Who we are
The IBD Registry is a not-for-profit company set up by:
The British Society of Gastroenterology, the Royal College of Physicians and Crohn’s and Colitis UK.
IBD Registry Limited,
3 St Andrews Place,
London NW1 4LB
IBD Registry Limited is a company limited by guarantee. Company number: 11197749
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
Chief Executive Officer – Liz brings to the IBD Registry 20 years of executive and senior management experience from the private and not-for-profit sector, including early stage businesses. She brings both the leadership and business skills that the IBD Registry needs as a new non-profit company, combined with a robust background in operations, and technical understanding that will be of huge benefit to the Registry as it embarks on this next stage of its growth. Liz’s experience is underpinned by a Sloan Fellow MSc (Business) from London Business School, and BSc (Maths) first class honours.
Medical Director – 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.
Business Support Manager – Katie has spent the past 20 years working for Citizens Advice in various roles both paid and voluntary. For the past 5 years she was the Business Support and Compliance Officer at Epsom and Ewell. She is also a volunteer Fixtures Secretary for Surrey Youth League responsible for managing the U12’s age group, with over 90 football teams.
Board of Directors
Amanda is the current Chair of the IBD Registry Ltd board of directors and a Director of the newly formed company. Amanda is an IBD patient and advocate for improvement in health services.
Professionally, Amanda has over 15 years’ experience of operational and strategic delivery within the NHS. She has successfully led complex change programmes to develop new businesses, redesign services and improve the quality of patient care. She spent two years at UCLPartners, an Academic Health Science Network, managing the clinical transformation programmes, working with multi-sector partners to improve outcomes for a ~3.5m population.
Amanda volunteers as a mentor for aspiring health professionals and is a Board Trustee for Crohn’s and Colitis UK where most recently she supported the construction of the charity’s new five-year strategy.
She has a LLB Hons in Law, an MSc in Healthcare Management and an Executive MBA from Cranfield University, a top 5 UK business school.
David began his career working within the financial and business to business sectors. His move from the commercial world into the voluntary sector was driven by a passion to ‘do something more meaningful’. His work has seen him undertake a variety of senior management and leadership roles within a number of charities including the British Heart Foundation, Breakthrough Breast Cancer, RNID, the Scout Association.
David joined Crohn’s and Colitis UK as their Chief Executive in February 2013 and has led a significant period of growth and change. He is also a non-executive Director of IBD Registry Ltd and also chair of IBD UK.
Dr Goddard qualified at Cambridge in 1990. After gaining an MD from Cambridge University he trained in Nottingham and was appointed as a consultant physician and gastroenterologist in Derby in 2001. His main clinical and research interests are bowel cancer screening, H. pylori, iron deficiency anaemia and inflammatory bowel disease. He is chair of the British Society of Gastroenterology gastroduodenal section.
He is also heavily involved with the Royal College of Physicians. He was director of the RCP Medical Workforce Unit for 5 years until being appointed as the RCP Registrar in January 2014. In this role, he oversees professional and clinical affairs, both in the UK and internationally. His main current policy areas are workforce, healthcare funding, the future of general medicine, the medical registrar and ‘keeping medicine brilliant’.
Dr Hawthorne studied medicine at Queens’ College Cambridge, and went on to do his clinical training at the University of Oxford, qualifying in 1983. He trained in general medicine and gastroenterology in Nottingham and Manchester, and did research work in Nottingham on eicosanoids in ulcerative colitis, with Prof Chris Hawkey, leading to an MD. He took up a consultant post at the University Hospital of Wales in Cardiff in 1995, where he has further built up the large inflammatory bowel disease clinic established by Prof John Rhodes. His clinical interests are inflammatory bowel disease and intestinal failure. As well as developing the IBD services in Cardiff, he has set up and developed the Cardiff Intestinal Failure service, which now supports 130 patients on long-term home parenteral nutrition.
He is currently chair of the IBD section committee of the BSG, and is co-lead for the BSG IBD guidelines writing group (2018). He chairs the Health Care Professional Advisory Panel for Crohn’s Colitis UK, and also sits on the Medical Research Grants committee for Crohn’s Colitis UK. He sits of the IBD UK committee, and the IBD Wales committee. He is also a director and board member of the IBD Registry co., representing the BSG. His research interests include clinical trials of immunosuppressive therapy in IBD, and the natural history of inflammatory bowel disease.
Professor Alan Lobo has been Consultant Gastroenterologist at Sheffield Teaching Hospitals since 1994 and is also Professor of Gastroenterology at the University of Sheffield. He undertook undergraduate training at Guy’s Hospital, London, qualifying in 1984 and postgraduate training in Cambridge, Oxford, Leeds and Bristol.
He leads the IBD service in Sheffield, which has seen considerable, multidisciplinary development – including the introduction of IBD nurse specialists in 1998. Research interests have included genomic and proteomic influences, clinical and immunologic aspects of biologic therapy, psychological morbidity and decision making in IBD.
Professor Lobo was a lead author for BSG guidelines for IBD in 2004 and was a NICE Guideline Development Group member for Crohn’s disease in 2012. He chaired the NICE Guideline Development Group for ulcerative colitis in 2013. He has been a member of the BSG IBD section committee on two occasions and the BSG IBD Clinical Research Group as well as an elected member of BSG Council.
Funding for the IBD Registry has been provided by: the British Society of Gastroenterology, Crohn’s and Colitis UK, 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:
Continuing its mission to improve the care that people with IBD receive, the Royal College of Physicians is offering IBD teams an opportunity to participate in a new quality improvement collaborative, consisting of three 1-day learning sessions and supported action...read more
Following the establishment of IBD Registry Limited as an independent not-for-profit company, we have moved offices to: The IBD Registry The Ebbisham Centre 6-7 Derby Square EPSOM KT18 8AG Telephone (unchanged): 020 393 3969 Contact (unchanged):...read more
If you’re coming to the BSG Annual Meeting in Liverpool next week, do come and say hello to us – we’re at stand B58 in the exhibition.read more
As we’re sure you know, the General Data Protection Regulation (GDPR) comes into force on 25th May.
This newsletter is to let you know what’s changed at the IBD Registry to be compliant with the new regulations.read more
I have been on board as the CEO of the IBD Registry for just two weeks now, but it has only taken that short time to get a real sense of the goodwill that people have for the Registry, as well as the dedication of the clinical teams in entering data, and the hopes and...read more