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.
Sarah Sleet,
CEO, Crohn's & Colitis UK
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
