The IBD Registry is improving the health of people living with inflammatory bowel disease (IBD) in the UK by collecting and analysing patient data to create greater understanding of the care and treatments they receive and to facilitate research. By collecting patient reported data, alongside clinical data, we are building a powerful picture of IBD which is transforming our understanding of these conditions.
How your patient data is changing our understanding of IBD
Working with nearly 200 hospitals in the UK and with over 67,000 patient-level records, we are one of the largest IBD patient registries in Europe.
The patient data collected by hospitals and volunteered by people with IBD is:
- Helping doctors, nurses and other healthcare professionals to improve the quality, safety and efficiency of IBD care
- Giving a more accurate picture of the number of people in the UK living with IBD
- Increasing our understanding of the impact of Crohn’s and ulcerative colitis on people living with the conditions
- Helping the NHS plan and design better, more personalised IBD services
- Monitoring the safety and effectiveness of medicines - supporting the NHS to understand how drugs work in real world settings and not just in strict clinical trial situations
- Being linked to wider NHS and other datasets, like your genetic data or personal health record, to produce a greater level of accuracy, completeness, and power
- Through its oversight of the national biological therapies audit, the Registry has reported a steady improvement in hospitals performance against goals that have been set to improve quality and safety, implying safer initiation and monitoring of biologic drugs
- The average duration of a course of steroids has fallen by more than a third between 2016 and 2019
- Doctors and nurses have received full quarterly reports to inform practice and support them to take action to improve quality
- The Registry has shown that clinically useful information can be collected in real-time and can be used to influence patient care favourably
Working for the National Health
- Working closely with the British Society of Gastroenterology, we created an online risk assessment tool for patients to help them understand what risk group they were in during the pandemic and whether they should shield.
- Results of the risk tool were shared not just with the patient, but also with the patients’ hospital, helping doctors and nurses to identify patients that should be shielding and requiring support.
How You Can Help Us Continue to Make a Diffierence
Collecting patient data is a vital part of the efforts to improve the lives of people with Crohn’s disease, ulcerative colitis and other forms of IBD. Join the Registry, and by sharing information about your IBD, you can help the NHS, researchers and industry partners to better understand, treat and care for people with these conditions.
To support our IBD doctors and nurses in these busy times, we will be registering people with IBD directly from 2021. If you want us to email you when this is ready, please sign up to our newsletter for future updates. For more information visit our website.