£5m grant for unique IBD data research hub

12 September 2019

The Government's flagship programme Industrial Strategy Challenge Fund will create a unique IBD Data Research Hub - a data resource for scientists that will accelerate research for people living with Crohn’s and Colitis across the UK.

We have joined two UK Inflammatory Bowel Disease (IBD) data repositories, the IBD Registry and the NIHR IBD BioResource, to win a £5m award from Health Data Research UK (HDR UK).

The 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 IBD Data Research Hub 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 IBD Data Research Hub 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 – GI Know – 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.

Sarah Sleet,
CEO, Crohn's & Colitis UK

The IBD Data Research Hub 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 IBD community, as well as making sure it is kept safe and secure.

Sign up to be part of the NIHR IBD BioResource.