The purpose of the IBD Registry is to improve the care of patients and understanding of the treatments they receive, to enable research, and to increase knowledge about IBD in the UK.
We do this by collecting and analysing data from IBD patients nationally. With over 60,000 records, we are one of the largest IBD registries in Europe.
PROMs: early benefits for care of IBD outpatients who directly report their symptoms via digital tablet
Pic: Pearl Avery, Clinical Nurse Specialist at Dorset County Hospital, by her clinical poster at ECCO2020, Vienna A UK nurse-led hospital team working with the IBD Registry has announced the success of an initiative to capture data reported directly by outpatients who...
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.
Important information for Registry-participating clinical teams: the next data submission deadline is 3rd April 2020 although data can be submitted before this date. Later deadlines this year (both Fridays): 10th July and 9th October.
Unlocking value 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, especially the Hospital Episodes Statistics (HES) dataset.
This has enabled our data analytics team to produce new insights, on a per hospital basis, from combining our wide knowledgebase of IBD with the focused data of the emergency admissions dataset.
Dr Keith Bodger, Academic Lead for the Registry, talks about the benefits of linking Registry data to other datasets.
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.
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.
NEW: IBD Registry, patient consent and the National data opt-out - FINAL (PDF 150KB)
|IBD Registry Patient information leaflet – April 2019||Download here|
|IBD Registry Large Font/Accessible Patient information leaflet – April 2019||Download here|
|IBD Registry Adult consent form – May 2018||Download here|
|IBD Registry Paediatric consent form – May 2018||Download here|
|IBD Registry A4 poster - May 2018||Download here|
|IBD Registry patient consent guidance for hospitals (England and Wales) - August 2017||Download here|
020 3393 3969
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.