Why you should join the IBD Registry

The IBD Registry collects health data from thousands of people across the UK living with Crohn’s and Colitis, as well as other types of inflammatory bowel disease (IBD). This helps build a national picture of the disease, to help improve treatment and care, and support vital research.

If you have Crohn’s, Colitis, or another form of IBD, you can join the registry and agree to your health data being part of this valuable resource. The more people who join, the more power their combined data has in increasing our knowledge about these conditions.

We spoke to Rachel Hunter, from IBD Registry, about this important resource and its impact so far.

How does the IBD Registry help improve treatment and care?

We collect health data from NHS hospitals that provide treatment and care for people with Crohn’s and Colitis. Analysing this information helps hospitals find out where they can improve their services and how effective different treatments are. For example, we can find out how long people are taking a particular medication before moving on to a different treatment. It also shows us how often people are having their medication reviewed by their IBD teams to check that they are working.

Clemmie joined the IBD Registry to support ongoing improvements to hospital services for people with Crohn’s and Colitis. She was diagnosed with Colitis at the age of 9, and now works as a nutritionist.

A lovely client of mine made me aware of the IBD Registry and I’m so glad she did. I’m passionate about improving the lives of other people with Crohn’s and Colitis, so joining the Registry was an easy decision for me. In my job I see that hospitals vary greatly, so anything we can do to help improve them is so important.

I joined the IBD Registry recently and found completing the online form very easy. It didn’t take much time and felt like my data was safe and secure. If you want to help improve IBD services, or support research, I definitely recommend joining the registry.

Living with Colitis

How does the IBD Registry support research?

If you join the IBD Registry, you can give permission for your health data to be used in research projects that help improve outcomes for people living with Crohn’s and Colitis. This is separate to allowing your data to be used in improving hospital services, so you have control over how your data is used.

If you are particularly interested in research, we can also contact you about studies that you may want to take part in. This helps researchers to recruit the participants they need and carry out successful studies.

The IBD Registry is also a partner in Gut Reaction, which means our data can be combined with data from other approved organisations, such as the IBD BioResource. This can support more in-depth research into Crohn’s and Colitis, and other forms of IBD.

For example, combined data from the IBD Registry and the IBD BioResource is being used in a study investigating the risks of severe side effects from COVID-19 for people on immunosuppressants. This study was made possible thanks to the 10,000 people who agreed to their data being used for research into IBD and COVID-19.

Anne joined the Registry because she wants to support future research into Crohn’s and Colitis. She was diagnosed with Crohn’s when she was 28 and is now 73.

I get involved in research because all those years ago I was worried about having children, and how Crohn’s or Colitis might affect them. Now with two healthy children in their 40s and five grandsons, I’m even more invested in supporting further research into new treatments and knowing exactly what causes the conditions. 

I haven’t had a Crohn’s flare since 1990, but I have had other health problems appearing as I get older, and these may all be connected. I’m often in contact with new patients, and I hear all kinds of stories about lengthy delays before diagnosis and urgent bowel surgery due to missed symptoms. I’d like to see progress on all these issues.

I heard about the IBD Registry through Crohn’s & Colitis UK, and I think it’s important to share our experiences - good and bad - so that in future new systems can be put in place to improve diagnosis and treatment.

Living with Crohn's

Join the IBD Registry

We'll use your data to support better care for people with Crohn's and Colitis


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Helpline service


We know it can be difficult to live with, or support someone living with these conditions. But you’re not alone. We provide up-to-date, evidence-based information and can support you to live well with Crohn’s or Colitis.

Our helpline team can help by:

  • Providing information about Crohn’s and Colitis.

  • Listening and talking through your situation.

  • Helping you to find support from others in the Crohn’s and Colitis community.

  • Signposting you to specialist organisations.

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 - 9am to 5pm, Monday to Friday (except English bank holidays).

Live chat

If you need specific medical advice about your condition, your GP or IBD team will be best placed to help.

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