Lead organisation: Cambridge University Hospitals NHS Foundation Trust
Hub Director: Professor John Bradley, email firstname.lastname@example.org
Crohn’s Disease and Ulcerative Colitis are the main forms of IBD. They cause debilitating symptoms affecting 0.78% of the UK population (500,000 people), and costing UK health budgets approximately £1.5 Billion each year. Treatment is with steroids, immunosuppressants and antibody therapies, but results are variable. Over 70% of patients with Crohn’s and 15% with colitis require major surgery3. There is an urgent need to better understand why patients respond differently to treatments in order to improve outcomes and reduce costs.
Recent advances in clinical imaging, pathology, and genomic technologies have produced remarkable progress in understanding IBD. However, the power of these technologies cannot be clinically realised until these data can be combined and used in a meaningful way.
Our DIH will integrate data from multiple sources and create a secure research resource that allows approved researchers to access data, whilst protecting the privacy of individuals.
Patient and public involvement is key to our success. 25,000 IBD patients have already provided consent for their health records to be retrieved and used for medical research. Working together, we will transform our understanding of IBD, drive improvements in diagnosis and treatment, and deliver a data framework to reproduce in other disease areas.
Miles Parkes, Clinical and Academic Lead, G.I. Know – Health Data Research Hub for Inflammatory Bowel Disease:
“By working together with patients, industry, academia and the health service this initiative will transform our understanding of inflammatory bowel disease. Excitingly it has the potential to turn a severe disease into a mild disease and we hope deliver a sustainable model which could be replicated across multiple other disease areas.”
Rosanna, Crohn’s disease patient:
“Patients with inflammatory bowel disease need to find the most effective treatment as quickly as possible to limit disease progression – but currently this process can take three or more years of trial and error. This initiative makes the tantalising prospect of personalised medicine real for patients, who for the first time will have the confidence that they have been prescribed the most effective treatment for them from the start.”
Partners involved in G.I. Know: Eastern Academic Health Science Network (lead institution) | University of Cambridge | Cambridge University Health Partners | University College Hospital | Privitar | IBD Registry Ltd | Crohn’s & Colitis UK | Microsoft | Leeds Teaching Hospitals NHS Trust |
Newcastle upon Tyne Hospitals | AIMES | Pennine Acute Hospitals NHS Trust | Salford Royal NHS Foundation Trust | Manchester University NHS FT | Western General Hospital | Royal Devon and Exeter NHS Foundation Trust | Royal Liverpool and Broadgreen University Hospitals NHS Trust