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Gut Reaction: Inflammatory Bowel Disease
Description
Gut Reaction is the Health Data Research Hub for Inflammatory Bowel Disease (IBD). IBD includes Crohn’s disease and ulcerative colitis.
Together, these conditions affect around 500,000 people in the UK. They cause recurring abdominal symptoms, which need long-term treatment and often major surgery. As as result, IBD can significantly affect the lives of those who live with it.
Gut Reaction aims to build on the high-quality health data in the NIHR IBD BioResource by combining it with ‘real-world’ data from participating NHS hospitals, audit and Patient Reported Outcomes Measures (PROMs) from the IBD Registry and genomic data from the UK IBD Genetics Consortium. This will allow researchers to use the pooled data to support important research into IBD.
Gut Reaction is working with hospitals, industry and, most importantly, patients to create a unique, secure data resource for scientists in order to speed research for people living with IBD.
Gut Reaction will create the world’s largest virtual repository of data from people with IBD. It will contain information from more than 34,000 IBD patients who have consented to participate in the NIHR BioResource, including over 7,000 patients for whom detailed hospital records are also held; with similar numbers of participants (who are not necessarily the same people) in both the IBD Registry and the UK IBD Genetics Consortium. Researchers can search the metadata on available data sets and apply for access to the subsets of data to support their research.
Through Gut Reaction’s partner organisations AIMES - who provide secure infrastructure - and Privitar - who provide Privacy Enhancing Technologies - researchers can apply to access robustly de-identified data in a trusted location.
Together, this will enable approved researchers to rapidly identify, access and analyse high-quality IBD data, thereby driving discovery and innovation.
Through the NIHR BioResource, it is also possible to access samples to accompany the data, and to invite people with IBD to take part in clinical studies and trials that might be suitable for them.
Website link: https://gut-reaction.org/