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£5m grant for unique IBD data research hub
We have joined two UK IBD data repositories, the IBD Registry and the NIHR IBD BioResource, as part of the Digital Innovation Hub programme.
Health Data Research UK (HDR UK), the national institute for health science data, are working with us on this project and it has been funded by UK Research and Innovation through the Government's Industrial Strategy Challenge Fund (ISCF).
The £5m collaborative project will also work with a number of IBD services across the UK to bring in other data sources from patient records. As a result, the Health Data Research Hub for IBD will be the world’s largest single repository of IBD data making the UK a global leader in the area.
Already, 25,000 people with Crohn’s or Colitis have provided samples and data to the IBD BioResource, with 12 scientific studies using this invaluable data for their research.
The creation of the Health Data Research Hub for IBD will extend the patient base to 50,000 participants. The Research Hub aims to speed up research for new medicines, treatments, and technologies that support quicker diagnoses and save lives.
This new resource – Gut Reaction – is like gold dust for researchers who will be able to put together genetic and clinical data in a way they have not been able to do before, to really understand what drives the development of Crohn’s and Colitis. We are hoping this will turbo charge the search for faster diagnosis, better treatments and improved quality of life.
The Health Data Research Hub for IBD presents an opportunity for people living with Crohn’s and Colitis, researchers and clinicians to work together to explore the safe and ethical use of health data.
Those involved will be part of decisions about how their data is used to ensure the benefits are returned to the NHS and the wider Crohn's and Colitis community, as well as making sure it is kept safe and secure.
Sign up to be part of the NIHR IBD BioResource
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Helpline Service
Temporary closure - 10/06/2026
Our Helpline will be closed from Wednesday 10 June and will reopen at 10am on Monday 15 June.
We may be closed but we have lots of information here on our website.
If you need urgent medical advice you can call NHS 111 or in Northern Ireland phone your local Phone First. In an emergency call 999 or go to your nearest A&E.
If you need emotional support the Samaritans are available 24 hours a day, 7 days a week on 116 123.
We know it can be difficult to live with, or support someone living with Crohn’s or Colitis. But we’re with you. We can give you the right information and support at the right time.
We’re here for everyone.
How Can We Help?
- We can help you understand Crohn’s and Colitis
- Listen and talk about living with IBD
- Help you connect with others in the Crohn’s and Colitis community
- Give you contact details of specialist organisations
- We can support you to live well with Crohn’s or Colitis and provide up-to-date, evidence-based information
Please be aware we’re not medically or legally trained. We cannot provide detailed financial or benefits advice or specialist emotional support.
Please contact us via telephone, email or LiveChat - 10am to 3pm, Monday to Friday (except English bank holidays).
If you need specific medical advice about your condition, your GP or IBD team will be best placed to help.