Knowledge Repository

Explore resources for improving research through better practices

Data

Improve the quantity and quality of data used in your study with innovative resources and tools.

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Search best practices for engaging a variety of stakeholders throughout the research process.

Research

Explore innovative tools and models that can be used throughout every stage of your research project.

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Resource Type: Data Report, Database
Audience: Researchers, Clinicians, Industry, Hospitals and Health Systems, Payers

Sensory Health Population Insights Report

This report describes the results of a data query of the patients with sensory-related health conditions that had at least 1 face-to-face encounter and a recorded diagnosis code (e.g., ICD-10) at a health care setting…
Data
Resource Type: Guide, Standard Operating Procedure
Audience: Researchers, Clinicians, Hospitals and Health Systems, Industry, Payers

Master Code Set

The master code set provides a centralized, standardized reference of clinical codes across various disease areas along with their corresponding descriptions and classifications. It is designed to support consistent cohort definition, analysis, and reporting by ensuring uniform use of codes across…
Data
Resource Type: Data Report
Audience: Researchers, Clinicians, Industry, Hospitals and Health Systems, Payers

Metabolic and Endocrine Conditions Population Insights

This report describes the results of a data query of the patients with selected metabolic and endocrine conditions that had at least 1 face-to-face ambulatory encounter and a recorded diagnosis code (e.g., ICD-10) at a…
Data
Resource Type: Data Report, Database
Audience: Researchers, Clinicians, Industry, Hospitals and Health Systems, Payers

PCORnet® CRN Population Insights

This report describes the results of a data query of the patient population with at least 1 face-to-face encounter and a recorded diagnosis code (e.g., ICD-10) at a health care setting across PCORnet between January…
Data
Resource Type: Data Report, Database
Audience: Researchers, Clinicians, Industry, Hospitals and Health Systems, Payers

Women’s Health Population Insights

This report describes the results of a network data query of the patient population of women receiving health care services at clinical sites across PCORnet between January 1, 2019 – December 31, 2023. The query…
Data
Resource Type: Data Report, Database
Audience: Researchers, Clinicians, Industry, Hospitals and Health Systems, Payers

Gene Therapy Data Report

This query of PCORnet data resources describes the patient population who have undergone gene therapy between January 1, 2016, and June 30, 2024, with distinct cohorts created for gene-therapy-eligible cancer patients and gene-therapy-eligible noncancer patients.…
Data
Resource Type: Guide, Plan
Audience: Researchers, Clinicians, Hospitals and Health Systems

Common Data Model (CDM) Data Quality Validation

This document outlines the data quality validation processing for populating the CDM data model and defines measures that each domain follows during validation processing. Data quality validation covers several aspects including data content validation, data…
Data
Resource Type: Data Report, Database
Audience: Researchers, Clinicians, Industry, Hospitals and Health Systems, Payers

Mental and Behavioral Health Data Report

This report characterizes the patients with recorded diagnosis codes for mental and behavioral health (MBH) conditions that received care at health care settings across institutions participating in PCORnet. The tables in this data report present…
Data
Resource Type: Data Report, Database
Audience: Researchers, Clinicians, Industry, Hospitals and Health Systems, Payers

Characteristics of the Pediatric Population Across Clinical Research Networks Participating in PCORnet®

This query of PCORnet data resources describes the sociodemographic and clinical characteristics of the population of pediatric patients ages birth to 20 years old with at least one face-to-face health care encounter at a PCORnet…
Data
Resource Type: Data Report, Database
Audience: Researchers, Clinicians, Industry, Hospitals and Health Systems, Payers

Maternal Morbidity and Mortality (MMM) Data Report

This query of PCORnet® data resources describes the sociodemographic and clinical characteristics of a population of patients with a pregnancy-related event that had a healthcare encounter at a partner site between October 1, 2016 –…
Data
Resource Type: Template
Audience: Researchers, Clinicians, Hospitals and Health Systems

INSIGHT Data Visualization Templates

The INSIGHT Data Visualization Template provides templates of data visualizations that capture the demographic breakdown of a CRN’s patient cohort. A list of data elements available to request is also available. These slides can be…
Data
Resource Type: Data Report, Database
Audience: Researchers, Clinicians, Industry, Hospitals and Health Systems, Payers

Characterizing Telehealth Visits Across Clinical Research Networks Participating in PCORnet®, The National Patient-Centered Clinical Research Network

This query of PCORnet® data resources explores the use of telehealth services among patients at partner sites. The query results aim to showcase how the PCORnet infrastructure can identify disparities in telehealth delivery, understand trends…
Data
Resource Type: Database, Guide, Template
Audience: Researchers, Clinicians, Industry, Hospitals and Health Systems, Payers

GPC Tumor Table Transformation and Linkage

The PCORnet tumor table contains data from hospital tumor registries that are formatted according to standards developed by the North American Association of Certified Cancer Registrars (NAACCR). All hospitals that are accredited by the American College…
Data
Resource Type: Data Report, Database
Audience: Researchers, Clinicians, Industry, Hospitals and Health Systems, Payers

Intellectual and Developmental Disabilities Data Report

This query of PCORnet data resources describes a population of patients with intellectual and developmental disabilities (IDD) with a healthcare encounter at a partner site. This query is the largest known, national-scale descriptive analysis of IDD populations using electronic…
Data
Resource Type: Template
Audience: Researchers

