The IBD Registry: Harnessing the power of patient data for research into IBD and COVID-19

During the COVID-19 pandemic, over 41,000 people with IBD self-assessed their risk from COVID-19 using our COVID-19 IBD Patient Risk Tool. Almost 10,000 people also agreed to provide further information about their IBD during the pandemic, specifically for use in research. Thank you – your data is vital in helping us understand more about IBD and COVID-19! This data is now being requested by researchers, and we are excited to tell you about two studies that are starting now. You can also find out more about our analysis and research projects on our website.

Project 1: Investigating take-up of the COVID-19 vaccine in people with IBD

This study will use patient data from the IBD Registry’s COVID-19 research survey to explore levels of vaccine uptake in people with IBD in the UK. They will look at factors that might influence whether people with IBD are reluctant to have the vaccine, which will help us identify patient sub-groups who may benefit from education or reassurance about the vaccine and inform relevant public health programmes.

Project 2: Investigating the risks from COVID-19 on people taking immune-modifying therapies for IBD

We are also excited to be working with the NIHR BioResource to link our separate COVID-19 datasets together, to allow for an even greater depth of research. A new study will access both these datasets together to investigate the risk of people on immune suppressing medication experiencing severe effects from COVID-19. This research will also look at the impact of measures such as self-isolation on lifestyle, medical care and treatment. By bringing the datasets together, our researchers can analyse lots of different types of data about people with IBD to better understand the impact of COVID-19 on their lives, build an evidence base for improvements to care, and inform public policy.

Be part of the future of IBD patient data – getting your consent

Our COVID-19 IBD Risk Tool highlighted the value in linking hospital data with information that patients report themselves about their own health. It gives us more accurate and useful data that can be used to improve care for people with IBD. To link our data with other datasets held by trusted healthcare and research organisations in the UK and get the greatest value from your information, the Registry has carefully reviewed its data processes.

Because of this, our consent process is changing. People with IBD will be able to sign up directly with the Registry, rather than only through their hospitals. We will introduce an online consent form so that people can also access it at home, and the new process will make it easier for people participating in the Registry to control how their data is being used.

We will be launching our new consent process in January 2022. To find out more, sign up to our newsletter for more information or visit our website.

You can find out more about our data and how it is used to benefit people with IBD on our website.