About IBD BioResource
Inflammatory Bowel Disease (IBD), comprising Crohn’s disease and ulcerative colitis, affects approximately 500,000 people in the UK causing relapsing intestinal inflammation. Long-term management often requires major surgery and costly drug treatments to which responses vary considerably for poorly understood reasons. To help in the fight against Crohn’s and colitis, the IBD BioResource was established in 2016.
Our aim is to build a national research platform of 50,000 recallable IBD patients and create a detailed panel of genetic and clinical descriptive data. This panel is accessible by any investigators to assist IBD studies and to accelerate the road to developing new, better-targeted and successful treatments.
We have recruited ~49,600 participants. Of this number, 1,600 participants are part of the newly diagnosed Inception cohort, which focuses on newly diagnosed patients.
Key goals
- To recruit 50,000 patients with Crohn’s or colitis from all over the UK, including 1,000 individuals who are new to their diagnosis
- Genetic analysis to identify markers of disease risk, severity and treatment response.
- Participants to be directly notified of future IBD research projects they might be willing to help with and be recalled for
- Scientists and Clinical Investigators to get rapid access to large groups of IBD patients and to de-personalised data for research
Translational Research
The IBD BioResource supports vital research into Inflammatory Bowel Disease 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 are shared in a de-identified manner. 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 our latest IBD BioResource Winter Newsletter
Paediatric IBD (PIBD) BioResource
The paediatric arm of the IBD BioResource aims to study an overall resource of over 5,000 patients with paediatric onset IBD (PIBD). Those who have already been diagnosed with IBD will be recruited, along with 150 newly diagnosed paediatric patients.
We have recruited 560 participants across 13 active recruitment sites.
The PIBD BioResource is led by paediatric gastroenterologist Professor Holm Uhlig in Oxford. Find out more about his work and PIBD.
Gut Reaction
Gut Reaction aims to build on the high-quality health data in the NIHR IBD BioResource by combining it with ‘real-world’ data from participating NHS hospitals and the IBD Registry. This will allow researchers to use the pooled data to support important research into IBD.
Get in touch
If you are interested in finding out more about the BioResource or if you have questions, email us at nbr@bioresource.nihr.ac.uk
Where do we operate?
The IBD BioResource is open in over 100 participating sites across the UK, including one in Scotland and two in Wales, and has recruited over 46,000 IBD patients to date.
What does taking part involve?
We are recruiting Black and Asian adults and children who have Crohn’s disease or ulcerative colitis and are willing to participate in future IBD research. If you are interested, please check whether your hospital is included in the list of open sites, as recruitment needs to happen through your local hospital clinic.
Our Centres and Programmes
The NIHR BioResource is a network of Centres that recruit participants locally and lead research programmes.
