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, regional & 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.
Richard was Vice-Chair of the IBD Registry Board until December 2012 and is now working with the BSG as Development Lead for the IBD Registry. For many years until his recent retirement he was Chief Executive of Crohn’s and Colitis UK, the primary UK patient organisation for patients who have Inflammatory Bowel Disease. Richard has been committed to improving healthcare services for IBD, chairing the group which developed national standards for IBD and playing a leading role in the UK IBD Audit, IBD Quality Improvement Project and the IBD Registry. Richard is Chair of the Board of HQIP, the body that administers government funding for national audits.
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 & Standards and BSG IBD Registry supporting the administration of the IBD Registry, including its Project Group, Board and Strategy Groups.
Funding for the IBD Registry has been provided by: the British Society of Gastroenterology, AbbVie, Allergan, Dr Falk, Janssen, MSD, Napp, Otsuka, Pfizer, Pharmacosmos, Shield Therapeutics, 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.