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 72,300 patient-level records, we are one of the largest IBD registries in Europe.
Taking a much-needed few days rest at the end of a year that I think most of us didn't see coming. Carefully laid annual plans went out of the window in March to be replaced by COVID-19 reactive planning. That included the COVID-19 IBD Risk Tool, our sleeper surprise...
2020: end of a long, strange year
2020 was definitely the year that we didn’t see coming. Carefully laid annual plans went out of the window in March to be replaced by COVID-19 reactive planning. That included the COVID-19 IBD Risk Tool, our sleeper surprise of the year. We thought it would help a few people with IBD to assess their risk; by August, over 34,000 people with IBD had used the Tool – an astounding number. In all this, a huge thanks to the wonderful IBD clinical teams who kept us running with data – despite everything, they still submitted 12,000 new records.
We have big plans for 2021. We have a big shift to become patient-facing as well as our current clinical-facing, including online joining for the Registry and directly-collected patient data. Let’s hope we can stay on course a little more this year! Sign up to our newsletter to stay in touch
HDR UK’s Alliance Symposium 2020 – our COVID-19 Risk Tool story won the Lightning Talk competition !
We were very pleased to be shortlisted as one of only 4 ‘lightening talk’ presentations for healthcare innovation at HDR UK’s annual symposium recently, and delighted when the audience voted us the winning talk! Thank you everyone that voted for us. The prize giving is June 2021 at HDR UK.
The story of the Registry’s COVID-19 IBD Risk Tool is of over 34,000 people with IBD helped, from 174 Trusts and Health Boards across the UK, with a secure and compliant tool built in just 8 days.
As shielding is back in the news again, the Tool is still available for use on our dedicated webpage https://ibdregistry.org.uk/covid-19/
Our COVID-19 response
On the 1st April 2020, in response to the UK Government’s mandate to IBD teams to identify all patients at high risk from COVID-19 and working closely with the British Society of Gastroenterology in their risk definitions, we created an online self-assessment risk tool for patients which included returning their results to their clinical teams across the UK.
Within 2 months, 34,000 patients had used the IBD COVID-19 Risk Tool, with results being returned to 178 NHS Trusts across all the UK.
Update 05 November 2020
With the national lockdown in England from November 2020, and special guidance for the clinically vulnerable, the Registry’s IBD Risk Tool is available again for anyone with IBD who wants to self-assess their risk.
Risk Assessment Levels (by proportion) of people using the Tool, as of April 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.
Prof Stuart Bloom, Medical Director for the Registry, talks about the future with patient-entered data.
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.
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.
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.
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.