SHRINE: enabling nationally scalable multi-site disease studies.
SHRINE: enabling nationally scalable multi-site disease studies.
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DOI：
10.1371/journal.pone.0055811
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发表时间：
2013
期刊：
影响因子：
3.7
通讯作者：
Kohane IS
中科院分区：
文献类型：
--
作者：
McMurry AJ;Murphy SN;MacFadden D;Weber G;Simons WW;Orechia J;Bickel J;Wattanasin N;Gilbert C;Trevvett P;Churchill S;Kohane IS
医学研究的结果往往是相互矛盾的或无法复制的。一个原因是可能没有足够的患者受试者可用于观察足够长的时间段。另一个原因是，患者人群可能会因地理和人口边界而发生很大变化，从而限制了结果的适用范围。即使将多个地点的相似患者人群汇总在一起，医疗和记录系统的差异也会限制通常可以分析的结局指标。总的来说，医学研究环境中的这些差异可能导致不同的结论，甚至可能阻止一些研究的开始。因此，我们试图创建一个患者研究系统，可以以统一的方式从大量医院收集尽可能多的患者观察结果。我们称这个系统为“共享健康研究信息网络”，具有以下特性：（1）出于研究目的重新使用来自日常临床护理的电子健康数据，（2）尊重患者隐私和医院自主权，（3）聚集许多医院的患者群体以实现统计上显著的样本量，该样本量可以独立于单个研究设置而被验证，（4）协调每个机构记录的观察事实，以便可以在许多医院并行查询，（5）扩展到区域和国家合作。本报告旨在为多中心临床研究提供开源软件，并报告该应用程序的早期使用情况。目前，SHRINE的实现已被用于自闭症共病、青少年特发性关节炎、围产期心肌病、结直肠癌、糖尿病等的多站点研究。广泛的研究目标和越来越多的采用表明，SHRINE可能适用于本报告中提到的研究用途和参与医院之外。
Results of medical research studies are often contradictory or cannot be reproduced. One reason is that there may not be enough patient subjects available for observation for a long enough time period. Another reason is that patient populations may vary considerably with respect to geographic and demographic boundaries thus limiting how broadly the results apply. Even when similar patient populations are pooled together from multiple locations, differences in medical treatment and record systems can limit which outcome measures can be commonly analyzed. In total, these differences in medical research settings can lead to differing conclusions or can even prevent some studies from starting. We thus sought to create a patient research system that could aggregate as many patient observations as possible from a large number of hospitals in a uniform way. We call this system the ‘Shared Health Research Information Network’, with the following properties: (1) reuse electronic health data from everyday clinical care for research purposes, (2) respect patient privacy and hospital autonomy, (3) aggregate patient populations across many hospitals to achieve statistically significant sample sizes that can be validated independently of a single research setting, (4) harmonize the observation facts recorded at each institution such that queries can be made across many hospitals in parallel, (5) scale to regional and national collaborations. The purpose of this report is to provide open source software for multi-site clinical studies and to report on early uses of this application. At this time SHRINE implementations have been used for multi-site studies of autism co-morbidity, juvenile idiopathic arthritis, peripartum cardiomyopathy, colorectal cancer, diabetes, and others. The wide range of study objectives and growing adoption suggest that SHRINE may be applicable beyond the research uses and participating hospitals named in this report.
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影响因子：
17.1
作者：
Collins, Francis S.
通讯作者：
Collins, Francis S.
影响因子：
15.8
作者：
Ioannidis, JPA
通讯作者：
Ioannidis, JPA
影响因子：
4
作者：
Deshmukh, Vikrant G.;Meystre, Stephane M.;Mitchell, Joyce A.
通讯作者：
Mitchell, Joyce A.
影响因子：
8.6
作者：
Albert, R;Barab치si, AL
通讯作者：
Barab치si, AL
影响因子：
64.8
作者：
Chanock, Stephen J.;Manolio, Teri;Collins, Francis S.
通讯作者：
Collins, Francis S.