COVID-19 UK IBD tool for patients
- Find out your risk from COVID-19
- Help us find out how COVID-19 affects people with IBD across the UK
- Take part in research to understand COVID-19 and IBD
We are hiring – three systems and data science roles
The IBD Registry is a small, fast-moving and innovative organisation working in the world of healthcare data to provide insights and solutions that benefit people with inflammatory bowel disease (IBD). We are looking for three systems and data science professionals to...
Follow-up survey to the COVID-19 IBD Risk Tool
May 2021
To be able to support clinical teams as well as enable research into COVID-19 and IBD, we are inviting all the people who used our COVID-19 IBD Risk Tool to do a set of short surveys on their experience of COVID-19.
If you choose to complete it, relevant details regarding your medications, IBD activity and COVID-19 vaccination status will be made available to your hospital IBD specialist teams.
The surveys are by invitation-only (they are not on this website). We are only sending this invitation to the people who self-assessed their risk using the COVID-19 IBD Risk Tool
This survey data, together with the original data, will also enable important and ethically-approved research into COVID-19 and IBD.
It is completely voluntary so if you do not want to take part you do not have you.
Look out for the email from us (or text/SMS if you gave us a mobile phone number for this). There will be full details in the invite, including a detailed patient information leaflet and a privacy notice. The link you will receive is personalised to you, so please do not forward it
The survey has now closed (following its extension to the 25 June 2021
Thank you to everyone who took part in the follow-on survey. Over 9,500 replied with consent for research, and of those, 8139 completed the surveys. We are very grateful for your time in completing this, and we will be putting updates on our website and in our newsletter to keep all updated as to progress.
What is the COVID-19 UK IBD tool ?
In March 2020 at the start of the COVID-19 pandemic, 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 BSG (British Society of Gastroenterology) produced the official IBD Risk Grid that set out what risk people with IBD were considered to have. The IBD Registry then created this online IBD Risk Tool base on that Risk Grid to allow people with IBD to self-assess and understand their risk level.
How to use the COVID-19 UK IBD tool
- If you have IBD, go to the COVID-19 UK IBD tool, complete the questionnaire and submit your results. Doing this will make sure that your risk level is based on accurate, up-to-date information from you.
- After you’ve entered your data you can download and print a document confirming your risk group.
- You can do this as many times as you like.
- It really helps us if you have your NHS number, but it’s not essential.
What will the data be used for?
This important data will be used to:
- Collect relevant information from people in the UK living with IBD, to be able to quickly and easily determine the level of risk
- Allow respondents to enter details about their health and hospitals, specialist doctors and the GPs that care for them so that the responses can be shared with both the hospital teams that currently care for them and their GP. This means that they have the most up to date information about their patients’ condition and treatment which could be relevant during this COVID-19 response period. In addition, this information can be shared centrally with NHS England and equivalent bodies in the devolved nations to allow them to better respond to the COVID-19 pandemic. [Update 31 July 2020 – this element is being paused due to the end of shielding announced by the Uk Government from 01 August 2020. We will continue to monitor the situation and official advice, and may restart this if required]
- Enable specialist doctors and GPs to contact patients to:
- Request more information if necessary
- Inform patients if any changes are made to advice for patients on their risk
- Provide any specific advice based on their risk status or individual needs
- Support their medical needs in any other way during the COVID-19 outbreak
- Enable research and/or analysis to improve care and treatment for IBD patients in relation to COVID-19
How is the data protected?
The UK IBD Registry is the Data Controller for the personal information we process in the tool. All data collected will be processed in accordance with the General Data Protection Regulation (GDPR) and the Common Law Duty of Confidentiality (CLDC).
The data is being collected using a well-established web-based tool designed for undertaking medical surveys and is held within a secure datacentre which is compliant with industry and NHS data security standards.
Where can I read more about ?
For further information of how your data will be used and protected, including details of our lawful basis, the purposes for which personal confidential data will be processed, your rights and how to contact us, please see the full COVID-19 IBD RIsk Tool Privacy Notice here
Monitoring the situation
We will continue to watch the UK situation and respond accordingly, including advice from the UK Government and from the BSG (British Society of Gastroenterology) . We will update this webpage in response to any further major changes. Official advice is constantly changing. For up to date information on the latest guidance published in the four nations and what it means for people living with Crohn’s and Colitis visit Crohn’s and Colitis UK or CICRA
Cathryn Edwards, BSG President 2018-2020
Cathryn Edwards was BSG President during the development of this COVID-19 IBD Risk Tool, and her original statement on its release on the 01 April 2020 is below:
“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. Click here to do this.
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
Your feedback
We’ve worked hard to make our tool and the information about it easy to understand and use. If you have suggestions on how we could improve anything, we’d really like know.
Please only use this form for feedback on the tool itself. We’re unable to answer questions on COVID-19 and IBD – we are only a small staff and we are not a medical office. Your IBD team are best able to help you with specific medical enquiries. Crohn’s & Colitis UK and CICRA also have more general patient information and guidance available on their websites.
Working together to combat COVID-19
We’ve been able to develop our tool rapidly thanks to the collaboration of a number of clinicians and partners. We’re happy to share what we’ve learned in order to help others.
Clinical and academic groups, please contact support@ibdregistry.org.uk
Media and other enquiries, please contact comms@ibdregistry.org.uk
IBD Registry Ltd is a not-for-profit company limited by guarantee - Company Number 11197749.