Launching PCORnet, a national patient-centered clinical research network.

Launching PCORnet, a national patient-centered clinical research network.
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DOI:
10.1136/amiajnl-2014-002747
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发表时间:
2014-07
期刊:
Journal of the American Medical Informatics Association : JAMIA
影响因子:
--
通讯作者:
Brown JS
Brown JS
中科院分区:
其他
文献类型:
--
作者:
Fleurence RL;Curtis LH;Califf RM;Platt R;Selby JV;Brown JS

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以患者为中心的结果研究所(PCRI)推出了PCORnet,这是一项重大举措,旨在支持有效,可持续的国家研究基础设施,这将促进电子健康数据在比较有效性研究(CER)和其他类型研究中的使用。2013年12月,PCRI理事会资助了11个临床数据研究网络(CDRN)和18个患者驱动的研究网络(PPRN),为期18个月。 CDRN基于在集成或网络化交付系统内接受医疗保健的大量人群的电子健康记录和其他电子来源。PPRN主要由积极的患者社区建立,与研究人员建立伙伴关系。这些患者打算通过提出问题、分享数据、自愿参与干预性试验以及解释和传播结果来参与临床研究。快速建立新的国家资源以促进大规模、以患者为中心的CER与许多技术、监管和组织挑战相关,本文对此进行了描述。
The Patient-Centered Outcomes Research Institute (PCORI) has launched PCORnet, a major initiative to support an effective, sustainable national research infrastructure that will advance the use of electronic health data in comparative effectiveness research (CER) and other types of research. In December 2013, PCORI's board of governors funded 11 clinical data research networks (CDRNs) and 18 patient-powered research networks (PPRNs) for a period of 18 months. CDRNs are based on the electronic health records and other electronic sources of very large populations receiving healthcare within integrated or networked delivery systems. PPRNs are built primarily by communities of motivated patients, forming partnerships with researchers. These patients intend to participate in clinical research, by generating questions, sharing data, volunteering for interventional trials, and interpreting and disseminating results. Rapidly building a new national resource to facilitate a large-scale, patient-centered CER is associated with a number of technical, regulatory, and organizational challenges, which are described here.
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