NIHR IBD BioResource celebrates Crohn’s and Colitis Awareness Week (1-7 Dec)

Everyone in the Crohn's and Colitis community has a unique story to tell. That’s why the theme of the #CrohnsAndColitisAwarenessWeek for this year is looking at all the different ways patients stories can make a difference to the work of the charity Crohn’s & Colitis UK and the lives of people affected by Crohn's and Colitis. Patients are therefore being encouraged to tell their stories on the Crohn’s & Colitis UK website.

Crohn's and Colitis UK Awareness Week

Inflammatory Bowel Disease (IBD) – the two main forms of which are Crohn’s and Ulcerative Colitis, affects about 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 re-callable IBD patients and create a detailed panel of genetic and clinical descriptive data. This panel is accessible by any investigators to assist IBD research studies and clinical trials, and to accelerate the road to developing new, better-targeted and successful treatments. To date, we have already recruited over 35,000 IBD patients.

The Gut Reaction Health Data Research Hub for Inflammatory Bowel Disease (IBD) is funded by Health Data Research UK (HDRUK) through the Government’s UK Research and Innovation (UKRI) Industrial Strategy Challenge Fund (ISCF), to facilitate research into IBD by bringing together datasets from different sources.  Working with our partners, collaborators and funders, we support research that makes a difference to those living with IBD.

Day to day life can be a struggle for patients with Crohn’s and Colitis with patterns of flare ups, treatments and remission; and there is still some public misconceptions on the broader impact of this condition. IBD patients can spend a lot of time in hospitals, getting a diagnosis, ensuring their treatment is right for them but also to undergo surgery. It can be challenging for some IBD patients to be able to get on with their life, have a career and plan for their future.

As someone who lives with Crohn’s Disease, Rosanna, Patient Representative for the Gut Reaction Health Data Research Hub and IBD BioResource participant said: “It’s #CrohnsAndColitisAwarenessWeek and these invisible conditions cause more than just pain. They disrupt all areas of your life - your education, your work, and your relationships. We need greater awareness of the effects of these conditions, more research into treatments, and a greater understanding of what patients and their families go through every day.”

Graphic representing bowel and colon pain or inflammation

Professor Miles Parkes, NIHR IBD BioResource Principal Investigator; said: This is an exciting time in IBD. We have a number of new treatments coming through; and the potential for scientific breakthroughs in a number of directions which should enable development of many more in the future. The latter will significantly be built on detailed genetic and ‘functional genomic’ characterization of people with Crohn’s and Colitis – understanding how genes can lead to the development of persisting gut inflammation and affect how this behaves and how well it responds to treatment.

“All of this science can be accelerated by people’s willingness to support the research, generously giving a bit of time, allowing access to their healthcare data (in carefully controlled and secure ways), and providing samples for genetic analysis. The IBD BioResource depends critically on people’s generosity in this regard. Together with our patient community and scientific colleagues we are making great strides towards understanding and better treating Crohn’s and Colitis, and we would like to thank all involved for their help.”

Sarah Sleet, CEO of Crohn’s & Colitis UK added: “We are delighted to support the NIHR IBD BioResource, which is a crucial tool to helping us better understand Crohn’s and Colitis and develop new and better treatments for the conditions. Thanks to the many researchers and the 35,000 people already involved, we can be optimistic that the work of the BioResource will improve the lives of people living with Crohn’s and Colitis.”

This week in particular, the NIHR BioResource aims to raise awareness about Crohn’s and Colitis and whilst key IBD research is taking place.


Why not learn more about the IBD BioResource and how you can get involved.