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

克罗恩病和溃疡性结肠炎是IBD的主要形式。它们导致0.78%的英国人口(500,0001人)出现衰弱症状，每年花费英国卫生预算约15亿GB 2。治疗方法有类固醇、免疫抑制剂和抗体疗法，但结果各不相同。超过70%的克罗恩病患者和15%的结肠炎患者需要进行大手术3。迫切需要更好地了解患者对治疗的不同反应，以改善结果并降低成本。近年来，临床影像、病理学和基因组技术的进步在理解IBD方面取得了显著进展。然而，只有将这些数据组合在一起并以有意义的方式使用，这些技术的力量才能在临床上实现。我们的DIH将整合来自多个来源的数据，并创建一个安全的研究资源，允许经批准的研究人员访问数据，同时保护个人隐私。患者和公众的参与是我们成功的关键。25,000名IBD患者已经同意检索他们的健康记录并用于医学研究。通过合作，我们将改变我们对IBD的理解，推动诊断和治疗的改进，并提供一个数据框架，以便在其他疾病领域复制。“

"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."