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 partners.
This year has seen great achievements as a result of our work, and we’re delighted to be able to share some of these with you.
Main IBD Registry database
After establishing our own data platform in 2022, we continued to grow our main IBD Registry database this year, with an overall 31,000 patient records and data uploaded from 41 sites, 10 trusts and 2 services.
Following the launch of our online consent form in 2022, the number of people with IBD joining the IBD Registry grew to over 5,300 in 2023. This is an increase of over 3,000 from 2022.
IBD UK Benchmarking Tool
The IBD Registry played a pivotal role in this year’s 2023 IBD UK Benchmarking Tool, leading on information governance, data capture and clinical engagement aspects ensure a comprehensive and accurate assessment of IBD services through data collection and robust clinical involvement.
This year, 149 IBD services and 15,198 people with IBD actively participated in the surveys, contributing valuable insights to enhance the understanding and evaluation of IBD care across the UK.
Data collection was completed for our NIHR Portfolio-listed research study, Biologics Sequencing in Clinical Units (BISCUITS), with 180 patient records received from 7 sites. Investigating the potential effects of biologics sequencing on clinical outcomes for patients with Crohn’s Disease, BISCUITS demonstrated the potential for the IBD Registry’s database to be used as a vessel through which clinical research studies could be conducted.
In 2023, 4 abstracts were submitted for studies involving the IBD Registry for presentation at major conferences.
Our methodological abstract for BISCUITS was accepted for poster presentation at The Professional Society for Health Economics and Outcomes Research (ISPOR) Europe 2023 conference in Copenhagen in November.
3 further abstracts were submitted for the European Crohn’s and Colitis Organisation (ECCO) congress, which is taking place in Stockholm in February 2024. These are:
- BISCUITS – Following the methodological abstract at ISPOR, the abstract submitted for ECCO marks the completion of the study including results from the data collected. The abstract has been accepted for poster presentation at ECCO.
- PINPOINT – The IBD Registry has supported in the delivery of the PINPOINT study, which has completed data collection. More information about the PINPOINT study is available on our research and studies page. The abstract has been accepted for poster presentation at ECCO.
- VEST – The IBD Registry has supported in the delivery of VEST. More information is available on our research and studies page. The abstract has been accepted for poster presentation at ECCO.
The IBD Registry featured in 2 published journal articles in 2023.
The IBD Registry worked closely with the British Society of Gastroenterology (BSG) IBD Section to deliver a major revision of the clinical Key Performance Indicators (KPIs) for IBD in the UK. This work was published in Frontline Gastroenterology in May 2023.
We are proud to have been involved in a study which was published in the Journal of Crohn’s & Colitis in September 2023. The study looked at whether the IBD-Control Questionnaire can be used effectively in clinical practice and research. The data used for analysis were the responses to the IBD Registry Covid-19 follow-on survey which patients were invited to complete after taking the Covid-19 IBD Risk Tool.
The IBD Registry have developed 5 new tools this year designed to aid data capture.
Following the announcement of the revised KPIs, we created a tool for new Improving Quality in Crohn’s and Colitis (IQICC) programme. The IQICC tool is a data entry and capture platform designed to simplify the process of collecting data for the new KPIs.
As part of the IQICC, we developed a KPIs dashboard, which gives IBD teams the ability to see a live dashboard of their local data.
We also created a designated BISCUITS workbook to help sites upload data for the BISCUITS study.
Reflecting on the past 12 months, a huge thank you also goes to the whole of the IBD Registry team for their contributions this year. Without their commitment and enthusiasm, the achievements highlighted above would not be possible.
We wish everyone a happy and healthy holiday season.