The Centre uses 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.
What does the Hub do?
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.
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 and the IBD Registry. This will allow researchers to use the pooled data to support important research into IBD.
How does the Hub operate?
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.
It is a research partnership led by Cambridge University Hospitals NHS Foundation Trust and funded by Health Data Research UK (HDRUK).
The partners involved in Gut Reaction are:
- AIMES, Cambridge University Health Partners, Cambridge University Hospitals NHS Foundation Trust, Crohn’s & Colitis UK, Eastern Academic Health Science Network, Leeds Teaching Hospitals NHS Trust, Manchester University NHS Foundation Trust, Microsoft, Newcastle upon Tyne Hospitals NHS Foundation Trust, NIHR BioResource, Pennine Acute Hospitals NHS Trust, Privitar, Royal Devon and Exeter NHS Foundation Trust, Royal Liverpool and Broadgreen University Hospitals NHS Trust, Salford Royal NHS Foundation Trust, UK IBD Registry Ltd, University of Cambridge, University College London Hospitals NHS Foundation Trust, Western General Hospital, Edinburgh
Who are the Hub’s services aimed at?
Gut Reaction will create the world’s largest single 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 7000 patients for whom detailed hospital records are also held.
Researchers can search available data sets and apply for access to the subsets of data to support their research.
Through Gut Reaction’s partner organisations AIMES and Microsoft Azure, researchers applying to access the data have a trusted location to combine data sets, and a secure virtual environment through which to access the de-identified data for analysis.
Together, these 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.
How does the Hub benefit patients and the public?
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 into this project. Their insight and expertise will play a vital role in Gut Reaction’s success.
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