAM, 72 Logical Xeon Gold Processors, 2TB HDD. Tesla V100 GPU', 'jurisdiction': ['GB-ENG'], 'accessRequestCost': ['https://www.qresearch.org/information/information-for-researchers/'], 'dataProcessor': 'University of Oxford', 'deliveryLeadTime': 'MORE 6 MONTHS'}, 'usage': {'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'resourceCreator': ['National Cancer Registry'], 'investigations': ['https://www.qresearch.org/research/approved-research-programs-and-projects/'], 'dataUseRequirements': ['ETHICS APPROVAL REQUIRED', 'NOT FOR PROFIT USE']}}","{'temporal': {'timeLag': 'MORE 6 MONTHS', 'endDate': '2021-03-31', 'accrualPeriodicity': 'ANNUAL', 'startDate': '1997-04-01'}, 'origin': {'source': ['EPR'], 'purpose': ['CARE', 'DISEASE REGISTRY', 'ADMINISTRATIVE', 'STATUTORY'], 'collectionSituation': ['CLINIC']}}",2022-03-21T16:36:24Z,"[{'observationDate': '04/02/2022', 'measuredProperty': 'count', 'observedNode': 'EVENTS', 'measuredValue': '35047612'}]",2.0.0,,2022-06-08T09:52:45Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 72, 'structuralMetadata.columnName': 72, 'structuralMetadata.columnDescription': 72, 'structuralMetadata.dataType': 72, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'a2e04217-1eb8-4d06-ad9f-db949bcd7dd9', 'description': 'cancer registry', 'name': 'cancer registry', 'dataElementsCount': 72, 'dataElements': 'be3fdfb7-51be-4122-8130-67db819c8ef2, 8c6ff2df-4d1f-4f79-9a77-23e1bb37b931, 14c6ca21-b37c-4c4d-9ba1-0c250edbe5bb, bf9a111b-68f9-4b0a-b9ab-bde5568e3c46, 3f1e30a9-799c-4b58-9896-750715f87f5d, a5d522fe-be22-4735-af6a-23fc157e260c, 31e3de0f-38d6-4d41-939c-c6be6ce8aa3f, c32e0b1f-f34a-4580-a7ce-0f5c56ea7cb1, ed9a4f9e-15eb-4902-a640-c9d036b3f6a2, 070d7dcb-9489-47ca-83d0-a34dc376f8a5, b4c097f7-257d-4bc3-8d76-733d8493e311, 08b16aea-dafc-474d-81e5-9fe451bbed6d, c945f431-216a-4544-8ea0-685225908835, 33d6302a-e52d-4ba9-b27e-43c9aa9e5670, c18c1179-a877-4909-9d32-a6398584ca18, 336d8d41-c3d4-49bf-ae07-af0b8fa300e6, 3252240d-fc42-4b42-b038-cf4b511355f8, 8a1cdb02-eabf-4d9a-8572-a1801d118b06, 8d257cf8-284f-4568-96a0-28dddab3911f, a53f08a6-0807-478b-8269-dcd893bd98bf, 9c3c84cf-abd9-4853-b7f5-24ffd97e492f, 6ada9665-82f5-4e45-8baf-83a58621393b, 89522f80-51ec-42e7-a102-7bbac07dea84, e99f588d-774c-4f19-b127-4c10afab4c53, 5eb9799d-d64c-414c-a76c-8f4c39d60f00, fa651e54-06dd-4943-8e46-585259b30ed3, 6767bfda-e3b0-4a27-97dd-122d4dc81001, fe36e01c-391e-4ce6-a4c7-5de35102a31b, a31eb29c-45c1-4527-ac09-6bebb420b0d9, 1695d449-39c7-4e8e-b692-30dda7d62120, 490aa593-0725-4e84-927d-8c15862267f4, 83ecd2d9-1c3a-482e-8466-bdf2db58e335, 0f225e79-9b84-4f27-9d10-9783102b3a02, 4b0a0705-0519-48e4-adec-7fd49b833ba9, 7ea5a79a-e17c-48b7-9e6a-f98007cef230, 53bada62-4449-44c0-b5a1-c1f1468ed234, ce2523fc-8091-482f-8096-54cd1ccdeda4, 430ceda7-e91a-402c-9673-447fc6cf415b, c35f70e7-031e-4324-a738-f13508df99e6, b7eac9a6-1a95-4d84-af5c-2622f22b8c6d, be49d3cc-30a7-4f47-9557-779e1a645751, bd555371-f215-4063-a30b-288696910108, a1ce2844-af42-4983-98c6-900d5552b1e2, ee2b936d-2508-42ad-ba2d-f63a8288b36e, 088824b5-632d-469b-b8e2-6d591426bf81, f6a966b1-8aef-4e2b-9518-f1434bcacf0f, 08c2d456-e00d-4193-95bb-c35582ab7093, 53714cf8-1ddd-4dd9-909e-ca8a24c8744f, 56d73915-ca8b-4243-96b8-c56c80a5e08c, c0e49a3b-f7da-43ee-b7a9-990561c22c63, 669068ef-868c-42ed-ba82-90cb304e41b4, 9f9872e8-8c13-41c7-a4e6-2d1716d01f07, ef9a91e4-9017-4a12-93b9-300d976a90e3, 5facf162-753a-41e6-a89a-4be10ea5b254, d1b1f52f-b898-401d-9750-992e592ea7a2, 0986cddd-83ac-4716-9921-25c1d704ab4b, ee8d6464-24db-4389-8e97-f1c1a4861fb9, 8c60c6b1-ae85-47a4-93e3-f771574c1f3b, d72794b6-08e6-456e-905f-3d43142678ec, 1f18e0f9-c21c-4cd5-9dd6-4b0cafa5b89e, d6fa1cb8-56c3-4800-b0b7-a047b01e4856, 3c10c1ba-843d-4198-9484-7580ba06b869, d7a80fed-1bdb-4adf-8dd1-841bf5176cc9, 09aec89b-23fa-4da4-a5c5-330e570d1d55, 83d163eb-f391-42ba-8436-70c50e06dced, 941eb203-4555-4d50-94a6-f0914b157016, ba014bc1-0aa7-4bfd-a602-4acda5736d20, af9ccd1d-49e4-48ac-a286-8540b0405de6, 77d946b7-4fad-4a10-9f3d-68d41bb68aec, 9033f7de-bb4f-4d2b-a6c6-9d49e1886d15, b0d664c3-469a-4816-bac4-63b68cf83ed6, 39d94b18-046b-4543-b2dc-649f7a71213e'}]}"
"{'title': 'Coagulopathies & arterial/venous thrombosis in COVID patients: an OMOP dataset', 'publisher': {'memberOf': 'HUB', 'contactPoint': 'PIONEER@UHB.NHS.UK', 'name': 'PIONEER'}, 'contactPoint': 'PIONEER@UHB.NHS.UK', 'abstract': 'Hosp patients admitted during COVID pandemic with coagulopathies including venous thromboembolic events & bleeds. Granular condition, multi-morbidity, interventions & treatments. Serial physiology, blood biomarkers, ITU spells, outcome. Deeply phenotyped.', 'keywords': ['NHS', 'Acute', 'Thrombosis', 'VTE', 'HAT', 'venous', 'arterial', 'bleed', 'clots', 'clotting', 'INR', 'APPT', 'prothrombin', 'platelets', 'thrombophlebitis', 'COVID', 'pneumonia', 'pneumonitis', 'NEWS2', 'deterioration', 'alert', 'SEWS', 'oxygen', 'non-invasive ventilation', 'high flow oxygen', 'CPAP', 'patient', 'acute hospitals', 'inpatient', 'ethnicity', 'multimorbidity', 'blood', 'biomarkers', 'physiology', 'demographics', 'treatments', 'therapies', 'aspirin', 'anti-coagulants', 'vitamin k', 'transfusions', 'interventions', 'outcomes', 'death', 'longitudinal', 'vital signs'], 'doiName': 'https://web.www.healthdatagateway.org/dataset/dd4629c0-14b6-4cba-8dcf-31ec5fea68bb'}",dd4629c0-14b6-4cba-8dcf-31ec5fea68bb,"{'spatial': 'West Midlands Region, UK', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': '0 - 6 MONTHS', 'typicalAgeRange': '18-110', 'pathway': 'Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data. Data includes those with and without COVID admitted during the first wave of the COVID pandemic.'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '2f8f1d52-3999-40af-9dc8-9fefa0ab348f', '1.0.0': 'e22f93fb-bc08-44eb-b292-dc2baf0ad343', 'latest': 'e22f93fb-bc08-44eb-b292-dc2baf0ad343'}","{'description': 'In December 2019, the first case of severe acute respiratory syndrome coronavirus 2 (SARS-COV-2) was described and by March 2020, the World Health Organization had declared the disease (Coronavirus disease 2019, COVID-19) a pandemic.  Whilst respiratory symptoms are the fundamental feature of the disease, evidence indicates that the disease is associated with coagulation dysfunction which predisposes patients to an increased risk of both venous and arterial thromboembolism (TE) and potentially increased mortality risk as a consequence.  Biomarkers associated with TE (D-dimers) are often raised in people with COVID but without clear evidence of TE.  It is important to understand who is at most risk of TE, to manage disease effectively.  This dataset (in OMOP) describes patients with and without COVID who were admitted to UHB including all those with and without TE. \n\nPIONEER geography\nThe West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix.  Birmingham was hard hit by all COVID waves and University Hospitals Birmingham NHS Foundation Trust (UHB) had >8000 COVID admissions by the end of December 2020.\n\nEHR. UHB is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.  \n\nScope: All patients admitted during the first wave of the COVID-19, both with and without COVID.  The dataset includes highly granular patient demographics & co-morbidities taken from ICD-10 & SNOMED-CT codes.  Serial, structured data pertaining to acute care process (timings, staff grades, specialty review, wards), presenting complaint, SARS-CoV-2 swab result, diagnosis of TE, clotting parameters, D-Dimers, acuity, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations), all blood results, imaging reports, all prescribed & administered treatments (fluids, antibiotics, inotropes, vasopressors, organ support), all outcomes.  \n\nAvailable supplementary data:  Matched controls; ambulance, synthetic data. \n\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.', 'associatedMedia': ['https://www.pioneerdatahub.co.uk/wp-content/uploads/Coagulopathy-OMOP-infographic-V2-page-001-1216x1536.jpg', ''], 'isPartOf': 'Part of the DECOVID dataset'}",e22f93fb-bc08-44eb-b292-dc2baf0ad343,https://web.www.healthdatagateway.org/dataset/e22f93fb-bc08-44eb-b292-dc2baf0ad343,"{'access': {'jurisdiction': 'GB', 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'accessRequestCost': 'www.pioneerdatahub.co.uk/data/data-services-costs/', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'deliveryLeadTime': '1-2 MONTHS', 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'dataProcessor': 'NOT APPLICABLE'}, 'formatAndStandards': {'format': ['SQL'], 'conformsTo': 'OMOP', 'vocabularyEncodingScheme': ['SNOMED CT', 'ICD10'], 'language': 'en'}, 'usage': {'dataUseRequirements': 'PROJECT SPECIFIC RESTRICTIONS', 'dataUseLimitation': 'RESEARCH USE ONLY', 'isReferencedBy': ['Sawlani, V., Scotton, S., Nader, K., Jen, J. P., Patel, M., Gokani, K., Denno, P., Thaller, M., Englezou, C., Janjua, U., Bowen, M., Hoskote, C., Veenith, T., Hassan-Smith, G., & Jacob, S. (2021). COVID-19-related intracranial imaging findings: a large single-centre experience. Clinical radiology, 76(2), 108–116. https://doi.org/10.1016/j.crad.2020.09.002'], 'investigations': ['https://www.decovid.org'], 'resourceCreator': 'This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)'}}","{'origin': {'source': 'EPR', 'collectionSituation': ['OUTPATIENTS', 'IN-PATIENTS', 'COMMUNITY'], 'purpose': 'OTHER'}, 'temporal': {'accrualPeriodicity': 'STATIC', 'distributionReleaseDate': '2020-12-08', 'timeLag': 'LESS 1 WEEK', 'endDate': '2020-09-09', 'startDate': '2020-01-01'}}",2021-01-27T17:08:53Z,"[{'observedNode': 'Events', 'measuredValue': '50,899 patients including Coagulopathy and Non-Coagulopathy control group.', 'disambiguatingDescription': 'NOT APPLICABLE', 'observationDate': '2020-12-09', 'measuredProperty': 'Count'}]",1.0.0,,2021-02-17T17:39:15Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 10, 'structuralMetadata.tableName': 10, 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"{'title': 'The impact of multimorbidity on care pathways during COPD hospitalisations', 'keywords': ['Multiple long term conditions', 'COPD', 'Chronic Obstructive Pulmonary Disease', 'Co morbidity', 'Cardiovascular Disease', 'Diabetes', 'renal disease', 'osteoporosis', 'patient pathways', 'multimorbidity', ' MLTCs', 'ward transfers', 'outliers', 'ventilation', 'NIV', 'ITU', 'physiology', 'NEWS2', 'blood pressure', 'laboratory results', 'arterial blood gas', 'Oxygen', 'nebulisers', 'salbutamol', 'prednisolone', 'antibiotics'], 'publisher': {'identifier': '607db9c5e1f9d3704d570d5f', 'memberOf': 'HUB', 'name': 'PIONEER'}, 'contactPoint': 'PIONEER@UHB.NHS.UK', 'abstract': 'Deeply phenotyped data on patients hospitalised with COPD with and without other conditions to map pathways and outcomes.  Granular multi-morbidity data, investigations, investigations and treatments.  Serial physiology, laboratory results, outcomes.'}",76167567-9221-4024-bccf-dfdfb9e4bb07,"{'spatial': ['https://www.geonames.org/2634343/west-midlands.html'], 'typicalAgeRange': '20-95', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Data is representative of the multi-ethnicity population within the West Midlands (42% non white). Data includes all patients admitted during this timeframe, with National data Opt Outs applied, and therefore is representative of admissions to secondary care. Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.', 'followup': '1 - 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'e38ceae6-1ef7-4a26-90c9-9b0c920b3df7'},"{'description': 'Many patients admitted to hospital have multiple long-term conditions (MLTCs), also known as multimorbidity. Despite this, care delivery in hospital is designed for the treatment of single conditions. Often, the care of patients with multimorbidity can be unsatisfactory, inefficient and expensive.\n\nChronic Obstructive Pulmonary Disease (COPD) is associated with a high burden of co-morbidities which tend to co-exist in specific disease clusters. Recognising their presence enables holistic patient management, but also offers opportunities to identify common biological mechanisms across diseases which might be therapeutically targetable.    \n\nThe most common comorbidities in COPD include cardiovascular disease, diabetes, depression and osteoporosis.  Often presentations are badged as exacerbations and alternative causes of breathlessness are missed.   \n\nThis dataset includes 846 patients with COPD admitted to hospital. The infographic includes data from 01/01/2018 to 31/12/2018, but data is available from the past 10 years+.  Data includes detailed demography, presenting symptoms, co-morbidities, admission diagnosis, laboratory tests, serial physiology, prescribed and administered drugs, use of non-invasive and invasive ventilation, and outcomes. Data can be matched to lung function for a proportion of patients. \n\nPIONEER geography: The West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix.\n\nUHB is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”. \n\nScope: All patients admitted to hospital for COPD exacerbations. Longitudinal & individually linked, so that the preceding & subsequent health journey can be mapped & healthcare utilisation prior to & after admission understood. The dataset includes highly granular patient demographics, co-morbidities taken from ICD-10 & SNOMED-CT codes. Serial, structured data pertaining to process of care (timings, admissions, wards), presenting complaint, physiology readings (temperature, BMI, blood pressure, respiratory rate, NEWS2 score, oxygen saturations and others), Sample analysis results (urea, albumin, platelets, white blood cells and others) drug administered and all outcomes.  Linked images available (radiographs, CT scans, MRI). \n\nAvailable supplementary data: Matched controls; ambulance, OMOP data, synthetic data. \n\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.'}",e38ceae6-1ef7-4a26-90c9-9b0c920b3df7,https://web.www.healthdatagateway.org/dataset/e38ceae6-1ef7-4a26-90c9-9b0c920b3df7,"{'access': {'jurisdiction': ['GB-ENG'], 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'deliveryLeadTime': '1-2 MONTHS', 'dataProcessor': 'NOT APPLICABLE', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/']}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'format': ['SQL'], 'vocabularyEncodingScheme': ['SNOMED CT', 'ICD10']}, 'usage': {'resourceCreator': ['This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}}","{'temporal': {'endDate': '2018-12-31', 'distributionReleaseDate': '2021-12-17', 'timeLag': 'OTHER', 'startDate': '2018-01-01', 'accrualPeriodicity': 'QUARTERLY'}, 'origin': {'purpose': ['CARE'], 'collectionSituation': ['ACCIDENT AND EMERGENCY', 'IN-PATIENTS', 'OUTPATIENTS'], 'source': ['EPR']}}",2022-02-02T12:49:22Z,"[{'measuredProperty': 'Count', 'observedNode': 'EVENTS', 'measuredValue': '846', 'disambiguatingDescription': '846 admissions of worsening COPD between 01-01-2018 to 31-12-2018', 'observationDate': '17/12/2021'}]",1.0.0,{'derivation': ['Not Available']},2022-02-02T12:49:22Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 7, 'structuralMetadata.tableName': 7, 'structuralMetadata.tableDescription': 7, 'structuralMetadata.dataElementsCount': 108, 'structuralMetadata.columnName': 108, 'structuralMetadata.columnDescription': 108, 'structuralMetadata.dataType': 108, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '417b0d2d-cc13-46ac-81c3-8546019be477', 'description': 'Spell admission details', 'name': 'PDR41Admission', 'dataElementsCount': 24, 'dataElements': 'cd1a731e-9032-4252-8c8c-f0ebdaa9b55b, b6894522-378e-491d-a33c-8884c91da1d8, 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"{'title': 'eLIXIR - Early Life Data Cross-Linkage in Research', 'publisher': {'contactPoint': 'carolyn.gill@kcl.ac.uk', 'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE'}, 'doiName': 'Not Available', 'keywords': ['eLIXIR', 'Early Life Data', 'UKCRC Tissue Directory', 'Cross-Linkage', 'Fit and well'], 'abstract': 'Collection of samples and data across the following diseases: Fit and well', 'contactPoint': 'carolyn.gill@kcl.ac.uk'}",c8cd0645-b728-4c62-84b8-036c1d8763be,"{'typicalAgeRange': '15-44', 'spatial': 'England', 'physicalSampleAvailability': ['PLASMA', 'SERUM', 'WHOLE BLOOD']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '6ebf4646-e91e-4b9a-ac51-ece23a435042', '3.0.0': 'e443bc67-bc8a-430b-88a9-d3380cd2ae38', '2.0.0': 'fcee6c99-a4bd-44b8-a28e-dc63337ce216', '0.0.1': '06a539be-c63f-4ba7-9a84-8f4a33bf08a3', 'latest': 'e443bc67-bc8a-430b-88a9-d3380cd2ae38'}","{'description': ""The embryo, foetus and new born child are very sensitive to external influences during development. These can arise from problems with the mother's health, her lifestyle, her physical environment, medication, the placenta not working properly, complications during birth, or as consequence of being born too early. Adversity in these periods of developmental vulnerability can have persistent effects on the long-term health of the child, including physical and mental health disorders. We also know that if a mother has complications in pregnancy, that she herself may suffer from increased risk of ill-heath in later life, for example cardiovascular disease, diabetes or mental health problems. \n\neLIXIR is a prospective collection of blood samples from routine antenatal and neonatal appointments and is due to begin collecting in 2018."", 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",e443bc67-bc8a-430b-88a9-d3380cd2ae38,https://web.www.healthdatagateway.org/dataset/e443bc67-bc8a-430b-88a9-d3380cd2ae38,"{'access': {'jurisdiction': 'GB-ENG', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'accessRequestCost': 'Not specified', 'dataProcessor': 'Not Applicable', 'dataController': ""King's College London""}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}}","{'temporal': {'distributionReleaseDate': '2018-08-10', 'startDate': '2018-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:05:19Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T15:57:53Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'IBD Registry', 'keywords': ['Inflammatory Bowel Disease', 'IBD', ""Crohn's"", 'colitis', 'NHS', 'pharmacovigilance', 'Clinical Audit dataset'], 'publisher': {'name': 'GUT REACTION', 'identifier': '607db9c3e1f9d3704d570d0a', 'memberOf': 'HUB'}, 'abstract': 'The IBD Registry captures longitudinal clinical data on IBD patients from NHS Trusts. The dataset includes demographics; diagnosis and phenotype; medications (greater details on biologics); interventions; clinical assessment and PROMS.', 'contactPoint': 'analysis@ibdregistry.org.uk'}",a406d06b-350e-4392-ab4e-b1012e422a34,"{'spatial': ['https://www.geonames.org/2635167/united-kingdom.html'], 'typicalAgeRange': '18-100', 'followup': 'CONTINUOUS', 'pathway': 'N/A', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'a0e8e013-fc61-466e-a49a-ccc41357898e', '4.0.0': 'e4a1be81-8f3c-4731-ae8a-7cbd594c78f5', '1.0.0': '58fba007-a656-4d88-94c0-febaf3131908', '2.0.0': '97ddd990-f47a-40f5-9178-cbf742e4c613', '3.0.0': '05eadf79-02a7-4c1f-b1be-93694172a9b3', 'latest': 'e4a1be81-8f3c-4731-ae8a-7cbd594c78f5'}","{'description': 'The IBD Registry captures longitudinal clinical data on patients with IBD at point of care from NHS Trusts across the UK. All patient records have a recorded diagnosis.  The dataset includes broad demographics; phenotype of the disease; medications, plus greater details on biological treatments; clinical assessment and patient-reported outcomes. The dataset is available for retrospective studies (service evaluation and quality of care), and for research with prospective recruitment of consented patients for data already held. The dataset is currently held by NHS Digital, with explicit permissions for linkage, and as such is linkable to NHS Digital datasets such as HES.', 'associatedMedia': ['https://ibdregistry.org.uk'], 'isPartOf': 'Not Applicable'}",e4a1be81-8f3c-4731-ae8a-7cbd594c78f5,https://web.www.healthdatagateway.org/dataset/e4a1be81-8f3c-4731-ae8a-7cbd594c78f5,"{'access': {'deliveryLeadTime': '1-2 MONTHS', 'jurisdiction': ['GB'], 'dataController': 'IBD Registry Ltd', 'accessRequestCost': ['https://ibdregistry.org.uk/analysis-research'], 'accessService': ""Data may only be accessed in the IBD Registry's approved Trusted Research Environment and only by the IBD Registry team (no external analysis permitted)"", 'accessRights': ['https://ibdregistry.org.uk/analysis-research'], 'dataProcessor': 'Data processors are approved members of staff at the health data centre (AIMES, https://aimes.uk/) and NHS Digital (England and Wales).'}, 'usage': {'investigations': ['https://ibdregistry.org.uk/analysis-research'], 'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION', 'ETHICS APPROVAL REQUIRED', 'GEOGRAPHICAL RESTRICTIONS'], 'resourceCreator': ['IBD Registry Ltd']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['ICD10'], 'language': ['en'], 'conformsTo': ['NHS DATA DICTIONARY'], 'format': ['text', 'csv']}}","{'origin': {'purpose': ['DISEASE REGISTRY'], 'source': ['OTHER INFORMATION SYSTEM', 'ELECTRONIC SURVEY', 'EPR'], 'collectionSituation': ['CLINIC', 'IN-PATIENTS', 'OUTPATIENTS', 'ACCIDENT AND EMERGENCY']}, 'temporal': {'timeLag': '1-2 MONTHS', 'startDate': '2016-01-13', 'distributionReleaseDate': '2021-10-31', 'accrualPeriodicity': 'QUARTERLY'}}",2020-01-13T15:06:56Z,"[{'observedNode': 'PERSONS', 'disambiguatingDescription': 'Persons (patients) with confirmed clinical diagnosis of IBD under the care of an NHS hospital', 'measuredValue': '82268', 'observationDate': '26/10/2021', 'measuredProperty': 'COUNT'}, {'observedNode': 'EVENTS', 'disambiguatingDescription': 'Medication events associated with PATIENTS in the IBD Registry dataset', 'measuredValue': '106146', 'observationDate': '26/10/2021', 'measuredProperty': 'COUNT'}, {'observedNode': 'EVENTS', 'measuredValue': '69263', 'disambiguatingDescription': 'Biologics (biological agents) treatment events  associated with PATIENTS in the IBD Registry dataset', 'observationDate': '26/10/2021', 'measuredProperty': 'COUNT'}, {'observedNode': 'EVENTS', 'measuredValue': '274631', 'disambiguatingDescription': 'Contact events recorded by secondary care clinical teams associated with PATIENTS in the IBD Registry dataset', 'observationDate': '26/10/2021', 'measuredProperty': 'COUNT'}, {'observedNode': 'FINDINGS', 'measuredValue': '7060', 'disambiguatingDescription': 'PROMS (patient reported outcomes) associated with PATIENTS in the IBD Registry dataset', 'observationDate': '26/10/2021', 'measuredProperty': 'COUNT'}, {'observedNode': 'EVENTS', 'measuredValue': '19568', 'disambiguatingDescription': 'Admission events (admission to an NHS hospital) associated with PATIENTS in the IBD Registry dataset', 'observationDate': '26/10/2021', 'measuredProperty': 'COUNT'}, {'observedNode': 'EVENTS', 'measuredValue': '11968', 'disambiguatingDescription': 'Surgery events associated with PATIENTS in the IBD Registry dataset', 'observationDate': '26/10/2021', 'measuredProperty': 'COUNT'}]",4.0.0,{'derivation': ['']},2021-11-05T10:52:40Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Care Home Dataset (CARE)', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '5f3f98068af2ef61552e1d75', 'name': 'SAIL'}, 'abstract': 'This database contains residential and geographical information data about care homes in Wales.', 'keywords': ['CARE', 'SAIL', 'core-res']}",aae02f9e-1bad-415d-9730-c46a07a990aa,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2634895/wales.html'], 'typicalAgeRange': '65-85', 'followup': 'OTHER', 'pathway': 'Secondary care'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'3.0.0': '12a0347c-7244-4a59-8335-f25495934dea', '4.0.0': 'e4a745d6-f44c-481a-b337-aae4cfe72594', 'latest': 'e4a745d6-f44c-481a-b337-aae4cfe72594'}","{'description': 'This database contains residential and geographical information data about care homes in Wales.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://saildatabank.com/about-us/overview/']}",e4a745d6-f44c-481a-b337-aae4cfe72594,https://web.www.healthdatagateway.org/dataset/e4a745d6-f44c-481a-b337-aae4cfe72594,"{'access': {'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'accessRights': ['https://saildatabank.com/application-process/'], 'deliveryLeadTime': '2-6 MONTHS', 'jurisdiction': ['GB-WLS'], 'dataController': 'SAIL Databank', 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'dataProcessor': 'SAIL Databank'}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['[""SAIL""]'], 'isReferencedBy': ['Joe Hollinghurst, Richard Fry, Ashley Akbari, Alan Watkins, Neil Williams, Sarah Hillcoat-Nallétamby, Ronan A Lyons, Andrew Clegg, Sarah E Rodgers, Do home modifications reduce care home admissions for older people? A matched control evaluation of the Care & Repair Cymru service in Wales, Age and Ageing, Volume 49, Issue 6, November 2020, Pages 1056–1061, https://doi.org/10.1093/ageing/afaa158'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION']}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL'], 'format': ['SQL database table']}}","{'temporal': {'accrualPeriodicity': 'STATIC', 'distributionReleaseDate': '2019-05-21', 'endDate': '2020-06-01', 'timeLag': '6 MONTHS PLUS', 'startDate': '2018-05-09'}, 'origin': {'purpose': ['STUDY', 'CARE', 'AUDIT', 'ADMINISTRATIVE', 'FINANCIAL'], 'source': ['EPR'], 'collectionSituation': ['PRIVATE']}}",2021-09-13T14:16:33Z,"[{'observedNode': 'EVENTS', 'measuredValue': '3000000', 'disambiguatingDescription': 'Approx 70-80% coverage of Welsh population through GP registrations.', 'observationDate': '01/09/2021', 'measuredProperty': 'Count'}]",4.0.0,"{'tools': ['https://conceptlibrary.saildatabank.com/'], 'qualifiedRelation': ['Linkable with other datasets with a residential anonymised linkage field (RALF).'], 'derivation': ['Not Available']}",2021-09-13T14:18:08Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 2, 'structuralMetadata.tableName': 2, 'structuralMetadata.tableDescription': 2, 'structuralMetadata.dataElementsCount': 19, 'structuralMetadata.columnName': 19, 'structuralMetadata.columnDescription': 19, 'structuralMetadata.dataType': 19, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '1b1de68a-0566-4ad8-92bd-9cf9929d6c07', 'description': 'Care Home Residential Anonymised Linkage Field data. 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"{'title': 'NHS Scotland General Practice (GP) Contact Data - Subset', 'publisher': {'name': 'PUBLIC HEALTH SCOTLAND', 'memberOf': 'ALLIANCE', 'identifier': '5f8992a97150a1b050be0712'}, 'keywords': ['GP', 'Contacts', 'National Core Study', 'NCS', 'COVID-19'], 'abstract': 'This dataset contains a subset of information relating to GP contacts in Scotland and the reason for the contact.', 'contactPoint': 'phs.edris@nhs.net'}",8f486c3d-9504-4a0e-8e24-ab96f057fc9e,"{'followup': 'OTHER', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'General Practice only', 'typicalAgeRange': '0-150', 'spatial': ['https://www.geonames.org/2638360/scotland.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'a021f150-41e6-48c3-807c-a0cefa4cb2c2', '3.0.0': 'e5a0c70c-7429-487d-8dc7-04cf073191cc', '1.0.0': '80b54fc9-8dc0-4134-880d-ffa8d4473204', '2.0.0': 'b87dda75-59ac-4b33-97c0-439b4771babe', 'latest': 'e5a0c70c-7429-487d-8dc7-04cf073191cc'}",{'description': 'This dataset is a snapshot containing predefined indicator variables relating to GP contacts for the EAVEII cohort in Scotland.\n\nPlease note that permission to use this dataset requires additional permissions from GP community representatives.'},e5a0c70c-7429-487d-8dc7-04cf073191cc,https://web.www.healthdatagateway.org/dataset/e5a0c70c-7429-487d-8dc7-04cf073191cc,"{'access': {'accessRequestCost': ['Research Projects - https://www.isdscotland.org/Products-and-Services/eDRIS/', 'Bespoke data analysis requests - https://publichealthscotland.scot/contact-us/bespoke-data-analysis-requests/'], 'dataProcessor': 'Public Health Scotland', 'jurisdiction': ['GB-GBN'], 'accessService': 'Scottish National Data Safe Haven - https://www.isdscotland.org/Products-and-Services/eDRIS/', 'accessRights': ['https://www.informationgovernance.scot.nhs.uk/pbpphsc/', 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"{'title': 'National Asthma and COPD Audit Programme (NACAP): COPD secondary care clinical dataset', 'abstract': 'A continuously ascertained, record level dataset of patients admitted to hospital in England and Wales. Includes information on patient demographics, acute observations, admission and review, comorbidities and discharge.', 'publisher': {'name': 'HQIP', 'memberOf': 'ALLIANCE', 'contactPoint': 'DataSharing@hqip.org.uk'}, 'keywords': ['Asthma', 'Secondary care', 'COPD', 'NACAP', 'Clinical Dataset', 'Audit'], 'contactPoint': 'DataSharing@hqip.org.uk'}",85b4dc84-88f4-4740-80fa-fa1eb04a0ae6,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '81af4f30-a586-4d10-b05b-074f33ab92b5', '4.0.0': 'e6433c92-8439-4e2e-a3e7-016e7812dcfb', '1.0.0': 'c4548591-152a-4230-afdd-cf660951725b', '2.0.0': 'bdc91cd1-7ec4-4ac8-baa0-c59561efc655', '3.0.0': '1a0af437-ec80-4db7-9c76-a2418cc8c5c8', 'latest': 'e6433c92-8439-4e2e-a3e7-016e7812dcfb'}","{'description': 'A continuously ascertained, record level dataset of patients admitted to hospital in England and Wales with COPD since February 2017, with Scotland joining in late 2018. The dataset includes', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",e6433c92-8439-4e2e-a3e7-016e7812dcfb,https://web.www.healthdatagateway.org/dataset/e6433c92-8439-4e2e-a3e7-016e7812dcfb,"{'access': {'deliveryLeadTime': 'OTHER', 'jurisdiction': 'GB-GBN', 'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data\nhttps://www.rcplondon.ac.uk/projects/outputs/national-asthma-and-copd-audit-programme-nacap-resources'}, 'formatAndStandards': {'language': ['en']}}",,2020-01-13T14:55:15Z,,4.0.0,,2021-04-14T08:13:23Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Emergency Laparotomy Audit - Patient Audit Dataset', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'HQIP', 'identifier': '607db9c4e1f9d3704d570d23'}, 'abstract': 'Contains patient level data on the input, processes, and outcomes of care for adults undergoing emergency laparotomy (bowel surgery) in England and Wales. This is a continuous audit.', 'keywords': ['Bowel', 'Audit', 'Surgery', 'Emergency laparotomy', 'NELA'], 'contactPoint': 'DataSharing@hqip.org.uk'}",25b93812-191f-49bb-bbd0-782fb85b2bd2,"{'pathway': 'Adult patients aged 18 and over who undergo an expedited, urgent or emergency (NCEPOD definitions) abdominal procedure on the gastrointestinal tract; this includes open, laparoscopic, or laparoscopically-assisted procedures involving the stomach, small or large bowel, or return for conditions such as perforation, ischaemia, abdomical abcess, bleeding, or obstruction.\nEach year, over 20,000 patients undergoing emergency laparotomy are included in the NELA database; since inception, there have been over 165,000 patients registered', 'spatial': ['https://www.geonames.org/6269131', 'https://www.geonames.org/2634895'], 'typicalAgeRange': '18-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'UNKNOWN'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '3f299029-3126-4ce0-893c-4a759cbe90b1', '5.0.0': 'e70f4e13-440b-4dec-a13c-c17d9d9da553', '0.0.1': 'd0c2e540-a891-4270-9dda-57c355143181', '1.0.0': 'a5eb6a36-91db-405e-a065-cb13456d8ba7', '4.0.0': '3a986158-0593-43e9-bd8c-359e701dd0f2', '3.0.0': '59937ec3-73e7-43d3-8205-bd05dcf9e734', 'latest': 'e70f4e13-440b-4dec-a13c-c17d9d9da553'}","{'description': 'Contains patient level data on the input, processes, and outcomes of care for adults undergoing emergency laparotomy (bowel surgery) in England and Wales. This is a continuous audit. The Year 8 audit questionnaire can be found here: https://data.nela.org.uk/Support/YEAR-8-NELA-Patient-Audit-Questions-Proforma-Activ.aspx. \n\nData is collected on patient demographics and hospital admission information, preoperative information, preoperative risk stratification, intraoperative information, postoperative risk stratification, postoperative information and outcomes, and COVID-specific questions.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)', 'associatedMedia': ['https://www.hqip.org.uk/a-z-of-nca/emergency-laparotomy/']}",e70f4e13-440b-4dec-a13c-c17d9d9da553,https://web.www.healthdatagateway.org/dataset/e70f4e13-440b-4dec-a13c-c17d9d9da553,"{'formatAndStandards': {'conformsTo': ['LOCAL'], 'format': ['Excel', 'CSV'], 'vocabularyEncodingScheme': ['OPCS4', 'NHS NATIONAL CODES'], 'language': ['en']}, 'access': {'accessRequestCost': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data', 'https://www.nela.org.uk/NELA_Research'], 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England', 'dataProcessor': 'Royal College of Anaesthetists', 'accessRights': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data', 'https://www.nela.org.uk/NELA_Research'], 'deliveryLeadTime': 'VARIABLE', 'jurisdiction': ['GB-EA']}, 'usage': {'dataUseLimitation': ['NO RESTRICTION'], 'resourceCreator': [""Please attribute NELA as 'The National Emergency Laparotomy Audit (NELA), Royal College of Anaesthetists'. When describing funding please include the following statement 'NELA was commissioned by the Healthcare Quality Improvement Partnership (HQIP), funded by NHS England and Welsh Government and it is part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP).'\xa0""], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE']}}","{'temporal': {'accrualPeriodicity': 'ANNUAL', 'startDate': '2019-12-01', 'endDate': '2020-11-30', 'timeLag': 'VARIABLE'}, 'origin': {'purpose': ['AUDIT'], 'source': ['OTHER'], 'collectionSituation': ['IN-PATIENTS', 'ACCIDENT AND EMERGENCY']}}",2020-01-13T10:40:43Z,"[{'observedNode': 'PERSONS', 'measuredValue': '165000', 'observationDate': '05/05/2021', 'measuredProperty': 'Count'}]",5.0.0,"{'derivation': ['Not Available'], 'tools': [''], 'qualifiedRelation': ['Linked data release is subject to permission from other data custodians.']}",2021-11-29T21:30:05Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'IDRIS Trial', 'contactPoint': 'ctc.idris@ucl.ac.uk', 'publisher': {'contactPoint': 'ctc.idris@ucl.ac.uk', 'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY'}, 'keywords': ['Trial', 'UKCRC Tissue Directory', 'IDRIS', 'Plasmacytoma - category (morphologic abnormality)'], 'doiName': 'Not Available', 'abstract': 'Collection of samples and data across the following diseases: Plasmacytoma - category (morphologic abnormality)'}",8437b207-c925-4dd1-9478-5af329cd736e,"{'spatial': 'England', 'typicalAgeRange': '15-150', 'physicalSampleAvailability': ['IN PROGRESS']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '179c21cd-41e0-489b-82c4-1bec011c562f', '3.0.0': 'e7979d81-708d-4657-857c-4ca95d05cda2', '1.0.0': '1d0e9a5e-1dae-44f7-9185-12253dcf0424', '0.0.1': '978e9c80-124e-445e-bcaf-3bf308d29a7d', 'latest': 'e7979d81-708d-4657-857c-4ca95d05cda2'}","{'description': 'Phase III randomised study of immunomodulatory therapy in high risk solitary bone plasmacytoma.\nIDRIS is a randomised, open label, multicentre phase III study. The aim is to investigate whether the administration of adjuvant lenalidomide and dexamethasone following standard radiotherapy treatment for SBP prevents or prolongs the time to development of further plasmacytomas or progression to myeloma, or death (whichever comes first), in patients with high-risk disease compared with RT only.\nPatients are risk-stratified following registration into the trial. Risk stratification is based on BM immunophenotyping and SFLC ratio. All patients will receive standard local radiotherapy; this is not regarded as trial treatment and may be administered prior to study entry.\n- Patients with high-risk features will be randomised to receive adjuvant therapy in the form of lenalidomide and dexamethasone or no further treatment.\n- Patients without high-risk features will receive no further therapy and will be observed according to local practice.\n140 patients:\n- 98 patients with high risk features to be randomised at a 1:1 ratio\n- 42 low risk patients for registration only', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",e7979d81-708d-4657-857c-4ca95d05cda2,https://web.www.healthdatagateway.org/dataset/e7979d81-708d-4657-857c-4ca95d05cda2,"{'access': {'accessRights': 'Please contact the publisher using Contact Point details provided', 'dataController': 'University College London', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'accessRequestCost': 'Not specified', 'jurisdiction': 'GB-ENG', 'dataProcessor': 'Not Applicable'}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}, 'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}}","{'temporal': {'distributionReleaseDate': '2018-06-01', 'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2017-01-01'}}",2020-01-13T17:05:21Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T15:59:49Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'COVID-19 Staff Testing of Antibody Responses Study (Co-STARS)', 'publisher': {'memberOf': 'ALLIANCE', 'contactPoint': 'covid.study@gosh.nhs.uk', 'name': 'GREAT ORMOND STREET HOSPITAL'}, 'contactPoint': 'COVID.study@gosh.nhs.uk', 'abstract': 'The cohort contains repeated serological antibody testing of at least 1000 healthcare workers at Great Ormond Street Hospital.', 'keywords': ['COVID', 'COVID-19', 'coronavirus', 'Serology', 'CO-CONNECT', 'Co-STARS', 'GOSH', 'Great Ormond Street Hospital']}",435bfcda-f378-44f6-9387-042d959eb945,"{'physicalSampleAvailability': ['AVAILABILITY TO BE CONFIRMED'], 'followup': '0 - 6 MONTHS', 'typicalAgeRange': '18-100', 'spatial': 'https://www.geonames.org/2643743/london.html'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'e79c5f26-deb0-4531-834d-58912c9fe663'},"{'description': 'The cohort contains repeated serological antibody testing of at least 1000 healthcare workers at Great Ormond Street Hospital. Within this cohort, a subset of 150-250 staff members with confirmed (PCR positive) SARS-CoV-2 disease will be followed with intensive monthly testing for 6 months to determine whether antibody levels in the blood are maintained or decrease during this time. \nData is sourced from EPIC LIMS and ELECTRONIC SURVEY'}",e79c5f26-deb0-4531-834d-58912c9fe663,https://web.www.healthdatagateway.org/dataset/e79c5f26-deb0-4531-834d-58912c9fe663,"{'access': {'jurisdiction': 'GB', 'accessRights': ['In Progress'], 'dataController': 'Great Ormond Street Hospital'}, 'usage': {'dataUseRequirements': 'PROJECT SPECIFIC RESTRICTIONS', 'resourceCreator': 'GOSH - Great Ormond Street Hospital\nDr Louis Grandjean & Timothy Best', 'dataUseLimitation': 'RESEARCH USE ONLY', 'isReferencedBy': ['https://www.medrxiv.org/content/10.1101/2020.11.20.20235697v1'], 'investigations': ['https://clinicaltrials.gov/ct2/show/NCT04380896']}, 'formatAndStandards': {'vocabularyEncodingScheme': 'LOCAL', 'conformsTo': 'OMOP', 'language': 'en', 'format': ['application/sql', 'text/csv']}}","{'temporal': {'accrualPeriodicity': 'IRREGULAR', 'timeLag': 'VARIABLE', 'startDate': '2020-04-27'}, 'origin': {'purpose': 'STUDY', 'collectionSituation': 'CLINIC', 'source': 'OTHER'}}",2021-02-23T16:57:06Z,,0.0.1,,2021-02-23T16:54:23Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 73, 'structuralMetadata.columnName': 73, 'structuralMetadata.columnDescription': 73, 'structuralMetadata.dataType': 73, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '7ea010cb-cb46-4feb-8638-a06cd8ffe78d', 'description': 'Co-Star Serology Data', 'name': '0_costar.CoConnect_db_serology_complete_CLEAN', 'dataElementsCount': 73, 'dataElements': 'b9ee7bd2-2da6-48f1-85c0-5c5b7603f696, b7cddd4a-d5d2-4f5b-90cf-6386db81eaad, 96dbd4a3-65b3-4924-83a3-b379a5d45eb6, ffef693f-6546-49af-89a1-c617cd0cf461, ff458bf7-76d4-4f9e-8e61-84479fe2d5b6, 99b92563-0fe7-4142-b7a6-ed2923311662, d7b26af0-1cb6-4cdc-9cdf-c6d5dd987a78, b1dba153-4f29-4fb2-b96f-47261d83cd60, b0d7c25c-5a8e-4b8e-8902-71ffcc29b4f1, b6d81a31-d6c1-4fa2-ad4f-378786a9b581, 51ee7224-a0e6-4041-b131-0dcd7ba28a3b, 5fc4c40d-b7ce-4e68-8e29-4e73683b83f8, b20a4d3d-b1ab-4460-a51d-e60cce5af228, 2feeb921-7d4e-428e-8e40-22a87bfc2721, 0787ad6e-e7f2-4cbe-a0d6-a1f4ea6b99e0, 7afc6c4f-8794-4a8f-b6dc-a722ba2a7677, 1fc2c1b1-3b97-4a4b-adff-4c5eb969bd97, 4d7dc6de-a2f2-486f-97a2-385324d47bac, efb0b711-1897-4efa-9271-43af08b97f46, 52d4c91c-4aeb-41ba-a274-4833fd455c16, 50024522-bbfd-4417-a5d6-c5e40e8cc131, c1b21b9f-0c6a-4a1c-a3c3-d7613a46f352, ca382122-37f4-4abd-84cc-bbdfd8d24b9f, 617b2479-2d4b-449c-9cd3-28a97e2fa094, d876e0f7-16f5-47ee-a562-f4f5c7d3dc35, 6f904dd8-fe45-471e-9fdd-ee5509236c18, 324b0823-f79f-43c7-9de1-6182460f9f8b, 6217ebb1-7ebe-4b3b-9a50-5ea4c67bff20, ecbdb21b-1e31-43b5-b3b9-c148b8675558, 0256e3f0-9d40-4946-ae2b-138e02196195, d4732dd3-385c-442e-93eb-f717cbf20dc6, 996531a3-556f-4d14-b31a-f47a2285599e, cb1c9f2c-4cff-4c0e-83a2-993fed16c86c, 0586f95d-5fd4-4626-892c-d884a8b94d28, 4db3c481-f2dc-41f9-9782-c24405f4ae9a, 445f2dfd-83e2-4eb3-ac9d-449e7ff91078, d06fee59-737a-43a1-a0fc-4752851bfb3a, b7c3caf1-b16f-416d-96d1-4e3ba1973c44, 732a75e7-11bc-4a2a-81c8-9fddae7e45c6, fc1a3685-41f3-412c-bbb3-5cc794ff44c3, d6bd4509-2c0e-4cd5-a703-10741b488983, d6560068-9067-401a-8309-c220246f051e, a5ebb4c3-6e20-4766-a094-aed564beff5e, 09d9f4a4-0039-4851-b31c-5a2239df0073, 726a6b96-3007-4487-b7db-b19c85c1eef0, 75887615-041f-44ab-849c-8799cfef0d1f, c550efdf-da71-431a-b495-aa46e52c37e9, 9fffb9f3-c331-49dc-a03b-3389aa1f9ad3, bda1e53b-26b6-45a8-a4a0-04ea20cc215d, 7f7854f0-cc55-4847-b336-e7828feffd49, d555e66d-ead9-4d63-91fd-d790b50af468, 2a320c05-732b-4e4f-8f38-db073ad548fa, 9d6f5d53-2ee2-4065-9a14-ce4724a86e68, 4858645d-ccc0-40bf-aa84-75758a8e1bb6, 43ec56eb-b226-447f-807b-ffc496901d04, 932096c7-f386-4267-8885-37d289a94eff, 41de3a4f-d7ed-471d-84bf-cb0ccc1ccd0b, e6c14269-27e8-4e59-909f-af8533df8274, 4e474825-5277-4e0b-a76b-ddd5f786090b, f25d1e68-08e2-41f7-a1b4-5e614557aafd, 08d9d0ef-8add-4608-bf10-3983abd5fb6a, 5071fed6-f9d2-46ae-bb91-cefa3aefaa34, a27c6927-f3e8-45ec-84b0-a8dfd22899fb, ee61ba57-4850-4a70-b97b-c24906f702ae, b6cd0198-672c-4657-bd26-aebed3d217ec, 2507dcdf-56a3-417d-b38c-5e608cd1f8e9, f11cda90-59e6-409f-b9e3-e57ae83fbcf3, 7e7b3376-205e-4f9b-bbfb-9314d08bf57f, ca948d9f-c1a4-4bb8-a290-f0ba65e79b68, a60df81d-3fcc-447c-aab8-c96a46ac73b2, 8881169c-0c0a-4c4a-bf97-3b9e23ed7e93, 7c3ec2ef-8367-4cf6-8baf-342a46495e72, aa421f02-b7ff-4dc5-81d7-0e289759ab66'}]}"
