Our purpose is to improve the health of people living with inflammatory bowel disease in the UK.
We do this by collecting and analysing data from people with IBD nationally.
Our goal is to improve understanding of the care of people with IBD and their treatments and to facilitate research
With over 80,000 patient-level records, we are one of the largest IBD registries in Europe.
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...
Our 2021 Annual Report on Biological Treatments for IBD
Our second annual report on the use of biological therapies in the treatment of inflammatory bowel disease (IBD) has been published today.
See how clinical performance against Key Performance Indicators has changed amongst increased pressures from COVID-19 in our latest annual report
Thank you to all the IBD teams who are participating in the Registry – every piece of data submitted contributes towards the continuing understanding of this valuable national picture.
July 2021 IBD data submission
Following our July 2021 data collection, we now hold over 80,000 records on IBD.
The graph next to this is interactive – click or hover to show the breakdown of the data we hold between Crohn’s disease, ulcerative colitis and IBD-U.
Thank you to all IBD teams and everyone with IBD across the UK who participates in the Registry. Without your support our work would not be possible.
If you have IBD and would like to participate in the IBD Registry, sign up to our newsletter to hear when we start our new consent campaign later in 2021
Our IBD UK Report on quality of care
The new IBD UK Report “Crohn’s and Colitis Care in the UK: The Hidden Cost and a Vision for Change” sets out the results of the investigation into the quality of care for people with IBD.
Our open letter to the Secretary of State can be read here
The IBD Registry is a founder member of IBD UK. We work together with Crohn’s & Colitis UK and the other key members of the consortium to improve quality of care for people with Crohn’s disease, ulcerative colitis and other forms of IBD
IBD Registry CEO Liz Dobson, Board Chair Dr Barney Hawthorne and Board Director Dr Ian Arnott at the launch of the IBD Standards that underpin the new report
Analysing data nationally and for all participating IBD sites
We produce a local report on IBD for clinical teams from each data submission, along with the national clinical report.
We have just sent out the clinical reports from the Jan 2021 data, and are starting work on analysing the April 2021 IBD data next.
If you are a gastroenterology clinician and would like to know more about how your hospital can participate in the Registry, please see our clinical pages here and then contact us.
The shift to patient data
The Registry is already looking ahead to the future with its ambition to incorporate and build around patient-reported outcomes and patient-entered data.
We believe that the rise of patient data will mark a shift in both care and process for patients and the clinical teams that support them.
Our COVID-19 IBD Risk Tool has set out the start of our pathway on the journey towards supporting patient understanding of their
Working with IBD teams across the UK
We work with IBD teams based at NHS hospital sites across the UK for data collection.
These include sites that provide IBD services for adults, children’s sites (called paediatric) and mixed sites (adults and children)
Since the pandemic started in early 2020, we have also been collecting patient-entered data on COVID-19 risk, and making that available to NHS hospitals across the UK as well.
Key to the interactive map
Adult site Paediatric Site
Adult & Paediatric Site COVID-19 Tool Contributor
Prof Andrew Goddard, President of the Royal College of Physicians and founder Board member for the IBD Registry, talks about the founding of the Registry as an independent organisation.