Patients to benefit from new IBD data research hub in Cambridge
A new health data research hub for inflammatory bowel disease (IBD) is to be established after Eastern AHSN and Cambridge University Health Partners were awarded a £5m by Health Data Research UK.
The Cambridge-based hub will be one of seven set up across the UK to speed up research for new medicines and treatments, support quicker diagnoses and potentially save lives.
The IBD hub, to be known as G.I. Know, will work together with patients, industry, academia and the health service to transform our understanding of inflammatory bowel disease, drive improvements in diagnosis and treatment and deliver a data framework to reproduce in other disease areas
There is an urgent need to better understand why patients with Crohn’s disease and ulcerative colitis (collectively known as inflammatory bowel disease or IBD) respond differently to treatments so they can be prescribed the best personalised treatment as early as possible in order to improve outcomes, minimise surgery and reduce costs.
Whilst advances in clinical imaging, pathology and particularly genomics have produced remarkable progress in understanding Crohn’s disease and ulcerative colitis the power of these technologies cannot be fully realised until their outputs are combined in a secure research resource and made accessible to the whole research community.
This project makes that possible.
Mark Avery, Director of Health Informatics at CUHP and Eastern AHSN, who brought the bid team together commented: “This is such an exciting opportunity to be at the forefront of health data research. Working with the NIHR BioResource and patients we will transform our understanding of inflammatory bowel disease, drive improvements in diagnosis and treatment and deliver a data framework that could be used in future for other diseases.
"At Eastern AHSN we believe that citizens, academia, health services and industry will achieve more working together than they will in isolation. This project exemplifies that, and we are grateful to all our partners on this hub including the NIHR BioResource, Crohn’s and Colitis UK, the IBD Registry, Wellcome Sanger, AIMES, Privitar and Microsoft.”
Crohn’s disease and ulcerative colitis are estimated to affect one in every 130 people in the UK (over 500,000) 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 surgery.
There is an urgent need to better understand why patients respond differently to treatments in order to improve outcomes and reduce costs.
Rosanna, Crohn’s disease patient, commented: “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.”
Patient and public involvement is key to the success of this bid. 25,000 IBD patients across more than 90 NHS Trusts have already been recruited to an NIHR BioResource and provided consent for their health records to be used for medical research.
First published 12 September 2019