"{'title': 'BathTAP Headache Cohort 2', 'publisher': {'identifier': '613b2174b8b58d157f531e7a', 'memberOf': 'HUBS', 'name': 'ALLEVIATE'}, 'keywords': ['Alleviate', 'Pain Hub', 'Pain', 'Headache'], 'abstract': 'A replication and extension of the BathTAP headache study explores the effect of a headache on cognitive performance.', 'contactPoint': 'hssce@bath.ac.uk'}",2d79feab-3046-4735-a4ec-a4c11c9c1aa8,"{'spatial': ['https://www.geonames.org/2656173/bath.html'], 'typicalAgeRange': '18-72'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'e7b615a0-2867-47ff-bb40-0d459b41226c'},"{'description': 'People who experience frequent headaches completed a battery of attention-based computer tasks on two separate occasions: once when they were experiencing a headache, and again when headache free. The tasks were: a choice reaction time task, flanker task, n-back task, attentional switching task (cued and uncued), and dual task. Outcomes are speed of response and/or accuracy scores on these tasks.'}",e7b615a0-2867-47ff-bb40-0d459b41226c,https://web.www.healthdatagateway.org/dataset/e7b615a0-2867-47ff-bb40-0d459b41226c,"{'access': {'accessRights': ['https://www.bath.ac.uk/research-centres/centre-for-pain-research-cpr/'], 'dataController': 'University of Bath', 'jurisdiction': ['GB-ENG']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'language': ['en'], 'format': ['Database']}, 'usage': {'isReferencedBy': ['Attridge, N., Eccleston, C., Noonan, D., Wainwright, E., & Keogh, E. (2017). Headache Impairs Attentional Performance: A Conceptual Replication and Extension. The Journal of Pain, 18(1), 29–41. https://doi.org/10.1016/j.jpain.2016.09.007']}}","{'origin': {'source': ['OTHER'], 'purpose': ['STUDY'], 'collectionSituation': ['OTHER']}, 'temporal': {'endDate': '2017-01-01', 'accrualPeriodicity': 'STATIC', 'distributionReleaseDate': '2017-10-01', 'timeLag': 'NOT APPLICABLE', 'startDate': '2017-01-01'}}",2021-11-01T11:00:28Z,"[{'observedNode': 'PERSONS', 'measuredValue': '59', 'disambiguatingDescription': 'Computer task performance', 'observationDate': '01/01/2017', 'measuredProperty': 'Count'}]",1.0.0,,2021-11-01T11:00:28Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 45, 'structuralMetadata.columnName': 45, 'structuralMetadata.columnDescription': 45, 'structuralMetadata.dataType': 45, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '194773ba-cb6d-4844-a286-35559b9c162f', 'name': 'BathTAP Headache 2', 'dataElementsCount': 45, 'dataElements': '4865c3b0-80da-4a5a-b8d7-393f81ac731d, 6549e570-5c97-4c48-91bb-4d0b71a94236, 56d5bb8a-fb25-4b5c-b378-744d5025b1c3, 7ae1f48f-1da5-410e-9407-76731989fb87, b1b00d8b-2147-4b41-a8ba-e846eb53a7aa, 6538b8e7-de18-4955-9069-958c5ea0d8b8, a6e467d5-922e-4d46-85df-e2b93409c723, 7127087c-9730-4b26-b3cd-0f315c70ad64, 93f2dc3d-1286-4021-9cdb-6cf3f8b71a1a, da5eecb4-a08c-4575-88b9-cf484391d1d7, 365496d9-4e01-4be9-bda3-2df18d72ab81, 7b3b4d96-2594-43c6-b81e-5ee6d8659ce1, 4dc15af9-16da-4b6a-b882-f229b3dfe269, 713b9cd6-857a-4544-8775-79c582db177f, b1568b51-d831-468f-9696-1fdcfea7c94f, bd938b70-643a-4412-8ccc-4e53d9a7a21f, 9cf48c10-ea4f-4fec-ad96-20af32717014, ae9e1260-dd28-41b1-8121-80c02f901928, d3eb4aab-8a0b-496f-8bb4-732ccf34e57d, 042c146a-de5d-4db5-b549-d5da4782af29, c9b82df8-3865-4983-a4c2-da2ad293d018, 0bdecfaf-7833-43c9-9b66-540b6986fb04, c040eb45-a225-43ab-b82d-3e827955fcc1, 3a4c38c5-3645-4365-a5a3-43add2164ff1, 4e320321-7852-44d9-974e-83d5e5ddbafa, fb2a0462-9c1a-4aa0-80e8-08f93addc761, 8c9e4a3e-3e6a-43e3-b3ad-12ef3f56eea7, 6260eeef-5a0f-4aeb-8b85-38f343c54a94, 4398f4c5-50ee-414e-90cc-1e7417eafca1, c7a640ad-ede0-49b8-ae38-9b1eeb16ab02, 2479714c-cec5-4236-a9e6-47df6614af32, 3a163bf1-f8f3-4499-91b7-86404bb5d965, 0dd35dba-8ffd-41e5-aa57-db4ff8d9fd47, aebbe32a-cc44-4122-a68b-e7dc7f9b1311, ea765fd9-1335-4072-a417-6716022f7260, d38ff922-5dd4-428b-acb2-6d492b90998d, 75345f1d-4411-4431-ab5f-e5c3d7042192, d5a9e736-8fdd-4156-8a0a-3cd7b83443b4, ebc9977f-04e4-4f1c-b806-2807a36b1bf7, 3d4c55e4-18a1-4fbe-9b06-35ecb49282e6, 88684d8c-4044-41fb-b521-473da0703eb9, 666dcf8b-89b6-45a2-97a0-3312c30d71ff, e7761856-b27a-4299-b3f5-2b2bd6ae9b94, af4f97b3-4f06-4069-aab8-931e865f94c8, 61261539-a79f-418b-a7dc-5a8f970720a6'}]}"
"{'title': 'Air Pollution Exposure Estimates', 'publisher': {'identifier': '607db9c3e1f9d3704d570cfa', 'name': 'DISCOVER NOW', 'memberOf': 'HUB'}, 'keywords': ['AIR POLLUTION', 'Air pollution', 'Pollution', 'Discover-NOW', 'Real World data', 'Linked longitudinal', 'Real world data'], 'contactPoint': 'researchers@registerfordiscover.org.uk', 'abstract': 'Modelled concentrations of annual average nitrogen dioxide (NO2) and particulate matter with diameter <2.5µm (PM2.5) were linked to postcode centroids in Greater London. The pollution values are joined to NWL Registered population using current postcode.'}",584cbecc-43ef-4015-adf7-ff70178d7abe,"{'spatial': ['https://www.geonames.org/2646895/hillingdon.html', 'https://www.geonames.org/2634341/city-of-westminster.html', 'https://www.geonames.org/3333157/royal-kensington-and-chelsea.html', 'https://www.geonames.org/3333151/harrow.html', 'https://www.geonames.org/3333132/brent.html', 'https://www.geonames.org/2650567/ealing.html', 'https://www.geonames.org/3333155/hounslow.html', 'https://www.geonames.org/3333149/hammersmith-and-fulham.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': '1 - 10 YEARS', 'typicalAgeRange': '0-150', 'pathway': 'This table contains list of postcodes showing the pollution reading. Patient pathway can be worked out by linking this table with the patient index table available as part of Discover-NOW'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'e8932b23-ed21-40f4-8fb1-00ef186e6ee1'},"{'description': 'Modelled concentrations (µg/m3) of annual average nitrogen dioxide (NO2) and particulate matter with diameter <2.5µm (PM2.5) were linked to postcode centroids in Greater London. Air pollution exposure estimates (i.e. concentrations) were derived using models developed for the year 2015 by overlaying the x,y location of postcode centroids with NO2 and PM2.5 maps (25m x 25m resolution) within a geographic information system (GIS). Following analysis of changes in air pollution measurements over time, using routine monitoring data from the DEFRA-run Automatic Urban and Rural Network (AURN), we made adjustments to the 2015 modelled concentrations to estimate 2010 to 2019 exposures using a method know as ‘differencing’ (Gulliver et al. 2013).', 'isPartOf': 'NWL Geography', 'associatedMedia': ['https://imperialcollegehealthpartners.com/discover-now/north-west-london-covid-19-data-repository/', 'https://www.nwlondonccgs.nhs.uk/professionals/whole-systems-integrated-care-wsic-dashboards-and-information-sharing/information-de-identified-users']}",e8932b23-ed21-40f4-8fb1-00ef186e6ee1,https://web.www.healthdatagateway.org/dataset/e8932b23-ed21-40f4-8fb1-00ef186e6ee1,"{'usage': {'resourceCreator': ['NWL CCG', 'Discover-NOW'], 'dataUseLimitation': ['NO RESTRICTION'], 'investigations': ['https://www.registerfordiscover.org.uk/researchers/discover-for-researchers-and-industry'], 'isReferencedBy': ['Bottleet al. BMC Medical Informatics and Decision Making (2020) 20:71 https://doi.org/10.1186/s12911-020-1082-7'], 'dataUseRequirements': ['TIME LIMIT ON USE', 'COLLABORATION REQUIRED', 'PROJECT SPECIFIC RESTRICTIONS', 'GEOGRAPHICAL RESTRICTIONS']}, 'access': {'accessRequestCost': ['In Progress'], 'accessRights': ['https://imperialcollegehealthpartners.com/discover-now/nwl-covid-data-access/'], 'dataProcessor': 'North West London CCG\nNorth East London Commissioning Support Unit', 'jurisdiction': ['GB'], 'dataController': 'Joint data controller model across North West London', 'accessService': ""Researchers will have access to a VDI environment with a specific username and password. The researchers will get access to the datasets that is present in the hub's catalogue and would be able to carry out their research within the safe haven. There are restrictions applied which prevents the researchers from taking data out of the safe haven, once the research/analysis is completed the admin team will need to be contacted for taking the analysis off the safe haven."", 'deliveryLeadTime': '1-2 MONTHS'}, 'formatAndStandards': {'format': ['Excel', 'SQL', 'Tableau', 'R'], 'language': ['en'], 'vocabularyEncodingScheme': ['OTHER'], 'conformsTo': ['OTHER']}}","{'origin': {'source': ['OTHER'], 'purpose': ['STUDY'], 'collectionSituation': ['OTHER']}, 'temporal': {'endDate': '2022-03-31', 'startDate': '2019-04-01', 'accrualPeriodicity': 'ANNUAL', 'timeLag': 'VARIABLE', 'distributionReleaseDate': '2019-04-01'}}",2021-09-23T16:41:19Z,"[{'observedNode': 'PERSONS', 'measuredValue': '4391067', 'observationDate': '15/09/2021', 'measuredProperty': 'Count', 'disambiguatingDescription': 'Air Pollution Estimates'}]",1.0.0,"{'derivation': ['Long Term Conditions', 'Electronic Frailty Index', 'Q-Admissions', 'Patient Segments', 'Risk Segments'], 'qualifiedRelation': ['Each patient will be identified by an unique patient key that can be used to link to all other datasets available within Discover-NOW hub']}",2021-09-23T16:41:19Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 5, 'structuralMetadata.columnName': 5, 'structuralMetadata.columnDescription': 5, 'structuralMetadata.dataType': 5, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '380fad0a-60ff-4ed8-a23b-533a12abd996', 'description': 'Modelled concentrations of annual average nitrogen dioxide (NO2) and particulate matter with diameter (PM2.5) were linked to postcode centroids in Greater London.', 'name': 'Air_Pollution_Estimates', 'dataElementsCount': 5, 'dataElements': '0a44ed63-2ec5-4dbe-8dc6-95d3ecbf0841, 889525bd-57fe-4a62-8c94-95f15d447265, 379a72ce-9b00-4139-9e3e-2234677fa742, 5c6f0e5a-e75f-45e6-b993-662af8960c4a, 9c347e50-af60-4766-b3cf-a4c9a4257edc'}]}"
"{'title': 'Strategy introducing Pulmonary Rehabilitation for COPD management in rural India', 'keywords': ['PULMONARY REHABILITATION', 'RURAL', 'TESTING', 'COPD', 'RESPIRE', 'BREATHE', 'INDIAN'], 'publisher': {'memberOf': 'HUB', 'name': 'BREATHE', 'contactPoint': 'RESPIRE@ed.ac.uk'}, 'contactPoint': 'RESPIRE@ed.ac.uk', 'abstract': 'The aim is to assess the need for PR from both a caregiver and care recipient’s perspective, while formulating and testing a pulmonary rehabilitation (PR) strategy for chronic obstructive pulmonary disease (COPD) management in a rural Indian setting.'}",e8afaf39-86fa-4085-a075-6118cc25fae0,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '>18', 'spatial': 'India'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'd3e859ba-cfb0-4eda-a14c-34b08d113cd9', '1.0.0': 'e8c3b66d-f06b-4e3f-944d-f65235133f00', 'latest': 'e8c3b66d-f06b-4e3f-944d-f65235133f00'}","{'description': 'Chronic obstructive pulmonary disease (COPD) is the biggest cause of death in rural India and its prevalence continues to increase due to widespread air-pollution.\n\nPulmonary Rehabilitation (PR) is proven to be the most effective strategy to improve shortness of breath, health status and exercise tolerance as well as reducing re-admissions and mortality in patients with recent exacerbations.\n\nDespite this, there is no existing programme for PR being systemically introduced in rural India and anecdotal evidence points towards inadequate knowledge and practice of PR in rural areas of the Pune district.\n\nThe aim is to assess the need for PR from both a caregiver and care recipient’s perspective, while formulating and testing a PR strategy for COPD management in a rural Indian setting.\n\nFor further information, see: https://www.ed.ac.uk/usher/respire/chronic-respiratory-disorders/pulmonary-rehabilitation', 'isPartOf': 'BREATHE'}",e8c3b66d-f06b-4e3f-944d-f65235133f00,https://web.www.healthdatagateway.org/dataset/e8c3b66d-f06b-4e3f-944d-f65235133f00,"{'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL']}, 'access': {'accessRights': 'Access is managed on a project-by-project basis. Contact the RESPIRE team: https://www.ed.ac.uk/usher/respire/about/projects', 'jurisdiction': 'IN', 'deliveryLeadTime': 'OTHER', 'dataProcessor': 'RESPIRE', 'dataController': 'RESPIRE'}, 'usage': {'resourceCreator': 'RESPIRE Collaboration'}}","{'temporal': {'startDate': '2019-10-01', 'endDate': '2020-12-31'}}",2020-08-25T18:13:24Z,,1.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-04-14T08:27:36Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Brecon Dataset (BREC)', 'abstract': 'A register of children diagnosed with type 1 diabetes, collected from Paediatric diabetes clinics in Wales. Maintained by the Brecon Group. Data has been collected since 1995 and is complete since then, but some people diagnosed earlier are also included.', 'keywords': ['Diabetes', 'Paediatric', 'SAIL', 'Brecon', 'Children', 'core-res'], 'publisher': {'identifier': '5f3f98068af2ef61552e1d75', 'memberOf': 'ALLIANCE', 'name': 'SAIL'}, 'contactPoint': 'SAILDatabank@swansea.ac.uk'}",9c6e891f-6449-48d2-a1c3-8dd236e34bbd,"{'spatial': ['https://www.geonames.org/2634895/wales.html'], 'typicalAgeRange': '0-19', 'pathway': 'Secondary care', 'followup': '1 - 10 YEARS', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'5.0.0': 'c94f3f11-1bc5-4b0e-9343-3fdd5763d8d6', '6.0.0': 'e956a7a4-896b-47dc-8d98-f48385d110f7', 'latest': 'e956a7a4-896b-47dc-8d98-f48385d110f7'}","{'description': 'A register of children diagnosed with type 1 diabetes in Wales, collected from Paediatric diabetes clinics in Wales.  Maintained by the Brecon Group. Two capture-recapture studies have been done showing >97% completeness for type 1 diabetes diagnoses in Wales. Data has been collected since 1995 and is complete since then, but some people diagnosed earlier are also included.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://www.youtube.com/watch?v=ZK9-Jw3uVkw', 'https://saildatabank.com/'], 'isPartOf': 'NOT APPLICABLE'}",e956a7a4-896b-47dc-8d98-f48385d110f7,https://web.www.healthdatagateway.org/dataset/e956a7a4-896b-47dc-8d98-f48385d110f7,"{'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'conformsTo': ['LOCAL'], 'format': ['SQL database table']}, 'access': {'dataController': 'Brecon Group', 'jurisdiction': ['GB'], 'dataProcessor': 'SAIL Databank', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'accessRights': ['https://saildatabank.com/application-process/'], 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'deliveryLeadTime': '2-6 MONTHS'}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'isReferencedBy': ['Allen, L.A., Cannings-John, R.L., Evans, A. et al. Pregnancy in teenagers diagnosed with type 1 diabetes mellitus in childhood: a national population-based e-cohort study. Diabetologia 63, 799–810 (2020). https://doi.org/10.1007/s00125-019-05063-w'], 'resourceCreator': ['[""Brecon Group""]']}}","{'origin': {'collectionSituation': ['CLINIC'], 'source': ['EPR'], 'purpose': ['STUDY', 'DISEASE REGISTRY', 'AUDIT']}, 'temporal': {'startDate': '1979-06-06', 'distributionReleaseDate': '2021-04-26', 'timeLag': '1-2 MONTHS', 'accrualPeriodicity': 'ANNUAL', 'endDate': '2021-04-19'}}",2021-09-13T14:12:37Z,"[{'observedNode': 'EVENTS', 'measuredValue': '3000000', 'observationDate': '01/09/2021', 'measuredProperty': 'Count', 'disambiguatingDescription': 'Approx 70-80% coverage of Welsh population through GP registrations.'}]",6.0.0,"{'qualifiedRelation': ['Yes. To any SAIL dataset & reference data.'], 'tools': ['https://conceptlibrary.saildatabank.com/'], 'derivation': ['Not Available']}",2021-12-21T14:20:34Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 2, 'structuralMetadata.tableName': 2, 'structuralMetadata.tableDescription': 2, 'structuralMetadata.dataElementsCount': 33, 'structuralMetadata.columnName': 33, 'structuralMetadata.columnDescription': 33, 'structuralMetadata.dataType': 33, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '265e78a7-050d-40ed-916b-cdf4bfa85191', 'description': 'Main table of the Brecon cohort , containing a register of children diagnosed with type 1 diabetes in Wales. 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This table can be linked to the BRECON table on SYSTEM_ID_E, and contains information about the ALF that represents the patient in the BRECON table. This also contains standard SAIL information such as WOB, GNDR_CD and LSOA2011_CD for the patient for ease of use when linking.', 'name': 'BRECON_ALF', 'dataElementsCount': 14, 'dataElements': '62f25ea4-78b6-4fe7-b8a9-d100fed7f585, 3132da4b-35b1-4d90-98c7-3fde9f447ffb, 813351c0-81cd-4e26-b110-c5db16e36139, b9b3bbc4-0597-4ccf-9fa0-bb4a2a82e896, 55a83c9a-a69e-4700-b935-4d57aed39630, 713ec702-a3c8-4534-b506-2c9d52be0f46, 5422eebb-dcf3-4f83-9e1a-d83ea78abd27, d96a71b2-035d-4e61-a6f9-7780eb626897, b7265739-4a55-40f6-ab83-763a981fcff2, 98592b47-54a3-4119-9df8-f17892591487, cd330f77-39a4-4aed-9911-73dcc90c07d8, c45df783-193e-48dc-a4a9-8ba5805984a0, 53b94529-44fd-479d-a1e5-6ddf6aafb150, ad0aaee4-e843-4710-b5c1-87ac520be733'}]}"
"{'title': 'HES Diagnostic Imaging Dataset for CPRD GOLD', 'keywords': ['Diagnostic', 'Imaging', 'DIDs'], 'abstract': 'CPRD GOLD linked Hospital Episode Statistics Diagnostic Imaging Dataset (HES DID) data contain information about NHS diagnostic imaging tests, such as x-rays and MRI scans, in England (but not the images themselves).', 'contactPoint': 'enquiries@cprd.com', 'publisher': {'identifier': '607db9c2e1f9d3704d570cee', 'name': 'CPRD', 'memberOf': 'ALLIANCE'}, 'doiName': 'https://doi.org/10.48329/xjqf-ag80'}",a1bef3a6-9700-43a5-8f3e-dad44ce1fe10,"{'typicalAgeRange': '0-115', 'followup': '1 - 10 YEARS', 'spatial': ['https://www.geonames.org/6269131/england.html'], 'pathway': 'Secondary care', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': 'e20319e3-2a62-44bb-bc9a-1e7ecbe6f62d', '5.0.0': 'e97f2bd0-48c1-4cd8-9d18-780f21a52b45', '4.0.0': 'b02e2091-f48a-4d50-91a0-de8c76f76c18', '3.0.0': 'aa8c53e8-f91f-41f7-9522-7e2462a9a84b', '1.0.0': 'ff96aedc-7429-4fd5-9cf1-e2ed5226252a', '0.0.1': '621d0db2-51da-4f64-a4c1-6358f7e54f5a', 'latest': 'e97f2bd0-48c1-4cd8-9d18-780f21a52b45'}","{'description': ""CPRD GOLD linked Hospital Episode Statistics Diagnostic Imaging Dataset (HES DID) is a collection of detailed information about diagnostic imaging tests, such as x-rays and MRI scans, taken from NHS providers' radiological information systems. HES DID includes information on imaging tests carried out from 1 April 2012 on NHS patients in England. It does not include the images that are produced as a result of these tests. The DID captures information about referral source and patient type, details of the test (type of test and body site), plus items about waiting times for each diagnostic imaging event, from time of test request through to time of reporting. \nHES DID enables analysis of demographic and geographic variation in access to different test types and different providers, enabling users to analyse patient care pathways."", 'isPartOf': 'CPRD GOLD', 'associatedMedia': ['https://www.cprd.com/linked-data']}",e97f2bd0-48c1-4cd8-9d18-780f21a52b45,https://web.www.healthdatagateway.org/dataset/e97f2bd0-48c1-4cd8-9d18-780f21a52b45,"{'formatAndStandards': {'vocabularyEncodingScheme': ['SNOMED CT'], 'format': ['Tab delimited text'], 'language': ['en'], 'conformsTo': ['NHS DATA DICTIONARY']}, 'usage': {'resourceCreator': ['NHS Digital'], 'dataUseRequirements': ['GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'isReferencedBy': ['[]'], 'investigations': ['https://www.cprd.com/protocol-list'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'NO LINKAGE', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY']}, 'access': {'accessService': 'Access to CPRD data, including UK Primary Care Data, and linked data such as Hospital Episode Statistics, is subject to protocol approval via CPRD’s Research Data Governance (RDG) Process. Independent scientific and patient advice is provided by Expert Review Committees (ERCs) and the Central Advisory Committee (CAC): https://www.cprd.com/research-applications', 'deliveryLeadTime': 'VARIABLE', 'accessRights': ['HTTPS://CPRD.COM/DATA-ACCESS'], 'jurisdiction': ['GB-ENG'], 'accessRequestCost': ['https://www.cprd.com/pricing'], 'dataProcessor': 'CPRD', 'dataController': 'Clinical Practice Research Datalink (CPRD)'}}","{'temporal': {'distributionReleaseDate': '2021-09-06', 'timeLag': 'MORE 6 MONTHS', 'endDate': '2018-12-31', 'startDate': '2004-12-20', 'accrualPeriodicity': 'QUARTERLY'}, 'origin': {'source': ['EPR'], 'purpose': ['CARE'], 'collectionSituation': ['ACCIDENT AND EMERGENCY', 'CLINIC', 'IN-PATIENTS', 'OUTPATIENTS']}}",2020-01-10T18:12:16Z,"[{'observedNode': 'PERSONS', 'measuredValue': 8024752, 'disambiguatingDescription': 'Number of CPRD GOLD patients matched to single HES identifier', 'observationDate': '06/09/2021', 'measuredProperty': 'Count'}]",5.0.0,"{'tools': ['[]'], 'derivation': ['N/A'], 'qualifiedRelation': ['CPRD GOLD', 'CPRD GOLD SGSS', 'CPRD GOLD CHESS', 'CPRD GOLD ICNARC', 'Death Registration data for CPRD GOLD', 'HES Admitted Patient Care data for CPRD GOLD', 'HES Outpatient data for CPRD GOLD', 'HES Accident and Emergency data for CPRD GOLD', 'Patient postcode linked deprivation measures for CPRD GOLD', 'Practice postcode linked deprivation measures for CPRD GOLD', 'Rural-Urban classification for CPRD GOLD', 'Cancer registration data for CPRD GOLD', 'National Radiotherapy Dataset (RTDS) for CPRD GOLD', 'Systemic Anti-Cancer Treatment (SACT) data for CPRD GOLD', 'Mental Health Dataset (MHDS) for CPRD GOLD', 'Mother-Baby Link for CPRD GOLD', 'Pregnancy Register for CPRD GOLD']}",2022-02-18T12:03:44Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 3, 'structuralMetadata.tableName': 3, 'structuralMetadata.tableDescription': 3, 'structuralMetadata.dataElementsCount': 32, 'structuralMetadata.columnName': 32, 'structuralMetadata.columnDescription': 32, 'structuralMetadata.dataType': 32, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'e9958a0b-1cde-40bb-bdd3-69e25aea2798', 'description': 'A7', 'name': 'Referral', 'dataElementsCount': 9, 'dataElements': '0bc59769-af0d-4f11-a059-7c3946b4a8d0, 726511f4-bc00-4f21-88c5-fa3d56ab1760, b4b1466b-5402-4de9-a8cb-bf77d25d3334, a80bd5c5-b8be-4382-b811-9673307cc078, c59eeda5-f032-411e-94a4-c5be9669c8aa, fbb3f76c-4b69-401d-9738-ce01baf233cf, eba6339c-ee15-48ba-85fa-ffd7efef2967, 6b43b1c3-3d2f-47d7-af51-24f19a43ee6e, e66fce75-dc1a-4cb8-9f24-44404601d49f'}, {'id': '477eabba-b067-4765-8007-7848b6541af3', 'description': 'A16', 'name': 'Test', 'dataElementsCount': 18, 'dataElements': '0cfdea1d-8461-4935-b16b-85bcae0af0da, 7428b825-bb90-4034-97e8-991aeb7e4226, 5e7c59c8-8527-42cd-9341-1fb03b644d99, ee8aeb03-dbce-4edf-9eb7-5f8041469dec, b552f1d0-395e-4866-9c6b-160f29c1a1c7, df77d986-eae2-4715-8619-757f97bf219f, 32f54a05-f255-4358-b8e2-36f64eae5645, 8eb5ea8d-8434-431a-9d6e-c91c12e856e2, 3964bd04-0391-4099-8f64-4a4ebc9627c2, f6ff1535-43d6-453b-b3d5-f873064b76e7, 8b7e38b7-e3f6-4bf5-9dbd-5b44b118495c, 1a19839f-ce33-43c8-b166-0c429d82086e, ca145aaf-2b4d-470c-b6f2-30c266a9d2ca, 054cf9b2-cf40-4829-85a8-5cbc395c59c6, 73badf05-c8b2-4816-b043-a25e87a46bbc, ed82f490-6910-4e3e-b50f-2b5b3fd8503b, 4e1b2e42-b0d7-451d-b37a-d7cbe1b71393, b7b4e5c0-791a-4971-84b4-f130fac625f0'}, {'id': 'dd822234-a106-44d1-adc8-0f0c386856f9', 'description': 'A2', 'name': 'Patient', 'dataElementsCount': 5, 'dataElements': '9fd8bd41-c752-455b-8225-ea862c86c147, 74bcd43d-b517-44e6-bb68-c0843201991c, 5527534c-1561-4880-b959-690410d2b43e, c834d79d-1773-4898-aef2-7e98b7ea5d56, 2e343e19-59c1-4df6-bf3d-c75c28edc1b6'}]}"
"{'title': 'IBD NIHR BioResource: Health and Lifestyle Questionnaire', 'abstract': 'Most NIHR BioResource participants complete a self-report form on recruitment. Typically this contains e.g. height, weight, smoking history and alcohol consumption, but also includes questions relating to disease history and current medications.', 'contactPoint': 'nbr@bioresource.nihr.ac.uk', 'keywords': [""Crohn's"", 'IBD', 'colitis', 'health', 'lifestyle', 'feasibility', 'cohort discovery', 'recall', 'CO-CONNECT'], 'publisher': {'identifier': '607db9c3e1f9d3704d570d0a', 'memberOf': 'HUB', 'name': 'GUT REACTION'}}",18bfe765-5733-41f3-8114-0a1ec2524b5b,"{'typicalAgeRange': '18-85', 'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM'], 'spatial': 'https://www.geonames.org/2635167/united-kingdom.html', 'followup': '1 - 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '549a86d0-dd41-4a77-bd9f-c0ee57e92857', '5.0.0': 'e9820518-54e3-46d1-a63f-c5da867dcd82', '3.0.0': '1046b837-c4d9-4688-a06e-d7b32d37a161', '4.0.0': '8d583c2a-e802-43d9-9a57-11148a542b9e', '1.0.0': 'd7ec9584-cba3-46f9-9ef4-b1cb9eef2e7c', '0.0.1': '0cb2e81c-3716-481d-b36f-d0efc228ac20', 'latest': 'e9820518-54e3-46d1-a63f-c5da867dcd82'}","{'description': 'The NIHR IBD Bioresource comprises ~30k participants with Inflammatory Bowel Disease (IBD), which include the members of the HDR UK IBD Hub. The NIHR BioResource acquires a self-reported health and lifestyle questionnaire from all participants at recruitment. Typically variables include height, weight, smoking history and alcohol consumption, with addition of questions relating to disease history and current medications. This is used to pre-screen or match participants when inviting them to take part in experimental medicine studies. De-identified versions of this data are available to researchers investigating the feasibility of future studies.', 'isPartOf': 'Not Applicable'}",e9820518-54e3-46d1-a63f-c5da867dcd82,https://web.www.healthdatagateway.org/dataset/e9820518-54e3-46d1-a63f-c5da867dcd82,"{'usage': {'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'RETURN TO DATABASE OR RESOURCE', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'isReferencedBy': ['Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/'], 'dataUseLimitation': ['RESEARCH USE ONLY'], 'resourceCreator': ['NIHR BioResource. Acknowledgement text: ""We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.""']}, 'access': {'accessRequestCost': ['https://bioresource.nihr.ac.uk/using-our-bioresource/industry-researchers/industry-bioresource-usage-costs/'], 'dataProcessor': 'Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)', 'accessService': 'Some de-identified data may be released to researchers in a platform-independent filetype (e.g. CSV). However, access to any data acquired via NHS Digital is subject to strict restrictions governing where data may be accessed and from which locale - access is currently via an experimental safe haven built in Microsoft Azure.', 'jurisdiction': ['GB-GBN'], 'deliveryLeadTime': '2-6 MONTHS', 'dataController': 'Cambridge University Hospitals NHS Foundation Trust (CUH)', 'accessRights': ['https://bioresource.nihr.ac.uk/using-our-bioresource']}, 'formatAndStandards': {'format': ['text', 'csv'], 'conformsTo': ['I2B2'], 'language': ['en'], 'vocabularyEncodingScheme': ['SNOMED CT']}}","{'origin': {'purpose': ['STUDY'], 'collectionSituation': ['CLINIC', 'COMMUNITY', 'HOME'], 'source': ['ELECTRONIC SURVEY', 'PAPER BASED']}, 'temporal': {'accrualPeriodicity': 'QUARTERLY', 'startDate': '2016-01-13', 'distributionReleaseDate': '2021-03-31', 'timeLag': '1-2 MONTHS'}}",2020-01-13T15:06:23Z,"[{'observedNode': 'PERSONS', 'measuredValue': '22536', 'disambiguatingDescription': 'Participants who returned 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"{'title': 'National Asthma and COPD Audit Programme - Pulmonary rehab organisational audit', 'abstract': 'Contains organisational survey data of pulmonary rehabilitation services collected between July and September 2019. The dataset includes information on the organisation and resourcing of pulmonary rehabilitation services.', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d23', 'name': 'HQIP'}, 'keywords': ['Audit', 'NACAP', 'Asthma', 'COPD', 'Pulmonary Rehabilitation', 'Organisational'], 'contactPoint': 'DataSharing@hqip.org.uk'}",4b33fc6d-3cac-4404-adac-d693328456fa,"{'followup': 'UNKNOWN', 'pathway': 'Structure and resource of PR services July - September 2019.', 'spatial': ['https://www.geonames.org/2634895/wales.html', 'https://www.geonames.org/6269131/england.html'], 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'e9902b10-84ca-495f-a4d9-a9948d0d64ca'},"{'description': 'Contains organisational survey data of pulmonary rehabilitation services collected between July and September 2019. 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"{'title': 'Hospitalised Community Acquired Pneumonia before & during the COVID-19 pandemic', 'publisher': {'name': 'PIONEER', 'identifier': '607db9c5e1f9d3704d570d5f', 'memberOf': 'HUB'}, 'abstract': 'Patients hospitalised with community acquired pneumonia (CAP) before and during COVID-19 pandemic. Granular care pathways. Multi-morbidity, investigations, interventions and treatments. Serial physiology, blood biomarkers, outcome data. Deeply phenotyped.', 'keywords': ['Community Acquired Pneumonia', 'COVID-19', 'Older adults', 'Social distancing', 'epidemiology', 'CAP', 'Mortality', 'Neutrophil function', 'hospital admissions'], 'contactPoint': 'PIONEER@UHB.NHS.UK'}",1861b3dd-4969-490e-9faf-c57809f56bc1,"{'typicalAgeRange': '18-110', 'pathway': 'Data is representative of the multi-ethnicity population within the West Midlands (42% non white). Data includes all patients admitted during this timeframe, with National data Opt Outs applied, and therefore is representative of admissions to secondary care. Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.', 'spatial': 'https://www.geonames.org/2634343/west-midlands.html', 'followup': '1 - 10 YEARS', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'adcf0833-2e4f-4604-8a8c-f4674a62ddcb', '2.0.0': 'e9cdc12c-6938-4c18-b45c-e0a77df6de56', 'latest': 'e9cdc12c-6938-4c18-b45c-e0a77df6de56'}","{'description': 'Community acquired pneumonia (CAP) is a leading cause of hospital admission, and in older adults has high rates of mortality and complications. CAP is associated with increased long-term mortality and loss of independence for older adults.  CAP typically affects older adults with co-morbidities- a group who have largely shielded throughout the winter period. This seems to have reduced rates of transmissible disease in vulnerable people. Complications such as sepsis, and empyema (infected fluid around the lung) prolong hospital admission, result in additional interventions in hospital and have higher mortality than CAP alone. The causative agents for CAP are often poorly identified in real world clinical practice.\nThese data allow the investigation of the different ways in which COVID-19 has impacted on existing health conditions, how often causative agents were identified in real-world practice and the sensitivities of the bacteria, which antibiotics were used and patient outcomes.  \n\nPIONEER geography \nThe West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix (42% non-white within Birmingham). \n\nEHR. UHB is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.\n\nScope: All hospitalised patients admitted to UHB before and during the COVID-19 pandemic, curated to focus on Community Acquired Pneumonia. Longitudinal & individually linked, so that the preceding & subsequent health journey can be mapped & healthcare utilisation prior to & after admission understood. The dataset includes highly granular patient demographics & co-morbidities taken from ICD-10 & SNOMED-CT codes. Serial, structured data pertaining to process of care (timings, admissions, readmissions and discharge outcomes, physiology readings (heart rate, blood pressure, NEWS2 score, SEWS score, AVPU score), blood results and flags for microbiology and surgical data. Comparing the burden of hospitalised community acquired pneumonia (CAP) before and during COVID-19 pandemic. \n\nAvailable supplementary data: Matched controls; ambulance, synthetic data.\n\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.', 'associatedMedia': ['https://www.pioneerdatahub.co.uk/wp-content/uploads/CAP-COVID-Infographic-V3-page-001.jpg'], 'isPartOf': 'NOT APPLICABLE'}",e9cdc12c-6938-4c18-b45c-e0a77df6de56,https://web.www.healthdatagateway.org/dataset/e9cdc12c-6938-4c18-b45c-e0a77df6de56,"{'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'vocabularyEncodingScheme': ['SNOMED CT', 'ICD10'], 'format': ['SQL']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'investigations': [''], 'resourceCreator': ['This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'isReferencedBy': ['NOT APPLICABLE']}, 'access': {'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'deliveryLeadTime': '1-2 MONTHS', 'jurisdiction': ['GB-ENG'], 'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/'], 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'dataProcessor': 'NOT APPLICABLE'}}","{'temporal': {'distributionReleaseDate': '2021-05-14', 'startDate': '2019-09-01', 'endDate': '2021-01-31', 'timeLag': 'OTHER', 'accrualPeriodicity': 'QUARTERLY'}, 'origin': {'collectionSituation': ['ACCIDENT AND EMERGENCY', 'OUTPATIENTS', 'IN-PATIENTS'], 'purpose': ['CARE'], 'source': ['EPR']}}",2021-12-20T13:00:57Z,"[{'observedNode': 'EVENTS', 'measuredValue': '3669', 'observationDate': '14/05/2021', 'measuredProperty': 'Count', 'disambiguatingDescription': '3,669 CAP spells in this dataset from 2019-09-01 to 2020-01-31 and 2020-09-01 to 2021-01-31'}]",2.0.0,{'derivation': ['NOT AVAILABLE']},2022-01-13T09:01:06Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 2, 'structuralMetadata.tableName': 2, 'structuralMetadata.tableDescription': 2, 'structuralMetadata.dataElementsCount': 33, 'structuralMetadata.columnName': 33, 'structuralMetadata.columnDescription': 33, 'structuralMetadata.dataType': 33, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'fddf0fd9-98f8-4a00-9a1d-ffcf975bc391', 'description': 'Summary of the GrudzinskaAdmission table', 'name': 'GrudzinskaSummary', 'dataElementsCount': 3, 'dataElements': '634beee0-2004-4c3a-b40d-65c5e3b3591c, e9e61c12-ea9a-4991-9942-daed2865d2e9, 42828a21-b0c6-4f09-bdd7-175cf07510d3'}, {'id': 'fd7631a6-f87b-46b2-9b82-d9b911a99b05', 'description': 'Spell admission details', 'name': 'GrudzinskaAdmission', 'dataElementsCount': 30, 'dataElements': '5af7c8e1-363e-4eca-ac86-fbbd9967299e, 48b5cbd5-9d31-4280-86ea-feb5c3057847, 35c66bbe-427d-4cc5-8cab-234f94720bc4, fc634505-d693-4136-bbcc-8724c956968d, 8151fbef-a509-405f-b009-04496ea0769a, 4c2052f5-efc5-4c47-9aec-ebd6c9948734, 73bcb68e-3457-41b2-bd1d-54fb4668cba7, 03c90e26-21bd-4b99-9fcb-bd815f405085, 2382833f-7d8d-432b-8757-8424168f3098, 0ff83a0e-7554-45cd-a404-2816f9f2b9cf, 2a9d42ef-ba8c-40ec-b09a-031f37a90753, 49e3cd57-0d2b-4d19-805f-ad50e8ce7772, 7b88d63f-50c6-48e4-93ee-352331f37006, 8462f76a-b0c7-4c40-9cc9-57549ac71654, 7ffc43cb-b272-4a12-b9db-ca7a8e70b839, 9c91d7bf-f582-4b47-aded-fa9e75e45e22, 58320452-2e65-4b67-9a21-3fc9edf49b2f, 086d9f12-d26b-4c96-a5de-1b906bb8940b, 088c391e-b292-4d49-a7ae-9ec2238dcdb4, 5f57593e-bb72-4a78-aa39-9700438cf84d, 76662608-56cd-4eb5-82c8-971cda188059, cdf5d652-e2f3-4235-b3ca-3e4c28aa0ad8, c8488d3a-1690-4b2b-9f1d-8d74bf049d38, 63bc9875-8854-451a-8d1d-5cb778e4df2f, 6cfef229-3b4f-4d58-8f5c-b05349cc802c, fe63fbaa-ce1f-4219-8f19-01540c6e5ba0, 0513c6b1-3a5e-40fd-ba83-f816771014cd, 73de106c-c90d-4810-8ac9-4f374e38fd0a, f4dddae9-041d-4712-877a-fd22453d7d53, 5739f74e-7a24-46c2-b9a2-7960c504c21c'}]}"
