Gut Reaction - The Health Data Research Hub for Inflammatory Bowel Disease

点击翻译按钮获取中文摘要

"Crohn's Disease and Ulcerative Colitis are the main forms of IBD. They cause debilitating symptoms affecting 0.78% of the UK population (500,0001 people), and costing UK health budgets approximately £1.5 Billion2 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."