About IBD BioResource
Inflammatory Bowel Disease (IBD), which includes Crohn’s disease and ulcerative colitis, affects around 500,000 people in the UK and is characterised by relapsing inflammation affecting the gut. Longterm management usually involves diet and lifestyle modifications and drug therapies.
Response to treatment varies widely for reasons that remain poorly understood, and surgery to remove inflamed and damaged sections of the bowel is still often required.
The IBD BioResource was established in 2016 to support efforts to improve outcomes for people with Crohn’s and colitis through research.
We aim to build a national research platform of 55,000 recallable patients and create a detailed panel of genetic and clinical data.
This resource is available to investigators across the UK to support IBD research and speed up the development of targeted treatments.
To date, ~50,000 people living with IBD have enrolled and are taking part, including >1,800 individuals who were newly diagnosed at the time they joined the IBD BioResource.
Key goals
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Recruit 55,000 patients with Crohn’s or ulcerative, including 2,000 people newly diagnosed (the ‘inception’ cohort)
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Undertake genetic analysis to understand the causes of Crohn’s disease and ulcerative colitis and identify genetic determinants of IBD severity and treatment response
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Provide rapid access for researchers to large, well-characterised IBD patient groups and de-personalised data.
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Notify participants of future research opportunities and invite them to take part
Translational Research
The IBD BioResource supports vital research into IBD by providing approved investigators in academia and industry with access to its participant panel. Researchers can request access to:
- Data only
- Data plus biological samples
- Participant recall for studies such as surveys, intervention studies, and clinical trials.
All participants consent to long-term secure storage of their samples and data, and to being contacted about suitable research. Available samples include serum, plasma and DNA. Available data may come from local healthcare records or national databases, such as:
- Medical notes
- Laboratory results
- NHS Digital databases
- Public Health England databases
- Prescribing databases
- National cancer registries
Details on data collection, storage, retention, and sharing are provided in the NIHR BioResource Privacy Notice.
Why this matters
Access to healthcare records—and the ability to link information from different sources—is absolutely vital for research. It helps to answer important questions and build a complete, accurate picture of how IBD affects people over time. Linked data for approved research studies is shared in a de-identified manner (in other words, so that participants cannot be identified). This kind of data linkage may allow researchers to understand treatment outcomes, disease progression, and the real-world impact of new therapies.
See example of a data linkage study in IBD BioResource Winter Newsletter.
Paediatric IBD (PIBD) BioResource
The paediatric arm of the IBD BioResource aims to build a cohort of 800 paediatric IBD patients, including 150 newly diagnosed, to establish an overall resource of 5,000 paediatric onset IBD patients.
We have recruited >700 participants across 13 active sites. The PIBD BioResource is led by Professor Holm Uhlig, a paediatric gastroenterologist in Oxford. Find out more about his work and PIBD.
A young volunteer and members of the Research Team share more about the PIBD BioResource at the Oxford BioResource Research Centre.
Gut Reaction
Gut Reaction builds on the NIHR IBD BioResource by combining its high-quality data with real-world information from NHS hospitals. This combined dataset supports vital research on IBD and improves understanding of the condition.
Get in touch
If you are interested in finding out more about the BioResource or if you have questions, email us at [email protected]
Where do we operate?
The IBD BioResource is active in more than 80 participating hospitals across the UK, including one in Scotland and three in Wales.
What does taking part involve?
We are looking to recruit volunteers with IBD from participating hospitals across the country who are willing to provide a blood sample, complete a health and lifestyle questionnaire, and agree to be contacted about future research studies that may be relevant to them.
We have been running our Research platform since 2016 and have recruited ~ 50,000 participants to date. To ensure we achieve diverse representation across the UK, we are now placing particular focus on recruiting volunteers from underrepresented ethnic groups—especially Black and Asian adults. We are also continuing to enrol IBD patients of any ethnicity who have been newly diagnosed within the past 12 months, as well as children with IBD.
If you would like to join, please check whether your hospital is listed as an open site, as all recruitment takes place through local hospital clinics.
Our Centres and Programmes
The NIHR BioResource is a network of Centres that recruit participants locally and lead research programmes.