"{'title': 'Children Receiving Care and Support Census', 'publisher': {'name': 'SAIL', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'memberOf': 'ALLIANCE'}, 'doiName': 'In Progress', 'keywords': ['Children', 'Welsh', 'SAIL'], 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'abstract': 'Census data relating to children with a care and support plan.'}",fb3fac03-a428-4b3f-8058-5622e1fd57d8,"{'spatial': 'Wales', 'followup': 'UNKNOWN', 'typicalAgeRange': '0-19', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Administrative data. can be linked to health data across all pathways.'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '5343bac9-244f-4211-8c9a-d9c29c79b4f3', '2.0.0': 'ea9fa5fb-928d-4736-8fbf-e3b58a49c6d6', '0.0.1': '58db5d37-6d1e-4a23-b0ac-e3ce2487c359', 'latest': 'ea9fa5fb-928d-4736-8fbf-e3b58a49c6d6'}","{'description': 'Census data relating to children with a care and support plan.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/'], 'isPartOf': 'NOT APPLICABLE'}",ea9fa5fb-928d-4736-8fbf-e3b58a49c6d6,https://web.www.healthdatagateway.org/dataset/ea9fa5fb-928d-4736-8fbf-e3b58a49c6d6,"{'usage': {'isReferencedBy': ['Lyons, R.A., Jones, K.H., John, G. et al. The SAIL databank: linking multiple health and social care datasets. BMC Med Inform Decis Mak 9, 3 (2009). https://doi.org/10.1186/1472-6947-9-3'], 'dataUseLimitation': 'GENERAL RESEARCH USE', 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'resourceCreator': ['Public Health Wales NHS Trust']}, 'access': {'accessRequestCost': 'Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'accessRights': ['https://saildatabank.com/application-process/'], 'dataController': 'SAIL Databank', 'jurisdiction': 'GB-WLS', 'dataProcessor': 'SAIL Databank', 'deliveryLeadTime': '2-6 MONTHS'}, 'formatAndStandards': {'conformsTo': 'OTHER', 'vocabularyEncodingScheme': 'OTHER', 'language': 'en', 'format': ['SQL database table']}}","{'origin': {'collectionSituation': 'COMMUNITY', 'purpose': 'ADMINISTRATIVE', 'source': 'EPR'}, 'temporal': {'distributionReleaseDate': '2019-12-11', 'accrualPeriodicity': 'ANNUAL', 'timeLag': '6 MONTHS PLUS', 'startDate': '2009-05-31', 'endDate': '2019-05-31'}}",2020-06-01T14:53:50Z,,2.0.0,"{'derivation': ['Not Available'], 'tools': ['https://conceptlibrary.saildatabank.com/'], 'qualifiedRelation': ['Yes. To any SAIL dataset & reference data.']}",2020-12-02T15:21:22Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 38, 'structuralMetadata.columnName': 38, 'structuralMetadata.columnDescription': 38, 'structuralMetadata.dataType': 38, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '17257301-12f7-4108-abc1-21a2f339f3bc', 'description': 'Census data relating to children with a care and support plan', 'name': 'main_crcs', 'dataElementsCount': 38, 'dataElements': 'a3e10127-799c-458a-9127-90dff28d9b80, 7a330dbc-a025-49aa-9551-8217c5120531, 45d6dd4b-0d45-45e0-84fb-07705dda39ea, fba05492-999b-4dd3-b6b1-5f923d997533, 7f00c712-5fac-4471-99d7-44cfcc3d4b61, 2a45e978-ad39-4a1d-b6d1-0f4ad6801901, e7606040-f21f-4a2f-b775-744c554725db, 3256de73-2998-4fea-8078-a1a248a72a26, a663c628-d98c-4338-9930-da7851eac2e9, 855259dc-6ff5-4720-a039-5054651d1900, 82b5fe8f-5da4-4d5d-9e4c-0ab8c5957436, 022cff41-4b12-4be8-bdfe-be59e38039e2, 434cd699-b50a-41b6-b597-d18faf095bf3, 448787ab-0aa8-4f26-bdbc-a063f3a56567, 4554dfa7-4ffc-4f05-ad49-5a227a10d373, b0b41015-4b17-464d-9df9-bc2e5b798b2f, f226d844-3119-49ff-b2f2-3a74fa392103, 70622c43-c869-4a47-8677-f88a13529656, d5709b56-4468-4e77-97c5-1c0035856b3b, 857cd739-a1b9-41d5-bb87-7720ced1377a, de9179bd-483b-43d4-bff8-08942b481190, b82c759c-5854-4acb-a1a1-fecb2de67e8d, 0cf180ff-c9c8-4236-9527-33b33407ca02, 6c4bbc3e-c1b4-48d7-b10e-43f535c0430e, 63402c9f-f492-4e60-a797-753e35cba3ba, 83631b01-cd33-4074-882f-f453f6b89cee, 75ba86bb-5556-4a56-a4f9-aa03b271c1da, 89c651a9-a21b-4548-a7b2-f660f59abe8a, fd095413-5d17-44c9-a288-2fc72926a8b2, f639f642-c62c-4781-9377-041115b29218, d5d31a97-0af0-4661-9f22-7ca1c3ea25de, fa95072e-8386-4733-9553-75b6b5f7ef76, ec6eef1a-fbfe-4af4-a6bc-50565543ffb1, 68c606b7-5131-4dce-babe-39db6e2d6bcf, 5b15a312-28f4-43ad-8194-4dc6e5930bf9, 32f27ac8-c0d4-4e64-a1ea-9222dd3f84e6, fd73dc4b-8727-424d-a806-65328f2efc66, e8c15da1-6802-4d20-b24e-8ed80a4ff68e'}]}"
"{'title': 'HES Outpatient data for CPRD GOLD', 'abstract': 'CPRD GOLD linked Hospital Episode Statistics Outpatient (HES OP) data contain records of NHS outpatient appointments occurring in England, including appointment dates, specialities and referral sources', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c2e1f9d3704d570cee', 'name': 'CPRD'}, 'keywords': ['OP', 'Outpatient', 'HES'], 'doiName': 'https://doi.org/10.48329/cp5e-7790', 'contactPoint': 'enquiries@cprd.com'}",21dc2345-3983-4a46-960c-f17974bc7b71,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Secondary care', 'typicalAgeRange': '0-115', 'spatial': ['https://www.geonames.org/6269131/england.html'], 'followup': '1 - 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'4.0.0': '81f3bdfe-de6b-4831-ba9a-4e28a34a6ab4', '5.0.0': 'eacd1a6e-6060-4843-ac9b-ff01e1dfe9c3', '3.0.0': '8625eb42-93df-4d33-875b-e6a93413d7ba', '2.0.0': 'dc09b4ca-838d-4025-9906-7e9d8b39f906', '1.0.0': '6407117a-e7dc-44a0-a73b-2e9a27c48c00', '0.0.1': '2ca0e30d-e8b8-4e2f-bec2-478d06f7e83c', 'latest': 'eacd1a6e-6060-4843-ac9b-ff01e1dfe9c3'}","{'description': 'CPRD GOLD linked Hospital Episode Statistics Outpatient (HES OP) data are a collection of individual records of outpatient appointments occurring in England. The data includes information on the type of outpatient consultation appointment dates, the main specialty and treatment specialty under which the patient was treated, referral source, waiting times, clinical diagnosis and procedures performed. \nHES OP data can be used to support health resource utilisation studies, clarify clinical health care pathways and enable variations in the uptake of services to be evaluated, for example by gender and age.', 'isPartOf': 'CPRD GOLD', 'associatedMedia': ['https://www.cprd.com/linked-data']}",eacd1a6e-6060-4843-ac9b-ff01e1dfe9c3,https://web.www.healthdatagateway.org/dataset/eacd1a6e-6060-4843-ac9b-ff01e1dfe9c3,"{'access': {'deliveryLeadTime': 'VARIABLE', 'dataController': 'Clinical Practice Research Datalink (CPRD)', 'accessRights': ['HTTPS://CPRD.COM/DATA-ACCESS'], 'accessRequestCost': ['https://www.cprd.com/pricing'], 'jurisdiction': ['GB-ENG'], 'dataProcessor': 'CPRD', 'accessService': 'Access to CPRD data, including UK Primary Care Data, and linked data such as Hospital Episode Statistics, is subject to protocol approval via CPRD’s Research Data Governance (RDG) Process. Independent scientific and patient advice is provided by Expert Review Committees (ERCs) and the Central Advisory Committee (CAC): https://www.cprd.com/research-applications'}, 'formatAndStandards': {'conformsTo': ['NHS DATA DICTIONARY'], 'vocabularyEncodingScheme': ['ICD10', 'ODS', 'OPCS4', 'SNOMED CT'], 'format': ['Tab delimited text'], 'language': ['en']}, 'usage': {'investigations': ['https://www.cprd.com/protocol-list'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'NO LINKAGE', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'dataUseRequirements': ['GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'isReferencedBy': ['Thorn JC,Turner E,Hounsome L,Walsh E,Donovan JL,Verne J,Neal DE,Hamdy FC,Martin RM,Noble SM. Validation of the Hospital Episode Statistics Outpatient Dataset in England. 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"{'title': 'Scottish Birth Record (SBR)', 'publisher': {'name': 'PUBLIC HEALTH SCOTLAND', 'memberOf': 'ALLIANCE', 'identifier': '5f8992a97150a1b050be0712'}, 'contactPoint': 'phs.edris@phs.scot', 'keywords': ['NHS Scotland', 'Neonatal Care', 'Births', 'NCS', 'CO-CONNECT', 'National Core Study', 'COVID-19'], 'abstract': ""The Scottish Birth Record (SBR) records baby's neonatal care in Scotland,  including readmissions and transfers in one electronic record. SBR is completed for all births in Scotland including stillbirths and home births.""}",81c53293-ef64-4507-8fcf-2a254dc19936,"{'spatial': ['https://www.geonames.org/2638360/scotland.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'OTHER', 'pathway': 'Secondary care data only', 'typicalAgeRange': '0-4'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '4c1f6594-9ade-4e24-8e44-af9ecb73e231', '6.0.0': 'eaec06fa-a27e-46d1-9be9-6e1f9a16fb5d', '0.0.1': '1ca7b3f8-6fd1-48e3-abb0-fed7a712b3e7', '4.0.0': '621576c2-a995-424b-a506-2276f9b03f37', '5.0.0': 'af434b05-52a7-4ff1-92f5-e2dd38a574aa', '1.0.0': '1a575fae-c0d7-4718-b0d6-ba7c9c3edc0d', '3.0.0': '95876a52-9494-459b-a0e8-3a956740b05c', 'latest': 'eaec06fa-a27e-46d1-9be9-6e1f9a16fb5d'}","{'description': ""The Scottish Birth Record is a web-based system developed on the NHSNet. It was introduced in 2002 as a replacement for SMR11. It provides the functionality to record all of a baby's neonatal care in Scotland, from antenatal through to post delivery, including readmissions and transfers in one electronic record. SBR is based on individuals and events rather than episodes and is completed for all births including stillbirths and home births. The system has been implemented to varying degrees (either directly or indirectly via interfaces with existing hospital systems) in all Scottish hospitals providing midwifery and/or neonatal care. A CHI number is generated soon after a baby is born in order to minimise the chances of a baby being lost on the database through a change of name after birth. The SBR collects a wide variety of information on the child from birth and during the baby's first year of life, with up to four hundred data items recorded for any one individual. This includes gestation, weight, congenital anomalies and discharge details. Identifiers such as name, date of birth, Community Health Index number and postcode are also included."", 'associatedMedia': ['https://www.isdscotland.org/products-and-services/scottish-birth-record/how-sbr-and-unhs-work/'], 'isPartOf': 'Maternity and Births'}",eaec06fa-a27e-46d1-9be9-6e1f9a16fb5d,https://web.www.healthdatagateway.org/dataset/eaec06fa-a27e-46d1-9be9-6e1f9a16fb5d,"{'formatAndStandards': {'format': ['text/csv'], 'conformsTo': ['OTHER'], 'language': ['en'], 'vocabularyEncodingScheme': ['ICD10']}, 'access': {'jurisdiction': ['GB'], 'accessService': 'Scottish National Data Safe Haven - https://www.isdscotland.org/Products-and-Services/eDRIS/', 'dataProcessor': 'National Services Scotland', 'accessRights': ['https://www.informationgovernance.scot.nhs.uk/pbpphsc/', 'https://www.isdscotland.org/Products-and-Services/eDRIS/', 'https://publichealthscotland.scot/contact-us/bespoke-data-analysis-requests/'], 'deliveryLeadTime': 'VARIABLE', 'accessRequestCost': ['Research Projects - https://www.isdscotland.org/Products-and-Services/eDRIS/', 'Bespoke data analysis requests - https://publichealthscotland.scot/contact-us/bespoke-data-analysis-requests/'], 'dataController': 'Public Health Scotland'}, 'usage': {'resourceCreator': ['National Services Scotland', 'Public Health Scotland'], 'dataUseRequirements': ['COLLABORATION REQUIRED', 'INSTITUTION SPECIFIC RESTRICTIONS', 'NOT FOR PROFIT USE'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}}","{'origin': {'source': ['EPR'], 'collectionSituation': ['IN-PATIENTS'], 'purpose': ['CARE']}, 'temporal': {'startDate': '2004-02-20', 'timeLag': '1-2 MONTHS', 'distributionReleaseDate': '2020-09-01', 'accrualPeriodicity': 'MONTHLY'}}",2020-01-10T22:06:53Z,"[{'observedNode': 'EVENTS', 'measuredValue': '1578630', 'disambiguatingDescription': 'birth records', 'observationDate': '17/01/2021', 'measuredProperty': 'count'}]",6.0.0,,2021-10-28T14:42:48Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 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"{'title': 'English Longitudinal Study of Ageing (ELSA)', 'abstract': 'The English Longitudinal Study of Ageing (ELSA) is a nationally representative multi-purpose survey of individuals aged 50 and over.', 'publisher': {'name': 'DATAMIND', 'identifier': '61800787f4dde0c2a01e1ea2', 'memberOf': 'HUBS'}, 'keywords': ['ELSA', 'Mental Health', 'Physical Measures', 'Cognitive', 'Ageing', 'Longitudinal', 'COVID-19', 'DATAMIND']}",f12cb023-1402-49d1-aa27-e0fe4ed19fd7,"{'followup': '> 10 YEARS', 'typicalAgeRange': '50-100', 'spatial': ['https://www.geonames.org/6269131/england.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'eb030592-7f5d-4969-abde-c4a962251406'},"{'description': 'The English Longitudinal Study of Ageing (ELSA) is a panel study of a representative cohort of men and women living in England aged ≥50 years. The study collects objective and subjective measures of physical and mental health, wellbeing, finances and attitudes around ageing and how these change over time. \n\nELSA was designed as a sister study to the Health and Retirement Study in the USA and is multidisciplinary in orientation, involving the collection of economic, social, psychological, cognitive, health, biological and genetic data. The original sample was drawn from households that had previously responded to the Health Survey for England (HSE) between 1998 and 2001. A pilot study was conducted in 2001 before main fieldwork began in March 2002. The same group of respondents have been interviewed at two-yearly interviews to measure changes in their health, economic and social circumstances. Younger age groups are replaced or refreshed to retain the panel. The sample has been refreshed using HSE participants in waves 3, 4, 6, 7 and 9. Data are collected using computer-assisted personal interviews and self-completion questionnaires, with additional nurse visits for the assessment of biomarkers every 4 years. The original sample consisted of 11,391 members ranging in age from 50 to 100 years. ELSA is harmonized with ageing studies in other countries to facilitate international comparisons, and is linked to financial and health registry data.\n\nMore than 18,000 people have taken part in the study since it started in 2002, with the same people re-interviewed every two years. Data from ELSA participants informs policy across all aspects of ageing including health and social care, retirement and pensions policy, and social and civic participation.'}",eb030592-7f5d-4969-abde-c4a962251406,https://web.www.healthdatagateway.org/dataset/eb030592-7f5d-4969-abde-c4a962251406,"{'access': {'jurisdiction': ['GB'], 'dataController': 'UK Data Service', 'dataProcessor': 'UK Data Service', 'accessRights': ['https://www.elsa-project.ac.uk/accessing-elsa-data']}}","{'temporal': {'timeLag': 'VARIABLE', 'accrualPeriodicity': 'OTHER', 'startDate': '2001-02-20'}}",2021-11-22T12:30:38Z,"[{'observedNode': 'PERSONS', 'measuredValue': 7222, 'observationDate': '01/07/2019', 'measuredProperty': 'Count'}]",1.0.0,,2021-11-22T12:30:39Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'ICT-based intervention for adult asthma with limited health literacy', 'publisher': {'name': 'BREATHE', 'memberOf': 'HUB', 'identifier': '607db9c2e1f9d3704d570ce6'}, 'abstract': 'We aim to develop and refine a mobile application for asthma self-management which tailored to health literacy needs for adults patients with asthma in primary care clinic in the Klang District, Selangor State, Malaysia.', 'keywords': ['HEALTH LITERACY', 'SELF-MANAGEMENT', 'MALAYSIA', 'ICT', 'RESPIRE', 'BREATHE'], 'contactPoint': 'RESPIRE@ed.ac.uk', 'doiName': '10.7488/ds/2753'}",1d6b02f1-47b8-42ad-919d-f738b545cff7,"{'spatial': ['https://www.geonames.org/1733045/malaysia.html'], 'typicalAgeRange': '18-150', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'a2d81356-8b74-450c-aeb2-bd39a2e0604a', '2.0.0': 'eb376dc5-1abb-4d06-a39a-e479078bcf9d', '0.0.1': '62824365-480a-4d20-9ab2-7e7739e7e2ec', 'latest': 'eb376dc5-1abb-4d06-a39a-e479078bcf9d'}","{'description': 'We aim to develop and refine a mobile application for asthma self-management which tailored to health literacy needs for adults patients with asthma in primary care clinic in the Klang District, Selangor State, Malaysia. Dataset contains qualitative interviews from phase 2, responses to quantitative questionnaire and qualitative interviews in phase 3. \n\nSupported self-management for asthma (including action plans and regular review) is highly effective at improving asthma control, reducing acute attacks and the need for unscheduled healthcare. However, globally it is challenging to implement self-management in patients with asthma. One particular challenge is the need to tailor support for people with limited health literacy especially in low and middle income countries (LMICs) such as in Malaysia. In 2015,  it was estimated that more than 90% of the Malaysian general population have limited health literacy. A tailored asthma self-management intervention, paying attention to the needs of people with limited health literacy, potentially could lessen health inequalities in Malaysia. This study is conducted in 3 phases. Phase 1 is a systematic review looking at effectiveness of asthma self-management interventions which address health literacy needs. We found gap in this area of knowledge. In phase 2, we conducted mixed qualitative and Photovoice, an arts-based qualitative study to explore lived experience of people living with asthma and limited health literacy in Malaysia. We found rich data on challenges and enablers around psychosocial themes on how people views asthma, self-management and experienced health literacy.  We also explore the potential of technology i.e. mobile application to tailor asthma self-management support. Based on phase 2 findings, in phase 3, we developed and refined an asthma self-management mobile application with feedback from patients and health care professionals through a intervention design workshop which was conducted online. \n\nFor further information, see:\nhttps://www.ed.ac.uk/usher/respire/phd-studentships/hani-salim\nhttps://www.ed.ac.uk/usher/respire/health-literacy-asthma-malaysia           \n\nPhase 1: Salim, H., Young, I., Shariff Ghazali, S. et al. Protocol for a systematic review of interventions addressing health literacy to improve asthma self-management. npj Prim. Care Respir. Med. 29, 18 (2019). https://doi.org/10.1038/s41533-019-0125-y\n\nPhase 1: Salim H, Ramdzan SN, Ghazali SS, Lee PY, Young I, McClatchey K, Pinnock H; NIHR Global Health Research Unit on Respiratory Health (RESPIRE) collaborations. A systematic review of interventions addressing limited health literacy to improve asthma self-management. J Glob Health. 2020 Jun;10(1):010427. doi: 10.7189/jogh.10.010428.', 'associatedMedia': ['https://www.ed.ac.uk/usher/respire/phd-studentships/hani-salim', 'https://www.ed.ac.uk/usher/respire/health-literacy-asthma-malaysia'], 'isPartOf': 'BREATHE'}",eb376dc5-1abb-4d06-a39a-e479078bcf9d,https://web.www.healthdatagateway.org/dataset/eb376dc5-1abb-4d06-a39a-e479078bcf9d,"{'access': {'deliveryLeadTime': 'OTHER', 'dataProcessor': 'RESPIRE', 'accessRights': ['https://www.ed.ac.uk/usher/respire/about/projects'], 'accessService': 'Access is managed on a project-by-project basis. Contact the RESPIRE team:', 'dataController': 'RESPIRE', 'jurisdiction': ['MY']}, 'usage': {'isReferencedBy': ['Salim, Hani; Pinnock, Hilary; Young, Ingrid. (2020). Phase 2: The views and experiences of people with limited health literacy and asthma on managing their condition: a qualitative study, [text]. University of Edinburgh. Edinburgh Medical School: Molecular, Genetic and Population Health Sciences. Usher Institute.'], 'resourceCreator': ['RESPIRE']}, 'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'format': ['WORD/PDF']}}","{'temporal': {'timeLag': 'NOT APPLICABLE', 'accrualPeriodicity': 'STATIC', 'startDate': '2018-04-01', 'endDate': '2021-03-31'}}",2020-08-11T16:11:20Z,[{}],2.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-09-01T09:33:45Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Quality of Life of Colorectal Cancer Survivors:Patient Reported Outcomes (Aurum)', 'abstract': 'CPRD Aurum linked Quality of Life of Colorectal Cancer Survivors survey (QOLC) data from survivors of colorectal cancer diagnosed 2010-2011. Note, these data are no longer routinely available; contact enquiries@cprd.com to discuss.', 'contactPoint': 'enquiries@cprd.com', 'publisher': {'name': 'CPRD', 'identifier': '607db9c2e1f9d3704d570cee', 'memberOf': 'ALLIANCE'}, 'keywords': ['Cancer Survivor', 'Quality of Life']}",bfb90d2b-746d-44a6-a896-4979d73d9276,"{'pathway': 'Cancer registration data are collected from a range of health care provider systems and other services.', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/6269131/england.html'], 'typicalAgeRange': '0-115', 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'eb62e466-f199-43ea-b07a-3aa468be5076'},"{'description': 'CPRD Aurum linked Quality of Life of Colorectal Cancer Survivors in England: Patient Reported Outcome Measures (PROMs) survey, is a national survey that was commissioned by the Department of Health as a follow-on from the pilot study in July 2011 undertaken to confirm the value of collecting PROMs data on breast, prostate, colorectal and non-Hodgkin’s lymphoma. It includes survey data from 34,467 patients aged 16 years and over with an incident colorectal cancer diagnosis during Jan 2010 Dec 2011. Outcome items in the survey are made up of Euroqol 5-level (EQ-5D), Functional Assessment of Cancer Therapy (FACT), and Social Difficulties Inventory (SDI) items.', 'associatedMedia': ['https://www.cprd.com/linked-data'], 'isPartOf': 'CPRD Aurum'}",eb62e466-f199-43ea-b07a-3aa468be5076,https://web.www.healthdatagateway.org/dataset/eb62e466-f199-43ea-b07a-3aa468be5076,"{'usage': {'resourceCreator': ['Public Health England (PHE) via the National Cancer Registration and Analysis Service (NCRAS)'], 'isReferencedBy': ['[]'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'NO LINKAGE', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'dataUseRequirements': ['GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'investigations': ['https://www.cprd.com/protocol-list']}, 'access': {'accessRequestCost': ['https://www.cprd.com/pricing'], 'deliveryLeadTime': 'VARIABLE', 'accessService': 'Access to CPRD data, including UK Primary Care Data, and linked data such as Hospital Episode Statistics, is subject to protocol approval via CPRD’s Research Data Governance (RDG) Process. Independent scientific and patient advice is provided by Expert Review Committees (ERCs) and the Central Advisory Committee (CAC): https://www.cprd.com/research-applications', 'dataProcessor': 'CPRD', 'accessRights': ['HTTPS://CPRD.COM/DATA-ACCESS'], 'jurisdiction': ['GB-ENG'], 'dataController': 'Clinical Practice Research Datalink (CPRD)'}, 'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['OTHER'], 'conformsTo': ['OTHER'], 'format': ['Tab delimited text']}}","{'temporal': {'endDate': '2012-11-20', 'timeLag': 'MORE 6 MONTHS', 'startDate': '2001-10-20', 'distributionReleaseDate': '2020-12-11', 'accrualPeriodicity': 'QUARTERLY'}, 'origin': {'collectionSituation': ['IN-PATIENTS', 'OTHER'], 'purpose': ['CARE', 'DISEASE REGISTRY'], 'source': ['ELECTRONIC SURVEY']}}",2022-02-18T12:00:11Z,"[{'observedNode': 'PERSONS', 'measuredValue': 3255865, 'disambiguatingDescription': 'Number of CPRD Aurum patients matched to a single cancer identifier', 'observationDate': 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"{'title': 'Annual District Death Extract', 'publisher': {'name': 'SAIL', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'memberOf': 'ALLIANCE'}, 'doiName': 'In Progress', 'keywords': ['Death', 'SAIL', 'NCS', 'COVID-19', 'National Core Study'], 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'abstract': 'Register of all deaths relating to Welsh residents, including those that died out of Wales.'}",15cf4241-abad-4dcc-95b0-8cd7c02be999,"{'spatial': 'Wales', 'pathway': 'Not Applicable', 'followup': 'OTHER', 'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'f7865653-85d1-4442-b14c-3029f0ca88a5', '7.0.0': 'eba50bb1-e971-4062-8ece-81be39ceca5b', '0.0.1': '3be205c8-c1a3-4130-bef2-850b2d418169', '5.0.0': '779b6d54-b923-4416-b74e-917cab30baa9', '4.0.0': '8a9404f0-5209-4438-8261-b3a0d2d563f5', '3.0.0': '86972216-9df3-45c3-880b-0c61647ef886', '2.0.0': '999b8bb8-b5dd-464e-b14b-b91475ba2bca', '6.0.0': '03db4df3-f482-4bdd-a335-546ffffbeaab', 'latest': 'eba50bb1-e971-4062-8ece-81be39ceca5b'}","{'description': 'Office for National Statistics (ONS) register of all deaths relating to Welsh residents, including those that died outside of Wales.\n\nThe data are collected from death registrations.', 'associatedMedia': [' https://saildatabank.com/about-us/overview/'], 'isPartOf': 'NOT APPLICABLE'}",eba50bb1-e971-4062-8ece-81be39ceca5b,https://web.www.healthdatagateway.org/dataset/eba50bb1-e971-4062-8ece-81be39ceca5b,"{'access': {'accessRequestCost': 'Data provision is free from SAIL. 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"{'title': 'Community Services Data Set', 'abstract': 'CSDS sets out national definitions for the extraction of data about children and adults: \n•\tpersonal and demographic \n•\tsocial and personal circumstances \n•\tbreastfeeding and nutrition \n•\tcare event and screening activity \n•\tdiagnoses\n•\tscored assessments', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'NHS DIGITAL', 'identifier': '5f86cd34980f41c6f02261f4'}, 'contactPoint': 'enquiries@nhsdigital.nhs.uk', 'keywords': ['Community Services', 'CSDS', 'DIGITRIALS']}",5616e0a6-22f1-43a5-a2bd-dcecfa2f3b70,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'https://www.geonames.org/6269131/england.html', 'pathway': 'COMMUNITY SERVICES', 'typicalAgeRange': '0-150', 'followup': 'UNKNOWN'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '8e66e623-2859-4a65-93d7-abd41e139976', '3.0.0': 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approved, data will be made available either by secure file transfer or through the Data Access Environment (DAE).\nSecure file transfer: https://digital.nhs.uk/services/transfer-data-securely\nDAE: https://digital.nhs.uk/services/data-access-environment-dae', 'accessRights': ['https://digital.nhs.uk/services/data-access-request-service-dars']}, 'usage': {'investigations': ['https://digital.nhs.uk/services/data-access-request-service-dars/register-of-approved-data-releases'], 'resourceCreator': ['NHS DIGITIAL'], 'dataUseLimitation': ['NO RESTRICTION'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE']}, 'formatAndStandards': {'format': ['CSV'], 'conformsTo': ['NHS DATA DICTIONARY'], 'vocabularyEncodingScheme': ['NHS NATIONAL CODES', 'SNOMED CT', 'READ', 'ICD10', 'ODS'], 'language': ['en']}}","{'temporal': {'timeLag': '1-2 MONTHS', 'accrualPeriodicity': 'MONTHLY', 'startDate': '2017-01-10'}, 'origin': {'purpose': 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"{'title': 'NHS Grampian Biorepository', 'keywords': ['Malignant tumour of ovary', 'NHS Grampian', 'Biorepository', 'UKCRC Tissue Directory', 'Malignant tumour of lung', 'Malignant tumour of breast', 'Malignant tumour of oesophagus', 'Malignant neoplasm of liver', 'Malignant tumour of colon'], 'abstract': 'Collection of samples and data across the following diseases: Malignant neoplasm of liver, Malignant tumour of breast, Malignant tumour of colon, Malignant tumour of lung, Malignant tumour of oesophagus, Malignant tumour of ovary.', 'publisher': {'contactPoint': 'grampian.biorepository@nhs.net', 'memberOf': 'ALLIANCE', 'name': 'TISSUE DIRECTORY'}, 'contactPoint': 'grampian.biorepository@nhs.net', 'doiName': 'Not Available'}",10d0def8-dc03-473f-b60b-4c0dc3642a25,"{'physicalSampleAvailability': ['TISSUE', 'WHOLE BLOOD'], 'spatial': 'Scotland', 'typicalAgeRange': '40-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'a047b73c-7b62-4fbb-9cbb-81e34eeb5a2b', '3.0.0': 'ece82228-9af1-4699-a763-b4608908b645', '1.0.0': '016cbf4f-746e-43c1-b7fd-84d3ae74deeb', '2.0.0': 'd5ab658e-b474-4e22-95f8-92607c40792d', 'latest': 'ece82228-9af1-4699-a763-b4608908b645'}","{'description': 'The Grampian Biorepository was developed to provide core facilities that could undertake research based around the collection, storage, analysis and distribution of human biological samples collected within NHS Grampian. The biorepository supports a range of tissue based projects. The main areas of research activity are translational research programs in colorectal cancer, lung cancer. In addition we have the following collections: orthopaedic tissues and liver samples. We have access to the Pathology Department archive consisting of patient identifiable paper documents, tissue blocks and glass slides containing in excess 1 million patient samples.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",ece82228-9af1-4699-a763-b4608908b645,https://web.www.healthdatagateway.org/dataset/ece82228-9af1-4699-a763-b4608908b645,"{'access': {'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED.', 'accessRights': 'Please contact the publisher using Contact Point details provided.', 'dataProcessor': 'Not Applicable', 'accessRequestCost': 'Not specified', 'dataController': 'NHS Grampian', 'jurisdiction': 'GB-SCT'}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'distributionReleaseDate': '2019-02-25', 'startDate': '2008-01-01'}}",2020-01-13T17:16:33Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T16:09:11Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'The Fenland Study', 'publisher': {'identifier': '60a62fc87dd392a16e228a8e', 'memberOf': 'OTHER', 'name': 'MRC EPIDEMIOLOGY UNIT - UNIVERSITY OF CAMBRIDGE'}, 'contactPoint': 'datasharing@mrc-epid.cam.ac.uk', 'doiName': '10.22025/2017.10.101.00001', 'keywords': ['diabetes', 'Obesity', 'genetics', 'lifestyle', 'cohort study', 'Diet', 'physical activity', 'proteomics', 'metabolomics'], 'abstract': 'The Fenland Study is a population-based cohort study of the interaction between environment and genetic factors in determining obesity, insulin sensitivity and hyperglycemia.'}",8ca5cc9c-bb4e-4fa4-b430-165720cd9634,"{'followup': '1 - 10 YEARS', 'pathway': 'Volunteers are recruited from participating primary care practices', 'physicalSampleAvailability': ['DNA', 'PLASMA', 'SERUM'], 'spatial': ['United Kingdom,England,Eastern,Fenland', 'United Kingdom,England,Eastern,East Cambridgeshire', 'United Kingdom,England,Eastern,Cambridge', 'United Kingdom,England,Eastern,South Cambridgeshire'], 'typicalAgeRange': '30-62'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'ecab76f5-afd8-46b4-83fa-5eb3c2e683d7', '2.0.0': 'ed8683b0-1745-47fe-b644-710e6b8dca33', 'latest': 'ed8683b0-1745-47fe-b644-710e6b8dca33'}","{'description': 'Information for researchers web page can be found at: https://doi.org/10.22025/2017.10.101.00001\n\nData sharing portal page, including data dictionary links: https://epi-meta.mrc-epid.cam.ac.uk/studies/fenland/release.shtml'}",ed8683b0-1745-47fe-b644-710e6b8dca33,https://web.www.healthdatagateway.org/dataset/ed8683b0-1745-47fe-b644-710e6b8dca33,"{'access': {'jurisdiction': ['GB-ENG'], 'dataProcessor': 'The University of Cambridge', 'dataController': 'The University of Cambridge', 'accessRights': ['https://epi-meta.mrc-epid.cam.ac.uk/']}, 'formatAndStandards': {'language': ['en'], 'conformsTo': ['LOCAL'], 'format': ['text', 'csv'], 'vocabularyEncodingScheme': ['LOCAL']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['NOT FOR PROFIT USE', 'RETURN TO DATABASE OR RESOURCE', 'USER SPECIFIC RESTRICTION', 'PROJECT SPECIFIC RESTRICTIONS']}}","{'temporal': {'accrualPeriodicity': 'IRREGULAR', 'timeLag': 'OTHER', 'startDate': '2005-01-03'}, 'origin': {'collectionSituation': ['OTHER'], 'purpose': ['STUDY'], 'source': ['PAPER BASED']}}",2022-03-30T08:38:16Z,"[{'observedNode': 'PERSONS', 'measuredValue': '12435', 'observationDate': '03/01/2005', 'measuredProperty': 'Count'}]",2.0.0,,2022-04-07T12:20:57Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Falls and Fragility Fracture Audit Programme National Hip Database Facilities Survey 2019', 'contactPoint': 'DataSharing@hqip.org.uk', 'abstract': 'The NHFD FS is an annual survey of all trauma centres in the UK.  It includes data on the support for clinical governance, organisation of theatres and care bundles that are used.', 'keywords': ['Facilities Survey 2019', 'Fall', 'Database', 'Hip Fracture', 'Fragility', 'FFFAP', 'Audit'], 'publisher': {'memberOf': 'ALLIANCE', 'name': 'HQIP', 'contactPoint': 'DataSharing@hqip.org.uk'}}",025c9e8a-938b-4886-9e03-fcad90fe7157,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '452f0022-0ab0-47fc-9fc4-bde4b292cd2b', '3.0.0': 'ee099373-8a72-4ec7-818f-3cbb9c8a793d', '1.0.0': '05dcb3c1-2bc0-4e03-b1a5-31e7b6ef187f', '2.0.0': '2dbd2e38-a4bb-4f8c-b401-ebec10f0d89e', 'latest': 'ee099373-8a72-4ec7-818f-3cbb9c8a793d'}","{'description': 'The NHFD FS is an annual survey of all trauma centres in the UK. It includes data on the support for clinical governance, organisation of theatres and care bundles that are used.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",ee099373-8a72-4ec7-818f-3cbb9c8a793d,https://web.www.healthdatagateway.org/dataset/ee099373-8a72-4ec7-818f-3cbb9c8a793d,"{'access': {'jurisdiction': 'GB-GBN', 'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data\nhttps://www.rcplondon.ac.uk/guidelines-policy/applying-work-falls-and-fragility-fracture-audit-programme-data', 'deliveryLeadTime': 'OTHER'}, 'formatAndStandards': {'language': ['en']}}",,2020-01-13T14:55:17Z,,3.0.0,,2021-04-14T08:14:13Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'The PEACE Study', 'abstract': 'Collection of samples and data across the following diseases: Carcinoma in situ of lung', 'publisher': {'memberOf': 'ALLIANCE', 'contactPoint': 'ctc.peace@ucl.ac.uk', 'name': 'TISSUE DIRECTORY'}, 'contactPoint': 'ctc.peace@ucl.ac.uk', 'keywords': ['Advanced Cancer', 'Evaluation', 'Posthumous', 'UKCRC Tissue Directory', 'Environment', 'Carcinoma in situ of lung', 'PEACE', 'Study'], 'doiName': 'Not Available'}",33b1a989-5f61-412e-bdae-b551c92d1ed6,"{'typicalAgeRange': '40-150', 'physicalSampleAvailability': ['TISSUE'], 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '06068e48-af64-44c0-95b4-719b849d363a', '3.0.0': 'ee4a73ef-fb4e-4926-9fcc-db6b44b1447e', '1.0.0': '832e4d5d-3abb-4d1c-9849-fc05af00daa6', '2.0.0': '979d600f-f541-4028-8576-a6e4603fc244', 'latest': 'ee4a73ef-fb4e-4926-9fcc-db6b44b1447e'}","{'description': 'The PEACE (Posthumous Evaluation of Advanced Cancer Environment) Study', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",ee4a73ef-fb4e-4926-9fcc-db6b44b1447e,https://web.www.healthdatagateway.org/dataset/ee4a73ef-fb4e-4926-9fcc-db6b44b1447e,"{'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}, 'access': {'dataController': 'UCL', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'dataProcessor': 'Not Applicable', 'jurisdiction': 'GB-ENG', 'accessRequestCost': 'Not specified'}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}}","{'temporal': {'startDate': '2014-01-01', 'accrualPeriodicity': 'IN PROGRESS'}}",2020-01-13T17:14:15Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T16:14:54Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Hospital Episode Statistics Critical Care', 'keywords': ['Episodes', 'Hospital', 'Critical Care', 'Diagnosis', 'Emergency', 'Operations', 'Critical Care Period', 'Critical Care Records', 'Intensive Care Unit', 'ICU', 'High Dependency Unit ', 'HDU', 'Level 2 Critical Care Bed', 'Level 3 Critical Care Bed', 'Neonatal Care', 'Babies', 'Pediatric Care', 'Children', 'Organ Support', 'Heart', 'Kidney', 'Liver', 'Breathing', 'Circulation', 'HES', 'DIGITRIALS', 'National Core Study', 'COVID-19', 'NCS'], 'publisher': {'name': 'NHS DIGITAL', 'memberOf': 'ALLIANCE', 'identifier': '5f86cd34980f41c6f02261f4'}, 'abstract': 'Record-level patient data set of patients\xa0admitted for treatment and receiving Critical Care (intensive care or high dependency care) at NHS hospitals in England. A record represents one episode of Critical Care.', 'contactPoint': 'enquiries@nhsdigital.nhs.uk'}",80564a6b-1458-41de-a131-772eb93c0509,"{'pathway': 'Secondary Care pathway. This dataset covers critical care periods for inpatient admissions to hospitals in England. It includes information on the treatment and outcome of the critical care period and can be linked to the HES APC dataset to get further information on the admission relating to the critical care period.', 'followup': 'OTHER', 'spatial': ['England'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-120'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '11a60dee-d14a-447a-9e59-0bbc109919d2', '7.0.0': 'eec9fec3-2257-4dd2-a3a9-8c164322fbaa', '2.0.0': '88aef872-87fc-471b-a4ed-276349ef575a', '3.0.0': 'f0392b68-5075-4557-adaa-2fb24b5dec4d', '6.0.0': '34d2310f-c5f2-42c4-be1a-31c1ad579013', '5.0.0': 'c476d414-8397-48a3-a0b3-95236b0c3515', '4.0.0': '26c561da-15eb-4fdd-8dde-c16d0114f297', 'latest': 'eec9fec3-2257-4dd2-a3a9-8c164322fbaa'}","{'description': ""Hospital Episode Statistics (HES) is a database containing details of all admissions, A and E attendances and outpatient appointments at NHS hospitals in England.\n\nAdult Critical Care (ACC) is a subset of APC data. An Intensive Care Unit (ICU) or High Dependency Unit (HDU) ward in a hospital, known as a critical care unit, provides support, monitoring and treatment for critically ill patients requiring constant support and monitoring to maintain function in at least one organ, and often in multiple organs. Medical equipment is used to take the place of patients’ organs during their recovery.\n\nSome critical care units are attached to condition-specific treatment units, such as heart, kidney, liver, breathing, circulation or nervous disorders. Others specialise in neonatal care (babies), paediatric care (children) or patients with severe injury or trauma.\n\nInitially this data is collected during a patient's time at hospital as part of the Commissioning Data Set (CDS). This is submitted to NHS Digital for processing and is returned to healthcare providers as the Secondary Uses Service (SUS) data set and includes information relating to payment for activity undertaken. It allows hospitals to be paid for the care they deliver.\n\nThis same data can also be processed and used for non-clinical purposes, such as research and planning health services. Because these uses are not to do with direct patient care, they are called 'secondary uses'. This is the HES data set.\n\nHES data covers all NHS Clinical Commissioning Groups (CCGs) in England, including:\n\nprivate patients treated in NHS hospitals\npatients resident outside of England\ncare delivered by treatment centres (including those in the independent sector) funded by the NHS\nEach HES record contains a wide range of information about an individual patient admitted to an NHS hospital, including:\n\nclinical information about diagnoses and operations\npatient information, such as age group, gender and ethnicity\nadministrative information, such as dates and methods of admission and discharge\ngeographical information such as where patients are treated and the area where they live\nWe apply a strict statistical disclosure control in accordance with the NHS Digital protocol, to all published HES data. 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"{'title': 'Scottish Covid-19 Vaccination Data', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '5f8992a97150a1b050be0712', 'name': 'PUBLIC HEALTH SCOTLAND'}, 'keywords': ['COVID-19', 'National Core Study', 'Immunisations', 'NCS'], 'abstract': 'This dataset contains COVID-19 Vaccination events in Scotland since December 2020. This includes information such as eligibility cohort, date of vaccination, and vaccination product.', 'contactPoint': 'phs.edris@phs.scot'}",bcfd3b49-f7f0-489e-bc1b-bcce0bd261f2,"{'typicalAgeRange': '18-150', 'pathway': 'N/A', 'followup': 'UNKNOWN', 'spatial': 'https://www.geonames.org/2638360/scotland.html', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '41f1e6c1-b4b5-4c2a-a181-01b7eda99b79', '2.0.0': 'eee15509-f23a-441e-b5be-ee76bd2ba649', '0.0.1': 'd713a287-51b6-4951-a479-9a491348c83f', 'latest': 'eee15509-f23a-441e-b5be-ee76bd2ba649'}","{'description': 'This dataset contains COVID-19 Vaccination events in Scotland since December 2020. This includes information such as eligibility cohort, date of vaccination and vaccination product.'}",eee15509-f23a-441e-b5be-ee76bd2ba649,https://web.www.healthdatagateway.org/dataset/eee15509-f23a-441e-b5be-ee76bd2ba649,"{'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['Dataset is collected by Public Health Scotland and NHS Education Scotland'], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'NOT FOR PROFIT USE', 'PROJECT SPECIFIC RESTRICTIONS']}, 'access': {'jurisdiction': ['GB-SCT'], 'dataController': 'Public Health Scotland and NHS Education Scotland', 'deliveryLeadTime': 'VARIABLE', 'accessRights': ['https://www.isdscotland.org/Products-and-Services/eDRIS/'], 'accessRequestCost': ['https://www.isdscotland.org/Products-and-Services/eDRIS/'], 'dataProcessor': 'Public Health Scotland', 'accessService': 'Scottish National Safe Haven'}, 'formatAndStandards': {'format': ['text'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en']}}","{'temporal': {'timeLag': 'LESS 1 WEEK', 'accrualPeriodicity': 'WEEKLY', 'distributionReleaseDate': '2021-04-07', 'startDate': '2020-12-02'}, 'origin': {'purpose': ['ADMINISTRATIVE', 'CARE'], 'source': ['OTHER'], 'collectionSituation': ['CLINIC', 'OTHER']}}",2021-04-08T14:51:39Z,"[{'observedNode': 'EVENTS', 'measuredValue': '2745552', 'observationDate': '31/03/2021', 'measuredProperty': 'Count'}]",2.0.0,,2021-07-12T17:32:04Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 16, 'structuralMetadata.columnName': 16, 'structuralMetadata.columnDescription': 16, 'structuralMetadata.dataType': 16, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '33d7e495-0fae-403f-92fc-640ddd16bcc4', 'description': 'Vaccination Data at time of event', 'name': 'Vaccinations', 'dataElementsCount': 16, 'dataElements': '9e04a4a3-adde-4512-8230-8dd07d6f38bf, 944651b0-14d0-4c70-9a68-d2f7a49034e5, f448a655-4829-4a9d-875b-45ccb2c7011d, d666d530-2bff-4ebd-bd7c-0a94b133bc90, c429ea21-3df5-48dc-bc75-905a98b30129, 881f8cfe-5f89-408a-b42b-f419d8b6f5de, db52e468-159e-430a-a74b-ceaec307e077, a11ed0fb-317c-45db-b027-cfc9e74b76d6, 533e766e-9044-4f2b-9c38-175247536523, d90dc222-f446-4272-a5fc-1a2c1347410c, f4b343a7-2701-41b8-86dc-9fb44f7683e8, 1be61dc8-e117-440b-97a8-82075e320091, d765a346-0b7b-4098-891d-6cbcd72eec87, c0cdfc39-ccc4-4496-a76d-e476b655ea9f, c4955788-9eb8-4cf7-83c1-f6299dc19ce4, 597257b5-43ca-43e2-927c-24296bd967c3'}]}"
