Who we are
The IBD Registry Board is a collaboration between:
British Dietetic Association (Gastroenterology Group) • British Society of Gastroenterology • British Society of Paediatric Gastroenterology, Hepatology and Nutrition • Crohn’s and Colitis UK • Primary Care Society for Gastroenterology • RCN IBD Network • CICRA – Crohn’s in Childhood Research Association
Contractual and legal responsibilities of the IBD Registry rest within the British Society of Gastroenterology.
British Society of Gastroenterology,
3 St Andrews Place,
London NW1 4LB
Main Telephone No: (+44) (0)20 7935 3150
The British Society of Gastroenterology is a Registered Charity in England and Wales, Charity number 1149074
Aims & Objectives of the IBD Registry
The IBD Registry provides the first ever UK-wide repository of anonymised IBD adult and paediatric patient data for prospective audit and research purposes. Bringing this data together for the first time will:
- Drive continuous improvement in patient care and access to care across the UK
- Inform commissioning and service design
- Improve our understanding of long term outcomes
- Provide local & national data in order to better define the pattern of ulcerative colitis and Crohn’s disease
- Support IBD research
Chair – Stuart has been a consultant gastroenterologist at UCL hospitals in London since 1996. He was chair of the IBD section of the British Society of Gastroenterology from 2006-2009 and is currently National Specialty Lead for Gastroenterology at the NIHR Comprehensive Clinical Research Network (NIHR-CCRN). He has a longstanding interest in how we use technology to record outcomes from the clinical consultation and in defining local and national populations of patients with Inflammatory bowel disease with a view to improving treatment and outcomes.
Clinical lead – Fraser has been a consultant gastroenterologist at University Hospital Southampton since 2009, having completed his clinical and research training in Oxford. As clinical lead for IBD services at UHS he is responsible for developing all aspects of the clinical service. Through this experience he has come to appreciate how critical accurate data is to the provision of high quality patient care as well as informing the development of new care pathways and local services. He is interested in how we record and use data to improve outcomes for patients.
Communications Lead – Claire is the founder and managing director of Dovetail, an award-winning agency specialising in setting up and managing patient-focused joint working projects in healthcare and medical communications. She sat on the Scottish IBD Service Improvement Steering Group and was co-founder of the London Joint Working Group on Substance Use and Hepatitis C. Her experience includes senior roles in the pharmaceutical industry including heading up the VERITY venous thromboembolism Registry at Aventis. Since setting up Dovetail in 2006, Claire and her team have increasingly specialised in delivering high-quality collaborative projects that meet the overlapping needs of patients, physicians, payers and industry.
Data Manager – After graduating in 2012, Mark has gained experience working as a Research and Statistical Assistant for MRCP(UK), as well as working as a Research Assistant for multiple organisations. Currently, Mark is responsible for supporting sites with any data and reporting related queries, as well as maintaining and updating the central database systems within the IBD Registry IT infrastructure.
Administrator – Simone is administrator for BSG Clinical Services and Standards and BSG IBD Registry supporting the administration of the IBD Registry, including its Project Group, Board and Strategy Group.
Funding for the IBD Registry has been provided by: the British Society of Gastroenterology, AbbVie, Allergan, Celltrion, Dr Falk, Janssen, MSD, Napp, Otsuka, Pfizer, Pharmacosmos, Shire, Takeda, Tillotts and Vifor as well as private donors. We would like to thank all of these organisations and individuals for their invaluable support.
Our IT partners
Chameleon Information Management Services Ltd ( CIMS ) were chosen to provide the Registry and PMS software using their InfoFlex product. CIMS is a growing company with a highly successful track record since it began trading in 1996. InfoFlex is now installed in over 90 Trusts and hospices across the UK in a wide variety of clinical specialities.
InfoFlex is a highly flexible Information System that delivers the right information to those who need it, supporting decision-making and allowing adjustments to the system for quick response to changes in healthcare needs.
Health IQ have provided IT consultancy support to the IBD Registry, particularly helping to set up the registry infrastructure within the NHS N3 environment.
Find out more about...
Data and reporting Milestone HES reports sent to sites this week Earlier this week, HES reports were sent to all Registry sites that have submitted data to NHS Digital, fulfilling a long-held Registry aim to make information work better for patients, clinical teams...read more
2017 has been a pivotal year in the development of the IBD Registry. Continued hard work from IBD teams across the country has resulted in 33,321 patient records being uploaded by 53 sites. Thanks to an idea from our Industry Working Group, we set up a data entry...read more
The IBD Registry team have realised a long-held ambition to use routinely collected hospital episode statistics (HES) data to supplement the clinical data collected by sites, in a ground-breaking initiative led by Keith Bodgerread more
It is with great regret and sadness that we have to inform you of the untimely passing of our friend and colleague Richard Driscoll. Richard passed away on the morning of Saturday 21st October, following a cardiac arrest last week. He is survived by his wife Aviva,...read more
This month the IBD Registry achieved two participation milestones: we moved past 30,000 patient records (up to 31,614) and now have 51 sites submitting data to the Registry.read more