The Inflammatory Bowel Disease (IBD) BioResource is a national platform that supports research into Crohn's disease and ulcerative colitis to increase understanding of IBD, accelerate the development of new and improving therapies and improve the care of patients.
Inflammatory Bowel Disease (IBD), including Crohn’s disease and ulcerative colitis, affects around 500,000 people in the UK and is marked by recurring inflammation of the digestive tract.
Management usually involves long‑term diet and lifestyle changes alongside medication, but responses to treatment vary widely and are not fully understood, meaning many people still require surgery to remove damaged sections of the bowel.
The IBD BioResource supports vital research into IBD by providing approved investigators in academia and industry with access to its participant panel.
This resource is available to investigators across the UK to support IBD research and speed up the development of targeted treatments.
Recruit 55,000 patients with Crohn’s or ulcerative colitis, including 2,000 people newly diagnosed (the ‘inception’ cohort)
Undertake genetic analysis to understand the causes of Crohn’s disease and ulcerative colitis and identify genetic determinants of IBD severity and treatment response
Provide rapid access for researchers to large, well-characterised IBD patient groups and de-personalised genetic and clinical data
Notify participants of future research opportunities and invite them to take part
Researchers can request access to:
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:
The NIHR BioResource will hold data for 10 years beyond the end of its funding, which currently runs until March 2029, subject to renewal. Further details on data collection, storage 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 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.
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.
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. Contact the team on ibd@bioresource.nihr.ac.uk for assistance.
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 more than 700 participants across 13 active sites. The PIBD BioResource is led by Professor Holm Uhlig, a paediatric gastroenterologist in Oxford.
In the video below, a young participant and members of the Research Team share more about the PIBD BioResource.
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.