"{'title': 'Understanding Society', 'abstract': 'Understanding Society is a largescale longitudinal survey of approximately 40,000 households across the United Kingdom.', 'publisher': {'name': 'DATAMIND', 'identifier': '61800787f4dde0c2a01e1ea2', 'memberOf': 'HUBS'}, 'keywords': ['Understanding Society', 'Mental Health', 'Physical Measures', 'COVID-19', 'Longitudinal', 'Cohort', 'Cognitive', 'Education', 'Employment', 'DATAMIND']}",932cecdf-65fb-4e3d-9454-7a2d0585e970,"{'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2638360/scotland.html', 'https://www.geonames.org/2634895/wales.html', 'http://www.geonames.org/2641364/northern-ireland.html'], 'typicalAgeRange': '10-100', 'followup': '> 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'ef478925-7612-4cd6-a10e-5e64ee8a0f4d'},"{'description': 'Understanding Society: The UK Household Longitudinal Study follows the lives of thousands of individuals within households over time.  It is an internationally recognised study and provides vital evidence for scientists and policymakers on the causes and consequences of deep-rooted social problems.\n\nThe study commenced in 2009, building on and incorporating the long-running British Household Panel Survey (BHPS). Covering all the regions and nations of the UK, it has an initial sample of 39,802 households at Wave 1. Sample members are followed when they leave a household, and new people join the Study as they become part of existing sample member households.\n\nUnderstanding Society has a number of unique design features. It covers the whole population, with boost samples to ensure it is representative of immigrant and ethnic minority groups, and its large sample enables sub-population groups to be examined. Researchers can use the household context to explore how lives link, and the relationships between family members. Its annual data collection means that changes in people’s lives are more accurately captured over time.\n\nInformation is collected directly from everyone aged over 10 years, with parents providing information on younger children. Understanding Society asks people about things like their home and family, work and school, health and wellbeing, financial situation and their social and political attitudes. The information people share helps us to understand what people think, feel and do. It also helps us see how society is changing over time. The Study covers everyone in a household, from children to adults, so researchers can understand the experiences of the whole family over time. By 2020, nine Waves of Understanding Society data were available, with 27 years of data available for a significant sub-group who were part of BHPS. Information from the Study is used by researchers to investigate how changes in economic, social and health events affect individuals, households and communities. Evidence from the Study is extensively used by government departments, devolved administrations, agencies, charities, and think tanks.'}",ef478925-7612-4cd6-a10e-5e64ee8a0f4d,https://web.www.healthdatagateway.org/dataset/ef478925-7612-4cd6-a10e-5e64ee8a0f4d,"{'access': {'accessRights': ['[https://www.understandingsociety.ac.uk/documentation/access-data]'], 'dataController': 'UK Data Service', 'dataProcessor': 'UK Data Service', 'jurisdiction': ['GB-ENG']}}","{'temporal': {'timeLag': 'VARIABLE', 'startDate': '2001-09-20', 'accrualPeriodicity': 'OTHER'}, 'origin': {'purpose': ['STUDY']}}",2021-12-02T09:45:42Z,"[{'observedNode': 'PERSONS', 'measuredValue': 39802, 'disambiguatingDescription': 'Number of households at recruitment (Wave 1)', 'observationDate': '2009-01-01 00:00:00', 'measuredProperty': 'Count'}]",1.0.0,,2021-12-02T09:45:42Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'SGSS data for QResearch', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '61ba059ac688870b12a4e05b', 'name': 'QResearch'}, 'contactPoint': 'qresearch@phc.ox.ac.uk', 'keywords': ['QResearch', 'SGSS', 'SARS-CoV-2', 'National Core Study', 'NCS'], 'abstract': 'QResearch GP data is linked to Second Generation Surveillance System (SGSS) data contains SARS-CoV-2 testing (swab samples, PCR test method) offered to those in hospital and NHS key workers (i.e. Pillar 1) and includes positive tests results only'}",8a438697-7cdd-4716-8824-8685fa8eb314,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150', 'followup': '6 - 12 MONTHS', 'spatial': ['United Kingdom,England'], 'pathway': 'Data forming the Covid-19 Second Generation Surveillance Systems data set relate to demographic and diagnostic information from Pillar 1 swab testing in PHE labs and NHS hospitals and Pillar 2 Swab testing in the community.'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '45dec1e7-0abb-44de-b259-0cf5f3424912', '2.0.0': 'ef4c90fc-03b6-4b21-a45f-bcd7cabb0857', 'latest': 'ef4c90fc-03b6-4b21-a45f-bcd7cabb0857'}","{'description': 'Second Generation Surveillance System (SGSS) data contains SARS-CoV-2 testing (swab samples, PCR test method) offered to those in hospital and NHS key workers (i.e. Pillar 1) and includes positive tests results only.'}",ef4c90fc-03b6-4b21-a45f-bcd7cabb0857,https://web.www.healthdatagateway.org/dataset/ef4c90fc-03b6-4b21-a45f-bcd7cabb0857,"{'usage': {'resourceCreator': ['NHS Digital'], 'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'investigations': ['https://www.qresearch.org/research/approved-research-programs-and-projects/'], 'dataUseRequirements': ['ETHICS APPROVAL REQUIRED', 'NOT FOR PROFIT USE']}, 'access': {'accessService': 'Remote Desktop to dedicated Windows Server.\n\nStandard Server Spec:\n16GB RAM, 4 Logical Xeon Gold Processors, 200 GB HDD\n\nMax available Server Spec:\n512GB RAM, 72 Logical Xeon Gold Processors, 2TB HDD. Tesla V100 GPU', 'accessRights': ['https://www.qresearch.org/information/information-for-researchers/'], 'jurisdiction': ['GB-ENG'], 'dataProcessor': 'University of Oxford', 'deliveryLeadTime': '1-2 MONTHS', 'dataController': 'University of Oxford', 'accessRequestCost': ['https://www.qresearch.org/information/information-for-researchers/']}, 'formatAndStandards': {'conformsTo': ['NHS DATA DICTIONARY'], 'format': ['CSV', 'TSV', 'Stata', 'SQL Server Database'], 'vocabularyEncodingScheme': ['SNOMED CT'], 'language': ['en']}}","{'origin': {'purpose': ['CARE'], 'collectionSituation': ['COMMUNITY', 'IN-PATIENTS', 'PRIMARY CARE'], 'source': ['EPR']}, 'temporal': {'endDate': '2021-03-31', 'accrualPeriodicity': 'MONTHLY', 'startDate': '1997-04-01', 'timeLag': '1-2 MONTHS'}}",2022-03-17T18:57:01Z,"[{'observationDate': '04/02/2022', 'measuredProperty': 'count', 'observedNode': 'EVENTS', 'measuredValue': '35000000'}]",2.0.0,,2022-06-08T09:50:17Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 4, 'structuralMetadata.columnName': 4, 'structuralMetadata.columnDescription': 4, 'structuralMetadata.dataType': 4, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '82f8fc92-a379-4c4f-819f-9bb04bfaaf59', 'description': 'SARS-CoV-2 test positive', 'name': 'SGSS', 'dataElementsCount': 4, 'dataElements': 'b5ed3567-8291-4847-be63-ff9146d7e85c, 110afc53-d1f6-4660-9a30-20677c1a6a84, 9be8364c-803d-41f7-afe3-b69f188b59a7, 42e16aa7-4e00-4a5e-91fc-2927e4a693d3'}]}"
"{'title': 'Freetext Dataset', 'contactPoint': 'surjeet.janjuha@nhs.net', 'abstract': 'Locally defined dataset which contains information from unstructured data held against a patient record. These include freetext notes in the patient record as well as radiology reports and discharge letters.', 'publisher': {'name': 'BARTS HEALTH', 'memberOf': 'ALLIANCE', 'contactPoint': 'surjeet.janjuha@nhs.net'}}",0f07f939-1265-4e8b-aaa6-d897d254c2f3,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '5166a128-5382-469d-85d4-7384364eb194', '2.0.0': 'ef727724-6c38-483b-b28d-8e94b5a9d7ac', '1.0.0': 'a429e699-4650-4feb-9392-f24aa3a3b7b6', 'latest': 'ef727724-6c38-483b-b28d-8e94b5a9d7ac'}","{'description': None, 'isPartOf': 'N/A'}",ef727724-6c38-483b-b28d-8e94b5a9d7ac,https://web.www.healthdatagateway.org/dataset/ef727724-6c38-483b-b28d-8e94b5a9d7ac,"{'access': {'accessRights': 'Available locally within Trust corporate Data Warehouse System and authorised access by Trust staff only.\nDataset is also available within Discovery.', 'deliveryLeadTime': 'OTHER'}}",,2020-01-13T16:54:42Z,,2.0.0,,2021-02-21T15:18:34Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Mother-Baby Link for CPRD GOLD', 'keywords': ['Mother-baby', 'Primary care'], 'abstract': 'Likely mother-baby pairs, linked using a probabilistic algorithm, based on data recorded in the primary care medical record.', 'contactPoint': 'enquiries@cprd.com', 'publisher': {'name': 'CPRD', 'identifier': '607db9c2e1f9d3704d570cee', 'memberOf': 'ALLIANCE'}}",b734a1b5-37d3-4859-85d4-bf011df2a951,"{'spatial': ['https://www.geonames.org/2635167/united-kingdom.html'], 'typicalAgeRange': '0-49', 'followup': 'OTHER', 'pathway': 'Primary care', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'3.0.0': '1bc9ccd6-44d0-43db-843a-f9fa293c4090', '4.0.0': 'efc0be66-e680-4166-ba58-d507f4c02d88', '2.0.0': 'bdcbbb2b-df99-4ae7-b36e-f266cfe10ed3', '0.0.1': '73982a48-d98e-43dc-a735-34e94098bcb8', '1.0.0': '0fde7981-b03d-4d62-b811-2530bb119480', 'latest': 'efc0be66-e680-4166-ba58-d507f4c02d88'}","{'description': 'CPRD has developed a probabilistic mother-baby link algorithm, based on data recorded in the primary care medical record. 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"{'title': 'GP Out of Hours', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '5f8992a97150a1b050be0712', 'name': 'PUBLIC HEALTH SCOTLAND'}, 'contactPoint': 'phs.edris@phs.scot', 'abstract': 'NHS Boards provide Primary Care OOH services for patients when their registered GP Practice is closed.', 'keywords': ['Out of Hours', 'GP']}",731dc868-3e79-4722-9b79-6bb8dec9435b,"{'spatial': 'https://www.geonames.org/2638360/scotland.html', 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '4a3172de-743a-4a3b-85c9-dda4bd3f6588', '5.0.0': 'f08bfb75-f2b8-4afb-9c3d-59cdd2b6b3ce', '1.0.0': 'cce2c1fb-fb13-4131-a9a4-086b14652cb0', '2.0.0': 'a33d0bb2-afe1-4f26-a8f8-7dffec7b6518', '4.0.0': 'ef3fbf5f-a87c-4f63-8d87-4a5f18fb4301', '3.0.0': '98babf8f-a557-410a-9075-640db283c9a3', 'latest': 'f08bfb75-f2b8-4afb-9c3d-59cdd2b6b3ce'}","{'description': 'NHS Boards provide Primary Care OOH services for patients when their registered GP Practice is closed. Scottish Government commissioned the National Services Scotland now Public Health Scotland to develop and introduce a dataset to collect information on GP Out of Hours patients across Scotland. National data collection began in April 2014. Data on patients seen by GP Out of Hours (OOH) services across Scotland are collected and maintained by PHS in the national data warehouse known as the GP OOH datamart. Data is collected on local IT system (Adastra), then extracted and submitted to the DataMart on a weekly basis.', 'isPartOf': 'Unscheduled Care'}",f08bfb75-f2b8-4afb-9c3d-59cdd2b6b3ce,https://web.www.healthdatagateway.org/dataset/f08bfb75-f2b8-4afb-9c3d-59cdd2b6b3ce,"{'formatAndStandards': {'format': ['text', 'csv'], 'vocabularyEncodingScheme': ['OTHER'], 'conformsTo': ['OTHER'], 'language': ['en']}, 'access': {'dataProcessor': 'National Services Scotland', 'accessRights': ['https://www.informationgovernance.scot.nhs.uk/pbpphsc/', 'https://www.isdscotland.org/Products-and-Services/eDRIS/', 'https://publichealthscotland.scot/contact-us/bespoke-data-analysis-requests/'], 'jurisdiction': ['GB-GBN'], 'dataController': 'National Services Scotland', 'deliveryLeadTime': 'VARIABLE', 'accessRequestCost': ['Research Projects - https://www.isdscotland.org/Products-and-Services/eDRIS/', 'Bespoke data analysis requests - https://publichealthscotland.scot/contact-us/bespoke-data-analysis-requests/'], 'accessService': 'Scottish National Data Safe Haven - https://www.isdscotland.org/Products-and-Services/eDRIS/'}, 'usage': {'resourceCreator': ['National Services Scotland']}}","{'temporal': {'startDate': '2014-04-01', 'accrualPeriodicity': 'MONTHLY', 'timeLag': '1-2 MONTHS', 'distributionReleaseDate': '2020-09-01'}}",2020-01-10T22:06:55Z,"[{'observedNode': 'EVENTS', 'measuredValue': '7996758', 'disambiguatingDescription': 'Consultations', 'observationDate': '20/01/2021', 'measuredProperty': 'Count'}]",5.0.0,"{'qualifiedRelation': ['Data from GP OOH DataMart is routinely linked to the Unscheduled Care DataMart (UCD) which also links data from NHS24', 'SAS', 'A&E', 'Emergency Hospital Admissions etc.']}",2021-10-29T09:15:18Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 6, 'structuralMetadata.tableName': 6, 'structuralMetadata.tableDescription': 6, 'structuralMetadata.dataElementsCount': 54, 'structuralMetadata.columnName': 54, 'structuralMetadata.columnDescription': 54, 'structuralMetadata.dataType': 54, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '2cb9aae0-4cf4-470e-80c0-5bcead6d1ea6', 'description': 'The file will be at case level, i.e. a record will include data associated with a patient’s single \nencounter (service contact) with the OoH service. A patient can have multiple submissions\nin a file', 'name': 'MASTER FILE', 'dataElementsCount': 29, 'dataElements': '05745f88-8813-47a1-8b11-fc70e621e464, 5af9c1bd-2188-4b9e-a8dc-e6880e33f5c4, 8a7b9599-90ef-449b-b109-b7ccc1511eef, f8584f14-f4d0-4581-9823-79c26ff834d3, 9c38a84c-eb47-4381-a467-e1c75254db57, b52b0723-20d7-481e-b1d6-cedd116691cf, 84763ef1-277b-40f9-8d65-5b40bd065e85, 80770ae4-041f-4cd6-b0a3-e6f3c1707a8f, 6e51b8cb-5fd9-4df8-8a34-6f5fa42b34b6, 150747bf-877e-42b5-9912-2bc25638e534, 3a007a34-1be2-4065-ae52-f8df1b3afea7, f820663b-f2a4-476d-882e-48c9c85c00b2, 8dc30ccb-b342-424f-8b31-5616bea4d5e3, 94aaddcc-5cf5-4a4c-b16c-8283056bb7fe, 1920bee5-b8e1-4b13-91e0-d8b93398ce03, dedb767c-6d3a-4ef5-bafc-007b678a9c2d, 4a7d36a7-2c06-4d60-a95b-763e9aaae218, fce7f6e6-cee0-4293-95c3-3b4c994b8688, 762c9449-4157-4997-a311-823f9fdb8067, 5a9da779-1941-435c-88d1-aa3bf2d84c0c, aaae1685-5c1d-4b54-b2a6-9a6ae39b2e5c, 1f2e70c3-ae55-4eb3-a207-99c4de88f8de, cdd29d10-ae8e-430a-965f-f9bd6551b54b, 79bce639-421e-4cc0-a4b3-3d98d0966965, 216fc666-f685-4849-895a-093484a2ac1b, 9b8a11c6-068a-4a64-ac0c-024053c047b6, 36b43a04-9134-4876-82d5-82dd460912d6, f784d62a-cf9f-4a2a-a311-6d3bf23db09d, 2a14b494-ec93-410f-85e8-46c9a9f13116'}, {'id': 'c4e2c751-f6e1-45c6-8487-2e1c7c919f5e', 'description': 'The file contains the appointments made for the case.\nThere may be multiple appointment records for a single case.', 'name': 'APPOINTMENT FILE', 'dataElementsCount': 4, 'dataElements': 'e94d20d9-f802-4b90-bed2-f2de6776b59c, aea431ba-d62e-4ef2-a239-f6f1e61f07f5, fdbdc488-9810-4032-8b2b-748ad4ffacba, dbdbb888-2d5d-4746-88e6-42696cef8727'}, {'id': 'd4ebea62-3fb1-413a-8ce1-f9340e5726c5', 'description': 'The file contains the outcome of the case.\nThere may be multiple outcome records for a single case.', 'name': 'OUTCOME FILE', 'dataElementsCount': 2, 'dataElements': 'cf7e389e-e5c8-47c3-a3c3-aacb21c67413, c5d47897-1834-40bb-911d-f02fad0b4c89'}, {'id': '332c9d35-b81d-4953-8c53-c94c9d4c93a4', 'description': 'The file contains the consultations for the case.\nThere may be multiple consultation records for a single case.', 'name': 'CONSULTATION FILE', 'dataElementsCount': 11, 'dataElements': '51dbec69-a145-4158-b440-57c76b797dc5, 220a4be6-1f8f-440c-bb01-12c496f17979, 57232ab1-e9de-4312-8b6f-68ffd135e47a, 1461fe39-c902-4ed7-8244-3acd912f3cee, 63d032a8-09c1-4566-a380-24d1ce470027, 30522f3e-6e2d-4ea8-a584-412b04203d9f, 9de836ad-36dd-43c6-813b-897dd0de5aff, 1c199b06-f5e6-49f5-8ec8-b09e215578ee, 326e6c05-19c0-4009-bdbd-464f11db2b9a, 69a216bf-9533-448c-a617-5b4a0a5fa7ef, 4827929e-1d5a-47d3-a3d7-28330c7f6889'}, {'id': '564825df-9228-4d3a-97b9-636aa3f2ef76', 'description': 'The file contains the diagnosis for the case.\nThere may be multiple diagnosis records for a single case.', 'name': 'DIAGNOSIS FILE', 'dataElementsCount': 3, 'dataElements': '3db60674-7ffc-42b2-b2b2-04ce20f24445, 8b09baf8-1cc7-4ce3-a0f5-1f569d7e5b12, 7f33d2a5-41cc-4b56-81d6-a54ccd2c7125'}, {'id': '7b57cabf-ef2a-4cba-b1ee-62e79342eef7', 'description': 'The file contains the prescriptions made for the case.\nThere may be multiple prescription records for a single case and multiple records for a single drug prescribed', 'name': 'PRESCRIPTION FILE', 'dataElementsCount': 5, 'dataElements': 'd2824bc3-b6a5-42e8-b162-1eea98a52010, e9ae5306-e806-4737-b1fe-ebc97411b4a6, 2ad2860b-90da-45ce-b0d4-981be3020279, ac76a791-0ed3-4cdf-8af8-5386702d7c40, 39081b59-116a-4c7f-ae95-82ad9b579f0b'}]}"
"{'title': 'Welsh Health Survey Dataset', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'SAIL', 'contactPoint': 'SAILDatabank@swansea.ac.uk'}, 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'abstract': 'The survey provides information about the health and health-related lifestyle of people living in Wales.', 'keywords': ['health', 'survey', ' SAIL'], 'doiName': 'In Progress'}",e4d8edb3-6e8e-435d-9732-60c83027d8f9,"{'typicalAgeRange': '18-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'OTHER', 'pathway': 'Not Available', 'spatial': 'Wales'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': 'aba9724c-a1fc-42f2-a8dd-15a5f5a20cd5', '2.0.0': 'f0fc13b4-f801-4647-82f3-07ed07f26ea0', '0.0.1': '966357a6-304c-4005-a3a5-7aab48592da5', 'latest': 'f0fc13b4-f801-4647-82f3-07ed07f26ea0'}","{'description': 'The survey provides information about the health and health-related lifestyle of people living in Wales.. Please Note: The Welsh Health Survey ceased in 2015. From April 2016 health and health related lifestyles are reported on using the National Survey for Wales.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://saildatabank.com/about-us/overview/']}",f0fc13b4-f801-4647-82f3-07ed07f26ea0,https://web.www.healthdatagateway.org/dataset/f0fc13b4-f801-4647-82f3-07ed07f26ea0,"{'formatAndStandards': {'conformsTo': 'OTHER', 'format': ['SQL database table'], 'vocabularyEncodingScheme': 'NHS WALES NATIONAL CODES', 'language': 'en'}, 'access': {'dataController': 'NHS Wales’ Informatics Service (NWIS)', 'accessRequestCost': 'Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.', 'accessRights': ['https://saildatabank.com/application-process/'], 'jurisdiction': 'GB', 'deliveryLeadTime': '2-6 MONTHS', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'dataProcessor': 'SAIL Databank'}, 'usage': {'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'resourceCreator': 'Welsh Government', 'isReferencedBy': ['Beynon, C., & Fone, D. (2017). Risk factors for childhood obesity: a data analysis of the Welsh Health Survey.\xa0Nursing children and young people,\xa029(6). 10.7748/ncyp.2017.e855 '], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'RESEARCH SPECIFIC RESTRICTIONS'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'USER SPECIFIC RESTRICTION']}}","{'origin': {'source': 'ELECTRONIC SURVEY', 'collectionSituation': 'OTHER', 'purpose': ['STUDY', 'ADMINISTRATIVE']}, 'temporal': {'startDate': '2015-11-27', 'distributionReleaseDate': '2015-12-11', 'endDate': '2015-12-11', 'accrualPeriodicity': 'ANNUAL', 'timeLag': '2-4 WEEKS'}}",2021-02-08T15:54:08Z,,2.0.0,"{'qualifiedRelation': ['Yes. To any SAIL dataset & reference data.'], 'derivation': ['Not Available'], 'tools': ['https://conceptlibrary.saildatabank.com/']}",2021-02-08T16:08:57Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 6, 'structuralMetadata.tableName': 6, 'structuralMetadata.tableDescription': 6, 'structuralMetadata.dataElementsCount': 1349, 'structuralMetadata.columnName': 1349, 'structuralMetadata.columnDescription': 1349, 'structuralMetadata.dataType': 1349, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '090853f8-7cc6-4e43-bd9f-9e9834cc62f9', 'description': 'Welsh Health Survey 2011 person table', 'name': 'WHS_ALF_2011', 'dataElementsCount': 9, 'dataElements': '31105cb6-8809-4c93-9038-33f4c4241d37, 4034009b-cc8a-45c4-8d0c-d3c4e2a47b7b, d641d7f2-c7e9-4fcb-918b-62e40d46b7fb, c8bba7a3-807a-4513-bfa2-cf3455654743, c88d5bc3-c14d-4339-95f9-d2b58902a7cc, fb8f190f-bc70-4861-a762-7c05856770cc, feb247fd-88a0-4f1e-856c-3f28c472025f, 4744a0d4-9802-45de-8a2f-e108481aaf8f, 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"{'title': 'Welsh Results Reports Service (WRRS)', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'keywords': ['Blood Results', 'WRRS', 'core'], 'publisher': {'identifier': '5f3f98068af2ef61552e1d75', 'name': 'SAIL', 'memberOf': 'ALLIANCE'}, 'abstract': 'The Welsh Results Reports Service, gives clinicians blood results for patients, no matter where they had their blood taken. So rather than travelling to have blood tests, patients can go to mobile units, or local centres, and clinicians can see results.'}",71d37610-ac55-432d-82a3-bdb04407acd8,"{'physicalSampleAvailability': ['WHOLE BLOOD'], 'followup': 'UNKNOWN', 'pathway': 'Blood results', 'typicalAgeRange': '0-150', 'spatial': 'https://www.geonames.org/2634895/wales.html'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'a5bd43e6-c364-4bee-b529-a75ed97adf4d', '5.0.0': 'f13d5f5a-08b3-49be-8d5e-48772a612cb0', '1.0.0': '2d69c958-53d5-4841-ae76-4c6aae079d6e', '2.0.0': '7fd662bc-eade-4df4-a3a7-94501ccfd7b1', '3.0.0': 'f298cb2a-20bb-4607-933e-6951942ae6d7', '4.0.0': '7d6ec229-dbde-4e4e-91de-6b7d8111d02e', 'latest': 'f13d5f5a-08b3-49be-8d5e-48772a612cb0'}","{'description': 'The Welsh Results Reports Service, gives clinicians blood results for patients, no matter where they had their blood taken. 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"{'title': 'Assessing acuity scores – NEWS2 in acute illnesses with component markers', 'abstract': 'Hospital patient acuity scores from 2018 onwards. Granular condition, ethnicity, multi-morbidity. Deeply phenotyped. Serial physiology, blood biomarkers, interventions, longitudinal, pre/post admission healthcare use.', 'contactPoint': 'PIONEER@UHB.NHS.UK', 'keywords': ['Acute Care', 'national early warning score', 'Critical Care', 'physiology', 'blood biomarkers', 'risk prediction', 'vital signs', 'heart rate', 'blood pressure', 'respiratory rate', 'acute illness'], 'publisher': {'identifier': '607db9c5e1f9d3704d570d5f', 'name': 'PIONEER', 'memberOf': 'HUB'}}",bc6a661a-4447-40ad-bc92-3007e89688c9,"{'followup': '1 - 10 YEARS', 'typicalAgeRange': '20-95', 'pathway': 'Data is representative of the multi-ethnicity population within the West Midlands (42% non white). Data includes all patients admitted during this timeframe, with National data Opt Outs applied, and therefore is representative of admissions to secondary care. Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.', 'spatial': ['United Kingdom,England,West Midlands'], 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'f14341fe-2f15-48a7-bcd6-3c4d298375d1'},"{'description': 'Background\n\nEarly warning systems (EWS) are bedside tools used to assess basic physiological parameters to identify patients with potential or established critical illness. Evidence suggests that they may predict risk of intensive care admission, death and length of hospital stay. In 2017, the Royal College of Physicians (RCP) published an updated National Early Warning Score, referred to as NEWS2, based upon six physiological parameters (heart rate, blood pressure, respiratory rate, peripheral oxygen saturations, temperature and level of consciousness). It is associated with specific clinical response recommendations in which a step change occurs at a threshold NEWS2 score >5, requiring an urgent clinical response no matter what the presenting complaint or condition. \n\nPIONEER geography: The West Midlands (WM) has a population of 5.9 million and includes a diverse ethnic and socio-economic mix. \n\nEHR. UHB is one of the largest NHS Trusts in England, providing direct acute services and specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds and an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary and secondary care record (Your Care Connected) and a patient portal “My Health”. \n\nScope: Serial NEWS2 scores of acutely unwell patients recorded during their hospital stay with each individual component of NEWS2 reported. Longitudinal and individually linked, so that the preceding and subsequent health journey can be mapped and healthcare utilisation prior to and after admission understood. The dataset includes highly granular patient demographics, co-morbidities taken from ICD-10 and SNOMED-CT codes. Serial, structured data pertaining to process of care (timings, admissions), presenting complaint, physiology readings (e.g. heart rate, blood pressure, respiratory rate, NEWS2 score and oxygen saturations), Lab analysis results (Alanine Transferase, albumin, Hb, Creatine Kinase, White Blood Cells and others), microbiology results, medications and all outcomes.   \n\nAvailable supplementary data: Matched controls; ambulance, OMOP data, synthetic data. \n\nAvailable supplementary support: Analytics, Model build, validation and refinement; A.I.; Data partner support for ETL (extract, transform and load) process, Clinical expertise, Patient and end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.'}",f14341fe-2f15-48a7-bcd6-3c4d298375d1,https://web.www.healthdatagateway.org/dataset/f14341fe-2f15-48a7-bcd6-3c4d298375d1,"{'access': {'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'dataProcessor': 'NOT APPLICABLE', 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/'], 'jurisdiction': ['GB-ENG'], 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'deliveryLeadTime': '1-2 MONTHS'}, 'formatAndStandards': {'language': ['en'], 'conformsTo': ['LOCAL'], 'format': ['SQL'], 'vocabularyEncodingScheme': ['SNOMED CT', 'ICD10']}, 'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)']}}","{'temporal': {'distributionReleaseDate': '2022-04-08', 'endDate': '2022-02-01', 'startDate': '2018-01-01', 'accrualPeriodicity': 'QUARTERLY', 'timeLag': 'OTHER'}, 'origin': {'source': ['EPR'], 'collectionSituation': ['ACCIDENT AND 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"{'title': 'Problems, Diagnosis and Procedures', 'publisher': {'name': 'BARTS HEALTH', 'memberOf': 'ALLIANCE', 'contactPoint': 'surjeet.janjuha@nhs.net'}, 'abstract': 'Locally defined dataset which contains SNOMED recorded terms for patient Problems, Diagnosis and Procedures', 'contactPoint': 'surjeet.janjuha@nhs.net'}",51b41359-1558-48df-9950-88f75ca6ac4c,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'e67ee5fd-ecbd-4401-94d4-bf4e35fb29ac', '2.0.0': 'f2b4211b-1af7-46ff-82a3-35b29d1d478e', '1.0.0': '3cd53c68-7e56-4c3e-b7c2-bd7e18040ec5', 'latest': 'f2b4211b-1af7-46ff-82a3-35b29d1d478e'}","{'description': None, 'isPartOf': 'N/A'}",f2b4211b-1af7-46ff-82a3-35b29d1d478e,https://web.www.healthdatagateway.org/dataset/f2b4211b-1af7-46ff-82a3-35b29d1d478e,"{'access': {'accessRights': 'Available locally within Trust corporate Data Warehouse System and authorised access by Trust staff only.\nDataset is also available within Discovery.', 'deliveryLeadTime': 'OTHER'}}",,2020-01-13T16:54:42Z,,2.0.0,,2021-02-21T15:18:32Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Emergency Department Dataset (EDDS)', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '5f3f98068af2ef61552e1d75', 'name': 'SAIL'}, 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'keywords': ['Emergency', 'A&E', 'SAIL', 'NCS', 'National Core Study', 'COVID-19', 'core', 'EDDS'], 'abstract': 'Attendance and clinical information for all Accident and Emergency attendances.'}",75c4dcb8-33bf-43f4-b2bb-db51b6621b2c,"{'spatial': ['https://saildatabank.com/about-us/overview/'], 'pathway': 'Secondary care', 'followup': 'OTHER', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'7.0.0': '01ffc430-82fe-4213-9713-c76c2cd66078', '9.0.0': 'f2c2ea2f-f5e8-4297-8510-c2d430ff0946', '8.0.0': '2e51fba7-c119-4892-9e4e-89748bcb96eb', 'latest': 'f2c2ea2f-f5e8-4297-8510-c2d430ff0946'}","{'description': 'Administrative and clinical information for all NHS Wales Accident and Emergency department attendances. Includes the All Wales Injury Surveillance Systems (AWISS) dataset.\n\nData recording practices may vary, especially in some of the minor A&E and Minor Injury Units which could account for some local differences.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', '', 'https://saildatabank.com/'], 'isPartOf': 'NOT APPLICABLE'}",f2c2ea2f-f5e8-4297-8510-c2d430ff0946,https://web.www.healthdatagateway.org/dataset/f2c2ea2f-f5e8-4297-8510-c2d430ff0946,"{'formatAndStandards': {'language': ['en'], 'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['LOCAL'], 'format': ['SQL database table']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'resourceCreator': ['DHCW'], 'isReferencedBy': ['Griffiths et al., (2019); Are active children and young people at increased risk of injuries resulting in hospital admission or accident and emergency department attendance? Analysis of linked cohort and electronic hospital records in Wales and Scotland. https://doi.org/10.1371/journal.pone.0213435']}, 'access': {'accessRights': ['https://saildatabank.com/application-process/'], 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'deliveryLeadTime': '2-6 MONTHS', 'jurisdiction': ['GB'], 'dataProcessor': 'SAIL Databank', 'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'dataController': 'SAIL Databank'}}","{'temporal': {'distributionReleaseDate': '2019-09-13', 'startDate': '2004-09-20', 'timeLag': 'LESS 1 WEEK', 'endDate': '2021-05-31', 'accrualPeriodicity': 'MONTHLY'}, 'origin': {'purpose': ['STUDY', 'CARE', 'AUDIT', 'ADMINISTRATIVE', 'FINANCIAL'], 'source': ['EPR'], 'collectionSituation': ['ACCIDENT AND EMERGENCY']}}",2021-09-13T14:51:11Z,"[{'observedNode': 'EVENTS', 'measuredValue': '3000000', 'observationDate': '01/09/2021', 'measuredProperty': 'Count'}]",9.0.0,"{'qualifiedRelation': ['Yes. 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"{'title': 'Identification of Medical Admissions suitable for Same Day Emergency Care (SDEC)', 'publisher': {'identifier': '607db9c5e1f9d3704d570d5f', 'name': 'PIONEER', 'memberOf': 'HUB'}, 'abstract': 'Acute patient data (2004 onwards) for patients with unplanned medical admission who receive Same Day Emergency Care. Granular condition, presenting complaint, acuity, ethnicity, multi-morbidity. Serial physiology , blood biomarkers, treatments.', 'keywords': ['acute care', 'Same Day Emergency Care', 'SDEC', 'Ambulatory Emergency Care', 'care pathways', 'admissions', 'avoid admissions', 'Acute Medicine', 'Acute Medical Unit', 'multi-morbidity', 'ICD-10', 'SNOMED-CT', 'Ethnicity', 'adults', 'Children', 'acuity', 'Medications', 'physiology', 'Blood tests', 'Laboratory results', 'Hospital Ward', ' Medical imaging', 'Outcomes', 'Place of discharge', 'Mortality'], 'contactPoint': 'PIONEER@UHB.NHS.UK'}",7af96f17-5ab6-4275-b8ef-61a3e053d342,"{'followup': 'OTHER', 'pathway': 'Data is representative of the multi-ethnicity population within the West Midlands (42% non white). Data includes all patients admitted during this timeframe, with National data Opt Outs applied, and therefore is representative of admissions to secondary care.  Data focuses on in-patient stay in hospital during the acute episode, but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'https://www.geonames.org/2634343/west-midlands.html', 'typicalAgeRange': '16-110'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '67cd4bfc-5542-4f66-ae44-e06506ade057', '2.0.0': 'f3957e36-25eb-4e0a-a69a-a1c0ce85cb4f', 'latest': 'f3957e36-25eb-4e0a-a69a-a1c0ce85cb4f'}","{'description': 'Emergency hospital admissions in the UK have been rising steadily. Medical emergencies account for the largest proportion of unplanned admissions.  Same Day Emergency Care (SDEC) is one of many ways the NHS are working to provide the right care, in the right place and at the right time.  The national SDEC model builds on the previous work undertaken in ambulatory emergency care (AEC) services across the NHS , which was aimed at providing a consistent approach to patient pathways. \n\nA proportion of medical admissions are suitable for SDEC, where they are assessed and treated, but do not require overnight admission to an inpatient bed. This is beneficial for patients, as hospital admission and its associated risks can be avoided. As inpatient admissions increase, it is also important to consider alternative methods of care to reduce pressure on inpatient services. SDEC is highlighted in the NHS Long Term Plan, recommending a third of patients in acute services should receive SDEC.\n\nThe number of medical patients receiving SDEC varies between centres. This may relate to local patient populations, but also local availability of services. SDEC is often delivered through Ambulatory Emergency Care, as well as the Acute Medical Unit, and multiple additional services can aid delivery, including hospital at home services, and early outpatient review in specialist clinics. These services vary between hospitals.\n\nPIONEER geography\nThe West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix. \n\nEHR. UHB is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.\n\nScope: All patients admitted with unplanned medical admissions who receive Same Day Emergency Care from 2004 onwards. The dataset includes highly granular patient demographics & co-morbidities taken from ICD-10 & SNOMED-CT codes. Serial, structured data pertaining to acute care process (timings, staff grades, specialty review, wards), presenting complaint, acuity, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations), all blood results, imaging reports, all prescribed & administered treatments (fluids, blood products, procedures), all outcomes.\n\nAvailable supplementary data: Matched controls; ambulance, synthetic data.\n\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://www.pioneerdatahub.co.uk/wp-content/uploads/SDEC-V3-Infographic-page-001.jpg']}",f3957e36-25eb-4e0a-a69a-a1c0ce85cb4f,https://web.www.healthdatagateway.org/dataset/f3957e36-25eb-4e0a-a69a-a1c0ce85cb4f,"{'formatAndStandards': {'vocabularyEncodingScheme': ['SNOMED CT', 'ICD10'], 'format': ['SQL'], 'language': ['en'], 'conformsTo': ['LOCAL']}, 'access': {'dataProcessor': 'NOT APPLICABLE', 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/'], 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'deliveryLeadTime': '1-2 MONTHS', 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'jurisdiction': ['GB-ENG']}, 'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)'], 'isReferencedBy': ['NOT APPLICABLE'], 'investigations': ['']}}","{'origin': {'source': ['EPR'], 'collectionSituation': ['ACCIDENT AND EMERGENCY', 'IN-PATIENTS', 'OUTPATIENTS'], 'purpose': ['CARE']}, 'temporal': {'accrualPeriodicity': 'QUARTERLY', 'startDate': '2019-04-01', 'distributionReleaseDate': '2021-05-17', 'endDate': '2020-09-30', 'timeLag': 'OTHER'}}",2021-12-20T12:47:29Z,"[{'observedNode': 'EVENTS', 'measuredValue': '141921', 'observationDate': '17/05/2021', 'measuredProperty': 'Count', 'disambiguatingDescription': '141,921 same day emergency 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"{'title': 'Capture-24: Activity tracker dataset for human activity recognition', 'publisher': {'name': 'Oxford Research Archive', 'memberOf': 'OTHER', 'identifier': '61c0b0afc847cf2684f2f7e9'}, 'doiName': '10.5287/bodleian:NGx0JOMP5', 'abstract': 'This dataset contains wrist-worn activity tracker data collected from 151 participants for a period of roughly 24hs in natural settings, annotated using wearable cameras and sleep diaries.', 'contactPoint': 'aiden.doherty@ndph.ox.ac.uk', 'keywords': ['wearable technology', 'human activity recognition', 'activity trackers', 'accelerometers', 'fitness trackers', 'machine learning']}",5713fd1a-4358-4485-bed5-83fb25ec2fce,"{'typicalAgeRange': '18-91', 'pathway': 'N/A', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': '0 - 6 MONTHS', 'spatial': ['https://www.geonames.org/2640726/oxfordshire.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'f3f24eff-a21b-45e4-92a2-71c162426f53'},"{'description': 'This dataset contains Axivity AX3 wrist-worn activity tracker data that were collected from 151 participants in 2014-2016 around the Oxfordshire area. 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Scientific Reports. 8(1):7961. Regarding Data Protection, the Clinical Data Set will not include any direct subject identifiers. However, it is possible that the Data Set may contain certain information that could be used in combination with other information to identify a specific individual, such as a combination of activities specific to that individual (""Personal Data""). Accordingly, in the conduct of the Analysis, users will comply with all applicable laws and regulations relating to information privacy. 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"{'title': 'ONS Death Registration data for QResearch', 'publisher': {'identifier': '61ba059ac688870b12a4e05b', 'memberOf': 'ALLIANCE', 'name': 'QResearch'}, 'keywords': ['Hospital', 'Critical Care', 'QResearch', 'National Core Study', 'NCS'], 'contactPoint': 'qresearch@phc.ox.ac.uk', 'abstract': 'Linked Death Registration data from the Office for National Statistics (ONS) include information on the official date and causes of death using ICD-10 codes.'}",0d9db5af-972a-4597-ae5b-f9c2fdeddeff,"{'spatial': ['United Kingdom,England'], 'followup': '> 10 YEARS', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'This dataset is representative of England and includes all patients registered on the ONS registry and so is complete', 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '23efbd30-fba7-4fa3-bd37-97f1abd398d3', '2.0.0': 'f563f791-c2e4-426b-97be-a91ea82c4e40', 'latest': 'f563f791-c2e4-426b-97be-a91ea82c4e40'}",{'description': 'Linked Death Registration data from the Office for National Statistics (ONS) include information on the official date and causes of death.'},f563f791-c2e4-426b-97be-a91ea82c4e40,https://web.www.healthdatagateway.org/dataset/f563f791-c2e4-426b-97be-a91ea82c4e40,"{'access': {'accessService': 'Remote Desktop to dedicated Windows Server.\n\nStandard Server Spec:\n16GB RAM, 4 Logical Xeon Gold Processors, 200 GB HDD\n\nMax available Server Spec:\n512GB RAM, 72 Logical Xeon Gold Processors, 2TB HDD. Tesla V100 GPU', 'accessRights': ['https://www.qresearch.org/information/information-for-researchers/'], 'accessRequestCost': ['https://www.qresearch.org/information/information-for-researchers/'], 'deliveryLeadTime': '1-2 MONTHS', 'dataProcessor': 'University of Oxford', 'jurisdiction': ['GB-ENG'], 'dataController': 'University of Oxford'}, 'formatAndStandards': {'language': ['en'], 'format': ['CSV', 'TSV', 'Stata', 'SQL Server Database'], 'conformsTo': ['NHS DATA DICTIONARY'], 'vocabularyEncodingScheme': ['ICD10']}, 'usage': {'dataUseRequirements': ['ETHICS APPROVAL REQUIRED'], 'resourceCreator': ['Office of National Statistics/NHS digital'], 'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'investigations': ['https://www.qresearch.org/research/approved-research-programs-and-projects/']}}","{'origin': {'purpose': ['ADMINISTRATIVE'], 'collectionSituation': ['OTHER'], 'source': ['EPR', 'OTHER INFORMATION SYSTEM']}, 'temporal': {'timeLag': '2-4 WEEKS', 'accrualPeriodicity': 'MONTHLY', 'endDate': '2021-03-31', 'startDate': '1997-04-01', 'distributionReleaseDate': '2022-03-01'}}",2022-03-17T18:55:04Z,"[{'measuredValue': '1158177', 'observedNode': 'PERSONS', 'disambiguatingDescription': 'Number of patients matched to single death identifier', 'observationDate': '17/03/2022', 'measuredProperty': 'count'}]",2.0.0,{'tools': ['https://www.qresearch.org/qcode-group-library/']},2022-06-08T09:49:41Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 2, 'structuralMetadata.tableName': 2, 'structuralMetadata.tableDescription': 2, 'structuralMetadata.dataElementsCount': 28, 'structuralMetadata.columnName': 28, 'structuralMetadata.columnDescription': 28, 'structuralMetadata.dataType': 28, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '00087aac-83fe-4288-afa2-7081cd7b7784', 'description': 'ONS Death Data', 'name': 'ONSDeaths', 'dataElementsCount': 27, 'dataElements': '83406b1b-0027-4b6b-a773-865a83457800, 1d8622fb-9f5a-4baa-87d4-ef47da53919c, b7ba7e39-7005-4d0e-ace7-136dff340cf6, 16ec75d8-683a-4a3e-bca4-c00e7099e946, 5a9bfd1d-49f8-4875-baae-152f0ccc30d4, 20f02925-c89f-4233-aeee-735401cd2f9f, bb9de03a-a557-438e-846c-ac2254855971, 180eb6b6-0a91-4873-97d1-897e7f5e361a, b074d98e-1851-4d2d-9368-d46aeb9d2290, 325ccb40-972e-4463-a264-9d857efbe820, c67a69d2-9b79-465c-bc42-f90f6da919fe, e7cb0387-629a-410c-b43c-26c44774a0a0, a96e5cb0-3f9b-4ccc-a694-f06f0a6d725c, 34d70619-38a3-4d11-af75-80b15ee64bad, 7f6f8e3a-fbbe-48af-abfd-db0fe025abd2, f013b60c-7bcc-42f6-9e4f-37c3831534a7, e1cde9e5-62f5-4a85-b5dd-5fafb1922f2f, 1cc5e331-b1e1-45fe-8dce-32e1f684a1a3, 420a1b42-af3f-4ae3-86cd-00b652ad4918, 32dd088c-2767-4444-86d5-27e850c3f0b6, fe4c7d2a-90bb-417d-8474-cb950c9e23cd, ce396728-ede3-4a87-8235-1d2f38f05b7f, 012a8dfc-c34c-49af-8bc6-3a4c0e6957bc, 0ab199db-ae4b-42dc-af94-11de97ceee6b, 66a60caa-669b-44f6-8dba-e6561b76c183, ba4c07ca-1b58-44f2-b70f-20e6f89bda96, 1f7b2221-8c1a-4213-8f99-464e2cf7cfc0'}, {'id': '8abaa0b1-7299-4974-8a8a-667242f80141', 'description': 'ONS Death Data - Extra Fields', 'name': 'ONSDeaths_extra', 'dataElementsCount': 1, 'dataElements': 'f5ad54e0-24b9-4332-88e3-f7919ab9f836'}]}"
