News
The Royal College of Physicians to Act as Interim Steward for Safeguarding the IBD Registry Data
Following the recent announcement of the IBD Registry Closure we are pleased to confirm that the Royal College of Physicians (RCP) has agreed to act as interim steward for safeguarding the data. This means that our data assets, including personal data, will be...
IBD Registry Ltd announces closure amidst NHS data landscape changes
The Board of Directors of the IBD Registry Ltd is saddened to announce the closure of the IBD Registry at the end of March 2024. UPDATE 15 FEB 2024: Data assets, including personal data, will be securely transferred to the Royal College of Physicians (RCP) who will...
Reflecting on 2023: A celebration of numbers
2023 has been a busy time at the IBD Registry. As it draws to a close, we want to express our gratitude for the valuable support we've received from individuals with inflammatory bowel disease (IBD), the healthcare teams dedicated to their care, and our industry...
IBD Registry publishes 2023 Annual Report on Biological Therapies in IBD
The IBD Registry has published its annual report on the use of biological therapies in the treatment of inflammatory bowel disease (IBD), following an exceptionally busy year to deliver on the increasing elements of Quality Improvement (QI) for IBD in the UK. We are...
The journey of patient data at the IBD Registry – World IBD Day 2023
World IBD Day on 19 May provides an opportunity to bring more awareness to Inflammatory Bowel Disease (IBD). Inflammatory bowel diseases are long-term conditions, so collecting information about how people are affected over time is important to help improve treatment...
New resources available for people with IBD
The IBD Registry has co-developed with our Patient Advisory Group (PAG) two new resources for people with inflammatory bowel disease (IBD). The resources include a leaflet and poster. They are available on our website to read online or download and print at home....
Reflecting on 2022: a year of growth
The past year has seen huge change at the IBD Registry, and as 2022 draws to a close, we are grateful for all the support we have received from people with inflammatory bowel disease (IBD) and the clinical teams that care for them. This year has seen great progress in...
Latest biological therapies report shows improved use of safety assessments
The IBD Registry has published its annual report on the use of biological therapies in the treatment of inflammatory bowel disease (IBD), as it prepares for the expansion of the national audit into other vital aspects of patient care in 2023. We have seen further...
IBD Registry study sheds light on patient preferences for remote versus face-to-face appointments
Early findings from a new IBD Registry study reveal that 1 in 10 people with IBD would never want a remote appointment, despite virtual appointments becoming more routine. The new study was presented by Dr Keith Bodger, IBD Registry Academic Lead, at the annual...
“I wanted an opportunity to try and make a difference” – join the IBD Registry this World IBD Day
Collecting and analysing health data provides a wealth of information to help improve services for people with IBD and support research into better treatment and care. As World IBD Day approaches on 19 May, we’re asking everyone with IBD to join the IBD Registry and...
IBD Registry receives ethical approval as a research database
The Health Research Authority Research Ethics Service (RES) has approved the IBD Registry’s data collection and consent process, making research applications to access our data simpler, quicker and more cost-effective. People with inflammatory bowel disease (IBD) can...
Join the IBD Registry to support better treatment and care for people with IBD
People with inflammatory bowel disease (IBD), including Crohn’s disease, ulcerative colitis and other forms of IBD, can now join the IBD Registry online. The IBD Registry collects health data from NHS hospitals and analyses this information to help improve services...