The IBD Registry is now the National IBD Registry as part of NHS England’s Outcomes and Registries Programme

Mastering Effectiveness Research by Meta-Analysing Trial and Real World Evidence in Immune-mediated inflammatory Diseases (MERMAID)

We would like to inform you about a research project called MERMAID that wants to use data from the IBD Registry. 

The IBD Registry itself is in the midst of transitioning to the new NHS England Registries platform, as one of many registries to do so.  This has taken longer than hoped for, and research projects utilising data from the registry have been waiting while this takes place.  One of these is an important 5-year national study called MERMAID, which started in 2024 (ethics approval IRAS ID 357756).  The delay has meant that we are asking for special interim permission to access and process the patient data that we hold for MERMAID, before final transition has taken place.

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Logo for MERMAID
University of Manchester logo

About the Study

The MERMAID (Mastering Effectiveness Research by Meta-Analysing Trial and Real World Evidence in Immune-mediated inflammatory Diseases) study is a five-year research programme aiming to improve how we use evidence to make treatment decisions for immune-mediated inflammatory diseases (IMIDs), including inflammatory bowel disease (IBD), psoriasis, rheumatoid arthritis, and lupus. The study is based within the University of Manchester, led by Dr. Zenas Yiu, who is a specialist treating inflammatory skin diseases. This data will be combined with data from British Association of Dermatologists Biologics and Immunomodulators Register (BADBIR) for psoriasis, UK-Irish Atopic Eczema Systemic Therapy Register (A-STAR) for atopic eczema, British Isles Lupus Assessment Group Biologics Register (BILAG-BR) for lupus, British Society for Rheumatology Biologics Register-Rheumatoid Arthritis (BSRBR-RA) for RA.

Please find a fuller description at the end of this webpage if you would like to learn more about this study.

How the IBD Registry Data Would Be Used for MERMAID

The IBD Registry would prepare a specially selected dataset for the MERMAID research team to use.  This would be only the data items needed for the research, and with all the data items that could identify you (like your NHS Number) removed.  This de-identified data would be securely provided to the MERMAID team .  As part of their research, the MERMAID team would:

  • Compare real-world outcomes with results from clinical trials
  • Explore how patient characteristics (e.g., age, gender) affect treatment responses
  • Adjust trial findings to better reflect the UK population
  • Predict and validate outcomes of ongoing clinical trials

Why We Are Asking for Special Permission to use the IBD Registry data for MERMAID

A research study like MERMAID would usually ask patients for their consent for their data to be used.  Due to the transition status of the IBD Registry, which includes limited operational capability during this time, it is not possible to obtain individual consent for this study. We have considered a broader public consent campaign, but this would take longer than study timelines allow and exceed the resources available to us.  Given these limitations, we formed a smaller ‘focus group’ of people with IBD to hear their thoughts. The focus group found the proposed use of IBD Registry data to be acceptable.

With this guidance, and support from the Confidentiality Advisory Group (CAG), we are proposing a public transparency and opt-out process. This will allow anyone who does not want their data to be used to ‘opt-out’, which means their data will not be included for the research study.

There will be a 6-week window for submitting opt-out requests, between 02 March– 13 April 2026.  After this period, any opt-outs will be removed and the remaining data will be processed to create a de-identified dataset for research.

What should I do if I wish to opt-out?

You can find the opt out form here.  Please download and complete the opt-out form and email to [email protected]. If email is not possible, please post the opt out form to Georgia Reeves to 2.900 Stopford Building, Oxford Road, The University of Manchester, M139PL. For any enquiries, please contact Georgia Reeves at +44 161 306 5610. Please retain a copy of the opt-out form for your records.

Thank you for taking the time to consider this research and how it may help improve care for people living with IBD.

Contact Us

If you have any further questions regarding this research, please contact Georgia Reeves (the MERMAID project manager) on  [email protected] or +44 161 306 5610

Further detail about the study

These long-term conditions affect around 7% of people worldwide and can have a serious impact on health and wellbeing. Many people rely on immunomodulators—medicines that calm the immune system—to manage their condition.

Currently, doctors base treatment decisions mainly on randomised controlled trials (RCTs), which are rigorous but often include limited populations. This can make the findings less relevant for underrepresented groups. Observational studies, which use real-world data like that from the IBD Registry, are more inclusive and cost-effective, but may be less reliable due to potential biases.

MERMAID aims to combine the strengths of RCTs and observational studies to improve how treatment evidence is generated and used, with the ultimate goal of making care more inclusive, personalised, and effective.