"{'title': 'UHB Linked Diabetic Eye Disease and Cardiac Outcomes', 'publisher': {'name': 'INSIGHT', 'identifier': '5f8437a3b7dec2a83e8cceba', 'memberOf': 'HUB'}, 'contactPoint': 'enquiries@insight.hdrhub.org', 'abstract': 'Vision and systemic cardiac outcome data for those identified by having a diabetic screening eye test and an acute episode at Queen Elizabeth Hospital, Birmingham. Key data include demographics, longitudinal cardiac outcomes, visual data, and eye grades.', 'keywords': ['Background Diabetic Retinopathy', 'Digital Surveillance', 'Clinically Significant Macular Oedema', 'Diabetic Retinopathy', 'Diabetic Maculopathy', 'Diabetes Mellitus Type 1', 'Diabetes Mellitus Type 2', 'National Screening Grading', 'Gestational Diabetes', 'Haemorrhage', 'Hospital Eye Service', 'Images', 'Microaneurysm', 'Non-Proliferative Diabetic Retinopathy', 'New Vessels', 'Proliferative Diabetic Retinopathy', 'Optical Coherence Tomography', 'Pregnancy', 'Retina', 'Referral', 'Screening', 'Screening Programme', 'Vision', 'Visual Acuity', 'Blood Glucose', 'Fasting Blood Glucose', 'Dialysis', 'Haemoglobin A1c', 'Glycated Haemoglobin Test', 'Insulin Resistance', 'Macrovascular Compilations', 'Microvascular Complications', 'Pre-Diabetes', 'Autoimmune Disease', 'Hospitalised', 'Urgent Care', 'Acute Care', 'Emergency', 'Surgery', 'Procedures', 'Outcomes', 'Discharge', 'Death', 'Secondary Care', 'Tertiary Care', 'Diabetic Angiopathy', 'Hypercholesterolemia', 'Hyperlipidemia', 'Lipoprotein Deficiency', 'Metabolic Syndrome', 'Hypertensive Diseases', 'Diseases Of The Circulatory System', 'Major Adverse Cardiac Events', 'MACE', 'Acute Rheumatic Fever', 'Chronic Rheumatic Heart Diseases', 'Hypertensive Diseases', 'Hypertension', 'Ischemic Heart Diseases', 'Pulmonary Heart Disease And Diseases Of Pulmonary Circulation', 'Cerebrovascular Diseases', 'Diseases Of Arteries', 'Arterioles And Capillaries', 'Angina Pectoris', 'Acute Myocardial Infarction', 'Subsequent ST Elevation', 'STEMI', 'Non-ST Elevation', 'NSTEMI', 'Myocardial Infarction', 'Acute Ischemic Heart Diseases', 'Chronic Ischemic Heart Disease']}",4385ed4c-1c42-4ba5-b57f-9ab18e5ffbe1,"{'followup': '> 10 YEARS', 'typicalAgeRange': '12-110', 'spatial': ['https://www.geonames.org/11591953/west-midlands.html'], 'pathway': 'This dataset is representative of the patient pathway for community screening of diabetic eye\xa0disease and grading.\xa0 This DES dataset is linked within this dataset to include those patients who\xa0were then subsequently admitted to the Queen Elizabeth Hospital, University\xa0Hospitals Birmingham\xa0NHS Trust for cardiac conditions.\xa0 This limits the dataset to only those patients who have been seen both in screening and then subsequently in the hospital for heart disease. \xa0', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'f58a3c47-44aa-4815-aeab-e19a4a330926'},"{'description': 'www.insight.hdrhub.org/about-us \n\nBackground:\nDiabetes mellitus affects over 3.9 million people in the United Kingdom (UK), with over 2.6 million people in England alone. More than 1 million people living with diabetes are acutely admitted to hospital due to complications of their illness every year. Cardiovascuar disease is the most prevalent cause of morbidity and mortality in people with diabetes. Diabetic retinopathy (DR) is a common microvascular complication of type 1 and type 2 diabetes and remains a major cause of vision loss and blindness in those of working age. This dataset includes the national screening diabetic grade category (seven categories from R0M0 to R3M1) from the Birmingham, Solihull and Black Country DR screening program (a member of the National Health Service (NHS) Diabetic Eye Screening Programme) and the University Hospitals Birmingham NHS Trust cardiac outcome data.  \n\nGeography:\nThe West Midlands has a population of 5.9 million. The region includes a diverse ethnic, and socio-economic mix, with a higher than UK average of minority ethnic groups. It has a large number of elderly residents but is the youngest population in the UK. There are particularly high rates of diabetes, physical inactivity, obesity, and smoking.\n\nData sources:  \n1. The Birmingham, Solihull and Black Country Data Set, University Hospitals Birmingham NHS Foundation Trust, Birmingham, United Kingdom. They manage over 200,000 diabetic patients, with longitudinal follow-up up to 15 years, making this the largest urban diabetic eye screening scheme in Europe. \n2. The Electronic Health Records held at University Hospitals Birmingham NHS Foundation Trust is one of the largest NHS Trusts in England, providing direct acute services and specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds and 100 ITU beds. UHB runs a fully electronic healthcare record for systemic disease.\n\nScope: \nAll Birmingham, Solihull and Black Country diabetic eye screened participants who have been admitted to UHB with a cardiac related health concern from 2006 onwards. Longitudinal and individually linked with their diabetic eye care from primary screening data and secondary care hospital cardiac outcome data including \n• Demographic information (including age, sex and ethnicity)\n• Diabetes status\n• Diabetes type\n• Length of time since diagnosis of diabetes \n• Visual acuity\n• The national screening diabetic screening grade category (seven categories from R0M0 to R3M1)\n• Diabetic eye clinical features\n• Reason for sight and severe sight impairment\n• ICD-10 and SNOMED-CT codes pertaining to cardiac disease\n• Outcome\n\nWebsite: https://www.retinalscreening.co.uk/', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://www.insight.hdrhub.org/about-us']}",f58a3c47-44aa-4815-aeab-e19a4a330926,https://web.www.healthdatagateway.org/dataset/f58a3c47-44aa-4815-aeab-e19a4a330926,"{'usage': {'dataUseLimitation': ['RESEARCH SPECIFIC RESTRICTIONS'], 'resourceCreator': ['University Hospitals Birmingham NHS Foundation Trust'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'isReferencedBy': ['Not Applicable'], 'investigations': ['']}, 'access': {'accessRights': ['https://www.insight.hdrhub.org/'], 'deliveryLeadTime': '2-6 MONTHS', 'jurisdiction': ['GB-ENG', 'GB-GB'], 'dataProcessor': 'NOT APPLICABLE', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'accessService': 'INSIGHT adheres to HDRUK data access principles including the five SAFES; anonymised data is provided into an agreed Trusted Research Environment such as the PIONEER Microsoft Azure TRE at University Hospitals Birmingham NHSFT or equivalent external safe environment, under data license.', 'accessRequestCost': ['https://www.insight.hdrhub.org/']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['NHS NATIONAL CODES'], 'language': ['en'], 'format': ['Images are available in DICOM format containing jpg images. Patient data will be available in a secure environment and is stored in a relational database.', 'SQL', '.jpg image', 'csv'], 'conformsTo': ['LOCAL']}}","{'temporal': {'timeLag': '2-4 WEEKS', 'accrualPeriodicity': 'ANNUAL', 'distributionReleaseDate': '2021-07-31', 'endDate': '2020-12-31', 'startDate': '2005-01-01'}, 'origin': {'collectionSituation': ['OUTPATIENTS', 'IN-PATIENTS', 'CLINIC'], 'source': ['EPR'], 'purpose': ['CARE']}}",2021-10-22T14:38:00Z,"[{'observedNode': 'EVENTS', 'disambiguatingDescription': '64389 patients, 1843659 retinal scan images', 'observationDate': '19/07/2021', 'measuredProperty': 'Count', 'measuredValue': '64389'}]",1.0.0,"{'qualifiedRelation': ['None'], 'derivation': ['Not Available'], 'tools': ['https://www.gov.uk/search/all?keywords=Diabetic+Retinal+Screening+Statistics&order=relevance']}",2021-10-22T14:38:00Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 25, 'structuralMetadata.columnName': 25, 'structuralMetadata.columnDescription': 25, 'structuralMetadata.dataType': 25, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'ea3a4605-604d-4310-b3d0-a38489dc3c98', 'description': 'This table contains the image metadata', 'name': 'images', 'dataElementsCount': 25, 'dataElements': 'e661fcf6-59fc-4497-8484-fa1a021bd52a, 79aa83b0-7360-47d7-a031-dbd450b9faa2, 06ff9fff-b978-46e7-b751-66654b107227, 1ad2f133-5782-4d40-a1db-f9bdba1e44a8, dcdeecef-2174-4cd6-ace1-b5fbb02b3466, b526375d-0ab1-4210-ad94-edb24c3ca83b, c2ba1013-1e93-45ab-a078-a2e27ce2e7a1, 21fafb39-495a-42e9-8c3a-539bfadb5885, 60cb8c9e-1fa5-4812-92ae-a4b46dcc11d3, 1e2cc364-f68b-41b3-9ca2-5a8aeae5988e, d3dbe285-3066-42bf-be0c-53838b0f1951, af013b1f-1e94-4aa6-a411-9af7985fac01, 13bc195c-5005-4e42-b9f9-2f978cc0dbc8, f20c92b9-6fa9-4307-bada-e3ac18ebbcfb, 009222b7-90f8-4701-b12b-a27861cca50c, 3bddc94c-b967-4891-8e40-b47fc01adf2e, ddd197e5-2b74-4b5a-99ca-35886e26b7c2, 3dbef429-61d7-4f49-8c36-8df70e54597f, 9b2a62d9-e6a9-4a21-8469-495190d93d18, 15bd32be-c54f-4f56-8c05-2443a3750109, 6a28f464-bb7e-42b2-9464-a882eb176fa2, 0fd5ba55-bb4d-4f7b-a6e3-784256fa5fda, 547adacc-d276-42a1-a2ce-6909157c2449, d10fc329-b274-433f-8515-6746de286d89, 7234b854-393e-479c-9419-5529b2e99d80'}]}"
"{'title': 'Epilepsy 12 - National organisational audit and Trust profile', 'keywords': ['Audit', 'Epilepsy 12', 'National organisational', 'Paediatric', 'Survey', 'workforce', 'epilepsy'], 'contactPoint': 'DataSharing@hqip.org.uk', 'abstract': ""A dataset comprising a yearly survey of Trusts' paediatric epilepsy services"", 'publisher': {'identifier': '607db9c4e1f9d3704d570d23', 'name': 'HQIP', 'memberOf': 'ALLIANCE'}}",2c737d63-69f4-4a02-8df9-54c1e65e845f,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html'], 'typicalAgeRange': '0-25'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'4.0.0': 'b1712bea-8198-4836-a153-b446ec4ab287', '5.0.0': 'f635894a-61b8-40ad-bfa2-4c31ef23ad34', 'latest': 'f635894a-61b8-40ad-bfa2-4c31ef23ad34'}","{'description': ""A dataset comprising a yearly survey of Trusts' paediatric epilepsy services. The dataset covers England and Wales and includes information on 10 areas of the provision and organisation of services: Workforce, Epilepsy clinic configuration, Tertiary provision, Investigations, Service contact, Young people and transition, Mental health provision, Neurodevelopmental support, Care planning, and the use of a Patient database/register.\n\nhttps://www.rcpch.ac.uk/sites/default/files/2018-07/epilepsy12_organisational_audit_dataset_may_2018_0.pdf"", 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)', 'associatedMedia': ['https://www.hqip.org.uk/a-z-of-nca/national-epilepsy-12-audit/#.YKKX0qhKiUk']}",f635894a-61b8-40ad-bfa2-4c31ef23ad34,https://web.www.healthdatagateway.org/dataset/f635894a-61b8-40ad-bfa2-4c31ef23ad34,"{'access': {'jurisdiction': ['GB-EAW'], 'deliveryLeadTime': '2-6 MONTHS', 'accessRights': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'accessRequestCost': ['An indicative cost will be provided to applicants upon application. Charges will be based\non workload associated with the application and will be charged following sharing of the\ndata. They will include a standard £350 + VAT admin fee to cover consultation and\nprocessing of the application, plus a £350 + VAT per day of analyst time– chargeable in\nhalf day increments. These costs are limited to RCPCH activitiy in the administation and preparation of requested data. HQIP will also charge according to their costing model.'], 'dataProcessor': 'Royal College of Paediatrics and Child Health', 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England'}, 'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE'], 'dataUseLimitation': ['NO RESTRICTION'], 'resourceCreator': ['Data has been provided by the Healthcare Quality Improvement Partnership from the Epilepsy12 Audit Programme']}, 'formatAndStandards': {'format': ['.xlsx'], 'language': ['en'], 'conformsTo': ['OTHER'], 'vocabularyEncodingScheme': ['OTHER']}}","{'origin': {'collectionSituation': ['OUTPATIENTS', 'COMMUNITY'], 'source': ['ELECTRONIC SURVEY'], 'purpose': ['AUDIT']}, 'temporal': {'startDate': '2001-09-20', 'accrualPeriodicity': 'OTHER', 'timeLag': 'VARIABLE'}}",2021-11-29T21:30:25Z,"[{'observedNode': 'EVENTS', 'measuredValue': 136, 'disambiguatingDescription': 'Number of Trusts and Health Boards who submitted data for the 2020 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"{'title': 'National Cardiac Audit Programme - Myocardial Ischaemia National Audit (MINAP)', 'publisher': {'name': 'HQIP', 'identifier': '607db9c4e1f9d3704d570d23', 'memberOf': 'ALLIANCE'}, 'keywords': ['Cardiac', 'Ischaemia', 'NCAP', 'Audit', 'Myocardial'], 'abstract': 'Continuously ascertained record-level information on patients admitted to hospital with acute coronary syndromes (heart attack). Data covers from a 999 call through diagnosis and treatment at hospital, to preventive medications on discharge.', 'contactPoint': 'DataSharing@hqip.org.uk'}",3558f8a1-6d52-4b59-b513-51c068095bc2,"{'followup': 'UNKNOWN', 'pathway': 'The NICOR datasets focus primarily on secondary care and therfore do not cover the whole patient pathway. The audit data may be linked with other primary cars datasets e.g, General Practice Extraction Services (GPES) to give a better undestanding of care pathways and how disease and treatments are manged over time.', 'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html'], 'typicalAgeRange': '20-150', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'f636abcd-91b1-4408-b44b-5f6274bc98d6'},"{'description': 'The dataset contains continuously ascertained record-level information on the care provided to patients who are admitted to hospital with acute coronary syndromes (heart attack). Data covers the patient pathway from a call to the emergency services or their self-presentation at an Emergency Department, through diagnosis and treatment at hospital, to the prescription of preventive medications on discharge.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)', 'associatedMedia': ['https://www.hqip.org.uk/a-z-of-nca/national-cardiac-audit-programme-ncap/#.YKPMaqhKiUk']}",f636abcd-91b1-4408-b44b-5f6274bc98d6,https://web.www.healthdatagateway.org/dataset/f636abcd-91b1-4408-b44b-5f6274bc98d6,"{'access': {'dataProcessor': 'Barts Health NHS Trust, host of the National Institute for Cardiovascular Outcomes Research (NICOR)', 'deliveryLeadTime': 'VARIABLE', 'jurisdiction': ['GB-EAW'], 'accessRights': ['https://www.nicor.org.uk/for-researchers/data-sharing-application-process/', 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'accessRequestCost': ['https://www.nicor.org.uk/for-researchers/data-sharing-application-process/', 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England'}, 'usage': {'resourceCreator': ['Data has been provided by the Healthcare Quality Improvement Partnership from the National Cardiac Audit Programme'], 'dataUseLimitation': ['NO RESTRICTION'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE']}, 'formatAndStandards': {'conformsTo': ['OTHER'], 'format': ['Excel'], 'language': ['en'], 'vocabularyEncodingScheme': ['OTHER']}}","{'origin': {'purpose': ['AUDIT'], 'source': ['ELECTRONIC SURVEY', 'OTHER'], 'collectionSituation': ['IN-PATIENTS', 'ACCIDENT AND EMERGENCY']}, 'temporal': {'timeLag': 'VARIABLE', 'accrualPeriodicity': 'DAILY', 'startDate': '2013-01-01'}}",2021-11-29T21:30:51Z,"[{'observedNode': 'EVENTS', 'measuredValue': 98220, 'disambiguatingDescription': 'number of records submitted to the audit in 2018/19', 'observationDate': '01/01/2020', 'measuredProperty': 'Count'}]",6.0.0,"{'derivation': ['Not available'], 'qualifiedRelation': ['Data Linked with that from other custodians may be available, but the release of linked data will be subject to the separate permission of all relevant data controllers.']}",2021-11-29T21:30:51Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Substance Misuse Dataset', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'publisher': {'memberOf': 'ALLIANCE', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'name': 'SAIL'}, 'abstract': 'The Substance Misuse Data Set captures data relating to all individuals (clients), both young persons and adults, presenting for substance misuse treatment in Wales.', 'doiName': 'In Progress', 'keywords': ['Misuse', 'Substance', 'SAIL']}",291c0dd4-0988-42d2-8e0b-878a892add57,"{'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'Wales', 'followup': 'OTHER', 'pathway': 'Secondary care'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'f9dad362-1e1d-4bfe-9a6d-79cc64f9e919', '6.0.0': 'f6aa8836-b437-40b6-bd1e-ae20010048dd', '1.0.0': '742d6e48-707a-4b1e-acb7-61928c30e6ea', '5.0.0': '8dd6f22d-e513-4ee7-a7e8-abe055727076', '4.0.0': '9279c4fc-171e-4711-8a4e-e9c866c2e894', '3.0.0': 'acc3ceeb-f4d4-47f7-996b-a7fa860e4689', '2.0.0': 'bbb3e017-890e-466b-82f0-475ec103f108', 'latest': 'f6aa8836-b437-40b6-bd1e-ae20010048dd'}","{'description': 'The Substance Misuse Data Set captures data relating to all individuals (clients), both young persons and adults, presenting for substance misuse treatment in Wales.\n\nWelsh providers delivering substance misuse treatment and who are in receipt of Welsh Government substance misuse revenue funding are required to submit the Data Set.\n\nTreatment Outcomes Profiles are only required to be completed for Adults (age 16 and over) in receipt of structured treatments.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://www.youtube.com/watch?v=ZK9-Jw3uVkw', 'https://saildatabank.com/'], 'isPartOf': 'No Group'}",f6aa8836-b437-40b6-bd1e-ae20010048dd,https://web.www.healthdatagateway.org/dataset/f6aa8836-b437-40b6-bd1e-ae20010048dd,"{'formatAndStandards': {'conformsTo': 'LOCAL', 'vocabularyEncodingScheme': 'LOCAL', 'format': ['SQL database table'], 'language': 'en'}, 'usage': {'isReferencedBy': ['Song et al. 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This can be used for pathway analysis and population health analysis across care settings as Discover-NOW has data for primary, secondary and social care.', 'contactPoint': 'researchers@registerfordiscover.org.uk'}",602d8093-6a1e-42cf-a89c-8bf0d47ecc8c,"{'spatial': 'NHS Brent CCG; NHS Central London CCG; NHS Ealing CCG; NHS Hammersmith & Fulham CCG; NHS Harrow CCG; NHS Hillingdon CCG; NHS Hounslow CCG; NHS West London CCG', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'This dataset is representative of the patient pathway as we have data from all care settings (primary care, acute, mental health, community and social care). We also have data for all disease areas and hence able to track the pathway for all diseases.', 'followup': '> 10 YEARS', 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '5eaf28aa-dfd4-4bf6-b5e7-3d172a2c3cf7', '2.0.0': 'f6e25ba4-4f7a-436e-a5f9-f0257d45a612', '0.0.1': '7f23034b-6887-48c0-bbe7-07d099ca9395', 'latest': 'f6e25ba4-4f7a-436e-a5f9-f0257d45a612'}","{'description': 'This dataset is a merged dataset of the existing datasets already published. This dataset contains all the columns made available within the individual datasets but as one large amalgamated dataset. This provides a longitudinal linked dataset of NWL patients to support pathway analysis, population health analysis and research analytics that requires data from various care settings.', 'isPartOf': 'SUS, PRIMARY CARE, MENTAL HEALTH, COMMUNITY', 'associatedMedia': ['https://imperialcollegehealthpartners.com/discover-now/north-west-london-covid-19-data-repository/', 'https://www.nwlondonccgs.nhs.uk/professionals/whole-systems-integrated-care-wsic-dashboards-and-information-sharing/information-de-identified-users']}",f6e25ba4-4f7a-436e-a5f9-f0257d45a612,https://web.www.healthdatagateway.org/dataset/f6e25ba4-4f7a-436e-a5f9-f0257d45a612,"{'usage': {'isReferencedBy': ['Bottleet al. BMC Medical Informatics and Decision Making (2020) 20:71 https://doi.org/10.1186/s12911-020-1082-7'], 'resourceCreator': 'NHS Brent CCG\nDiscover-NOW', 'dataUseRequirements': ['COLLABORATION REQUIRED', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'investigations': ['https://www.registerfordiscover.org.uk/researchers/discover-for-researchers-and-industry'], 'dataUseLimitation': 'NO RESTRICTION'}, 'access': {'dataProcessor': 'NHS BRENT CCG', 'deliveryLeadTime': '1-2 MONTHS', 'accessService': ""Researchers will have access to a VDI environment with a specific username and password. The researchers will get access to the datasets that is present in the hub's catalogue and would be able to carry out their research within the safe haven. There are restrictions applied which prevents the researchers from taking data out of the safe haven, once the research/analysis is completed the admin team will need to be contacted for taking the analysis off the safe haven"", 'accessRights': ['https://imperialcollegehealthpartners.com/discover-now/nwl-covid-data-access/'], 'accessRequestCost': 'In Progress', 'jurisdiction': 'GB', 'dataController': 'Joint data controller model across North West London'}, 'formatAndStandards': {'conformsTo': ['LOCAL', 'NHS DATA DICTIONARY', 'OTHER'], 'vocabularyEncodingScheme': ['LOCAL', 'OPCS4', 'READ', 'SNOMED CT', 'NHS NATIONAL CODES', 'ODS', 'ICD10'], 'language': 'en', 'format': ['Excel', 'SQL', 'Tableau', 'R']}}","{'origin': {'purpose': ['CARE', 'ADMINISTRATIVE'], 'source': 'EPR', 'collectionSituation': ['CLINIC', 'PRIMARY CARE', 'ACCIDENT AND EMERGENCY', 'OUTPATIENTS', 'IN-PATIENTS', 'SERVICES', 'COMMUNITY', 'HOME', 'PHARMACY', 'OTHER']}, 'temporal': {'distributionReleaseDate': '2020-01-30', 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"{'title': 'PHOTO Translational bladder cancer biorepository', 'keywords': ['PHOTO', 'biorepository', 'Carcinoma in situ of bladder', 'UKCRC Tissue Directory', 'Translational bladder cancer', 'TURBT'], 'publisher': {'name': 'TISSUE DIRECTORY', 'contactPoint': 'PHOTO-icrctsu@icr.ac.uk', 'memberOf': 'ALLIANCE'}, 'doiName': 'Not Available', 'contactPoint': 'PHOTO-icrctsu@icr.ac.uk', 'abstract': 'Collection of samples and data across the following diseases: Carcinoma in situ of bladder.'}",07d1b768-78f6-41e8-995a-66afd2549b34,"{'spatial': 'England', 'physicalSampleAvailability': ['PLASMA', 'RNA', 'TISSUE', 'URINE', 'WHOLE BLOOD'], 'typicalAgeRange': '40-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'ed11aeb9-bdc8-462d-9524-9c193d4a3266', '3.0.0': 'f71e0f89-edf6-4070-9045-6024b00f79ca', '2.0.0': '319a2a77-3f4d-497e-bc3e-33002f316cae', '1.0.0': 'a48f5f01-a0b4-4bfa-aaec-74e2e6bb5973', 'latest': 'f71e0f89-edf6-4070-9045-6024b00f79ca'}","{'description': 'Translational study associated with the PHOTO trial - A pragmatic randomised controlled phase III trial, investigating the efficacy transurethral resection of bladder tumour (TURBT) using photo-dynamic diagnosis (PDD) under blue light in intermediate and high risk non-muscle invasive bladder cancer (NMIBC). The translational study is establishing a well-characterised cohort of patients with intermediate and\nhigh-risk NMIBC including clinical data, urine, blood\nand tumour specimens that would be available for\nseparately funded research of genotypic and phenotypic studies.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",f71e0f89-edf6-4070-9045-6024b00f79ca,https://web.www.healthdatagateway.org/dataset/f71e0f89-edf6-4070-9045-6024b00f79ca,"{'access': {'accessRights': 'Please contact the publisher using Contact Point details provided.', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED.', 'dataController': 'Newcastle University', 'accessRequestCost': 'Not specified', 'dataProcessor': 'Not Applicable', 'jurisdiction': 'GB-ENG'}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2016-01-01', 'distributionReleaseDate': '2018-12-13'}}",2020-01-13T17:16:36Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:11:07Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
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"{'title': 'Medicines dispensed in Primary Care (NHSBSA data)', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'NHS DIGITAL', 'contactPoint': 'enquiries@nhsdigital.nhs.uk'}, 'keywords': ['DIGITRIALS', 'DIGITRIALS', 'PRESCRIBING', 'MEDICINES', 'DISPENSING', 'NCS', 'National Core Study', 'COVID-19'], 'abstract': 'The Medicines Dispensed in Primary Care (NHSBSA) data comprises prescriptions for medicines that are dispensed or supplied by community pharmacists, appliance contractors and dispensing doctors in England.', 'contactPoint': 'enquiries@nhsdigital.nhs.uk'}",f201b68f-d995-4a70-a9ee-aa3510232777,"{'spatial': 'England', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150', 'followup': 'UNKNOWN', 'pathway': 'MEDICINES IN COMMUNITY SETTINGS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '7b002523-ab79-42de-bc93-6c73e3cc2921', '4.0.0': 'f80940e8-0ee1-46be-876b-46fb4bbbc4d2', '1.0.0': '33f2e9dd-9019-4e8b-9c0e-bbc6a8dc9d81', '0.0.1': '63bde137-b3b1-482e-8bac-3219e602e594', '3.0.0': 'de28157e-5319-4972-83ae-4d0c73cdfca9', 'latest': 'f80940e8-0ee1-46be-876b-46fb4bbbc4d2'}","{'description': ""Since July 2020 NHS Digital has established a collection of data from electronic and paper prescriptions submitted to the NHSBSA for reimbursement each month.\n\nThe data comprises prescriptions for medicines that are dispensed or supplied by community pharmacists, appliance contractors and dispensing doctors in England.\n\nThe data also includes:\n\nprescriptions submitted by prescribing doctors, for medicines personally administered in England\nprescriptions written in England and dispensed outside of England\nprescriptions written in Wales, Scotland, Northern Ireland, the Isle of Man, Jersey and Guernsey but dispensed in England\n\nData includes prescriptions issued by prescribers in:\n\ngeneral practice\ncommunity clinics\nhospital clinics\ndentists\ncommunity nursing services.\n\nThere are around 90 to 100 million rows of patient-level data in this collection per month. Each row represents each medicine or appliance on a prescription and includes personal data (for example NHS number) and special category data (data concerning health).\n\nTimescales for dissemination of agreed data can be found under 'Our Service Levels' at the following link: https://digital.nhs.uk/services/data-access-request-service-dars/data-access-request-service-dars-process [Standard response]"", 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://digital.nhs.uk/data-and-information/data-tools-and-services/data-services/medicines-dispensed-in-primary-care-nhsbsa-data']}",f80940e8-0ee1-46be-876b-46fb4bbbc4d2,https://web.www.healthdatagateway.org/dataset/f80940e8-0ee1-46be-876b-46fb4bbbc4d2,"{'access': {'deliveryLeadTime': 'OTHER', 'accessService': 'Once your DARS application has been approved, data will be made available either by secure file transfer or through the Data Access Environment (DAE). 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"{'title': 'Hospital Episode Statistics Admitted Patient Care', 'keywords': ['Episodes', 'Hospital', 'Diagnosis', 'Inpatients', 'Emergency', 'Operations', 'Admission', 'Finished Consultant Episode', 'Finished Admission Episode', 'FCE', 'FAE', 'Episode', 'Day Case', 'Ordinary', 'Elective', 'Emergency', 'Waiting List', 'Planned', 'Main Speciality', 'Treatment Speciality', 'External Cause', 'Hospital Activity', 'HES', 'APC', 'DIGITRIALS', 'National Core Study', 'COVID-19', 'NCS'], 'publisher': {'name': 'NHS DIGITAL', 'identifier': '5f86cd34980f41c6f02261f4', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'enquiries@nhsdigital.nhs.uk', 'abstract': 'Record-level patient data set of patients admitted for treatment at NHS hospitals in England, including delivery and birth data. A record represents one episode.'}",2b6409db-a669-4bef-9fd5-39c2b6f8d5e9,"{'followup': 'OTHER', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Secondary Care pathway. This dataset covers inpatient admissions to hospitals in England. It includes information on the treatment and outcome of the hospital admission and can be linked to the HES A&E dataset to further the pathway if an A&E attendance took place prior to an admissions to hospital.', 'spatial': ['England'], 'typicalAgeRange': '0-120'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '6111c3eb-028c-429e-a78c-6eb9e6b36b66', '7.0.0': 'f82b398a-7e53-4851-ab7b-07508f810ebc', '2.0.0': '02961e24-4cb3-4cd3-90bd-4248a00391ce', '4.0.0': 'a4c42c98-39cd-407b-b711-c50c2529601f', '5.0.0': 'c168178a-143b-402b-9ab4-2f230cf06226', '6.0.0': '89f76cff-03dd-47a1-b6fc-29e42b78e7a5', '3.0.0': '4a813fda-a3c4-422e-9d11-c031ebc1f74f', 'latest': 'f82b398a-7e53-4851-ab7b-07508f810ebc'}","{'description': ""Hospital Episode Statistics (HES) is a database containing details of all admissions, A and E attendances and outpatient appointments at NHS hospitals in England.\n\nRecords in the HES Admitted Patient Care (APC) database are called ‘hospital episodes’, and each hospital episode relates to a period of care for a patient under a single consultant within one hospital provider. A stay in hospital from admission to discharge is called a ‘spell’ and can be made up of one or more episodes of care. HES APC looks at completed episodes, called Finished Admission Episodes (FAEs), which is the first episode in a spell of care, and Finished Consultant Episodes (FCEs), which is a continuous period of care under one consultant.\n\nInitially this data is collected during a patient's time at hospital as part of the Commissioning Data Set (CDS). This is submitted to NHS Digital for processing and is returned to healthcare providers as the Secondary Uses Service (SUS) data set and includes information relating to payment for activity undertaken. It allows hospitals to be paid for the care they deliver. \n\nThis same data can also be processed and used for non-clinical purposes, such as research and planning health services. Because these uses are not to do with direct patient care, they are called 'secondary uses'. This is the HES data set.\n\nHES data covers all NHS Clinical Commissioning Groups (CCGs) in England, including:\n\nprivate patients treated in NHS hospitals\npatients resident outside of England\ncare delivered by treatment centres (including those in the independent sector) funded by the NHS\nEach HES record contains a wide range of information about an individual patient admitted to an NHS hospital, including:\n\nclinical information about diagnoses and operations\npatient information, such as age group, gender and ethnicity\nadministrative information, such as dates and methods of admission and discharge\ngeographical information such as where patients are treated and the area where they live\nWe apply a strict statistical disclosure control in accordance with the NHS Digital protocol, to all published HES data. This suppresses small numbers to stop people identifying themselves and others, to ensure that patient confidentiality is maintained.\n\nhttps://digital.nhs.uk/data-and-information/publications/statistical/hospital-admitted-patient-care-activity"", 'isPartOf': 'HES', 'associatedMedia': ['https://digital.nhs.uk/data-and-information/publications/statistical/hospital-admitted-patient-care-activity']}",f82b398a-7e53-4851-ab7b-07508f810ebc,https://web.www.healthdatagateway.org/dataset/f82b398a-7e53-4851-ab7b-07508f810ebc,"{'access': {'accessRequestCost': ['https://digital.nhs.uk/services/data-access-request-service-dars/data-access-request-service-dars-charges'], 'deliveryLeadTime': '2-6 MONTHS', 'accessService': 'Once your DARS application has been approved, data will be made available either by secure file transfer or through the Data Access Environment (DAE).\n\nSecure file transfer: https://digital.nhs.uk/services/transfer-data-securely\n\nDAE: https://digital.nhs.uk/services/data-access-environment-dae', 'dataController': 'NHS Digital', 'jurisdiction': ['GB-ENG'], 'accessRights': ['https://digital.nhs.uk/services/data-access-request-service-dars'], 'dataProcessor': 'Not Applicable'}, 'formatAndStandards': {'vocabularyEncodingScheme': ['OPCS4', 'NHS NATIONAL CODES', 'ICD10', 'OTHER'], 'language': ['en'], 'conformsTo': ['NHS DATA DICTIONARY'], 'format': ['csv', 'JSON']}, 'usage': {'investigations': ['https://digital.nhs.uk/services/data-access-request-service-dars/register-of-approved-data-releases'], 'resourceCreator': ['NHS Digital'], 'dataUseRequirements': ['ETHICS APPROVAL REQUIRED', 'NOT FOR PROFIT USE', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': ['NO RESTRICTION']}}","{'temporal': {'timeLag': '1-2 MONTHS', 'startDate': '1989-04-01', 'accrualPeriodicity': 'MONTHLY'}, 'origin': {'source': ['EPR', 'OTHER'], 'collectionSituation': ['IN-PATIENTS'], 'purpose': ['CARE', 'ADMINISTRATIVE']}}",2020-08-24T11:49:25Z,"[{'observedNode': 'EVENTS', 'measuredValue': '17400000', 'disambiguatingDescription': 'Finished Consultant Episodes (FCEs) within Admitted Patient Care (APC) HES (Hospital Episode Statistics) \n', 'observationDate': '18/11/2020', 'measuredProperty': 'Count'}]",7.0.0,"{'qualifiedRelation': ['HES A&E to HES APC: Links the HES A&E Attendance to a subsequent APC admission so that information about the A&E attendance can be seen along with the APC record. 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"{'title': 'Ventilation strategies for patients on intensive care', 'publisher': {'contactPoint': 'PIONEER@UHB.NHS.UK', 'name': 'PIONEER', 'memberOf': 'HUB'}, 'keywords': ['NHS', 'acute', 'exacerbation', 'COVID', 'pneumonia', 'pneumonitis', 'NEWS2', 'deterioration', 'alert', 'SEWS', 'oxygen', 'non-invasive ventilation', 'high flow oxygen', 'CPAP', 'airway pressure', 'inspiratory pressure', 'tidal volume', 'patient', 'acute hospitals', 'inpatient', 'ethnicity', 'multimorbidity', 'blood', 'biomarkers', 'physiology', 'demographics', 'treatments', 'therapies', 'interventions', 'outcomes', 'death', 'longitudinal', 'vital signs'], 'contactPoint': 'PIONEER@UHB.NHS.UK', 'doiName': 'https://web.www.healthdatagateway.org/dataset/1a66dbc1-4f06-455c-85fc-68b372575cad', 'abstract': 'Mechanical and non-invasive ventilation, tracheostomy. Ventilator settings, tidal volumes and pressures. ECMO, inotropes, other organ support, medications, investigations and serial physiology. The preceding care journey and outcomes'}",1a66dbc1-4f06-455c-85fc-68b372575cad,"{'typicalAgeRange': '10-110', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'West Midlands Region, UK', 'followup': 'OTHER', 'pathway': 'The West Midlands (WM) has a population of 5.9million & includes a diverse ethnic, socio-economic mix. There is a higher than average percentage of minority ethnic groups with Birmingham having a population which is >40% non-white. WM has a large number of elderly residents but Birmingham is one of the youngest cities in the UK.  There is social deprivation and Birmingham’s population suffers with particularly high rates of illness; including cerebrovascular Disease, physical inactivity, obesity, smoking, hypertension, ischaemic heart disease & diabetes.  There are also high levels of rare diseases, especially immunometabolic conditions.   The patients included in this dataset are representative of this diverse population and also include a wide age-range.  University Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & 100 ITU beds. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.   The UHB ITU is divided into areas of speciality, including general ITU, but also liver, cardiothoracic and neurological designated units, which focus on patients with these specific organ-support issues. This dataset focuses on those patients who required a higher level of medical support and/or ventilatory support for any reason or purpose.   It includes all ventilator settings, oxygen support and all organ support treatments.  It assesses infections associated with ITU, all routine and specialist tests, all investigations, treatments and results.  It can be supplemented with data preceding and after the acute event, to understand risks of susceptibility and long-term outcomes. Although primarily secondary care, this dataset can be supplemented with ambulance and primary care data on request.  PIONEER can also offer synthetic data, images and access to a secure Trusted Research Environment for analytics and AI.  \nPIONEER can assist with analytics, model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '7ad3855f-7c2b-42d2-8ca1-6bc92dc9ce5e', '1.0.0': 'f8a268c1-831c-4c80-b62c-e254a572b9a0', 'latest': 'f8a268c1-831c-4c80-b62c-e254a572b9a0'}","{'description': 'Ventilatory strategies and outcomes for patients acutely admitted to hospital\n\nDataset 14.0\nVersion 1.0 15.2.2021\n\nBackground.\nAcute respiratory failure is commonly encountered in the emergency department (ED). Early treatment can have positive effects on long-term outcome. Non-invasive ventilation is commonly used for patients with respiratory failure during acute exacerbations of chronic obstructive lung disease and congestive heart failure.  For other patients, including neuromuscular dysfunction, mechanical ventilation may be needed. For refractory hypoxemia, new rescue therapies have emerged to help improve the oxygenation, and in some cases mortality. This dataset summarises the demography, admitting complaint, serial physiology, treatments and ventilatory strategies in patients admitted with hypoxaemia. Management options and rescue therapies including extracorporeal membrane oxygenation are included.\n\nPIONEER geography\nThe West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix. There is a higher than average percentage of minority ethnic groups. WM has a large number of elderly residents but is the youngest population in the UK.  Each day >100,000 people are treated in hospital, see their GP or are cared for by the NHS.  \n\nEHR. University Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & 100 ITU beds.  ITU capacity increased to 250 beds during the COVID pandemic. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.  The electronic record captures ventilatory parameters.\n\nScope: All hospitalised patients with hypoxaemia requiring ventilatory support  from 2000 onwards. The dataset includes highly granular patient demographics & co-morbidities taken from ICD-10 & SNOMED-CT codes.  Serial, structured data pertaining to care process (timings, staff grades, specialty review, wards), severity, ventilatory requirements, acuity, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations), all blood results, microbiology, all prescribed & administered treatments (fluids, antibiotics, inotropes, vasopressors, organ support), all outcomes.  \n\nAvailable supplementary data:\nSynthetic data.  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"{'title': 'Growing up in Bradford (BiB)', 'publisher': {'memberOf': 'OTHER', 'identifier': '60cb538a7018342af889e974', 'name': 'Born in Bradford'}, 'contactPoint': 'borninbradford@bthft.nhs.uk', 'keywords': ['BiB', 'Born in Bradford', 'Growing Up', 'cohort study', 'Ethnicity', 'Mental health', 'Cardiorespiratory health', 'Cognitive development', 'socio-economic status', 'Deprivation', 'Sensorimotor development', 'Environment', 'Child Health', 'Dataset', 'cohort discovery'], 'abstract': 'Growing up in Bradford is a follow up to the initial Born in Bradford cohort study, based in Bradford (UK). This dataset includes survey responses from 12,619 participants on questions covering health, wellbeing and social and environmental factors.'}",fe1684ef-69ee-4490-9ab8-b26e990c9060,"{'physicalSampleAvailability': ['URINE', 'WHOLE BLOOD', 'DNA', 'PLASMA', 'SERUM'], 'typicalAgeRange': '6-56', 'followup': '0 - 6 MONTHS', 'pathway': 'Not applicable', 'spatial': ['United Kingdom,England,Yorkshire and The Humber,Bradford']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'f98965a8-1ff3-4981-8462-fbc8005775b6'},"{'description': '**What is Growing Up in Bradford?**\n\nGrowing Up in Bradford is a follow up to the initial Born in Bradford (BiB) cohort study. BiB was established to examine the determinants of health and development during childhood and throughout adult life, and recruited 12,453 mothers who experienced 13,858 births. The Growing Up study is the first full follow up of the cohort and aims to investigate the determinants of primary school aged children’s health and development, with a focus on both parents health and wellbeing and the exposure in childhood that may influence future health. The age of children included in this follow up are between seven and 11 years old.\n\n**Recruitment process**\n\nThe study recruited from the pool of individuals who had taken part in the original BiB study, with as many mothers, partners and children from the original cohort recruited as possible. 6,502 children, 5,291 mothers and 826 partners completed the study.\n\n**Available data**\n\nEach child completed an age appropriate questionnaire, with one of the child’s parents completing a questionnaire about themselves and their partner and a separate questionnaire about their child. Topics included in the adults questionnaire included residential environment characteristics and satisfaction, socio-economic circumstances, social circumstances, and health and behaviour.\xa0 The adult completed child survey asked questions about their child’s health, development and behaviour. The child completed child questionnaire asked questions regarding physical activity and diet.\n\nTwo subsets of adults were asked further questions. One was asked additional questions regarding their child’s diet and physical activity, and the adult’s views on parenting. \xa0The other was asked questions about their child’s experience of asthma and allergies.\n\nParticipants (adults and children) could also volunteer to provide a range of biological measures and samples. As a result, the Growing Up data also contains samples/results of blood tests, blood pressure reading, renal analyses and DEXA scans.', 'associatedMedia': ['https://borninbradford.github.io/datadict/bib/bib_growingup/', 'https://doi.org/10.1186/s12889-019-7222-2'], 'isPartOf': 'Born in Bradford'}",f98965a8-1ff3-4981-8462-fbc8005775b6,https://web.www.healthdatagateway.org/dataset/f98965a8-1ff3-4981-8462-fbc8005775b6,"{'usage': {'investigations': [''], 'dataUseRequirements': ['INSTITUTION SPECIFIC RESTRICTIONS', 'PUBLICATION REQUIRED', 'RETURN TO DATABASE OR RESOURCE'], 'resourceCreator': ['Born in Bradford'], 'isReferencedBy': ['Bird P et al. (2019) Growing up in Bradford: protocol for the age 7–11 follow up of the Born in Bradford birth cohort. https://doi.org/10.1186/s12889-019-7222-2 . BMC Public Health'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL'], 'format': ['text/csv', 'text/tab-separated-values', 'other']}, 'access': {'dataController': 'Bradford Teaching Hospitals NHS Foundation Trust', 'accessRights': ['https://borninbradford.nhs.uk/research/how-to-access-data/'], 'accessService': ""Data Access Applications are reviewed monthly by the Born in Bradford Executive Group. For the majority of Data Access Applications, an extract of data fitting the requirements of the research will be provided for use by the researcher at their institution. The extract will only contain the variables required by the research. A Data Sharing Contract and Agreement will need to be signed by the researcher's institution and Bradford Teaching Hospitals NHS Foundation Trust.\n\nFor more information see https://borninbradford.nhs.uk/research/how-to-access-data/"", 'accessRequestCost': ['https://borninbradford.nhs.uk/research/how-to-access-data/'], 'dataProcessor': 'Not Applicable', 'jurisdiction': ['GB-GBN'], 'deliveryLeadTime': '2-6 MONTHS'}}","{'temporal': {'accrualPeriodicity': 'STATIC', 'distributionReleaseDate': '2022-08-01', 'startDate': '2017-02-13', 'endDate': '2020-03-13', 'timeLag': 'NOT APPLICABLE'}, 'origin': {'source': ['PAPER BASED', 'ELECTRONIC SURVEY'], 'purpose': ['STUDY'], 'collectionSituation': ['COMMUNITY', 'HOME', 'OTHER']}}",2022-05-03T10:43:18Z,"[{'observedNode': 'PERSONS', 'measuredValue': '12619', 'disambiguatingDescription': 'Persons recruited to the BiB Growing Up study', 'observationDate': '27/03/2022', 'measuredProperty': 'Count'}]",1.0.0,"{'qualifiedRelation': [''], 'derivation': ['Not available']}",2022-05-03T10:43:20Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 12, 'structuralMetadata.tableName': 12, 'structuralMetadata.tableDescription': 12, 'structuralMetadata.dataElementsCount': 1597, 'structuralMetadata.columnName': 1597, 'structuralMetadata.columnDescription': 1597, 'structuralMetadata.dataType': 1597, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '2094c66b-108a-49b5-b60f-ce2f9221838a', 'description': 'BiB Growing Up main blood tests carried out at Bradford Teaching Hospitals', 'name': 'BiB_GrowingUp.blood_tests', 'dataElementsCount': 16, 'dataElements': '1d302228-bede-4dbb-b9d3-f2cd3d0909dd, 6dd3f250-d67c-4047-92ff-68b59a91f3e3, 2baf6990-9491-4c84-875d-fbe1bbfd5af5, e841eaff-1b07-4187-84e2-5faa69fd504b, 4e0ec98b-fd30-4066-b6ab-de8e4eb2fecd, 8393cf56-b837-4b31-a1e9-57354e5830df, f12e9014-1815-469a-99fb-b76824de6ce2, 1e8cf000-a336-4261-b550-eef31e9685cb, e2081b0f-5e1c-4661-9f42-ba40c4f6f892, 9203b655-a3ce-4eea-addd-96ba3a47dc1f, 0f214e92-7313-43f9-8ed5-63c4594d2ce2, a93fa30c-cde8-4c43-ae49-5cbc98a5ba01, 18ee7f68-ee31-4ab2-b5c2-e52d02bb62fa, d66b06b5-f421-48f2-9b47-983addd365a5, 498f1ea3-9e59-4adc-ace5-62c80c043af1, c3e24a52-bc6e-4f42-8916-029b3744875c'}, {'id': 'b762fb88-08c3-4cc6-8364-ca11c476e89a', 'description': 'BiB Growing Up child blood pressures', 'name': 'BiB_GrowingUp.blood_pressure', 'dataElementsCount': 16, 'dataElements': 'd1abe827-50e7-40bf-bcd7-0eb7406f9a83, 426b9b9e-59f3-49c5-8e8e-23bb53390f81, 4ce3bf45-fc42-40a7-90fe-bf5e78b1b084, 0384c0ec-9eb6-49a5-bea5-c760ef4a60f5, 64dfc7b7-f481-462f-900e-bf4a0a0b0cf3, 7e5f7cab-1a7f-454f-a972-665fdc5301b0, ec606fb8-4dc0-42f7-b720-78f86561a938, 22675140-edf9-407b-b40e-490d776c08a0, a80a0ea4-813f-40ea-9e20-9073b0177872, 1b89059f-3475-40d0-836a-4ad9da7a8c8e, 78595b66-17ba-4f42-ab6f-4683ef47bc99, 0d8fa1b1-d439-4290-8de7-b1bedccd2065, a150f9e0-9f23-4881-a6f1-41b2a1dab788, d0674068-6158-4bed-b6b7-fd43bab84d88, 31cb781a-fbb1-49f4-84f8-ebc1eb4ce013, 17b67729-4bae-4ba5-8e74-33ec4a9fe69c'}, {'id': '824b0351-c2de-4fbd-abc6-17e065d4ee2e', 'description': 'Cystatin C analysis for the BiB Growing Up UK Kindey Research renal study. 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"{'title': ""2019 UK Parkinson's Audit - Speech and language therapy"", 'keywords': ['Therapist', 'Drooling', 'Swallowing', 'Communication'], 'abstract': ""The dataset contains data provided by speech and language therapy services on the configuration of their service (service audit) and on the care provided to individual patients in connection with their Parkinson's (patient audit)."", 'contactPoint': 'audit@parkinsons.org.uk', 'publisher': {'name': 'PARKINSONS UK', 'identifier': '60a630c77dd392a16e228a92', 'memberOf': 'ALLIANCE'}}",c7f7541b-5030-40b9-962a-4aba44af7e1a,"{'pathway': 'Single specialty - speech and language therapy in secondary care and community services', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2635167/united-kingdom-of-great-britain-and-northern-ireland.html'], 'followup': '6 - 12 MONTHS', 'typicalAgeRange': '34-95'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'f98d83ec-ad27-46d7-9786-7a0f2749aa11'},"{'description': ""The UK Parkinson’s Audit assesses care provided to people with Parkinson's by a range of clinical specialties against evidence-based guidelines.\n\nThe speech and language therapy audit includes services providing care to people specifically in connection with their Parkinson’s. Services submit data on their model of service delivery and the assessments which are routinely carried out (service audit) and data on the care provided over the last 12 months to at least ten of their consecutive patients seen during the five-month data collection period (patient audit). No patient identifiers are collected. \n\nThe audit is open to services across the UK - secondary care (non-acute) and community services. A service is self-defined - for example an individual therapist or a group of therapists seeing the same cohort of patients. There can therefore be more than one service taking part in any Trust or setting.\n\nThe 2019 audit includes data from 79 speech and language therapy services covering 1022 patient cases.\n\nThe data is available by UK Parkinson’s Excellence Network region. The UK Parkinson's Excellence Network is a network of health and social care professionals working to improve Parkinson's services administered with support from Parkinson’s UK. Professionals can join the Network to access resources, increase their knowledge of Parkinson's and collaborate with people affected by Parkinson's to transform health and care services. \n\nThe audit is the recognised quality improvement tool for the Excellence Network, providing an important baseline against which progress can be measured, informing national, regional and local service improvement priorities and plans to achieve better services for people living with the condition. \n\nThe regions are: \n\nEngland:\nCheshire and Merseyside\nEast of England\nEast Midlands\nGreater Manchester, Lancashire and South Cumbria\nLondon\nNorth East and Cumbria\nPeninsula\nSouth East Coast\nSouth West\nThames Valley\nWessex\nWest Midlands\nYorkshire and Humber\n\nScotland:\nNorth Scotland\nSouth and East Scotland\nWest Scotland\n\nNorthern Ireland:\nNorthern Ireland\n\nWales:\nNorth and Mid Wales\nSouth Wales\n\nOther:\nGuernsey\nIsle of Man\nRepublic of Ireland\n\nInformation about the regions can be found here:  https://www.parkinsons.org.uk/professionals/local-parkinsons-excellence-network-groups"", 'isPartOf': ""2019 UK Parkinson's Audit"", 'associatedMedia': ['http://parkinsons.org.uk/audit']}",f98d83ec-ad27-46d7-9786-7a0f2749aa11,https://web.www.healthdatagateway.org/dataset/f98d83ec-ad27-46d7-9786-7a0f2749aa11,"{'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'format': ['Text'], 'conformsTo': ['LOCAL'], 'language': ['en']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': [""Parkinson's UK""]}, 'access': {'dataController': ""Parkinson's UK"", 'accessRights': ['http://parkinsons.org.uk/HDRUK'], 'accessService': ""The audit team at Parkinson's UK will respond to all requests for access to this data within 5 working days"", 'jurisdiction': ['GB-GB'], 'deliveryLeadTime': '2-4 WEEKS'}}","{'temporal': {'startDate': '2019-05-01', 'timeLag': 'NOT APPLICABLE', 'distributionReleaseDate': '2020-01-31', 'endDate': '2019-09-30', 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"{'title': 'Bowel Screening Wales (SBSW)', 'publisher': {'name': 'SAIL', 'identifier': '5f3f98068af2ef61552e1d75', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'keywords': ['Bowel', 'Screening', 'SAIL', 'core-res', 'SBSW'], 'abstract': 'NHS Screening Services - Bowel Screening Data. The aim of the bowel screening programme is to identify cancer early when treatment is more likely to be successful and also remove precancerous growths.'}",9f29d47e-4e9a-41b8-b7bc-5ef3570294ef,"{'pathway': 'Secondary care', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '60-74', 'followup': 'OTHER', 'spatial': ['https://www.geonames.org/2634895/wales.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'5.0.0': '2e33ff3a-b382-4c5a-87de-3fa76dabacbf', '6.0.0': 'f98f9578-a4a3-4d93-b32e-f30ff75888b7', 'latest': 'f98f9578-a4a3-4d93-b32e-f30ff75888b7'}","{'description': 'Administrative and clinical information for bowel screening; currently offered to men and women who are resident in Wales aged between 60 and 74 years old.', 'isPartOf': 'No Group', 'associatedMedia': ['https://saildatabank.com/about-us/overview/', 'https://popdatasci.swan.ac.uk/centres-of-excellence/sail/', 'https://saildatabank.com/', 'https://www.youtube.com/watch?v=ZK9-Jw3uVkw']}",f98f9578-a4a3-4d93-b32e-f30ff75888b7,https://web.www.healthdatagateway.org/dataset/f98f9578-a4a3-4d93-b32e-f30ff75888b7,"{'access': {'accessService': 'The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'accessRequestCost': ['Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'], 'accessRights': ['https://saildatabank.com/application-process/'], 'deliveryLeadTime': '2-6 MONTHS', 'dataController': 'Public Health Wales NHS Trust', 'jurisdiction': ['GB'], 'dataProcessor': 'SAIL Databank'}, 'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'isReferencedBy': ['Koo S, Neilson LJ, Von Wagner C, Rees CJ (2017); The NHS Bowel Cancer Screening Program: current perspectives on strategies for improvement. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5720037/'], 'dataUseLimitation': ['GENERAL RESEARCH USE'], 'resourceCreator': ['[""Public Health Wales NHS Trust""]']}, 'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL'], 'format': ['SQL database table'], 'conformsTo': ['LOCAL']}}","{'origin': {'collectionSituation': ['CLINIC'], 'source': ['EPR'], 'purpose': ['STUDY', 'CARE', 'AUDIT', 'ADMINISTRATIVE', 'FINANCIAL']}, 'temporal': {'endDate': '2020-11-27', 'accrualPeriodicity': 'BIANNUAL', 'timeLag': '2-6 MONTHS', 'distributionReleaseDate': '2018-01-29', 'startDate': '2010-08-20'}}",2021-09-13T15:22:11Z,"[{'observedNode': 'EVENTS', 'measuredValue': '3000000', 'observationDate': '01/09/2021', 'disambiguatingDescription': 'Approx 70-80% coverage of Welsh population through GP registrations.', 'measuredProperty': 'Count'}]",6.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Yes. 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Data available from the end of October 2008 onwards.', 'name': 'CAN', 'dataElementsCount': 6, 'dataElements': 'c378a3a7-81df-4025-889e-2a3a8c43b965, f4378f63-b921-4f4e-9127-af3e646f6051, ae5dad94-f86c-4463-b193-658faaf1fc31, cda0416b-2cf1-47af-a453-4b9eb3def8b3, 0f250099-87b4-489b-91a1-1e0d5209cbd8, 7918c010-19c2-4608-b1de-1e01f30db779'}, {'id': 'e2587b78-27c0-462f-8298-e8aa59ed4460', 'description': 'Contains details of what action [if any] or referral is recommended or performed based upon current bowel screening test result. This can range from scheduling further routine tests/smears, no action, or referral to a gynaecologist or other relevant specialist. 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NOTE - In Wales, there is an improvement plan to offer screening to those aged 50- 59 by April 2023 and NHS have developed a plan to achieve this in stages.', 'name': 'INVITE_TYPE', 'dataElementsCount': 6, 'dataElements': '4a00a96b-230a-4187-962c-f79c02848aaf, bf7121e3-7b38-46eb-aba0-c6358919d750, 2d2c4075-536a-4acc-97d7-6c5097327496, ab48c775-06f0-499c-9add-fc0b4d8b6a62, 861dd2ff-f215-4dc7-990c-e5ccc627379f, fd624c0c-134d-4697-a6eb-0faa57b750cc'}, {'id': '1755f51a-90ed-49d6-b24b-8c7abb211992', 'description': 'Results of bowel cancer test or full screening colonoscopy.', 'name': 'RESULT', 'dataElementsCount': 7, 'dataElements': 'd8e368b1-9479-4398-975a-5c8a5671fdd6, 452bb4f6-5b35-4d9a-89f6-31714a7e7929, 57438188-6dd1-4184-b258-c3e558fc140d, 2997be63-b58c-458c-90c6-fb1582e85afd, d9d32efc-e5bb-481f-9b82-3cca3a6c4cfd, fc7d6863-16f3-479f-9a20-2ae2039b4ccc, 1e620702-508c-472f-9734-79860ba69dce'}, {'id': 'd97ad723-7290-4e0b-b40a-ad1ddac1e23d', 'description': 'Explains the type of treatment used to treat bowel cancer, e.g. laser ablation, knife cone, cryotherapy, and etc.', 'name': 'TREAT', 'dataElementsCount': 6, 'dataElements': 'd7709db2-5dba-456e-93bd-c9a3c3da55d4, d22e5581-8f9c-4f58-913f-0b5499ced314, 2ca9864d-52ec-4a61-8274-e1266daad7d4, e8d38fd5-1169-43f7-9116-d5845a53f5f9, 5a43c509-19a8-4560-96b0-ba00adadfdc8, a696efb4-d280-4539-962c-adbc8b35d429'}, {'id': 'c195e797-69cf-43c1-8004-2258b1b0e5df', 'description': 'The method of surgery performed [if any].', 'name': 'SURG', 'dataElementsCount': 6, 'dataElements': '123ec4ab-1644-4643-b85f-e5d0fd6805f9, 5ec10c12-d035-49e8-8284-080891bf6ed7, e051ee0b-731f-4987-9cee-8968a1d4e70f, 4b688255-6cee-4adb-a71d-a49107d80a34, 6eb44ead-0d40-476c-89a9-6b648160f058, c19cb23f-3a18-4866-b360-b4d1f57b3d6b'}, {'id': 'aa16ccf9-b87e-4ff3-ae51-5597d88167dd', 'description': 'Contains details of all invitations for a bowel screening test and the type of invitation. Data available from the end of October 2008 onwards. NOTE1 - Evidence does not support population screening for those aged over 74. Bowel Screening Wales does not facilitate for individuals to opt into the programme beyond the age of 74 years. Once the programme has fully optimised NHS hope to work with Welsh Government to allow for opt-ins. All men and women aged 60 to 74 who are registered with a GP in England and Wales are automatically sent a bowel cancer screening kit every 2 years. NOTE2 - In Wales, there is an improvement plan to offer screening to those aged 50- 59 by April 2023 and NHS have developed a plan to achieve this in stages.', 'name': 'BSW_INVITATIONS', 'dataElementsCount': 8, 'dataElements': 'e65076a5-76a7-418e-9204-f44e9bae2ecb, 8077d870-78da-41cd-a990-61551fcece86, de4755b2-b1b2-4a4a-bd6f-15dd20baa63f, 11e64f1a-a621-43b6-9dbc-f81b784a26cc, b89a21ab-e987-4360-bc09-1dbd1c13c4df, c24dcb4c-876e-4d3a-97da-34fb30cf3fd9, 7cb83b8f-8972-4de8-9004-1be918160c57, 64a32a21-e32b-4f57-b95c-3d712d564ccc'}, {'id': 'b25d2f5f-9dd3-47c4-b4cd-e765be8f001b', 'description': 'The type of recall invitation sent by Bowel Screening Wales to an individual. Recall invitations can range from suspended, cancelled, continued routine, repeat advised, and etc.', 'name': 'RECALL', 'dataElementsCount': 6, 'dataElements': 'f45c7087-d7f1-4b14-b58e-50718774b9ae, 096b0a7b-933e-42c1-9e8b-f9b94d4b9fcf, 499fb3b3-d1ee-4ee6-908c-40efda69cbac, 7265cd9d-dec1-47a4-ba5a-4852d450b092, b231233a-1504-48e3-bd67-26d7315deb0c, 8ec1ce56-07eb-42e4-a8e1-55638d1191eb'}]}"
"{'title': 'Real-time Assessment of Community Transmission (REACT) Study 2: COVID antibody', 'publisher': {'memberOf': 'ALLIANCE', 'name': 'IMPERIAL COLLEGE LONDON'}, 'contactPoint': 'react.access@imperial.ac.uk', 'keywords': ['SARS-CoV-2, COVID-19, antibody, prevalence, surveillance'], 'abstract': 'REACT-2 is a large-scale national surveillance study in England. It examines the prevalence of antibodies to SARS-CoV-2 in adults the community. Participants complete finger prick self-testing at home (lateral flow immunoassay) and a questionnaire.'}",70656016-c1c9-4bc2-93d1-c66341fcdf36,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'https://www.geonames.org/6269131/england.html, England', 'followup': '0 - 6 MONTHS', 'pathway': 'NOT APPLICABLE', 'typicalAgeRange': '18-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'f9959c00-c063-4fbf-933d-755e3b6ecedc'},"{'description': None, 'isPartOf': 'NOT APPLICABLE'}",f9959c00-c063-4fbf-933d-755e3b6ecedc,https://web.www.healthdatagateway.org/dataset/f9959c00-c063-4fbf-933d-755e3b6ecedc,"{'access': {'accessRequestCost': 'IN PROGRESS', 'accessRights': ['IN PROGRESS'], 'jurisdiction': 'GB-ENG', 'accessService': 'IN PROGRESS', 'dataController': 'Imperial College London'}, 'usage': {'isReferencedBy': ['https://doi.org/10.1101/2020.10.26.20219725'], 'dataUseRequirements': ['COLLABORATION REQUIRED', 'ETHICS APPROVAL REQUIRED', 'GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'USER SPECIFIC RESTRICTION'], 'investigations': ['https://www.imperial.ac.uk/medicine/research-and-impact/groups/react-study/the-react-2-programme/'], 'dataUseLimitation': 'RESEARCH SPECIFIC RESTRICTIONS'}, 'formatAndStandards': {'language': 'en'}}","{'origin': {'collectionSituation': 'HOME', 'purpose': 'STUDY', 'source': ['ELECTRONIC SURVEY', 'OTHER']}, 'temporal': {'startDate': '2020-06-20', 'endDate': '2020-09-28'}}",2021-02-09T14:46:44Z,,0.0.1,,2021-02-09T14:44:04Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': ""Tommy's National Reproductive Health Biobank"", 'abstract': 'Collection of samples and data across the following diseases: Fit and well', 'contactPoint': 'Tommysnationalreproductivehealthbiobank@uhcw.nhs.uk', 'publisher': {'contactPoint': 'Tommysnationalreproductivehealthbiobank@uhcw.nhs.uk', 'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE'}, 'doiName': 'Not Available', 'keywords': ['Fit and well', ""Tommy's National Reproductive Health Biobank"", 'UKCRC Tissue Directory']}",20639743-9a28-43dd-a8af-7571ece2a7f8,"{'typicalAgeRange': '15-150', 'spatial': 'England', 'physicalSampleAvailability': ['TISSUE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': 'eb19fcd9-2e9e-4e27-aa79-ad235952b1ac', '3.0.0': 'f99d82da-13eb-42db-ad0d-348be2173535', '1.0.0': '45895987-fdd9-4479-af2c-8e254d625573', '0.0.1': '8f75d140-deae-4638-be33-8b00d01fa81e', 'latest': 'f99d82da-13eb-42db-ad0d-348be2173535'}","{'description': ""The Tommy's Biobank aims to prospectively collect samples from pregnant and non pregnant women to help research in to pregnancy complications. The biobank has been granted permission to ethically approve research projects conducted in the field of reproductive health. The biobank will bring together six biobanks that will all collect samples of high quality according to the standard operating procedures written by experts in the field of reproductive health. \nWe have obtained approval to collect:\n1-Endometrium\n2-Myometrium\n3-Placenta,cord, cord blood\n4-Urine\n5-Maternal blood\n6-Amniotic fluid\n7-Vaginal Swabs\n8-Omentum\n9-Subcutaneous Fat\nSamples from 1 week old baby\n1-Urine\n2-saliva\n3-Buccal swab\n4-meconium (stool)\n5-Stool\nCurrent Collections:\n1- Myometrium from pregnant women who have undergone caesarean section or have had hysterectomies. \n2-Endometrium from recurrent miscarriage patients (Frozen, FFPE)\n3-DNA ( Whole blood) from recurrent miscarriage patients"", 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",f99d82da-13eb-42db-ad0d-348be2173535,https://web.www.healthdatagateway.org/dataset/f99d82da-13eb-42db-ad0d-348be2173535,"{'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}, 'access': {'dataController': 'University Hospitals Coventry and Warwickshire NHS Trust', 'jurisdiction': 'GB-ENG', 'dataProcessor': 'Not Applicable', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'accessRequestCost': 'Not specified'}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'distributionReleaseDate': '2019-12-16', 'startDate': '2017-01-01'}}",2020-01-13T17:14:16Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T16:14:58Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'PHOENIX DDR-Anti-PD-L1 Trial', 'doiName': 'Not Available', 'publisher': {'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE', 'contactPoint': 'phoenix-icrctsu@icr.ac.uk'}, 'abstract': 'Collection of samples and data across the following diseases: Malignant tumour of breast.', 'keywords': ['PHOENIX DDR', 'Anti-PD-L1 Trial', 'Malignant tumour of breast', 'UKCRC Tissue Directory'], 'contactPoint': 'phoenix-icrctsu@icr.ac.uk'}",df94730b-374b-4d91-8116-1c10a7c77c4e,"{'physicalSampleAvailability': ['IN PROGRESS'], 'typicalAgeRange': 'Not Known', 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '07fcaf47-3c10-42f8-ac3a-2d548b279ebe', '3.0.0': 'f9c40294-92d8-45cd-b11a-70eb0fc09004', '1.0.0': '75cf9568-f1df-46d0-8bed-d5a4a504d3f5', '2.0.0': '3a0599ed-5452-4299-956c-af5a30bbef23', 'latest': 'f9c40294-92d8-45cd-b11a-70eb0fc09004'}","{'description': 'PHOENIX DDR/Anti-PD-L1 Trial: A pre-surgical window of opportunity and post-surgical adjuvant biomarker study of DNA damage response inhibition and/or anti-PD-L1 immunotherapy in patients with neoadjuvant chemotherapy resistant residual triple negative breast cancer.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",f9c40294-92d8-45cd-b11a-70eb0fc09004,https://web.www.healthdatagateway.org/dataset/f9c40294-92d8-45cd-b11a-70eb0fc09004,"{'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}, 'access': {'dataProcessor': 'Not Applicable', 'accessRights': 'Please contact the publisher using Contact Point details provided.', 'accessRequestCost': 'Not specified', 'dataController': 'The Institute of Cancer Research', 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED.', 'jurisdiction': 'GB-ENG'}, 'usage': {'isReferencedBy': ['Not Available'], 'resourceCreator': 'In Progress'}}","{'temporal': {'startDate': '2019-01-01', 'accrualPeriodicity': 'IN PROGRESS', 'distributionReleaseDate': '2018-08-17'}}",2020-01-13T17:16:35Z,,3.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-02-21T16:11:06Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Vascular Registry Audit - Lower Limb Bypass clinical dataset', 'contactPoint': 'datasharing@hqip.org.uk', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d23', 'name': 'HQIP'}, 'abstract': 'The dataset contains continuously ascertained patient-level data for patients undergoing lower limb vascular bypass in NHS hosptials in England, Wales, Scotland and Northern Ireland. It includes information on  referral, indications, pre-procedural investigations and risk scoring, procedural details, post-operative assessment, postoperative pathway, complications, additional unplanned procedures, readmission,  follow up and in-hosptial and 30-day mortality.', 'keywords': ['NVR', 'Vascular', 'Registry', 'Lower', 'Limb', 'Bypass', 'Clinical', '']}",d357be1e-27fe-4b2f-9174-3a2a03ecc12b,"{'followup': 'UNKNOWN', 'typicalAgeRange': '18-100', 'spatial': ['https://www.geonames.org/6269131/england.html\nhttps://www.geonames.org/2634895/wales.html\nhttps://www.geonames.org/2638360/scotland.html'], 'pathway': 'Patients undergoing lower limb bypass/surgical revascularisation procedures in hospitals in the UK that have been entered and submitted onto the National Vascular Registry', 'physicalSampleAvailability': ['NOT AVAILABLE']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '4b289957-6973-4138-96cc-7d45fa815167', '4.0.0': 'fa07a8df-4584-4dc1-87f9-f03ff8d31861', '1.0.0': '3ca37067-3842-4bb0-9908-0dc0c03feb10', '2.0.0': '47bec08b-57b7-450e-9be7-af19bab99b58', '3.0.0': '5bc2bdf4-4b80-437c-bd83-04acbac82b2d', 'latest': 'fa07a8df-4584-4dc1-87f9-f03ff8d31861'}","{'description': 'The dataset contains continuously ascertained patient-level data for patients undergoing lower limb vascular bypass in NHS hospitals in England, Wales, Scotland and Northern Ireland. It includes information on referral, indications, pre-procedural investigations and risk scoring, procedural details, post-operative assessment, postoperative pathway, complications, additional unplanned procedures, readmission, follow up and in-hospital and 30-day mortality.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",fa07a8df-4584-4dc1-87f9-f03ff8d31861,https://web.www.healthdatagateway.org/dataset/fa07a8df-4584-4dc1-87f9-f03ff8d31861,"{'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'format': ['.CSV\n.xlsx'], 'language': ['en']}, 'access': {'accessRights': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data\nhttps://www.vsqip.org.uk/about-us/accessing-nvr-data/'], 'dataProcessor': 'Royal College of Surgeons of England', 'accessRequestCost': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data\nhttps://www.vsqip.org.uk/about-us/accessing-nvr-data/'], 'jurisdiction': ['GB-EA'], 'deliveryLeadTime': 'VARIABLE', 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England'}, 'usage': {'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['NO RESTRICTION'], 'resourceCreator': ['Data has been provided by the Healthcare Quality Improvement Partnership from the National Vascular Registry']}}","{'temporal': {'timeLag': 'VARIABLE', 'accrualPeriodicity': 'CONTINUOUS', 'startDate': '2014-01-01'}, 'origin': {'purpose': ['AUDIT'], 'source': ['ELECTRONIC SURVEY'], 'collectionSituation': ['IN-PATIENTS']}}",2020-01-13T14:55:20Z,"[{'observedNode': 'EVENTS', 'measuredValue': 18090, 'disambiguatingDescription': 'number of lower limb bypass procedures submitted to the audit in 2017-2019', 'observationDate': '12/11/2020', 'measuredProperty': 'Count'}]",4.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Data linked with that from other custodians may be available', 'but the release of linked data will be subject to 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Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.', 'accessRights': ['https://saildatabank.com/application-process/'], 'deliveryLeadTime': '2-6 MONTHS', 'dataProcessor': 'SAIL Databank', 'accessRequestCost': 'Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.'}, 'usage': {'isReferencedBy': ['Johns et al., (2017); Effect of population breast screening on breast cancer mortality up to 2005 in England and Wales: an individual-level cohort study. https://www.nature.com/articles/bjc2016415'], 'dataUseLimitation': 'GENERAL RESEARCH USE', 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'resourceCreator': ['Public Health Wales NHS Trust']}, 'formatAndStandards': {'conformsTo': 'LOCAL', 'vocabularyEncodingScheme': 'LOCAL', 'format': ['SQL database table'], 'language': 'en'}}","{'temporal': {'startDate': '1989-02-01', 'accrualPeriodicity': 'BIANNUAL', 'endDate': '2018-01-29', 'timeLag': '2-6 MONTHS', 'distributionReleaseDate': '2018-01-29'}, 'origin': {'collectionSituation': 'CLINIC', 'source': 'EPR', 'purpose': ['STUDY', 'CARE', 'AUDIT', 'ADMINISTRATIVE', 'FINANCIAL']}}",2020-01-13T14:47:27Z,,4.0.0,"{'qualifiedRelation': ['Yes. 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Data available from the end of October 2008 onwards.', 'name': 'ACTION', 'dataElementsCount': 6, 'dataElements': 'e87d33d9-394a-4561-93f3-533247952cd5, 814e690a-86c5-4d7e-a437-27cfea26a3d9, a1ff3141-b7cc-4fa9-8af3-7758051f15f3, a118b607-22d1-4411-921d-95242421d568, 722463f4-387c-4b91-9b85-61c8d9ad189e, 43351396-660a-463f-9fbb-2b8dccd9f88c'}, {'id': '572c543b-fa84-415e-880a-a38fff8a9be4', 'description': 'Denotes the type of breast cancer detected during assessment[s].', 'name': 'CAN', 'dataElementsCount': 6, 'dataElements': 'f031e02e-b98e-4f6a-8c31-d008349d4cbf, 929878c7-5488-4957-9c55-5332a6e3a8fa, 4f7f81f7-59ef-4468-bbcf-71882aa3bb50, 3d8692c7-1916-4605-9d9a-3e0b728e5f87, 8d4135da-1a7b-42d5-b865-eb533748d313, 9fb903de-d9b4-456b-921e-46a3f7d0d17a'}, {'id': '9f7a7d91-b3d1-416a-8ca8-ed1742d3ba7a', 'description': 'This identifies the origin of referral/treatment, e.g. the kind of facility - NHS, clinic, or otherwise.', 'name': 'SOURCE', 'dataElementsCount': 6, 'dataElements': '1cca8896-610d-425b-979c-a51002700edc, 2ac4b5f3-6c2a-4028-8500-9b748a0ae296, 61a673fa-4147-427b-9811-7344b971892a, 82730e84-9213-4127-b440-69dc2fd3c0a7, 06d9a7a9-dd4f-4755-8550-54fef334e0b3, 25219983-230b-4029-9da3-c772c839ae5c'}, {'id': '97436f24-40a8-4b23-b712-7034742978ea', 'description': 'The type of recall invitation sent by Breast Test Wales to an individual. 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"{'title': 'Idiopathic Pulmonary Fibrosis (IPF) Genome-wide Association Study', 'publisher': {'name': 'BREATHE', 'memberOf': 'HUB', 'contactPoint': 'breathe.saildatabank@swansea.ac.uk'}, 'contactPoint': 'breathe.saildatabank@swansea.ac.uk', 'abstract': 'Meta-analysis of GWAS of IPF susceptibility. Building up on published GWAS results (PMID: 24429156, 23583980, 29066090) and novel study samples to identify novel genes and further advance in the understanding of IPF pathogenesis and risk.', 'doiName': '10.1164/rccm.201905-1017OC', 'keywords': ['GWAS', 'IDIOPATHIC PULMONARY FIBROSIS', 'IDIOPATHIC INTERSTITIAL PNEUMONIA', 'IPF', 'BREATHE']}",b850e56c-5c5b-413e-b829-743772053978,"{'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'United Kingdom, United States of America'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '492c9be3-7745-4670-a74d-66d516414a53', '4.0.0': 'fb50af29-4aa6-4071-9300-bd2d57c850b0', '2.0.0': '0a0b0779-2d76-461d-9621-be54c3a3e98a', '1.0.0': '024cb735-946c-4dde-8475-0515114c6487', '3.0.0': '24b82645-1854-438a-97b2-911bba469d3d', 'latest': 'fb50af29-4aa6-4071-9300-bd2d57c850b0'}","{'description': 'https://doi.org/10.1164/rccm.201905-1017OC \n\nIdiopathic pulmonary fibrosis (IPF) is characterized by the build-up of scar tissue in the lungs. It is believed that the damage to the alveolar epithelium is followed by an aberrant wound healing response leading to the deposition of dense fibrotic tissue, reducing the lungs’ flexibility and inhibiting gas transfer. IPF still has limited therapeutic interventions and a high mortality rate within 3-5 years from diagnosis. To date, genome-wide association studies (GWAS) of IPF susceptibility have associated common variants (minor allele frequency [MAF]>5%) near genes involved in host defence, telomere maintenance, cell-cell adhesion and signalling in disease susceptibility. \nMeta-analysis of GWAS of IPF susceptibility. Building up on published GWAS results (PMID: 24429156, 23583980, 29066090) and novel study samples, we have performed the largest GWAS of IPF susceptibility to date to identify novel genes and further advance in the understanding of IPF pathogenesis and risk (bioRxiv https://doi.org/10.1101/636761 and PMID:31710517). The discovery stage of the study comprised up to 2,668 IPF cases and 8,591 controls from 3 studies (Chicago study: 541 IPF cases and 542 controls, Colorado study: 1515 fibrotic Idiopathic Interstitial pneumonia cases and 4683 controls, UK Study: 612 IPF cases and 3366 controls)  and replication was pursued in an additional 1,456 IPF cases and 11,874 controls. The genome-wide association study summary statistics from the meta-analysis of three studies totalling  2,668 cases and 8,591 controls are available here.', 'isPartOf': 'No Group'}",fb50af29-4aa6-4071-9300-bd2d57c850b0,https://web.www.healthdatagateway.org/dataset/fb50af29-4aa6-4071-9300-bd2d57c850b0,"{'usage': {'resourceCreator': 'Department of Health Sciences, University of Leicester, UK', 'isReferencedBy': ['Allen et al PMID: 31710517, https://www.biorxiv.org/content/10.1101/636761v1']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'language': ['en'], 'conformsTo': ['LOCAL'], 'format': ['Tab delimited text']}, 'access': {'jurisdiction': 'GB', 'accessRights': 'https://github.com/genomicsITER/PFgenetics', 'dataProcessor': 'Department of Health Sciences, University of Leicester, UK', 'deliveryLeadTime': 'OTHER', 'accessRequestCost': 'No cost to access full GWAS Summary statistics (https://github.com/genomicsITER/PFgenetics)', 'dataController': 'Department of Health Sciences, University of Leicester, UK'}}","{'temporal': {'accrualPeriodicity': 'STATIC', 'endDate': '2019-10-22', 'distributionReleaseDate': '2019-10-22', 'startDate': '2019-05-14'}}",2020-01-13T15:51:51Z,,4.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Not Available']}",2021-04-14T08:25:24Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'NHS Tayside and Fife Immunology', 'publisher': {'name': 'HEALTH INFORMATICS CENTRE - UNIVERSITY OF DUNDEE', 'memberOf': 'ALLIANCE', 'identifier': '607db9c4e1f9d3704d570d1f'}, 'contactPoint': 'hicsupport@dundee.ac.uk', 'abstract': 'NHS Tayside and NHS Fife laboratory data.', 'keywords': ['Immunology ', 'HIC', 'Tayside', 'Fife', 'NHS', 'Scotland']}",39055449-c074-4b58-adb2-b1c0d2441c4d,"{'spatial': ['https://www.geonames.org/2636157/tayside-region.html', 'http://www.geonames.org/2649469/fife.html'], 'followup': 'UNKNOWN', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'fb65ff7c-fc02-402e-ab55-59765d7b0d43'},"{'description': 'This data is provided in a format based upon the SCI-Store system. SCI-Store is a data repository which retains patient laboratory test result information at a health board level. Data prior to 2007 for Tayside has been transformed to fit this structure.  Fife data starts in 2005 and all originates from SCI-Store. There is earlier data available for Fife.', 'isPartOf': 'University of Dundee Health Informatics Centre'}",fb65ff7c-fc02-402e-ab55-59765d7b0d43,https://web.www.healthdatagateway.org/dataset/fb65ff7c-fc02-402e-ab55-59765d7b0d43,"{'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'dataUseRequirements': ['DISCLOSURE CONTROL'], 'resourceCreator': ['NHS Tayside and Fife']}, 'access': {'deliveryLeadTime': '2-4 WEEKS', 'accessService': 'HIC has implemented a remote-access Trusted Research Environment to protect data confidentiality, satisfy public concerns about data loss and reassure Data Controllers about HIC’s secure management and processing of their data.\n\nData is not released externally to data users for analysis on their own computers but placed on a server at HIC, within a restricted, secure IT environment, where the data user is given secure remote access to carry out their analysis.\n\nFull details are available via the following link:\nhttps://www.dundee.ac.uk/hic/hicsafehaven/', 'dataController': 'Local NHS boards', 'dataProcessor': 'University of Dundee, Health Informatics Centre', 'accessRights': ['https://www.dundee.ac.uk/hic/governanceservice/'], 'jurisdiction': ['GB-SCT'], 'accessRequestCost': ['Quotation available on request']}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'vocabularyEncodingScheme': ['LOCAL'], 'format': ['CSV,Database']}}","{'temporal': {'accrualPeriodicity': 'MONTHLY', 'timeLag': '1-2 WEEKS', 'startDate': '1999-01-02', 'distributionReleaseDate': '2021-09-14'}, 'origin': {'source': ['LIMS'], 'collectionSituation': ['SERVICES'], 'purpose': ['CARE']}}",2021-11-19T15:54:23Z,"[{'observedNode': 'PERSONS', 'measuredValue': '385000', 'disambiguatingDescription': '385,000 patients in the dataset', 'observationDate': '14/09/2021', 'measuredProperty': 'Count'}, {'observedNode': 'EVENTS', 'measuredValue': '2936000', 'disambiguatingDescription': '2,936,000 records in the dataset', 'observationDate': '11/11/2021', 'measuredProperty': 'Count'}]",4.0.0,,2021-11-19T15:54:23Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 20, 'structuralMetadata.columnName': 20, 'structuralMetadata.columnDescription': 20, 'structuralMetadata.dataType': 20, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '3be7af77-846a-48ae-adee-d0c8e78405d7', 'description': 'This data is provided in a format based upon the SCI-Store system. This is a complex dataset which is supplied in a hierarchical form, this extract is a flattening of that hierarchy by HIC.', 'name': 'Immunology (Extractable Immunology)', 'dataElementsCount': 20, 'dataElements': 'dbce2308-19fa-4328-83c8-698a4030ac02, 7901592d-046c-491c-88b5-713935c48cb3, 5e76b761-8649-4eea-b069-8c7d9333131c, f019e82c-adec-42cc-a6c0-b92cbf666d00, 6d35aeaf-32aa-4161-9004-c060072808b2, 08f79a11-e4bf-4749-b6dc-e2bee8941bfb, 2f872f82-76d5-4e3a-bebb-5069c9d1b2a9, a160d95d-28b1-40ca-a347-2b9e52a455a3, 72c9a633-96f6-4399-a0f6-10c1c5ed3516, 42d558ad-c203-4c7b-9cd6-e9c3a34ee81a, 7b6574b5-677a-43d4-a9de-58155a17e669, c358769a-fdeb-4357-bd67-df92d0a14925, 5a52734d-7975-438b-bc1e-5c9b13065759, cec7b084-7523-4244-885a-0699e9cad2a0, 5ddabec1-f657-4351-9b3a-ee2f00ba0e2f, 787eb6d7-4086-4bf4-8eba-05230e9c0952, 1dc8203f-e24e-4f2c-aa0d-e334204657f2, 41234f64-60fb-475e-9beb-3bba7e5fe440, 53f199ea-eee0-487d-8d3e-adb6a23f1450, 2e5340bb-4cb7-4ba9-8ca5-ffb2e78ad154'}]}"
