Analysis and Research
We carry out new analyses based on the Registry data each quarter. Our analysis (non-research, such as clinical audit, service evaluation and updates on our regular reporting metrics) is reported here.
We also carry out research on our Registry data. Our research is reported here.
We will soon be taking applications for ethically-approved research projects into IBD from accredited researchers. Please contact us for more information.
Our support for research projects
We use our national data infrastructure to support research projects. The projects we have supported are also reported here.
If you are a researcher and are interested in partnering with us to deliver your research project, please contact us for more information.
The PINPOINT study
The Prospective Incidence of Paediatric-Onset Inflammatory bowel disease in the United Kingdom
PINPOINT has now started in June 2021.
The number of children newly diagnosed with inflammatory bowel disease (IBD) each year has been increasing worldwide. Some smaller regions of the United Kingdom (UK) have previously published their own incidence data for paediatric IBD. However, the last UK-wide incidence study was completed in 1999, therefore new data is urgently required. The PINPOINT study, led from Edinburgh and supported by Guts UK/BSPGHAN, will record each new diagnosis of IBD in children under 16 years of age across the whole of the UK over a 18 months. Data entry will be performed by uploading patient details to a secure platform (under the banner of the IBD Registry). The study will provide important information about the number of patients in each area of the UK, allowing the NHS and IBD charities to provide better care. This improvement in care will be driven by a better understanding of what resources are needed and how they can be used in a more beneficial way
The PINPOINT study is being led by Dr Paul Henderson of the University of Edinburgh, and the Registry is pleased to work with Dr Henderson and his team to support delivery of this project. The PINPOINT study has now started in June 2021.
(BSG ‘Campus’ Jan 2021)
We are continuing our analysis into the use of steroids, alongside the use of biological therapies.
This poster on our analysis of the usage of steroids in IBD was presented at the BSG’s ‘Campus’ in January 2021.
The presentation is summarised in the accompanying publication:
COVID-19: Risk of infection, outcomes and impact for IBD patients
Date: May-June 2021
The IBD Registry has received ethical approval to run a study on COVID-19: risk of infection, outcomes and impact for IBD patients.
We are currently inviting participants ot the orginal IBD Risk Tool to a second survey, with additional perrmissions for research. We will provide a summary of the study and any updates on it on this website.
VEST (Vedolizumab Real Life Experience Study in Inflammatory Bowel Disease )
The UK Vedolizumab Real Life Experience Study in Inflammatory Bowel Disease (VEST) aims to gather outcomes data on vedolizumab in a real-world clinical setting. Hospitals across the UK are currently participating and the study is open to new sites. Eligible patients have to be adults who are due to start vedolizumab in standard care. Data is obtained from the patient’s own reported outcomes, clinical assessments and the medical notes including disease characterisation, medications, previous history and blood test results.
The VEST study is being led by Dr Fraser Cummings of the University of Southampton, and the Registry is pleased to work with Dr Cummings and his team to support delivery of this project. The VEST study started in 2017 and has now completed its data collection phase.