The Shared Health. Research Information Network (SHRINE): A Prototype Federated Query Tool for Clinical Data Repositories
The Shared Health. Research Information Network (SHRINE): A Prototype Federated Query Tool for Clinical Data Repositories
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DOI：
10.1197/jamia.m3191
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发表时间：
2009-09-01
影响因子：
6.4
通讯作者：
Kohane, Isaac S.
中科院分区：
文献类型：
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作者：
Weber, Griffin M.;Murphy, Shawn N.;Kohane, Isaac S.
作者开发了一个共享健康研究信息网络 (SHRINE) 原型，以确定为临床数据存储库创建联合查询工具所面临的技术、监管和政治挑战。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) 批准使用其数据，哈佛医学院 IRB 批准构建一个查询聚合器界面，该界面可以同时向每家医院发送查询并显示匹配患者数量的汇总计数。我们使用开源信息学整合生物学和 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。作者正在积极与 IRB 和监管小组合作开发程序，最终允许研究人员通过 SHRINE 获取已识别的患者数据和生物材料。这将指导我们创建一个可扩展到国家层面、符合道德准则并保护参与医院利益的未来技术架构。
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.