"{'title': 'Asymptomatic COVID-19 in Education (ACE) Cohort', 'contactPoint': 'mbzmab2@exmail.nottingham.ac.uk', 'keywords': 'COVID-19,Asymptomatic,Immunity,CO-CONNECT,National Core Study,NCS', 'publisher': {'identifier': '607db9c6e1f9d3704d570d93', 'name': 'UNIVERSITY OF NOTTINGHAM', 'memberOf': 'ALLIANCE'}, 'abstract': 'A cohort of students and staff who have consented for research from the Universities of Nottingham, Cambridge and Cardiff.'}",48adf432-9b66-4d03-a25e-008fbbb24f56,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'fba3b66d-8d3a-473f-bb3d-537a6ab1fa7a'},"{'description': 'The beginning of the\xa02020/2021\xa0academic year across UK universities was followed by a sharp increase in the COVID-19 infection rates in a largely asymptomatic student population,\xa0which\xa0could only be monitored thanks to the decision of some Higher Education providers to establish in-house asymptomatic testing facilities. These services ran in parallel to UK Government’s surveillance efforts, which in turn relied mostly on self-referred symptomatic cases.\n\nAppreciating\xa0the untapped potential contained in these highly\xa0controlled cohorts, the University of Nottingham, The University of Cambridge and Cardiff\xa0University\xa0created asymptomatic services with consent to research\xa0and future contact\xa0embedded in\xa0the sample collection workflow.\xa0Given the regional, demographic and living arrangements differences within and across these three universities,\xa0this consortium provides a\xa0unique opportunity to\xa0systematically collect samples and data that will prove invaluable in\xa0understanding\xa0the development of immunity against SARS-CoV2,\xa0through\xa0past and future immunological profile in\xa0this population. It will also\xa0enable\xa0studies on\xa0still underappreciated aspects of the infection, such as the impact of virus mutation on the development of the immune response.\n\nWe have created a national data asset that adds value to existing activities\xa0that is\xa0underpinned by consent\xa0and that\xa0adds value to existing\xa0national\xa0activities\xa0in this space. This new, diverse and rich\xa0collection\xa0is being constructed by coordinating existing programmes across\xa0the\xa0University of Nottingham, University of Cambridge and Cardiff University,\xa0bringing consistency to data collection and generation. Such\xa0an\xa0approach will bring to the fore data that would otherwise reside outside of the national data reporting and Pillar testing data flows\xa0but where there are also opportunities to link data with Test and Trace pillar two outcomes.\xa0The result will be a unique resource of to date (pre-Christmas and January mass testing) 30,000 individuals completing asymptomatic SARS-COV2 screening with underlying consent for research.'}",fba3b66d-8d3a-473f-bb3d-537a6ab1fa7a,https://web.www.healthdatagateway.org/dataset/fba3b66d-8d3a-473f-bb3d-537a6ab1fa7a,"{'usage': {'dataUseLimitation': 'NO RESTRICTION', 'dataUseRequirements': 'ETHICS APPROVAL REQUIRED', 'resourceCreator': 'University of Nottingham'}, 'access': {'dataController': 'The University of Nottingham, The University of Cambridge, The University of Cardiff', 'jurisdiction': 'GB-ENG,GB-WLS', 'accessRights': 'https://www.nottingham.ac.uk/'}, 'formatAndStandards': {'vocabularyEncodingScheme': 'SNOMED CT', 'format': 'OMOP', 'language': 'en', 'conformsTo': 'OMOP'}}","{'temporal': {'distributionReleaseDate': '2020-01-01', 'accrualPeriodicity': 'MONTHLY', 'timeLag': '1-2 MONTHS', 'startDate': '2020-10-01'}}",2021-04-23T15:12:45Z,"[{'observedNode': 'PERSONS', 'measuredValue': '30000', 'observationDate': '23/04/2021', 'measuredProperty': 'Count'}]",1.0.0,,2021-06-04T09:50:17Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Asthma and COPD Audit Programme (NACAP): secondary care workstream – children and young people asthma (clinical)', 'publisher': {'name': 'HQIP', 'contactPoint': 'DataSharing@hqip.org.uk', 'memberOf': 'ALLIANCE'}, 'keywords': ['Asthma', 'Secondary Care workstream', 'COPD', 'Clinical', 'Children and Young People', 'NACAP', 'Audit'], 'abstract': 'A continuously ascertained, record level dataset of paediatric patients aged 1-18 years admitted to hospital in England, Wales and Scotland since June 2019 with an asthma attack.', 'contactPoint': 'DataSharing@hqip.org.uk'}",33b36393-3760-40d8-bb98-61806fea5398,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'd17e56b1-9060-43db-94ec-6380db1e906b', '4.0.0': 'fbb5d74c-802a-4888-9452-3e0faf257f82', '1.0.0': 'b7da967e-d959-4ea7-ba3f-3d64817f63aa', '2.0.0': '43f4370d-611c-4e40-ba73-b22781536594', '3.0.0': '278c3fb2-6b1e-46db-a529-9fc7ddaf4461', 'latest': 'fbb5d74c-802a-4888-9452-3e0faf257f82'}","{'description': 'A continuously ascertained, record level dataset of paediatric patients aged 1-18 years admitted to hospital in England, Wales and Scotland since June 2019 with an asthma attack.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",fbb5d74c-802a-4888-9452-3e0faf257f82,https://web.www.healthdatagateway.org/dataset/fbb5d74c-802a-4888-9452-3e0faf257f82,"{'access': {'jurisdiction': 'GB-GBN', 'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data\nhttps://www.rcplondon.ac.uk/projects/outputs/national-asthma-and-copd-audit-programme-nacap-resources', 'deliveryLeadTime': 'OTHER'}, 'formatAndStandards': {'language': ['en']}}",,2020-01-13T14:55:16Z,,4.0.0,,2021-04-14T08:13:26Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'National Vascular Registry Audit Carotid Endarterectomy Clinical Dataset', 'abstract': 'The dataset contains continuously ascertained patient-level data for patients undergoing carotid endarterectomy. It includes referral, pre-procedural investigations and risk scoring, procedural details,  follow up and in-hospital and 30-day mortality.', 'publisher': {'memberOf': 'ALLIANCE', 'contactPoint': 'DataSharing@hqip.org.uk', 'name': 'HQIP'}, 'contactPoint': 'DataSharing@hqip.org.uk', 'keywords': ['Carotid', 'NVR', 'Clinical', 'Endarterectomy', 'Registry', 'Vascular']}",f857055b-c29e-4c7f-99ce-65f4ed59648e,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'e2bd3328-1d7f-43c8-8c13-5be755e4b900', '4.0.0': 'fc08ad6a-3e94-44db-a122-945c4c875616', '1.0.0': '580b1886-3f9e-4a93-ae33-8c67c993e7ef', '3.0.0': 'ddc965e7-6f52-4eed-bed5-657e3e7bbeac', '2.0.0': '4e3f5d6a-0457-4ab5-9311-fbd99086a22b', 'latest': 'fc08ad6a-3e94-44db-a122-945c4c875616'}","{'description': 'The dataset contains continuously ascertained patient-level data for patients undergoing carotid endarterectomy in NHS hospitals in England, Wales, Scotland and Northern Ireland. It includes referral, pre-procedural investigations and risk scoring, procedural details, follow up and in-hospital and 30-day mortality.', 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",fc08ad6a-3e94-44db-a122-945c4c875616,https://web.www.healthdatagateway.org/dataset/fc08ad6a-3e94-44db-a122-945c4c875616,"{'access': {'jurisdiction': 'GB-GBN', 'deliveryLeadTime': 'OTHER', 'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'}, 'formatAndStandards': {'language': ['en']}}",,2020-01-13T14:55:19Z,,4.0.0,,2021-04-14T08:15:25Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Systemic Anti-Cancer Treatment (SACT) data for CPRD GOLD', 'abstract': 'CPRD GOLD linked Systemic Anti-Cancer Treatment (SACT) data contain chemotherapy treatment details, including regime and outcomes, for solid tumour and haematological malignancies treated in England.', 'keywords': ['Cancer Treatment', 'SACT'], 'publisher': {'name': 'CPRD', 'memberOf': 'ALLIANCE', 'identifier': '607db9c2e1f9d3704d570cee'}, 'doiName': 'https://doi.org/10.48329/4jwp-4951', 'contactPoint': 'enquiries@cprd.com'}",014e7973-b43e-4a4a-91b4-de3f353b71b9,"{'followup': '1 - 10 YEARS', 'typicalAgeRange': '0-115', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Cancer registration data are collected from a range of health care provider systems and other services.', 'spatial': ['https://www.geonames.org/6269131/england.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'5.0.0': '81a2abb5-e2b4-4224-8345-5aac1dc68a5d', '6.0.0': 'fc4b3dea-b56b-4beb-87f0-921fb9d8836a', '4.0.0': '6a8066c7-a8f4-44a6-9efd-871b19a3689f', '3.0.0': '68d35380-5a0e-4558-9cba-03136ad4a5d4', '2.0.0': '1d2c5d91-1c7f-4466-a741-6d094a5d2f09', '1.0.0': '115fe0c2-809f-4805-9dae-f36039d95385', '0.0.1': '685e5d44-0362-4640-86d4-1720e80bc71f', 'latest': 'fc4b3dea-b56b-4beb-87f0-921fb9d8836a'}","{'description': 'CPRD GOLD linked Systemic Anti-Cancer Treatment (SACT) data covers chemotherapy treatment for all solid tumour and haematological malignancies, including those in clinical trials. Information is included about programme and regime of treatment, and the outcome for each treatment.', 'associatedMedia': ['https://www.cprd.com/linked-data'], 'isPartOf': 'CPRD GOLD'}",fc4b3dea-b56b-4beb-87f0-921fb9d8836a,https://web.www.healthdatagateway.org/dataset/fc4b3dea-b56b-4beb-87f0-921fb9d8836a,"{'formatAndStandards': {'vocabularyEncodingScheme': ['ICD10', 'ICDO3', 'OPCS4'], 'language': ['en'], 'format': ['Tab delimited text'], 'conformsTo': ['NHS DATA DICTIONARY']}, 'usage': {'dataUseRequirements': ['GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'NO LINKAGE', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'isReferencedBy': ['Bright CJ,Lawton S,Benson S,Bomb M,Dodwell D,Henson KE,McPhail S,Miller L,Rashbass J,Turnbull A,Smittenaar R. Data Resource Profile: The Systemic Anti-Cancer Therapy (SACT) Dataset. International Journal of Epidemiology,dyz137.'], 'investigations': ['https://www.cprd.com/protocol-list'], 'resourceCreator': ['Public Health England (PHE) via the National Cancer Registration and Analysis Service (NCRAS)']}, 'access': {'accessRights': ['HTTPS://CPRD.COM/DATA-ACCESS'], 'accessRequestCost': ['https://www.cprd.com/pricing'], 'deliveryLeadTime': 'VARIABLE', 'dataProcessor': 'CPRD', 'dataController': 'Clinical Practice Research Datalink (CPRD)', 'accessService': 'Access to CPRD data, including UK Primary Care Data, and linked data such as Hospital Episode Statistics, is subject to protocol approval via CPRD’s Research Data Governance (RDG) Process. Independent scientific and patient advice is provided by Expert Review Committees (ERCs) and the Central Advisory Committee (CAC): https://www.cprd.com/research-applications', 'jurisdiction': ['GB-ENG']}}","{'temporal': {'endDate': '2018-12-31', 'timeLag': 'MORE 6 MONTHS', 'distributionReleaseDate': '2021-09-06', 'startDate': '2014-01-01', 'accrualPeriodicity': 'QUARTERLY'}, 'origin': {'purpose': ['CARE', 'DISEASE REGISTRY'], 'source': ['EPR'], 'collectionSituation': ['CLINIC', 'COMMUNITY', 'IN-PATIENTS', 'OUTPATIENTS']}}",2020-01-10T18:12:16Z,"[{'observedNode': 'PERSONS', 'measuredValue': 901965, 'disambiguatingDescription': 'Number of CPRD GOLD patients matched to a single cancer identifier', 'observationDate': '06/09/2021', 'measuredProperty': 'Count'}]",6.0.0,"{'tools': ['[]'], 'derivation': ['N/A'], 'qualifiedRelation': ['CPRD GOLD', 'CPRD GOLD SGSS', 'CPRD GOLD CHESS', 'CPRD GOLD ICNARC', 'Death Registration data for CPRD GOLD', 'HES Admitted Patient Care data for CPRD GOLD', 'HES Outpatient data for CPRD GOLD', 'HES Accident and Emergency data for CPRD GOLD', 'HES Diagnostic Imaging Dataset for CPRD GOLD', 'Patient postcode linked deprivation measures for CPRD GOLD', 'Practice postcode linked deprivation measures for CPRD GOLD', 'Rural-Urban classification for CPRD GOLD', 'Cancer registration data for CPRD GOLD', 'National Radiotherapy Dataset (RTDS) for CPRD GOLD', 'Mental Health Dataset (MHDS) for CPRD GOLD', 'Mother-Baby Link for CPRD GOLD', 'Pregnancy Register for CPRD GOLD']}",2022-02-18T11:57:15Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 5, 'structuralMetadata.tableName': 5, 'structuralMetadata.tableDescription': 5, 'structuralMetadata.dataElementsCount': 55, 'structuralMetadata.columnName': 55, 'structuralMetadata.columnDescription': 55, 'structuralMetadata.dataType': 55, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '3d4dfa90-4160-4d32-bbd0-8c4ea845ba49', 'description': 'One row per patient', 'name': 'Patient', 'dataElementsCount': 10, 'dataElements': '17599488-d4c6-4dcb-84a1-4b0d57b1c3ac, 572ad172-cd2b-45a4-9df8-ade3f87cc674, 62ebc865-f454-4830-bd13-9f9b2f565cbb, 64667453-e1c4-4138-80cd-d769395b292d, 034729a9-2db0-46c1-ab68-d40d491f5741, f2f12f05-3256-422f-b556-6650603a7cf1, b73d2944-1860-4817-b162-bfd64a87fd34, c79a3fcd-8b29-483f-8261-b462f79d1833, dd62ae0d-2dd2-4259-b702-1deda311b3d4, 5480bb8f-e102-49a5-8656-b06fbda36c26'}, {'id': 'cde05121-6ab3-4f34-bfd8-2455d23b8bb2', 'description': 'Outcome', 'name': 'Outcome', 'dataElementsCount': 9, 'dataElements': '867ba334-ce1f-46fa-ad06-2f00b59a2864, ee0d69af-0afc-42cf-bb78-3a70bafb15a8, fbb9de37-8791-495a-9a02-88716ac1a991, eea7baaf-81f7-4951-8096-4d34a4e60e9b, 8d2b8579-1efd-405a-aaf8-4e6f64419861, 08e97245-0a62-45ee-a7f1-5d0dcdd9b2bf, 9c1b064b-99b5-44bd-939f-e3d1f61fbe1e, e2ebf1c9-4ff2-4eed-a2c4-6b82ca82ad10, d2442bf1-4699-4b5e-b220-20bff13381d8'}, {'id': 'd886ede1-e28e-4cb5-8fee-ebad29675a79', 'description': 'Cycle', 'name': 'Cycle', 'dataElementsCount': 9, 'dataElements': '7fa2776e-a0c7-4e52-aa36-f9682d3c1646, be42d8e1-bf31-4380-a663-f1241123743a, e2cbbe98-1ea6-4b85-b386-792c2a3d89a3, 85554133-12ec-4c45-bcf9-78ac49b5e6e2, 697f376a-30c2-4df4-9dfe-535adecaf44e, ac728811-b97f-4635-8b9f-3b88d682532e, 881523f4-a5db-473b-bbc7-380415b623c6, 4eaa99ad-5ba4-4a02-a639-eb6731e0d435, 2bbedeb0-de17-4e0f-8a86-e87142cd1280'}, {'id': '2217f1c8-e094-4054-9c42-8dcecc32131d', 'description': 'Programme and Regimen', 'name': 'Programme and Regimen', 'dataElementsCount': 17, 'dataElements': '5d0ae685-3cdf-4e67-81f5-126013adae3e, 758a9b37-a780-4d65-94a7-c76cbf83ca9e, 3ce0d41f-0e46-4dc3-94d6-403002fdc7ef, 04429c19-31d3-4036-a927-7664c25fd824, 455f82ab-0653-4983-93b7-eb1bb155599f, dfc5e8ab-488d-43a7-b9b5-5cf5a4d259ec, 2f0a8284-f743-4fff-bb8e-06c8518296bb, 600a2f22-ce87-4d99-a928-45f155543d20, 93874dee-a3ab-4cc4-9aff-a8da25674573, 6aaef879-efa9-424a-9cd7-8467177f62b4, c0fa9a53-03e2-4cd9-acf4-cc0048b2f432, 1c973fe1-84dc-4ec8-a2e1-6c4dd2640931, e609b600-18d2-43d2-adb4-e9c3628d3653, d1ec6d4a-e60a-4fe8-b8dc-c53393b49662, 54849107-0651-42bf-942e-8e76fdc18ce7, c78b5482-6a15-407f-bfb6-738fa003ba0c, 6ef51b92-0171-417e-9beb-d62d83e66cf3'}, {'id': '69727f5c-1020-411b-9d05-6e9e723218a1', 'description': 'Drug detail', 'name': 'Drug detail', 'dataElementsCount': 10, 'dataElements': '16938974-0799-4ac2-a2a8-57fb18574f48, 00b94520-4da2-4ba1-bf66-808b1a898312, c57a9c63-dc55-416a-993c-13c7da6b23b0, 9409a96b-a8a3-4aaf-b367-b8a39747d4fd, a68c7997-8491-46b2-afc8-4377da187d4b, 31cbdc03-e521-4bfb-a6cf-b3860e45a568, fc19710b-5fc5-4ec4-a057-a96e409b84a6, bd260907-a8d5-40d2-85a1-292b081f661c, d282cc92-9b75-478a-986d-eb69586e1a9c, f8f67f66-0228-46ac-a89e-26e91c6f36ae'}]}"
"{'title': 'North West London High Cost Drugs Data (NWL HCD)', 'abstract': 'The NWL HCD linked table are a number of high cost drugs that are excluded from the Payment by Results (PbR) tariff. They are typically specialist and are delivered to patients within NWL. The data includes details such as drug name, quantity and dosage.', 'publisher': {'memberOf': 'HUB', 'contactPoint': 'researchers@registerfordiscover.org.uk', 'name': 'DISCOVER NOW'}, 'doiName': 'In Progress', 'keywords': ['High Cost Drugs', 'HCD', 'Discover-NOW', 'Integrated Care', 'Pathway', 'Real World data', 'Linked longitudinal'], 'contactPoint': 'researchers@registerfordiscover.org.uk'}",75638d2c-556a-46b6-afcc-7ab425b34679,"{'typicalAgeRange': '0-150', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'This dataset contains information related to all patients prescribed high cost drugs in hospital. Every patient is identified by an unique patient key that can be used to link to other Discover-NOW datasets to derive the patient pathway', 'spatial': 'NHS Brent CCG; NHS Central London CCG; NHS Ealing CCG; NHS Hammersmith &Fulham CCG; NHS Harrow CCG; NHS Hillingdon CCG; NHS Hounslow CCG; NHS West London CCG', 'followup': '> 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': '1c850959-02e9-4ba0-9615-311343e580e5', '5.0.0': 'fc704af0-368b-4dd0-866f-753b6d1dccf8', '3.0.0': '3932ee85-69cb-414a-b4a0-b763010d90a5', '4.0.0': 'b14a19db-f3fd-4298-93e9-9732d99d8ee9', '1.0.0': '8202cfd0-9b9c-4cbd-a4d7-aafb7846129f', '0.0.1': '0e7090dc-a8e1-4030-ba54-4c21e398fd0b', 'latest': 'fc704af0-368b-4dd0-866f-753b6d1dccf8'}","{'description': 'The purpose of the Drugs Patient Level Contract Monitoring (DrPLCM) is to enable the interchange, in a uniform format, of monthly patient level drug contract monitoring data between commissioners and providers of healthcare. This will ensure that contract monitoring and reporting is consistent and comparable across all commissioning organisations and their footprints.', 'associatedMedia': ['https://imperialcollegehealthpartners.com/discover-now/north-west-london-covid-19-data-repository/', 'https://www.nwlondonccgs.nhs.uk/professionals/whole-systems-integrated-care-wsic-dashboards-and-information-sharing/information-de-identified-users'], 'isPartOf': 'SLAM'}",fc704af0-368b-4dd0-866f-753b6d1dccf8,https://web.www.healthdatagateway.org/dataset/fc704af0-368b-4dd0-866f-753b6d1dccf8,"{'access': {'accessRights': ['https://imperialcollegehealthpartners.com/discover-now/nwl-covid-data-access/'], 'jurisdiction': 'GB', 'accessRequestCost': 'In Progress', 'accessService': ""Researchers will have access to a VDI environment with a specific username and password. The researchers will get access to the datasets that is present in the hub's catalogue and would be able to carry out their research within the safe haven. There are restrictions applied which prevents the researchers from taking data out of the safe haven, once the research/analysis is completed the admin team will need to be contacted for taking the analysis off the safe haven"", 'dataProcessor': 'NHS BRENT CCG', 'dataController': 'Joint data controller model across North West London', 'deliveryLeadTime': '1-2 MONTHS'}, 'formatAndStandards': {'format': ['Excel', 'SQL', 'Tableau', 'R'], 'language': 'en', 'vocabularyEncodingScheme': 'LOCAL', 'conformsTo': 'LOCAL'}, 'usage': {'dataUseLimitation': 'NO RESTRICTION', 'investigations': ['https://www.registerfordiscover.org.uk/researchers/discover-for-researchers-and-industry'], 'isReferencedBy': ['Bottleet al. 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"{'title': 'National Bowel Cancer Audit - clinical dataset', 'abstract': 'A continuous, record-level dataset of hospital treatment and outcomes of patients with bowel cancer in England and Wales, including patient and tumour characteristics, route to diagnosis, diagnosis, treatment, length of stay, complications and outcomes.', 'publisher': {'identifier': '607db9c4e1f9d3704d570d23', 'name': 'HQIP', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'DataSharing@hqip.org.uk', 'keywords': ['Audit', 'NBOCA', 'Bowel', 'Cancer', 'Clinical', 'Colon']}",c8a28f0b-a5f8-4dbb-8d71-5b89c7cb3111,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'pathway': 'Covers pathway from diagnosis to 3 months after surgery', 'typicalAgeRange': '18-150', 'spatial': ['https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html'], 'followup': '0 - 6 MONTHS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '37911195-06ee-492f-91f6-23134fd69e9c', '5.0.0': 'fc7ea07b-d60f-4be9-a840-89b17d4c2414', '1.0.0': '50207da5-3679-4c79-ab37-41ac4174058b', '2.0.0': 'f3fb2fc8-e51e-4bf2-bfe1-a62e60bf5ca7', '3.0.0': '9a4ef776-6b4b-40cd-9c88-cbf1128780e9', '4.0.0': 'c72b9078-4d9a-4bfd-95b3-98d96e235e2a', 'latest': 'fc7ea07b-d60f-4be9-a840-89b17d4c2414'}","{'description': 'A continuously ascertained, record-level dataset of the hospital treatment and outcomes of patients with bowel cancer in England and Wales. Data include information on the patient and tumour characteristics, the route to diagnosis, diagnosis, treatment, length of stay, complications and outcomes.', 'associatedMedia': ['https://www.hqip.org.uk/a-z-of-nca/national-bowel-cancer-audit/#.YL8iaPlKiUk'], 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",fc7ea07b-d60f-4be9-a840-89b17d4c2414,https://web.www.healthdatagateway.org/dataset/fc7ea07b-d60f-4be9-a840-89b17d4c2414,"{'usage': {'isReferencedBy': ['https://www.nboca.org.uk/reports/nboca-peer-reviewed-publications/'], 'resourceCreator': ['Data has been provided by the Healthcare Quality Improvement Partnership from the National Bowel Cancer Audit '], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['NO RESTRICTION']}, 'access': {'dataController': 'Healthcare Quality Improvement Partnerhsip jointly with NHS England', 'jurisdiction': ['GB-GBN', 'GB-EAW'], 'accessRequestCost': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'accessRights': ['https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'dataProcessor': 'Royal College of Surgeons and NHS Digital', 'deliveryLeadTime': 'VARIABLE'}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL', 'LOCAL', 'ICD10'], 'conformsTo': ['LOCAL'], 'language': ['en'], 'format': ['other']}}","{'temporal': {'timeLag': 'VARIABLE', 'startDate': '1997-01-01', 'accrualPeriodicity': 'CONTINUOUS'}, 'origin': {'purpose': ['AUDIT'], 'source': ['ELECTRONIC SURVEY'], 'collectionSituation': ['IN-PATIENTS']}}",2020-01-13T14:55:18Z,"[{'observedNode': 'PERSONS', 'measuredValue': 32000, 'disambiguatingDescription': 'Approximate number of new patients included each year', 'observationDate': '01/01/2021', 'measuredProperty': 'Count'}]",5.0.0,"{'derivation': ['Not Available'], 'qualifiedRelation': ['Data linked with that from other custodians may be available, but the release of linked data will be subject to the separate permission of all relevant data controllers']}",2021-11-12T16:09:42Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': ""Infectious Diseases BioBank at King's College London"", 'keywords': ['Hepatitis C', 'HIV', 'BioBank', ""King's College London"", 'UKCRC Tissue Directory', 'Human immunodeficiency virus (organism)', 'Infectious Diseases'], 'doiName': 'Not Available', 'publisher': {'memberOf': 'ALLIANCE', 'contactPoint': 'john.cason@kcl.ac.uk', 'name': 'TISSUE DIRECTORY'}, 'contactPoint': 'john.cason@kcl.ac.uk', 'abstract': 'Collection of samples and data across the following diseases: Human immunodeficiency virus (organism)'}",47b544f4-301c-43e0-b347-fc623ea1a8b3,"{'spatial': 'England', 'typicalAgeRange': '40-150', 'physicalSampleAvailability': ['WHOLE BLOOD']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '1459cc58-cdcd-4f45-bff8-f6e5612664fc', '3.0.0': 'fd2317ea-c729-433b-b578-309118118b78', '0.0.1': 'c30656e9-8f75-4fe4-bbdc-e335a078d0d3', '2.0.0': '0534b41b-9877-4e30-b3ce-e604b29d4990', 'latest': 'fd2317ea-c729-433b-b578-309118118b78'}","{'description': 'Fractionated blood products from patients with HIV, hepatitis C viral infections and others with bacteraemias.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",fd2317ea-c729-433b-b578-309118118b78,https://web.www.healthdatagateway.org/dataset/fd2317ea-c729-433b-b578-309118118b78,"{'formatAndStandards': {'format': ['In Progress'], 'language': ['en']}, 'access': {'jurisdiction': 'GB-ENG', 'accessRequestCost': 'Not specified', 'dataProcessor': 'Not Applicable', 'dataController': ""King's College London"", 'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'accessRights': 'Please contact the publisher using Contact Point details provided'}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2006-01-01'}}",2020-01-13T17:05:22Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T16:03:18Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'MSDS (Maternity Services Data Set)', 'contactPoint': 'enquiries@nhsdigital.nhs.uk', 'keywords': ['Childbirth', 'Mother', 'Maternity', 'Births', 'Baby', 'DIGITRIALS', 'NCS', 'National Core Study', 'COVID-19'], 'abstract': 'Patient-level data set that captures information about activity carried out by Maternity Services relating to mother and baby(s), from the first booking appointment until mother and baby(s) are discharged from the services.', 'publisher': {'name': 'NHS DIGITAL', 'memberOf': 'ALLIANCE', 'contactPoint': 'enquiries@nhsdigital.nhs.uk'}}",11d3cf0f-ae5d-42f4-a756-b98c3eff46bc,"{'pathway': 'The Maternity Services Data Set (MSDS) is a patient-level data set that captures key information generated as part of care within maternity service providers at each stage of the maternity care pathway including the antenatal pathway, the birth episode pathway, and the postnatal pathway. The antenatal pathway starts when the pregnant woman has her first antenatal appointment with her maternity provider, at around 10 weeks’ gestation. The MSDS continues to capture information until the date on which the mother ceased to be cared for in maternity services. Information on care prior to the first antenatal booking appointment or following discharge from maternity services is not contained in the MSDS.', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': 'England', 'followup': 'OTHER', 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '56f916b0-441f-41df-bfb2-f127aba045f0', '6.0.0': 'fd296ed6-6e12-49ab-9e5f-f40428a47b02', '2.0.0': '4487605e-1e20-4cbe-945f-7169e4ac667d', '4.0.0': '54b52301-d0be-4441-8b84-8c521fe8946d', '3.0.0': '63aa23c0-80cf-48b1-89f2-909d5d5f70d8', '5.0.0': '15123705-7d80-4803-a3b4-d145bf2902c5', 'latest': 'fd296ed6-6e12-49ab-9e5f-f40428a47b02'}","{'description': 'The Maternity Services Data Set (MSDS) is the national information standard for data relating to NHS-funded maternity services. 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"{'title': 'Projections of global, regional and national prevalence of asthma from 2018-2040', 'keywords': ['Asthma', ' models', ' prevalence', ' burden', ' projection', ' forecast', ' estimate'], 'publisher': {'memberOf': 'HUB', 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'name': 'BREATHE'}, 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'abstract': 'The aim of this project is to determine appropriate models for estimating and projecting the prevalence and disease burden of asthma.'}",0911f991-6c0f-4412-b805-1ee0ded93a12,"{'typicalAgeRange': '0-100', 'spatial': 'https://www.geonames.org/countries/GB/united-kingdom.html'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'fdb053d7-375a-4422-aa16-c899661d72b1'},"{'description': '<p>Determine appropriate models for estimating and projecting the prevalence and disease burden of asthma. Derive valid and reproducible estimates of the global, regional and national prevalence and disease burden of asthma and make projections in relation to these estimates for the years up to 2030. Develop automated approaches to updating these estimates on an annual basis.</p>\n\n<p>The dataset contains projected asthma population (number of people having asthma) from 2018 to 2040 for 187 countries, 8 United Nations (UN) Sustainable Development Goal (SDG) regions, 22 sub-regions and the world as a whole. The dataset contains projected age-sex-and-location specific prevalence of asthma for five years age groups including all ages and both sexes.</p>', 'isPartOf': 'AUCKAR'}",fdb053d7-375a-4422-aa16-c899661d72b1,https://web.www.healthdatagateway.org/dataset/fdb053d7-375a-4422-aa16-c899661d72b1,"{'access': {'accessService': 'To be determined upon data access request', 'deliveryLeadTime': 'VARIABLE', 'accessRights': ['To be determined upon data access request'], 'dataController': 'BREATHE', 'jurisdiction': ['GB-ENG', 'GB-SCT', 'GB-WLS'], 'dataProcessor': 'NOT APPLICABLE'}, 'formatAndStandards': {'language': 'en', 'conformsTo': 'LOCAL', 'vocabularyEncodingScheme': 'LOCAL', 'format': ['text/csv']}, 'usage': {'resourceCreator': 'Mohammad Romel Bhuia', 'dataUseLimitation': 'GENERAL RESEARCH USE'}}","{'origin': {'collectionSituation': 'OTHER', 'purpose': 'STUDY'}}",2021-04-09T15:35:19Z,,0.0.1,,2021-04-09T15:32:13Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'CPRD GOLD SGSS', 'abstract': 'CPRD GOLD linked Second Generation Surveillance System (SGSS) data contains SARS-CoV-2 testing (swab samples, PCR test method) offered to those in hospital and NHS key workers (i.e. Pillar 1) and includes positive tests results only.', 'contactPoint': 'enquiries@cprd.com', 'publisher': {'memberOf': 'ALLIANCE', 'identifier': '607db9c2e1f9d3704d570cee', 'name': 'CPRD'}, 'doiName': 'https://doi.org/10.48329/nk4j-1p27', 'keywords': ['SARS-CoV-2', 'COVID-19', 'Surveillance', 'Patient']}",7325c42d-6974-4f1b-acd6-5a3c9d22f4a1,"{'pathway': 'Secondary care', 'spatial': ['https://www.geonames.org/6269131/england.html'], 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-115', 'followup': '1 - 10 YEARS'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'fdb46c60-780a-47fa-bc7e-e367c2f64900'},"{'description': 'Second Generation Surveillance System (SGSS) is the national laboratory reporting system used in England to capture routine laboratory data on infectious diseases and antimicrobial resistance. The SARS-CoV-2 testing started in UK laboratories on 24/02/2020, with the SGSS data reflecting testing (swab samples, PCR test method) offered to those in hospital and NHS key workers (i.e. Pillar 1). The CPRD-SGSS linked data currently contain positive tests results only.', 'isPartOf': 'CPRD GOLD', 'associatedMedia': ['https://www.cprd.com/linked-data']}",fdb46c60-780a-47fa-bc7e-e367c2f64900,https://web.www.healthdatagateway.org/dataset/fdb46c60-780a-47fa-bc7e-e367c2f64900,"{'access': {'accessRequestCost': ['https://www.cprd.com/pricing'], 'deliveryLeadTime': 'VARIABLE', 'dataProcessor': 'CPRD', 'jurisdiction': ['GB-ENG'], 'accessService': 'Access to CPRD data, including UK Primary Care Data, and linked data such as Hospital Episode Statistics, is subject to protocol approval via CPRD’s Research Data Governance (RDG) Process. Independent scientific and patient advice is provided by Expert Review Committees (ERCs) and the Central Advisory Committee (CAC): https://www.cprd.com/research-applications', 'accessRights': ['HTTPS://CPRD.COM/DATA-ACCESS'], 'dataController': 'Clinical Practice Research Datalink'}, 'formatAndStandards': {'language': ['en'], 'vocabularyEncodingScheme': ['OTHER'], 'conformsTo': ['NHS DATA DICTIONARY'], 'format': ['Tab delimited text']}, 'usage': {'investigations': ['https://www.cprd.com/protocol-list'], 'resourceCreator': ['NHS Digital'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'NO LINKAGE', 'RESEARCH SPECIFIC RESTRICTIONS', 'RESEARCH USE ONLY'], 'dataUseRequirements': ['GEOGRAPHICAL RESTRICTIONS', 'INSTITUTION SPECIFIC RESTRICTIONS', 'PROJECT SPECIFIC RESTRICTIONS', 'TIME LIMIT ON USE', 'USER SPECIFIC RESTRICTION']}}","{'temporal': {'distributionReleaseDate': '2022-02-04', 'startDate': '2020-03-01', 'endDate': '2021-02-23', 'timeLag': 'MORE 6 MONTHS', 'accrualPeriodicity': 'QUARTERLY'}, 'origin': {'collectionSituation': ['IN-PATIENTS', 'OTHER'], 'source': ['EPR'], 'purpose': ['OTHER']}}",2022-02-18T11:56:23Z,"[{'observedNode': 'PERSONS', 'measuredValue': 378135, 'disambiguatingDescription': 'Number of unique CPRD GOLD patients linked to SGSS', 'observationDate': '04/02/2022', 'measuredProperty': 'Count'}]",1.0.0,"{'derivation': ['N/A'], 'tools': ['[]'], 'qualifiedRelation': ['CPRD GOLD', 'CPRD GOLD CHESS', 'CPRD GOLD ICNARC', 'Death Registration data for CPRD GOLD', 'HES Admitted Patient Care data for CPRD GOLD', 'HES Outpatient data for CPRD GOLD', 'HES Accident and Emergency data for CPRD GOLD', 'HES Diagnostic Imaging Dataset for CPRD GOLD', 'Patient postcode linked deprivation measures for CPRD GOLD', 'Practice postcode linked deprivation measures for CPRD GOLD', 'Rural-Urban classification for CPRD GOLD', 'Cancer registration data for CPRD GOLD', 'National Radiotherapy Dataset (RTDS) for CPRD GOLD', 'Systemic Anti-Cancer Treatment (SACT) data for CPRD GOLD', 'Mental Health Dataset (MHDS) for CPRD GOLD', 'Mother-Baby Link for CPRD GOLD', 'Pregnancy Register for CPRD GOLD']}",2022-02-18T11:56:23Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 10, 'structuralMetadata.columnName': 10, 'structuralMetadata.columnDescription': 10, 'structuralMetadata.dataType': 10, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '301561a1-a800-4516-a2ad-3a0317ca5ddf', 'description': 'Specimen file', 'name': 'Specimen file', 'dataElementsCount': 10, 'dataElements': '7a3d2607-482d-45e7-b29b-571742f4e122, 7beff067-3250-49b4-a1fa-ef46a3f92003, 43e479a5-6715-4bad-9e2b-5f72d916c1e2, a1b49d04-3cf6-495d-85ac-a6cd5a20cb2a, c484b96b-47a2-4ba5-af98-2ed2312bf6aa, 94c53c4e-f4c5-4b2c-8d97-5c8ecd2a4d91, 239f27cc-b014-4c03-bf41-d54e5f7ed33d, 7e60c7ee-6a53-4fc2-ae68-a8c6103d55d8, 39ac8d9e-2646-4a4e-a716-9d66b7b6b64b, 913f5a62-2022-43ec-a214-4083e33f6203'}]}"
