The IBD Registry is a not-for-profit company set up by and owned by three member organisations: The British Society of Gastroenterology, the Royal College of Physicians and Crohn’s and Colitis UK.
Why the RCP is a founder member of the Registry
Our organisation is governed by our three member organisations, who provide two directors
Crohn's and Colitis UK
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.
Crohns & Colitis UK
Rukshana is the current Chair of the Registry.
She has been working in the NHS and the charitable sector for the last thirty years as a researcher, commissioner, trustee and senior leader. She has stimulated some key directional changes in the public sector such as leading the DH review on the PALS pathfinder pilots which resulted in the introduction of PALS in every hospital in England and worked as part of the NHS team to develop patient choice and patient profiling, now used by all GPs. Her research on health advocacy secured major investment from the King’s Fund to develop a health advocacy infrastructure and services across London.
Rukshana has most recently worked for Macmillan where she championed a clinical model of GP advisors to work with CCGs, new community nurse and ‘navigator’ roles and service redesigns for risk stratification. She was a Board Member of the East of England Cancer Alliance, a collaborative of NHS CEOs.
Rukshana works for Crohn’s and Colitis UK as Director of Health Service Development. Her passion is to improve care and outcomes for people affected by Crohn’s and Colitis.
Crohn's and Colitis UK
Sarah is the Chief Executive for Crohn’s and Colitis UK. Sarah is an experienced and successful Chief Executive, and has worked with a broad range of health and patient groups and European patient organisations, as well as government advisory and research bodies. She has also built expertise in education, social and economic policy, scientific research, income generation and campaigning. She lives in Oxford and is Chair of Community Christmas, a small charity working to alleviate loneliness at Christmas.
Dr Barney Hawthorne (Chair of the Board)
British Society of Gastroenterology
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.
Prof. Alan Lobo
British Society of Gastroenterology
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.
Dr Andy Cole
Royal College of Physicians
Dr Andy Cole is a Consultant Gastroenterologist at the Royal Derby Teaching Hospital. He did his undergraduate studies in Cambridge and UCL London and trained in Gastroenterology in Bristol with Richard Harvey, Dunedin New Zealand with Prof Gill Barbezat and in Nottingham with Professor Chris Hawkey. He has a longstanding clinical and research interest in Inflammatory Bowel Diseases. He undertook his MD thesis research in IBD inflammatory responses and their drug therapy.
He is an author of the 2010 BSG IBD Guidelines and the ECCO 2010 Evidence based consensus on the diagnosis and management of Crohn’s disease special situations- IBD guidelines. He continues to be research active in both multicentre drug studies, pharmacovigilance studies and endotherapy studies. He is past secretary of the BSG IBD section. He is past president of the Derby Medical Society and is immediate past president of the Midlands Gastroentrology Association.
Our executive leadership team
Our executive leadership team balances business and clinical knowledge in a combination that allows us best to pursue our purpose.
Chief Executive Officer
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.
Dr Stuart Bloom
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.
Dr Fraser Cummings
Clinical Lead for Studies & Collaboration
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.
Dr Keith Bodger
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.
NEW: IBD Registry, patient consent and the National data opt-out - FINAL (PDF 150KB)
|IBD Registry Patient information leaflet – April 2019||Download here|
|IBD Registry Large Font/Accessible Patient information leaflet – April 2019||Download here|
|IBD Registry Adult consent form – May 2018||Download here|
|IBD Registry Paediatric consent form – May 2018||Download here|
|IBD Registry A4 poster - May 2018||Download here|
|IBD Registry patient consent guidance for hospitals (England and Wales) - August 2017||Download here|
020 3393 3969
IBD Registry Ltd is a not-for-profit company limited by guarantee - Company Number 11197749.
Our Registered Address is 3 St Andrews Place, Regent’s Park, London NW1 4LB. VAT Number 291683766.