Story of the COVID-19 IBD Risk Tool

What is the Covid-19 IBD Risk Tool?

At the start of the COVID-19 pandemic in March 2020, the UK Government was concerned about the risk for people whose medical conditions and treatments could make them more vulnerable to COVID-19. In response to the Government’s request, the British Society of Gastroenterology (BSG) produced an official IBD Risk Grid that set out the risks from COVID-19 for people with IBD. The IBD Registry then created the COVID-19 IBD Risk Tool based on that Risk Grid to allow people with IBD to self-assess and understand their risk level.

Follow-up survey to the COVID-19 IBD Risk Tool

In April 2021, we invited all the people who used our COVID-19 IBD Risk Tool to do a set of short surveys on their experience of COVID-19. This allowed us to further support clinical teams and enable vital research into COVID-19 and IBD.

Nearly 10,000 people chose to complete the surveys, providing details about their medications, IBD activity and COVID-19 vaccination status. This information was made available to their hospital IBD teams, and is now supporting important and ethically-approved research into COVID-19 and IBD.

Thank you to everyone who took part in the follow-on surveys. We are very grateful for your important contribution to growing our understanding of how COVID-19 impacts people with IBD. You can read more about how this data is being used in research on our Analysis and Research page.

Working together to combat COVID-19

We were able to develop the Risk Tool rapidly thanks to the collaborative efforts of supporting clinicians and partners. You can read some of their comments on the tool below.

We’re also happy to share what we’ve learned in order to help others.

For information on how data was handled during the Covid-19 pandemic, please see our COPI notice.

Clinical and academic groups, please contact [email protected]
Media and other enquiries, please contact [email protected]

Cathryn Edwards, BSG President 2018-2020

Cathryn Edwards was BSG President during the development of the COVID-19 IBD Risk Tool. This was her original statement on its release in April 2020:

“At a time of great uncertainty and anxiety for many people in the UK, I want to reassure you that the BSG is doing everything possible to provide help and accurate information to clinicians and patients alike. In response to the government’s mandate to identify high-risk patients on immunosuppression, the BSG-COVID-19 Working Group has defined and published a grid on risk levels for people with IBD. This grid was also updated for clarity to improve everyone’s understanding of the categories.

You may have already seen this and know whether you fall into the low, medium, or high-risk group. Crohn’s & Colitis UK have been particularly helpful in supporting this with information and FAQs on their website. The partnership between patients, doctors, nurses and our specialty society the BSG, has never been more important than it is today.

Many of you may be asking what you can do to help your IBD team and the NHS get your data correctly recorded. Please consider entering your data into the COVID-19 UK IBD tool as part of our combined efforts against COVID-19. I want to thank you as a doctor and as an individual for supporting this initiative and for following the strict distancing and isolation procedures as advised. The strength of our response to this emergency is in our collective action.”

Stuart Bloom, IBD Registry Medical Director and Caldicott Guardian

“The UK IBD Registry and the British Society of Gastroenterology (BSG) have developed a web-based tool for people with Crohn’s disease, ulcerative colitis or unspecified IBD so they can assess their level of risk relating to COVID-19 and communicate it to their IBD specialist team and the NHS. The tool is simple to use, will take 5-10 minutes to complete, and asks for only enough data to help the NHS help you. All of us in the NHS involved in caring for patients with IBD send you our best wishes at a difficult time and urge you to consider filling in the tool. Your data will be kept securely in line with full information governance requirements and will only be used for purposes relating to the COVID-19 pandemic.”

Nick Kennedy, Consultant in Gastroenterology, Royal Devon and Exeter NHS Foundation Trust and IBD Registry Clinical Technical Lead

“We’ve designed this easy-to-use tool as a practical way to use the BSG’s risk grid to help identify people with IBD who are at the highest risk of serious illness from COVID-19. It also provides a platform for us to help find out how COVID-19 affects patients with IBD. This should significantly improve our ability to evaluate their risk in future.”

Dr Nick Kennedy was awarded the President’s Medal of the British Society of Gastroenterology for his work on the COVID-19 IBD Risk Tool.