The purpose of the IBD Registry is to improve the health of people living with inflammatory bowel disease in the UK by the collection and analysis of data in order to improve understanding of the care of people with IBD and their treatments and to facilitate research
We do this by collecting and analysing data from IBD patients nationally. With over 67,000 patient-level records, we are one of the largest IBD registries in Europe.
The UK governments have introduced a relaxation of shielding measures for high risk people, although you may be asked to shield again if there's an outbreak in your local area. The shielding scheme in England, Northern Ireland and Scotland paused from 31 July 2020,...
The shift to patient data
Health data is in very much in the spotlight with its potential to underpin real change in the way health services are delivered.
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.
Included in our current activities is a project to allow patient apps (on smartphones and tablets) to integrate securely and with appropriate safeguards maintained into the Registry.
Enabling insights and research through linking health datasets
The assurance of our data safeguarding process has meant that we have been able to link our dataset to other NHS datasets, including the Hospital Episodes Statistics (HES) dataset.
Following from this, we are now part of the HDR UK ‘Gut Reaction’ Hub for IBD, with the goal of enabling research in IBD through the linking of our dataset to other key datasets for IBD.
We are a new not-for-profit company…
… owned by three member organisations: the Royal College of Physicians, The British Society of Gastroenterology, and Crohn’s & Colitis UK. Find out more about us here.
Our growing dataset has the potential to enable new research into IBD and also to inform clinical commissioning decisions.
We work with over 100 hospitals across the UK to gather in defined IBD data on an ongoing (longitudinal) basis.
We are the appointed Quality Accounts provider for IBD by NHS England, enabling the measured improvements in standards of care and treatment.
We use our national hospital data network to support new research projects and also to enable monitoring of the safety of certain new biologic drugs.
The yardstick for quality
The Registry collects data on an ongoing basis from clinical teams nationwide and so is in a unique position to be able to provide regular ongoing measures that reflect quality of care and service within hospitals.
Building on our track record in Quality Accounts and our heritage from the RCP’s Clinical Audit programme we are now pleased to be working in close partnership with IBD Standards 2019 and the BSG IBD QI programme to underpin their work with our tracking and measuring capability. What gets measured, gets done.
IBD Registry Ltd is a not-for-profit company limited by guarantee - Company Number 11197749.
Our Registered Address is 3 St Andrews Place, Regent’s Park, London NW1 4LB. VAT Number 291683766.