"{'title': 'National Joint Registry - Revision Knee Replacement dataset', 'publisher': {'identifier': '607db9c4e1f9d3704d570d23', 'name': 'HQIP', 'memberOf': 'ALLIANCE'}, 'abstract': 'The NJR datasets collect continuous, prospective data on patients undergoing primary and revision total joint replacement (hip, knee, shoulder, elbow and ankle). The dataset covers the period 2003 to present and covers the UK and beyond', 'keywords': ['Joint', 'Revised', 'Knee', 'Replacement', 'NJR', 'Registry'], 'contactPoint': 'research@njr.org.uk'}",6664317b-39b9-4133-b6c7-ec4bddf78c76,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150', 'pathway': 'Data is representative of the patient pathway. Readmissions for reasons other than revision surgery are not collected.', 'spatial': ['https://www.geonames.org/3042225/isle-of-man.html', 'https://www.geonames.org/3042363/guernsey.html', 'https://www.geonames.org/6269131/england.html', 'https://www.geonames.org/2634895/wales.html', 'https://www.geonames.org/2641364/northern-ireland.html'], 'followup': 'UNKNOWN'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'e1c5f0cd-40e3-473d-8051-97ddee1b5ca6', '4.0.0': 'fe168c6f-7533-413e-94fd-066fd845d7c0', '1.0.0': '429234df-98bd-492e-88c5-c497867fdee5', '2.0.0': '23330792-fe18-4331-a101-b246657a03ae', '3.0.0': '1b85497d-af3c-4a4d-8240-ff680411a0a4', 'latest': 'fe168c6f-7533-413e-94fd-066fd845d7c0'}","{'description': ""The National Joint Registry for England, Wales, Northern Ireland and the Isle of Man is a database containing details of all primary and revision total hip, knee, shoulder, elbow and ankle replacement procedures carried out in NHS and independent sector hospitals in England, Wales, Northern Ireland and the Isle of Man.  Primary hip replacement has its own specific dataset for procedures.\nInitially this data is collected during a patient's time at hospital as part of bespoke data collection to support the NJR . This is submitted to NEC Software Solutions (contracted to the NJR) for processing and is used to monitor the quality and safety of patient care and outcomes. \nThis same data can also be processed and used for non-clinical purposes, such as research and planning health services. Because these uses are not to do with direct patient care, they are called 'secondary uses'. This is the NJR research ready data set.\nNJR data covers all procedures carried out in NHS and independent sector hospitals  in England, Wales (from 2003), Northern Ireland (from 2013), the Isle of Man (from 2015) and the States of Guernsey (from 2019).\nEach NJR record contains a wide range of information about an individual patient treated at an NHS or independent sector hospital, including:\n• clinical information about surgical indications and operations\n• patient information, such as age group and gender\n• component information, such as the brand and size of prosthesis used\n• outcomes, such as whether a revision procedure has been undertaken\nNJR apply a strict statistical disclosure control in accordance with the NHS Digital protocol, to all published NJR data. This suppresses small numbers to stop people identifying themselves and others, to ensure that patient confidentiality is maintained.\nWho NJR data is for\nNJR can provide data for the purpose of healthcare analysis to the NHS, government and others including:\n• national bodies and regulators, such as the Department of Health, NHS England, Public Health England, NHS Improvement and the CQC\n• local Clinical Commissioning Groups (CCGs)\n• provider organisations\n• government departments\n• researchers and commercial healthcare bodies\n• National Institute for Clinical Excellence (NICE)\n• patients, service users and carers\n• the media\nUses of the statistics\nThe statistics are known to be used for:\n• national policy making\n• benchmarking performance against other hospital providers or CCGs  \n• academic research\n• analysing service usage and planning change\n• providing advice to ministers and answering a wide range of parliamentary questions\n• national and local press articles\n• international comparison\nMore information can be found at http://www.njrcentre.org.uk/njrcentre/"", 'associatedMedia': ['https://www.njrcentre.org.uk/njrcentre/Research/Research-requests'], 'isPartOf': 'NJR'}",fe168c6f-7533-413e-94fd-066fd845d7c0,https://web.www.healthdatagateway.org/dataset/fe168c6f-7533-413e-94fd-066fd845d7c0,"{'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'language': ['en'], 'format': ['Tab delimited file made available via NJR Data Access Portal']}, 'access': {'dataProcessor': 'NEC Software Solutions', 'deliveryLeadTime': 'VARIABLE', 'jurisdiction': ['GB-EAW'], 'dataController': 'Healthcare Quality Improvement Partnership jointly with NHS England', 'accessRights': ['http://www.njrcentre.org.uk/njrcentre/Research/Research-requests', 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data'], 'accessRequestCost': ['http://www.njrcentre.org.uk/njrcentre/Portals/0/NJR%20cost%20recovery%20policy%20April%202019%20v1.0.pdf?ver=2019-04-04-105011-240']}, 'usage': {'resourceCreator': [""the study title should be followed by the suffix: ‘An analysis from the National Joint Registry'.""], 'investigations': ['https://www.njrcentre.org.uk/njrcentre/Research/Research-Portfolio'], 'dataUseLimitation': ['NO RESTRICTION'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS']}}","{'temporal': {'accrualPeriodicity': 'CONTINUOUS', 'timeLag': 'VARIABLE', 'startDate': '2003-04-01'}, 'origin': {'collectionSituation': ['IN-PATIENTS', 'PRIVATE'], 'source': ['EPR', 'ELECTRONIC SURVEY', 'PAPER BASED'], 'purpose': ['AUDIT', 'DISEASE REGISTRY', 'OTHER']}}",2020-01-13T14:55:21Z,"[{'observedNode': 'FINDINGS', 'measuredValue': '3016279', 'disambiguatingDescription': 'total number of NJR records analysed for the 2019 annual report\n', 'observationDate': '01/09/2020', 'measuredProperty': 'Count'}]",4.0.0,"{'qualifiedRelation': [' HES - available subject to additional permissions', 'National PROMS - available subject to additional permissions', 'National PROMS - available subject to additional permissions'], 'derivation': ['Not available']}",2022-01-07T11:19:48Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 1, 'structuralMetadata.tableName': 1, 'structuralMetadata.tableDescription': 1, 'structuralMetadata.dataElementsCount': 64, 'structuralMetadata.columnName': 64, 'structuralMetadata.columnDescription': 64, 'structuralMetadata.dataType': 64, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': '8f862c69-0bd8-4a96-90ab-25f5b113851a', 'description': 'Data fields for NJR revision knee replacement dataset', 'name': 'National Joint Registry Revision Knee Replacement Dataset', 'dataElementsCount': 64, 'dataElements': 'ce0e97da-47df-4bbc-9c8a-65ac2aceb2fc, 3364e5a3-d823-43d7-b710-131d7d169cdb, dd1b0ed9-15ed-4412-af0d-59fee0d131ba, 238fa600-0f74-4912-b286-1f70768a9179, b603468a-2653-482f-9097-d0832f53946b, c99ed1b5-025e-432a-bea6-f0d4e173fbec, 899e030a-7cf4-4542-8ba3-2f55a82ab23f, 5f43ca43-95d1-484a-9d6b-1792a22fc89a, f62a28d1-5e5a-420f-8ac9-21ff1433443e, 7b582e08-8946-4d4b-ba3d-b5f20c422477, 83b46438-0976-4123-b074-77d1938d4fe7, d57738a1-7e49-4af2-92bd-3845d696eec9, fd8b53b0-2905-4292-a2b5-046fe21e58a1, ce3e08d2-f70e-4823-bc31-8e55e27c4ccf, e7593405-7621-457f-a7a8-668286da1aa6, cc5ded1a-a18c-4e4f-9068-2f4f00daf0d9, c6f6eeb8-775b-4547-aa3f-b177bb43c58a, 34394f9a-d455-4f85-9eae-be7aa5f67662, 657aac3d-b543-439a-9b7a-ca3665355973, 5ca2680c-475d-4f86-aef5-e1be9c88a8b0, cfe28c08-0bab-49b2-a385-7c0d2fa2abf1, 84c09f9d-f1b2-4c20-acf4-553359309bd7, 58339be5-a91e-4720-872a-aba9cc8f7622, b400f6c3-5ff7-4bc1-a125-c0f4ec54ad39, 1e5b83dc-d059-4c27-bbe0-099f98b7fcb8, 6f892809-308b-48c1-8a3c-1d2dc4c1f301, 0647ec61-545c-4f4e-be36-1df8f631c754, babaac85-5837-4851-986c-05744d4642dc, ec718445-7553-4fa5-aa1c-efa293fb0c35, f59dcf6b-4f89-4ae5-9efb-70cc4316ddeb, a316a101-7dcb-4da0-82d4-f3d7bb65fa93, 1233c46f-5ef8-4c94-a1ed-8dad7521b276, 73c19d48-105a-4072-8a59-5d1b8453d6b0, 10ef0844-350e-4926-9af4-b71015e9225d, b7089835-35bd-4ec0-8fe4-50e8df63d0f6, b281e2d9-1cf9-4d97-8b1b-a9b0ccad01da, 02ca20a1-268d-448b-b712-d0d7cf4d6d6a, 6149064a-5927-457b-bb7e-105cb9e30754, 177eae68-c5e3-4e1c-bbe8-fca3b120a039, 6f4a677e-f8c8-45ab-adb7-03446aa53a97, 0f3a0789-f5d2-4190-950e-2f805d44a48f, 00a155da-b340-4d76-8146-8cf0573ca7fb, 82887139-7ccf-4ee4-af02-09de54ffb6a3, 4bacda0d-833d-4e01-85db-960556090ddc, 3c5a9807-3c02-44b7-885b-80408cceda50, 6a8db280-dc45-4d0f-8744-fb7cbf25d43f, 0e0237be-2f3c-48a1-8561-fcbb231bf046, f5864683-a752-4abd-b95b-d75b8038522e, 43a34d14-ec75-4ba7-b8a2-47e52335b00a, b9d9b313-8b72-4411-8eb9-4d16c1aa64f2, 06ffc719-e9f2-4eed-a89b-d1e5fb9ef66f, d6976367-6e77-41da-93b5-eea6a36bd11b, 0c781a34-69e5-4d04-8280-11377ada39da, 88984918-c2a3-4761-85cc-22feb0e8ad46, 2a7f4d85-adcf-4cf8-8544-b974953b326a, 6dff25b6-e626-4495-84f5-e45327d5fb1b, 6791c01e-117a-4963-9d63-0a85c8d0db7f, f60b3c01-1c36-452d-b311-e3e05a6d2fcc, 2fc09774-7dd1-443b-a54b-141a7021faf7, ec50907b-3fa8-45dd-9bcd-650db9a0e380, 5a97ecef-8e64-4cc1-8da4-de0d1c36dbf0, f36c63e0-dc57-436e-b135-e8b4e410858e, c654fe7b-2a26-4ac6-89a0-e961cf6c0bbc, f0268cec-e17d-409b-8126-8231888507d0'}]}"
"{'title': 'Bristol Biobank', 'abstract': 'Collection of samples and data across the following diseases: Chronic multifocal osteomyelitis (disorder),Fit and well, Tonsillitis', 'publisher': {'name': 'TISSUE DIRECTORY', 'contactPoint': 'bristol-biobank@bristol.ac.uk', 'memberOf': 'ALLIANCE'}, 'doiName': 'Not Available', 'contactPoint': 'bristol-biobank@bristol.ac.uk', 'keywords': ['UKCRC Tissue Directory', 'Bristol', 'Chronic multifocal osteomyelitis (disorder)', 'Tonsillitis', 'Fit and well', 'Biobank']}",9d56ae46-5955-4f03-a93c-a4a6d9f641ab,"{'physicalSampleAvailability': ['DNA', 'PLASMA', 'RNA', 'SALIVA', 'SERUM', 'SWABS', 'TISSUE', 'URINE', 'WHOLE BLOOD'], 'spatial': 'England', 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'2.0.0': 'f42b9fa6-adad-4637-943e-6fa7508559a3', '3.0.0': 'fe3f2246-aec4-4be4-8f51-3e5bde80931d', '1.0.0': '74f8699f-396d-4a5c-bb16-018d0a7fec6a', '0.0.1': '1c73187e-e40d-440e-9903-3d706336b86b', 'latest': 'fe3f2246-aec4-4be4-8f51-3e5bde80931d'}","{'description': 'The Bristol Biobank (funded by the David Telling Charitable Trust with stakeholders from the University of Bristol and University Hospitals NHS Foundation Trust) stores samples collected from patients and healthy volunteers for use in biomedical research. Researchers in Bristol and beyond can apply to use these samples in their research. The collection of a wide range of samples will provide a platform for research into complex conditions.\nResearchers may request to deposit samples into the Biobank following the end of a NHS Research Ethics Committee approved study. Consent must have been taken using study specific documentation for the storage and use of these samples in research beyond the study.\nThe Bristol Biobank team will also be happy to receive applications to deposit samples for specific projects you wish to set-up using Biobank permissions and documentation.\nThe Bristol Biobank is licensed by the Human Tissue Authority (licence 12512) to store human tissue for research and has ethics approval from Wales Research Ethics Committee 3 as a research tissue bank to collect and issue biomaterials for biomedical research across a range of therapeutic areas.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",fe3f2246-aec4-4be4-8f51-3e5bde80931d,https://web.www.healthdatagateway.org/dataset/fe3f2246-aec4-4be4-8f51-3e5bde80931d,"{'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}, 'formatAndStandards': {'language': 'en', 'format': ['In Progress']}, 'access': {'dataController': 'Bristol University', 'dataProcessor': 'Not Applicable', 'accessRights': ['Please contact the publisher using Contact Point details provided'], 'jurisdiction': 'GB-ENG', 'accessRequestCost': 'Not specified'}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2005-01-01'}}",2020-01-13T17:04:32Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T15:55:51Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Healthcare Workers Risk Assessment (HWRA)', 'publisher': {'name': 'SAIL', 'identifier': '5f3f98068af2ef61552e1d75', 'memberOf': 'ALLIANCE'}, 'keywords': ['Risk', 'Risk Assessments', 'SAIL', 'NCS', 'National Core Study', 'COVID-19', 'project-specific', 'HWRA', 'COPI'], 'contactPoint': 'SAILDatabank@swansea.ac.uk', 'abstract': 'This dataset provides limited information about which NHS workers completed Risk Assessments in the course of normal work.'}",ed131fee-0635-4613-a453-a383d5dd7cec,"{'pathway': 'Not Available', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'typicalAgeRange': '0-150', 'followup': 'OTHER', 'spatial': ['https://www.geonames.org/2634895/wales.html']}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'5.0.0': '62b7e273-1ec1-4eb1-b651-daebdb73cce3', '6.0.0': 'fe8852b2-9d0b-4145-8f5c-531378731d39', '4.0.0': '0e71fb49-9d05-4bc6-8737-2f2b1ff591b5', '3.0.0': '6528428a-05ca-46ca-9107-601f804bc811', 'latest': 'fe8852b2-9d0b-4145-8f5c-531378731d39'}","{'description': 'This dataset provides limited information about which NHS workers completed Risk Assessments in the course of normal work.', 'associatedMedia': ['https://saildatabank.com/about-us/overview/'], 'isPartOf': 'NOT APPLICABLE'}",fe8852b2-9d0b-4145-8f5c-531378731d39,https://web.www.healthdatagateway.org/dataset/fe8852b2-9d0b-4145-8f5c-531378731d39,"{'access': {'accessService': 'https://saildatabank.com/application-process/', 'jurisdiction': ['GB'], 'deliveryLeadTime': '2-6 MONTHS', 'accessRequestCost': ['Access request duration depends on scoping and the IGRP process. General estimate ~ 3 months.'], 'dataController': 'Not Available', 'dataProcessor': 'Not Available', 'accessRights': ['https://saildatabank.com/application-process/']}, 'usage': {'resourceCreator': ['NHS Wales Shared Services Partnership'], 'dataUseLimitation': ['GENERAL RESEARCH USE', 'RESEARCH SPECIFIC RESTRICTIONS'], 'isReferencedBy': ['Not Available'], 'investigations': ['https://saildatabank.com/saildata/projects-using-sail/'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'language': ['en'], 'format': ['SQL database table']}}","{'origin': {'purpose': ['STUDY', 'ADMINISTRATIVE'], 'source': ['ELECTRONIC SURVEY', 'OTHER'], 'collectionSituation': ['PRIMARY CARE', 'SERVICES', 'OTHER']}, 'temporal': {'distributionReleaseDate': '2022-01-26', 'startDate': '2020-01-31', 'timeLag': '2-6 MONTHS', 'endDate': '2021-12-31', 'accrualPeriodicity': 'MONTHLY'}}",2021-09-13T14:52:50Z,"[{'observedNode': 'PERSONS', 'measuredValue': '116000', 'observationDate': '31/08/2020', 'measuredProperty': 'Count'}]",6.0.0,"{'qualifiedRelation': ['ALL'], 'derivation': ['Not Available'], 'tools': ['https://conceptlibrary.saildatabank.com']}",2022-02-07T15:28:13Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 4, 'structuralMetadata.tableName': 4, 'structuralMetadata.tableDescription': 4, 'structuralMetadata.dataElementsCount': 38, 'structuralMetadata.columnName': 38, 'structuralMetadata.columnDescription': 38, 'structuralMetadata.dataType': 38, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'a85c6c78-9d2d-49cf-933d-1d3a263facaa', 'description': 'This table provides data linkages to SAIL and HWRA data via unique IDs, and can provide general background location data [e.g. LHB].', 'name': 'HEALTHCARE_WORKERS_ALF_PRV', 'dataElementsCount': 14, 'dataElements': '6bd6e1d4-a58a-4984-b24c-62fdb7feef05, 5fa91129-49fc-4d54-8c0f-131275695b26, 90f49b6e-ab9a-4ac8-abc8-4984de77d42a, 25479664-d648-4fbd-8c11-9f8cbc2d2978, 7f07c8e0-da54-4d55-a741-1e97fcbeb62e, 240fe47a-0069-4cae-b6e0-8f2dabee8a65, 43464c9f-e12a-4ba7-b196-9e417486aa91, b0a9b993-c8a4-4c54-a5b5-83c4d8118ee1, 4fb24da0-7d48-47b8-9dd7-12b079cd0d83, d01c504b-8345-4497-916f-c5e3db312d87, 274e9f24-9b99-4b7a-bd20-51cab52a4147, 3b9816dd-41e0-4af6-8fb3-23c7e6ca757a, 0fe03f89-657e-4cb0-8f03-0d4993f44b26, 161d3aaa-4d7e-4eec-94e1-5041619c8fe5'}, {'id': '3e4461ac-c522-4cde-b441-b712f1bacec9', 'description': 'This table provides data linkages to SAIL and HWRA data via unique IDs, and can provide general background location data [e.g. LHB].', 'name': 'HEALTHCARE_WORKERS_RA_PRV', 'dataElementsCount': 5, 'dataElements': '493b47a0-2731-4e55-85a1-7cbf05c75517, acfc1576-1613-4ecf-986b-9a79e20544e0, 4ef0f221-46a9-44cb-9bfa-1d2c3416362b, d73e8351-a37d-4711-a20b-2a5409056939, a5f75904-4289-40d5-89f1-fc39224655a6'}, {'id': '75b87ff3-9314-4e79-923a-976003e529a4', 'description': 'This table provides data linkages to SAIL and HWRA data via unique IDs, and can provide general background location data [e.g. LHB].', 'name': 'HEALTHCARE_WORKERS_ALF', 'dataElementsCount': 14, 'dataElements': 'd62bcaa2-8258-42ce-981f-ad18dea32737, c3e69a38-585a-494c-be1b-4ff95114c681, abbf8cd9-3f15-414f-9422-7951ffb6bb86, 3424b666-3947-42b5-aea3-e413922ea3bc, ab37258e-fcce-4d65-af2a-e23a48d0c0cf, a5095d68-42de-4aae-a09b-dc1fff00d01c, c540cc97-1c42-4576-bb86-5d75ff05e753, f8000697-822c-4c29-b409-0d466b608187, 341d2d57-a24d-4d02-a1bb-8ed7e5a29e92, 69ccdf81-fd62-435d-8fee-ebaf6d123ec6, 4740e165-17f7-4ed9-8755-55dd1c8cbe8a, cb23cfd7-c161-4c5b-8ab2-6c4bbd2b5afe, 1a491dd6-ead5-4297-b27d-165e1bc4b687, 4088f196-8591-4a4a-8895-0c271e1b174c'}, {'id': 'a18558a0-31a8-4630-a830-530907c31596', 'description': 'This table provides data linkages to SAIL and HWRA data via unique IDs, and can provide general background location data [e.g. LHB].', 'name': 'HEALTHCARE_WORKERS_RA', 'dataElementsCount': 5, 'dataElements': '3c98a55b-e6ac-4727-baa4-8ae0b7cd527e, df33e2fa-17b4-4366-8898-281ee29b4181, 3a1161be-eb47-4674-8ed1-6625e365c185, 556dd16a-4bda-40de-8fce-58e6c1a4e051, 19fa6e97-1b37-405c-8705-66336280124d'}]}"
"{'title': 'Emergency hospital admissions in patients from care home settings', 'keywords': ['Acute Care', 'Nursing home', 'Care home', 'Residential care', 'Prognosis', 'Frailty', 'Emergency admissions', ' older people', 'biomarkers', 'Longitudinal', 'treatments', 'Outcomes', 'demography', 'age', 'Ethnicity', 'socioeconomic deprivations', 'symptoms', 'admission diagnosis', 'acuity', 'physiology', 'pulse rate', 'blood pressure', 'oxygenation', 'pulse oximetry', 'investigations', 'blood tests', 'Pathology', 'Imaging', 'treatments', 'fluids', 'medications', 'antibiotics', 'surgical procedures', 'fracture', 'Falls', 'Mortality', 'specialty care', 'geriatrics'], 'publisher': {'name': 'PIONEER', 'memberOf': 'HUB', 'identifier': '607db9c5e1f9d3704d570d5f'}, 'abstract': 'Longitudinal routine data for 128,000 admissions to hospital as an emergency from a care home; including treatments, interventions, ITU admissions and outcomes. Deeply phenotyped  longitudinal data including serial physiology, blood biomarkers.', 'contactPoint': 'PIONEER@UHB.NHS.UK'}",6009f720-3cd5-449d-b36b-e2ccf3fbc73a,"{'typicalAgeRange': '65-110', 'pathway': 'Data is representative of the multi-ethnicity population within the West Midlands (42% non white). Data includes all patients admitted during this timeframe, with National data Opt Outs applied, and therefore is representative of admissions to secondary care. Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2634343/west-midlands.html'], 'followup': 'OTHER'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'feb9a877-2e22-4a5b-a260-5c5186224028'},"{'description': 'Nearly 340,000 older people in England live in residential or nursing care homes. Older people living in care homes often have complex health problems which make them more likely to need hospital care in hospital if their health suddenly deteriorates. People living in care homes account for 185,000 emergency admissions to hospital each year and spend over 1.46 million days in hospital beds. Improving care for older patients living in care homes will directly benefit patients while reducing the demand for hospital beds and reduce the risk of hospital overcrowding. \n\nA significant proportion of hospital admissions from care homes are unnecessary and could be avoided if their needs were addressed differently.  The hospital environment and can be distressing for some older people living in care homes and the burden of transferring patients from their home to hospital can be significant. These factors have driven a search for alternative ways of providing better care. \n\nThis highly granular dataset of 128,000 admissions from care home provides a unique opportunity to understand reasons, pathways and outcomes from acute presentations to hospital.\n\nPIONEER geography: The West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix. \n\nElectronic Heath Record. UHB is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.\n\nScope: Acute care episodes amongst patients aged over 65 from care homes. Longitudinal & individually linked, so that the preceding & subsequent health journey can be mapped & healthcare utilisation prior to & after admission understood. The dataset includes highly granular patient demographics, co-morbidities taken from ICD-10 & SNOMED-CT codes. Serial, structured data pertaining to process of care (timings, admissions, wards), presenting complaint, physiology readings (heart rate, BMI, blood pressure, respiratory rate, NEWS2 score, oxygen saturations and clinical frailty scale), Charlson comorbidity index, Lab analysis results(e.g. urea, albumin, platelets, white blood cells) microbiology results, procedures, outpatients admissions, oxygen delivery methods, drug administered and all outcomes. Linked images available (radiographs, CT scans, MRI).\n\nAvailable supplementary data: Matched controls; ambulance, OMOP data, synthetic data.\n\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.', 'isPartOf': 'NOT APPLICABLE'}",feb9a877-2e22-4a5b-a260-5c5186224028,https://web.www.healthdatagateway.org/dataset/feb9a877-2e22-4a5b-a260-5c5186224028,"{'access': {'dataProcessor': 'NOT APPLICABLE', 'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/'], 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/'], 'deliveryLeadTime': '1-2 MONTHS', 'jurisdiction': ['GB-ENG'], 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.'}, 'usage': {'resourceCreator': ['This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}, 'formatAndStandards': {'conformsTo': ['LOCAL'], 'language': ['en'], 'vocabularyEncodingScheme': ['SNOMED CT', 'ICD10', 'OPCS4'], 'format': ['SQL']}}","{'origin': {'source': ['EPR'], 'collectionSituation': ['ACCIDENT AND EMERGENCY'], 'purpose': ['CARE']}, 'temporal': {'startDate': '2018-01-01', 'endDate': '2021-08-01', 'accrualPeriodicity': 'QUARTERLY', 'distributionReleaseDate': '2021-11-24', 'timeLag': 'OTHER'}}",2021-12-21T14:30:03Z,"[{'observedNode': 'EVENTS', 'measuredValue': '128076', 'disambiguatingDescription': '128,076 acute episodes amongst patients aged over 65 with identifiable features of frailty between 01/01/2018 and 01/08/2021', 'observationDate': '24/11/2021', 'measuredProperty': 'Count'}]",1.0.0,{'derivation': ['Not Available']},2021-12-21T14:30:03Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 11, 'structuralMetadata.tableName': 11, 'structuralMetadata.tableDescription': 11, 'structuralMetadata.dataElementsCount': 122, 'structuralMetadata.columnName': 122, 'structuralMetadata.columnDescription': 122, 'structuralMetadata.dataType': 122, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'f86d3eaa-2812-4ee1-b54d-a7ac08c5c320', 'description': 'Spell admission details', 'name': 'PDR36Admission', 'dataElementsCount': 25, 'dataElements': '82c37185-ff47-414f-9f9e-d43516232a2f, 48f9d016-a7a6-4b62-a8ae-6f9faf96af4c, 11ab2e5b-3c9a-468a-ad17-c5f98a4b3d8a, a3b12293-148a-44e2-92ac-f051f5482c09, 01840d6c-7dcd-44f1-bbcd-082a80e0512a, f82a17fc-5ed4-4fdf-82df-5d4a6193591f, 0f8e4e07-074a-40fd-9996-de706fc1f9c5, 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"{'title': 'Falls and Fragility Fracture Audit Programme National Hip Database clinical dataset', 'publisher': {'contactPoint': 'DataSharing@hqip.org.uk', 'name': 'HQIP', 'memberOf': 'ALLIANCE'}, 'contactPoint': 'DataSharing@hqip.org.uk', 'keywords': ['Falls', 'Database', 'Hip Fracture', 'Fragility', 'FFFAP', 'Clinical Dataset', 'Audit'], 'abstract': ""Dataset contains information on all patients admitted to hospital with hip fractures.  Includes multiple aspects of patients' care including time to orthogeriatric assessment, time to surgery, assessment of delirium and discharge destination.""}",e06b951b-e9d8-4a2c-a51f-1d819f669205,,"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '15622334-d04c-4d90-9a39-0038df39e2cb', '3.0.0': 'fed22efe-8a84-4b1e-a642-2412a1420ce8', '1.0.0': '38e9ce1b-08b7-4fca-9d53-fd29bebe5d90', '2.0.0': '9c0f13ca-5831-4d9b-860a-7d856be7a9f1', 'latest': 'fed22efe-8a84-4b1e-a642-2412a1420ce8'}","{'description': ""This continuously ascertained record level dataset contains information on all patients admitted to hospital with hip fractures in England, Wales and Northern Ireland. The dataset incorporates multiple aspects of patients' care including time to orthogeriatric assessment, time to surgery, assessment of delirium and discharge destination."", 'isPartOf': 'National Clinical Audit and Patient Outcomes Programme (NCAPOP)'}",fed22efe-8a84-4b1e-a642-2412a1420ce8,https://web.www.healthdatagateway.org/dataset/fed22efe-8a84-4b1e-a642-2412a1420ce8,"{'access': {'deliveryLeadTime': 'OTHER', 'accessRights': 'https://www.hqip.org.uk/national-programmes/accessing-ncapop-data\nhttps://www.rcplondon.ac.uk/guidelines-policy/applying-work-falls-and-fragility-fracture-audit-programme-data', 'jurisdiction': 'GB-GBN'}, 'formatAndStandards': {'language': ['en']}}",,2020-01-13T14:55:17Z,,3.0.0,,2021-04-14T08:14:11Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
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"{'title': 'The impact of COVID on hospitalised patients with COPD and hospital services', 'abstract': 'Chronic Obstructive Pulmonary Disease (COPD) patients admitted or using hospital services. Granular care pathways. Multi-morbidity, investigations, interventions, treatments. Serial physiology, blood biomarkers, physiotherapy, outcome. Deeply phenotyped.', 'keywords': ['Obstructive lung disease', 'airflow limitation', 'Exacerbations', 'elective services', 'Emergency Services', 'COVID-19', 'Older adults', 'Social distancing', 'Epidemiology', 'Outcomes', 'physiology', 'Interventions', 'treatments', 'Mortality', 'hospital admissions', 'COPD'], 'publisher': {'name': 'PIONEER', 'identifier': '607db9c5e1f9d3704d570d5f', 'memberOf': 'HUB'}, 'contactPoint': 'PIONEER@UHB.NHS.UK'}",a1c4dda9-d34b-443f-aaaf-231f2e0c31fa,"{'typicalAgeRange': '15-110', 'physicalSampleAvailability': ['NOT AVAILABLE'], 'spatial': ['https://www.geonames.org/2634343/west-midlands.html'], 'followup': '1 - 10 YEARS', 'pathway': 'Data is representative of the multi-ethnicity population within the West Midlands (42% non white).  Data includes all patients admitted during this timeframe, with National data Opt Outs applied, and therefore is representative of admissions to secondary care.  Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'1.0.0': '500166ab-bfe9-43c8-bb18-b3d75d315c33', '2.0.0': 'ff0750c4-2765-4bf6-a294-33215f1ced77', 'latest': 'ff0750c4-2765-4bf6-a294-33215f1ced77'}","{'description': 'Chronic obstructive pulmonary disease (COPD) is a debilitating lung condition characterised by progressive lung function limitation. COPD is an umbrella term and encompasses a spectrum of pathophysiologies including chronic bronchitis, small airways disease and emphysema. COPD caused an estimated 3 million deaths worldwide I each year, and is estimated to be the third leading cause of death worldwide. The British Lung Foundation (BLF) estimates that the disease costs the NHS around £1.9 billion per year. COPD is therefore a significant public health challenge. This dataset explores the impact of hospitalisation and service use in patients with COPD during the COVID pandemic.\n\nPIONEER geography \nThe West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix. \n\nEHR. UHB is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.\n\nScope: All hospitalised patients admitted to UHB during the COVID-19 pandemic and elective service users, curated to focus on COPD. Longitudinal & individually linked, so that the preceding & subsequent health journey can be mapped & healthcare utilisation prior to & after admission understood. The dataset includes highly granular patient demographics & co-morbidities taken from ICD-10 & SNOMED-CT codes. Serial, structured data pertaining to acute care process (timings, staff grades, specialty review, wards), presenting complaint, acuity, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations), all blood results, imaging reports, all prescribed & administered treatments (fluids, blood products, procedures), all outcomes.\n\nAvailable supplementary data: Matched controls; ambulance, OMOP data, synthetic data.\n\nAvailable supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.', 'isPartOf': 'NOT APPLICABLE', 'associatedMedia': ['https://www.pioneerdatahub.co.uk/wp-content/uploads/COPD-COVID-Infographic-V2-page-001.jpg']}",ff0750c4-2765-4bf6-a294-33215f1ced77,https://web.www.healthdatagateway.org/dataset/ff0750c4-2765-4bf6-a294-33215f1ced77,"{'formatAndStandards': {'conformsTo': ['LOCAL'], 'vocabularyEncodingScheme': ['SNOMED CT', 'ICD10', 'OPCS4'], 'format': ['SQL'], 'language': ['en']}, 'usage': {'dataUseLimitation': ['GENERAL RESEARCH USE'], 'isReferencedBy': ['NOT APPLICABLE'], 'investigations': [''], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'resourceCreator': ['This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)']}, 'access': {'dataProcessor': 'NOT APPLICABLE', 'jurisdiction': ['GB-ENG'], 'deliveryLeadTime': '1-2 MONTHS', 'accessRequestCost': ['www.pioneerdatahub.co.uk/data/data-services-costs/'], 'accessService': 'Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets.\n\nHealth data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs.\n\nAccess to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience.  By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.', 'dataController': 'University Hospitals Birmingham NHS Foundation Trust', 'accessRights': ['https://www.pioneerdatahub.co.uk/data/data-request-process/']}}","{'temporal': {'accrualPeriodicity': 'QUARTERLY', 'endDate': '2020-12-15', 'distributionReleaseDate': '2021-05-18', 'timeLag': 'OTHER', 'startDate': '2019-03-01'}, 'origin': {'source': ['EPR'], 'purpose': ['CARE'], 'collectionSituation': ['ACCIDENT AND EMERGENCY', 'OUTPATIENTS', 'IN-PATIENTS']}}",2021-12-20T13:02:40Z,"[{'observedNode': 'EVENTS', 'measuredValue': '12691', 'disambiguatingDescription': '12,691 COPD (both with a positive and negative swab for SARS-CoV-2 infection) and Non COPD patients (with a positive swab for SARS-CoV-2 infection) between 2019-03-01 to 2020-12-15', 'observationDate': '18/05/2021', 'measuredProperty': 'Count'}]",2.0.0,{'derivation': ['NOT 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"{'title': 'Enhancing access to pulmonary rehabilitation through implementation research', 'abstract': 'As respiratory infection is better controlled in Bangladesh, chronic respiratory diseases such as Chronic Obstructive Pulmonary Disease, are emerging as the major health threat.', 'contactPoint': 'RESPIRE@ed.ac.uk', 'publisher': {'memberOf': 'HUB', 'identifier': '607db9c2e1f9d3704d570ce6', 'name': 'BREATHE'}, 'keywords': ['RESPIRE', ' Bangladesh', ' access', ' pulmonary rehabilitation', ' PR', ' implementation research']}",6265a41f-9444-457b-b401-1d0978f5c58a,"{'typicalAgeRange': '18-100', 'spatial': 'https://www.geonames.org/1210997/bangladesh.html'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': 'a6ea7b88-bb80-4a85-a5b9-b5cf05620f6d', '1.0.0': 'ff0ee5d5-aeb4-4dc0-bddf-79336e0ab004', 'latest': 'ff0ee5d5-aeb4-4dc0-bddf-79336e0ab004'}","{'description': 'As respiratory infection is better controlled in Bangladesh, chronic respiratory diseases such as Chronic Obstructive Pulmonary Disease, are emerging as the major health threat. This project aims to enhance access to pulmonary rehabilitation through implementation research in Bangladesh.\n\nPulmonary Rehabilitation (PR) is proven to be the most effective strategy to improve shortness of breath, health status and exercise tolerance as well as reducing re-admissions and mortality in patients with recent exacerbations.\n\nWhile PR uptake is significant in developed countries, in Bangladesh it is a relatively new intervention.\n\nThe aim of this PhD is to develop and pilot a PR programme that could be scaled up in Bangladesh.\n\nFor further information, see: https://www.ed.ac.uk/usher/respire/phd-studentships/monsur-habib', 'associatedMedia': [''], 'isPartOf': 'RESPIRE'}",ff0ee5d5-aeb4-4dc0-bddf-79336e0ab004,https://web.www.healthdatagateway.org/dataset/ff0ee5d5-aeb4-4dc0-bddf-79336e0ab004,"{'usage': {'resourceCreator': ['RESPIRE'], 'dataUseLimitation': ['GENERAL RESEARCH USE']}, 'access': {'accessRights': ['https://www.ed.ac.uk/usher/respire/contact-us'], 'dataController': 'BREATHE', 'dataProcessor': 'NOT APPLICABLE', 'accessService': 'Access service varies on a project-by-project basis. Contact the RESPIRE team for further in formation', 'deliveryLeadTime': 'VARIABLE', 'jurisdiction': ['GB-ENG', 'GB-SCT', 'GB-WLS']}, 'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'conformsTo': ['LOCAL'], 'language': ['en'], 'format': ['text']}}","{'temporal': {'timeLag': 'NOT APPLICABLE', 'endDate': '2020-12-31', 'distributionReleaseDate': '2020-12-31', 'startDate': '2020-01-12', 'accrualPeriodicity': 'STATIC'}, 'origin': {'purpose': ['STUDY'], 'collectionSituation': ['COMMUNITY']}}",2021-04-09T15:35:18Z,"[{'observationDate': '31/12/2020', 'observedNode': 'FINDINGS', 'measuredValue': '1', 'measuredProperty': 'Count'}]",1.0.0,,2021-08-11T08:25:45Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'Mortality (Death registration)', 'contactPoint': 'hbs@hscni.net', 'abstract': 'The Northern Ireland Mortality Dataset contains information on deaths registered in Northern Ireland (NI). The data is collected from death certificates and information provided by GPs and other Health and Social Care Northern Ireland (HSCNI) providers.', 'publisher': {'name': 'HEALTH AND SOCIAL CARE NORTHERN IRELAND', 'identifier': '5f89662f7150a1b050be0710', 'memberOf': 'ALLIANCE'}, 'keywords': ['Northern Ireland', 'Mortality', 'Death registration', 'NCS', 'National Core Study', 'COVID-19']}",59fb436a-f8c3-4d4a-bc76-d4a02904b078,"{'physicalSampleAvailability': ['NOT AVAILABLE'], 'followup': 'OTHER', 'pathway': 'This dataset relates to single event (death)', 'spatial': 'https://www.geonames.org/2641364/northern-ireland.html', 'typicalAgeRange': '0-150'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '9450f059-807e-4cc3-9e2d-79a3589d9106', '3.0.0': 'ff10d5c4-42a2-4a06-b6af-a2f7393c62e0', '1.0.0': 'e1fea1a6-976b-4460-babd-a53d1c49f282', '2.0.0': '5236a6db-cc3f-4e22-aea9-c11643350cc8', 'latest': 'ff10d5c4-42a2-4a06-b6af-a2f7393c62e0'}","{'description': 'The Northern Ireland Mortality Dataset contains information on deaths registered in Northern Ireland (NI). The data is collected from death certificates and information provided by GPs and other Health and Social Care Northern Ireland (HSCNI) providers. The data is provided with a three month delay from the date of registration and the information will relate to the latest certificate. This means the cause of death for an individual may be updated in cases where the death undergoes  further investigation, for example by a coroner. The data can be linked to other health-related datasets using patient Health and Care Number (HCN). HCN is not usually supplied along with death certificate data. This is added after matching to medical records, meaning that not all records will have a HCN to allow linkage to other health datasets.'}",ff10d5c4-42a2-4a06-b6af-a2f7393c62e0,https://web.www.healthdatagateway.org/dataset/ff10d5c4-42a2-4a06-b6af-a2f7393c62e0,"{'usage': {'dataUseLimitation': ['RESEARCH USE ONLY'], 'dataUseRequirements': ['PROJECT SPECIFIC RESTRICTIONS'], 'resourceCreator': ['ACKNOWLEDGEMENT The authors would like to acknowledge the help provided by the staff of the Honest Broker Service (HBS) within the Business Services Organisation Northern Ireland (BSO). The HBS is funded by the BSO and the Department of Health (DoH). The authors alone are responsible for the interpretation of the data and any views or opinions presented are solely those of the author and do not necessarily represent those of the BSO.']}, 'access': {'accessRequestCost': ['http://www.hscbusiness.hscni.net/pdf/Researcher%20Pack.zip'], 'deliveryLeadTime': 'OTHER', 'dataProcessor': 'HSC Honest Broker Service', 'accessRights': ['http://www.hscbusiness.hscni.net/services/2454.html'], 'accessService': 'NB: Mortality data is available for National Core Studies ONLY\n\nRemote access can now be granted via an HSCNI tenancy of the UK Secure e-Research Platform (UK SeRP), the HBS still offer the physical safe setting in Belfast for local research.', 'jurisdiction': ['GB-NIR'], 'dataController': 'Northern Ireland Statistics & Research Agency (NISRA)'}, 'formatAndStandards': {'language': ['en'], 'format': ['text', 'csv'], 'vocabularyEncodingScheme': ['ICD10'], 'conformsTo': ['LOCAL']}}","{'temporal': {'timeLag': '2-6 MONTHS', 'accrualPeriodicity': 'IRREGULAR', 'startDate': '2001-01-01'}, 'origin': {'source': ['OTHER'], 'collectionSituation': ['OTHER'], 'purpose': ['ADMINISTRATIVE']}}",2020-12-15T13:23:26Z,"[{'observedNode': 'PERSONS', 'measuredValue': '16000', 'disambiguatingDescription': 'Approximately 16,000 deaths registered per year', 'observationDate': '22/06/2021', 'measuredProperty': 'Count'}]",3.0.0,{'derivation': ['Not Known']},2021-06-25T13:11:41Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 3, 'structuralMetadata.tableName': 3, 'structuralMetadata.tableDescription': 3, 'structuralMetadata.dataElementsCount': 6, 'structuralMetadata.columnName': 6, 'structuralMetadata.columnDescription': 6, 'structuralMetadata.dataType': 6, 'structuralMetadata.sensitive': 0}, 'dataClasses': [{'id': 'f71077cd-4726-4fe9-8a48-c988f539aba2', 'description': 'Death registration details from GRO', 'name': 'iudata.off_system.dbo.deathdataraw', 'dataElementsCount': 1, 'dataElements': '389c73f6-939e-4859-b5a9-9d28e80c5192'}, {'id': '8671ad4a-cd7c-4066-9807-d388a82f6471', 'description': 'Current NHAIS snapshot', 'name': 'medical.dbo.ch_export', 'dataElementsCount': 3, 'dataElements': '388aa632-46a1-4202-b2d6-53c0c3af9664, 2712b493-ca9a-42ea-af88-200167614664, 02faddeb-0766-438d-a58b-4fc620c60483'}, {'id': 'ef16e35f-daee-4d8b-b06e-ab94a3066809', 'description': 'Coded cause of death for deaths registered in Northern Ireland', 'name': 'iudata.alldata.dbo.icdcodes', 'dataElementsCount': 2, 'dataElements': 'df774b60-c1c9-408a-8fd4-cdf60054d669, e191f743-9a1c-4a8a-95c2-cde38993fa74'}]}"
"{'title': 'Oxford Carpal Tunnel Syndrome (CTS) Cohort', 'contactPoint': 'nnina.schmid@ndcn.ox.ac.uk', 'keywords': ['Alleviate', 'Pain', 'Pain Hub', 'Carpal Tunnel Syndrome'], 'abstract': 'This is a cohort study in patients with carpal tunnel syndrome. It contains both cross sectional (pre-surgery) as well as longitudinal data from patients undergoing decompression surgery (pre and 6 months post surgery).', 'publisher': {'memberOf': 'HUBS', 'identifier': '613b2174b8b58d157f531e7a', 'name': 'ALLEVIATE'}}",cd3555b0-514a-4693-8f68-c8267a8e9939,{'typicalAgeRange': '0-150'},"{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}",{'latest': 'ff727b8e-4805-424a-ba34-acc9b90225fe'},"{'description': 'This is a cohort study in patients with carpal tunnel syndrome. It contains both cross sectional (pre-surgery) as well as longitudinal data from patients undergoing decompression surgery (pre and 6 months post surgery). The dataset contains phenotypic data (quantitative sensory testing, electrodiagnostic testing, clinical examination, questionnaires) and data derived from bio-samples (e.g., skin biopsies).'}",ff727b8e-4805-424a-ba34-acc9b90225fe,https://web.www.healthdatagateway.org/dataset/ff727b8e-4805-424a-ba34-acc9b90225fe,"{'formatAndStandards': {'vocabularyEncodingScheme': ['LOCAL'], 'format': ['Files'], 'conformsTo': ['OTHER'], 'language': ['en']}, 'access': {'dataProcessor': 'Alleviate Pain Hub', 'jurisdiction': ['GB-ENG'], 'accessRights': ['https://www.ndcn.ox.ac.uk/research'], 'dataController': 'Nuffield Department of Clinical Neurosciences (University of Oxford).'}}","{'temporal': {'timeLag': 'NOT APPLICABLE', 'startDate': '2021-09-17', 'accrualPeriodicity': 'STATIC'}, 'origin': {'source': ['OTHER'], 'purpose': ['STUDY'], 'collectionSituation': ['CLINIC']}}",2021-09-23T16:33:05Z,"[{'observedNode': 'PERSONS', 'measuredValue': '56', 'observationDate': '27/10/2014', 'measuredProperty': 'Count', 'disambiguatingDescription': '30 carpal tunnel syndrome patients (17 female, 13 male) and 26 healthy volunteers (18 female, 8 male) are present in the dataset.'}]",1.0.0,,2021-09-23T16:33:05Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"
"{'title': 'IMPORT HIGH trial blood samples', 'abstract': 'Collection of samples and data across the following diseases: Malignant tumour of breast', 'keywords': ['Trial', 'UKCRC Tissue Directory', 'Malignant tumour of breast', 'IMPORT HIGH', 'Blood Samples'], 'publisher': {'contactPoint': 'import-icrctsu@icr.ac.uk', 'name': 'TISSUE DIRECTORY', 'memberOf': 'ALLIANCE'}, 'doiName': 'Not Available', 'contactPoint': 'import-icrctsu@icr.ac.uk'}",edafebac-9479-4d2c-b44e-349091d5b35b,"{'physicalSampleAvailability': ['PERIPHERAL BLOOD CELLS'], 'typicalAgeRange': '40-150', 'spatial': 'England'}","{'type': 'Dataset', 'version': '2.0.1', 'url': 'https://raw.githubusercontent.com/HDRUK/schemata/master/schema/dataset/latest/dataset.schema.json'}","{'0.0.1': '40e8cd27-1c72-4a25-8d01-de1532618995', '3.0.0': 'ff8231e5-3ede-4844-a21b-b1d05120e07e', '1.0.0': '471844e9-9dc9-4345-adb8-0a436db7e6cb', '2.0.0': '0df3a0a9-d261-47ff-99e5-9c7e67410712', 'latest': 'ff8231e5-3ede-4844-a21b-b1d05120e07e'}","{'description': 'Blood samples from patients with early stage breast cancer who received breast conserving surgery and appropriate systemic therapy and radiotherapy.', 'isPartOf': 'UKCRC Tissue Directory and Coordination Centre'}",ff8231e5-3ede-4844-a21b-b1d05120e07e,https://web.www.healthdatagateway.org/dataset/ff8231e5-3ede-4844-a21b-b1d05120e07e,"{'access': {'deliveryLeadTime': 'PLEASE CONTACT THE PUBLISHER USING CONTACT POINT DETAILS PROVIDED', 'dataController': 'The Institute of Cancer Research', 'accessRights': 'Please contact the publisher using Contact Point details provided', 'jurisdiction': 'GB-ENG', 'accessRequestCost': 'Not specified', 'dataProcessor': 'Not Applicable'}, 'formatAndStandards': {'language': ['en'], 'format': ['In Progress']}, 'usage': {'resourceCreator': 'In Progress', 'isReferencedBy': ['Not Available']}}","{'temporal': {'accrualPeriodicity': 'IN PROGRESS', 'startDate': '2007-01-01', 'distributionReleaseDate': '2019-03-05'}}",2020-01-13T17:05:21Z,,3.0.0,"{'qualifiedRelation': ['Not Available'], 'derivation': ['Not Available']}",2021-02-21T16:03:15Z,"{'structuralMetadataCount': {'structuralMetadata.dataClassesCount': 0, 'structuralMetadata.tableName': 0, 'structuralMetadata.tableDescription': 0, 'structuralMetadata.dataElementsCount': 0, 'structuralMetadata.columnName': 0, 'structuralMetadata.columnDescription': 0, 'structuralMetadata.dataType': 0, 'structuralMetadata.sensitive': 0}, 'dataClasses': []}"