The IBD Registry has closed current activities while we are in discussions through 2024 about possible transition to an NHS organisation. 

Gut Reaction

Gut Reaction brings together health data from thousands of people living with inflammatory bowel disease (IBD) across the UK. This data can then be used to carry out research to improve IBD treatment and care. It is one of many health data ‘hubs’ funded by Health Data Research UK, the national institute for data science. These hubs aim to develop specialist expertise, tools, and ways of working to maximise insights and innovations across different fields of health data research.

Gut Reaction is a partnership, led by Cambridge University Hospitals NHS Foundation Trust in collaboration with:

  • Data resources (the IBD Registry and IBD BioResource)
  • Participating NHS hospitals
  • Industry
  • Patient organisations such as Crohn’s & Colitis UK
  • Most importantly, people living with IBD.

By working together, Gut Reaction is creating a unique, secure data resource to support research that can improve the lives of people living with IBD through better treatment and care, and even working towards a cure.

Where does the data come from?

Gut Reaction combines health data from participants in the IBD BioResource with data from the IBD Registry and participating NHS hospitals. By bringing together and integrating this data for the first time, Gut Reaction creates a powerful resource to support important research into IBD.

All data is stored safely and securely, and de-identified. Only trusted researchers can access data held by Gut Reaction through what we call a Secure Data Environment (SDE). The IBD Registry has its own SDE, which researchers can use to access our data securely. Importantly, all research requests are assessed and approved by a panel of experts, including patients.

How is the IBD Registry involved in Gut Reaction?

As a partner in Gut Reaction, health data held by the IBD Registry about people with IBD can be linked with data held in the IBD BioResource. This will help to create unique and powerful data to support research into IBD.

We are delighted to have been a trail blazer for advancing health data research as part of the Gut Reaction programme, and we are proud to see our work here being carried forwards into the new NHS data landscape

Graphic showing the logos of all the different partner organisations involved in Gut Reaction.

Making sure that Gut Reaction works for people with IBD

Health data is very private information, and it is essential that the data in Gut Reaction is held securely to protect people’s privacy.

The IBD Registry has a Patient Advisory Group to ensure that patients are at the heart of everything we do. Gut Reaction also has its own Patient Advisory Committee to address questions such as ‘How can we know our information will be kept safely?’ and ‘Who will be able to access it and why?’

People with IBD will be involved at every stage of the Gut Reaction project.

How can I take part?

Gut Reaction enables people with IBD take part in research by getting involved in two projects:

The IBD Registry

The IBD Registry is the national registry for people with IBD. For patients who have joined the Registry, we will collect information about your health from your hospital team and from you, directly. With your permission, we can then link this data with the IBD BioResource as part of Gut Reaction, to provide a fuller picture for researchers.

Joining the IBD Registry is currently closed while we are discussing transfer arrangements. We will update patients and the public with details when further information is available.
 

The IBD BioResource

The IBD BioResource is another research platform, but it holds different data.  It collects blood samples as well as information, which makes it important for research. You can sign up at your nearest participating hospital and take part by completing a health and lifestyle questionnaire and donating a blood sample. Next time you’re at an appointment, ask your IBD team if you can join and take part.

Signing up to both the IBD BioResource and the IBD Registry means there’s an opportunity be called back to take part in more research. This could be a survey, further tests or even a trial.

By securely sharing your health data through Gut Reaction, you’ll be making a huge difference for people with IBD.

Is my hospital taking part?

You can ask your IBD doctor or nurse if your hospital participates in the IBD Registry or the IBD BioResource. You can also look for your hospital on the map (right).

Key
Blue: participating in both the IBD BioResource and the IBD Registry

Red: only participating in the IBD BioResource, not the IBD Registry

Green: only participating in the IBD Registry (dark green: main study, light green: COVID study), not the IBD BioResource