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The Shared Health Research Information Network (SHRINE): a prototype federated query tool for clinical data repositories.

机译:共享健康研究信息网络(SHRINE):用于临床数据存储库的原型联合查询工具。

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The authors developed a prototype Shared Health Research Information Network (SHRINE) to identify the technical, regulatory, and political challenges of creating a federated query tool for clinical data repositories. Separate Institutional Review Boards (IRBs) at Harvard's three largest affiliated health centers approved use of their data, and the Harvard Medical School IRB approved building a Query Aggregator Interface that can simultaneously send queries to each hospital and display aggregate counts of the number of matching patients. Our experience creating three local repositories using the open source Informatics for Integrating Biology and the Bedside (i2b2) platform can be used as a road map for other institutions. The authors are actively working with the IRBs and regulatory groups to develop procedures that will ultimately allow investigators to obtain identified patient data and biomaterials through SHRINE. This will guide us in creating a future technical architecture that is scalable to a national level, compliant with ethical guidelines, and protective of the interests of the participating hospitals.
机译:作者开发了一个共享健康研究信息网络(SHRINE)原型,以识别为临床数据存储库创建联合查询工具的技术,法规和政治挑战。哈佛大学三个最大的附属健康中心的独立机构审查委员会(IRB)批准了其数据的使用,哈佛医学院IRB批准了构建查询汇总器界面,该界面可以同时向每家医院发送查询并显示匹配患者的总数。我们使用开放式生物学集成信息学和Bedside(i2b2)平台创建三个本地存储库的经验可以用作其他机构的路线图。作者正在与IRB和监管小组积极合作,开发程序,最终将使研究人员能够通过SHRINE获得已识别的患者数据和生物材料。这将指导我们创建未来的技术架构,该架构可扩展到全国范围,符合道德准则,并保护参与医院的利益。

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