Visit the Gut Reaction website

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 result, IBD can significantly affect the lives of those who live with it.

We use data to address the urgent need to better understand why patients with Crohn’s Disease and Ulcerative Colitis respond differently to treatments in order to improve people’s outcomes and reduce costs in the NHS. We aim to build on the high-quality health data in the NIHR IBD BioResource by combining it with ‘real-world’ data from participating NHS hospitals and the IBD Registry. This will allow researchers to use the pooled data to support important research into IBD.

The Hub is the world’s largest repository of high quality, consented and linkable data supporting research to change the lives of people living with Inflammatory Bowel Disease.

About Gut Reaction

  • Gut Reaction is working with hospitals, industry and, most importantly, patients to create a unique, secure data resource for scientists to speed up research for people living with IBD.

    Gut Reaction is a partnership of leading organisations in the IBD research, patient support and data security and curation fields, including Cambridge University Hospitals, Crohn’s & Colitis UK, NIHR BioResource, NIHR IBD BioResource, Wellcome Sanger Institute, IBD Registry, Privitar, GSK, AstraZeneca and AIMES.

    The goal during the initial funding period was to integrate health and research data from patients recruited to the NIHR IBD BioResource who have consented for information from their health records to be held in a research database. The specific aims are:

    1. To transfer health records, including digital pathology and digital imaging data, from NHS Trusts, and HES data from NHS England, to AIMES where clinical and phenotypic data are currently held.
    2. To integrate these data with genomic data held at the University of Cambridge High Performance Computing (HPC) Service in a secure environment in Microsoft Azure, where they can be analysed anonymously, with the capability to re-identify to allow contact and recall of individuals.
  • Gut Reaction unites rich UK-wide data sources and expertise, forming a unique resource for driving innovation in IBD. 34,600 IBD patients have consented to participate in the NIHR BioResource, which can be linked with real-world health record data from participating NHS Hospitals, the UK IBD Registry and other national datasets in our state-of-the-art Trusted Research Environments to facilitate innovative research.

    This allows approved researchers controlled access to previously unavailable datasets, promoting clinical innovation. Fourteen NHS trusts have provided data for Gut Reaction so far. Researchers can search available data sets and apply for access to the subsets of data to support their research. This will enable approved researchers to rapidly identify, access and analyse high-quality IBD data, thereby driving discovery and innovation. Through Gut Reaction and the NIHR BioResource, it will also be possible to invite people with IBD to take part in clinical studies and trials that might be suitable for them.

    Working with partners, collaborators and the IBD community, the Hub will continue to support research that makes a difference to those living with IBD.  Gut Reaction are currently reviewing how data is housed, together with the need to supply this under licence to various requestors in different environments. There have been plenty of learnings from UK BioBank and the expectation is a large programme of work over the next 1-2 years.

  • Gut Reaction aims to support research into IBD by combining health data sets from people living with IBD that are currently stored in different locations – for example in NHS hospitals, research resources such as the IBD BioResource and patient registries such as the IBD Registry.

    This is only possible because of the generosity of the participants enrolled in the NIHR BioResource. BioResource participants give consent for researchers to use their data for health research.

    Gut Reaction also focuses on opportunities for ‘personalised medicine’. This means finding which treatment is most likely to be effective for each individual. Understanding which treatments were most successful for the thousands of patients in Gut Reaction will allow future patients to avoid the ‘trial and error’ approach that is experienced by many people with IBD.

    People with IBD are central to Gut Reaction’s work. We work closely with patients and the public to ensure that health data benefits those living with IBD. Our patient advisory committee (PAC) provides oversight and patient input. Their insight and expertise continues to play a vital role in Gut Reaction’s success.