What does Gut Reaction do?
For many patients, these records cover their whole IBD journey, from diagnosis to treatment, including different medications and surgeries.
Over time, these data create a detailed picture of how their IBD has developed and progressed, and this information is used to help them make treatment decisions with their doctors.
These health records form a very important source of health data. However, different kinds of this data are stored in different locations – for example, GP surgeries, pathology or radiology clinics, or pharmacies.
Another key source is the data that is collected when IBD patients take part in research. People who participate in research through the NIHR IBD BioResource (part of the NIHR BioResource) provide a biological sample (usually blood) that can be used to read their genetic information (DNA) and provide other information about them, such as their blood type and information about how their immune system is functioning.
NIHR BioResource participants also complete a health questionnaire and allow access to their health records. The biological samples and data are safely and securely stored in the sample repository in Milton Keynes, and the data at University of Cambridge.
Gut Reaction aims to develop tools to make it possible to bring these sources of data (real-world health data and research data from the BioResource) together on thousands of people with IBD, so that clinicians and scientists can access these data for research purposes without compromising privacy of individuals or the security of the data.