Data Study Flow Resources – Basic

This diagram shows a basic data flow in a study powered by PCORnet® and is intended for sites to include in their IRB application. Using this document, project teams can ensure consistency in IRB applications and…
Data
Resource Type: Template
Audience: Researchers

Data Study Flow Resources – Complex

This diagram shows a complex data flow in a study powered by PCORnet® and is intended for sites to include in their IRB application. Using this document, project teams can ensure consistency in IRB applications…
Data
Resource Type: Guide, Governance
Audience: Researchers, Training Institutions, Hospitals and Health Systems

INSIGHT Data Dictionary

The INSIGHT Data Dictionary provides a detailed look at the data elements in INSIGHT’s Central Repository, including their format and content. Access the Data Dictionary.
Data
Resource Type: Template
Audience: Researchers

Data Sharing Agreement

The Data Sharing Agreement (DSA) is an approved PCORnet template for use by research institutions to speed prep-to-research queries. The DSA defines the standard terms to which the Coordinating Center for PCORnet® will adhere when…
Data
Resource Type: Database
Audience: Researchers, Policy Makers

GPC Reusable Observable Study Environment (GROUSE)

GPC Reusable Observable Study Environment (GROUSE): GROUSE is a Greater Plains Collaborative (GPC) project (as well as name of the data enclave) to obtain health insurance claims from the Center for Medicare and Medicaid Services…
Data
Resource Type: Presentation/Webinar, Guide
Audience: Researchers, Clinicians, Hospitals and Health Systems, Training Institutions

Data Science Analyst Training

The PEDSnet Data Science Analyst course provides training on the structure and use of the PEDSnet CDM for research and approaches to study-specific data quality assessment. Access the Data Science Analyst course.
Data
Resource Type: Guide, Governance
Audience: Researchers, Clinicians, Hospitals and Health Systems, Industry

HERO Data Dictionary

Use this resource to review information, content, format, and structure of the HERO (Healthcare Worker Exposure Response & Outcomes) Research database and the relationship between its elements. Access the resource here.
Data
Resource Type: Guide, Governance
Audience: Hospitals and Health Systems, Researchers

Daquery

The PaTH Clinical Research Network (CRN) Department of Bio-Medical Informatics team developed Daquery a tool used to deploy code, as well as to automate and archive network-wide Quality Assurance queries. The code is publicly available…
Data
Resource Type: Database
Audience: Researchers, Policy Makers

PCORnet Common Data Model

The PCORnet Common Data Model, developed by the PCORnet community, standardizes millions of data points from the Network’s clinical information systems into a common format. As a result, users of PCORnet can ask the same…
Data
Resource Type: Presentation/Webinar, Guide, Communications and Outreach
Audience: Researchers, Purchasers, Clinicians, Industry, Patients, Policy Makers

PaTH to Health Just-In-Time Data Analysis Training Part 2

The PaTH Clinical Research Network (CRN) developed this training to understand the importance of statistical tests in explaining study data, to become familiar with some statistical language, such as p values and null hypotheses and…
Data
Resource Type: Presentation/Webinar, Guide, Communications and Outreach
Audience: Training Institutions, Purchasers, Clinicians, Industry, Patients, Policy Makers, Payers

PaTH to Health Just-In-Time Data Analysis Training Part 1

The PaTH Clinical Research Network (CRN) designed this training explaining the benefits and limitations of observational studies, common data issues and how to manage them via the PaTH to Health Diabetes Study. Access the resource…
Data
Resource Type: Evaluation
Audience: Researchers, Clinicians, Hospitals and Health Systems, Payers

Pilot Linkage Project Process and Results

PCORnet CMS Linkage Pilot Team has released a white paper to help others learn more about how to use Medicare claims data to support studies. The pilot team developed a process for using Medicare claims…
Data
Resource Type: Guide
Audience: Researchers, Patients, Policy Makers

PaTH: How EHR Data is Collected and Protected via a Chocolate-Making Analogy

The PaTH Clinical Research Network (CRN) developed this guide to explain how electronic health record (EHR) data is captured, protected, and utilized for research purposes via a chocolate-making analogy. Access the resource here.
Data
Resource Type: Guide
Audience: Researchers, Patients, Policy Makers

PaTH to Health: Diabetes, Chocolate Making & Data Extraction Video

This video on electronic health data utilizes the metaphor of making chocolate to clearly lay out how electronic health records can be used to anonymize data. It is a useful tool for clearly explaining EHRs…
Data
Resource Type: Presentation/Webinar
Audience: Researchers, Clinicians, Hospitals and Health Systems

Measuring an Epidemic

Speakers John Muench, MD, MPH and Thuy Le, MPH, both of OCHIN discuss the liberalizing of chronic opioid prescribing in the 90s was soon followed by unforeseen harm to individuals and communities. Muench and Le…
Data
Resource Type: Guide, Manual
Audience: Patients, Clinicians, Hospitals and Health Systems, Payers

Common Data Model Glossary

This is the PCORnet Common Data Model Glossary. Use this to learn how terms are used in the context of the PCORnet Common Data Model. Access the resource here.
Data