PCORnet, the National Patient-Centered Clinical Research Network, is a PCORI-funded infrastructure initiative designed to allow researchers to conduct critical patient-centered outcomes research faster, with more power, and at lower cost, than is possible currently.
The initiative was launched in early 2014 with an 18-month development phase. It involved 11 Clinical Data Research Networks (CDRNs), based in health systems, and 19 Patient-Powered Research Networks (PPRNs), operated and governed by groups of patients and their partners, including caregivers, clinicians, and researchers, and focused on a particular condition or population. A Coordinating Center, co-led by the Duke Clinical Research Institute and Harvard Medical School's Department of Population Medicine at the Harvard Pilgrim Health Care Institute, provided technical and logistical support to the partner networks. The Genetic Alliance joined the Coordinating Center in early 2015 to support the PPRNs.
During PCORnet’s three-year second phase of development, which began October 1, 2015, these three institutions will continue to lead the Coordinating Center, overseeing activities to create a participant-centered, sustainable, national research infrastructure that will provide answers to key clinical research questions. Specifically, the Coordinating Center will lead efforts to
- Simplify and expedite administration through streamlined tools such as master contracts, data sharing agreements, and centralized institutional review boards
- Through outreach and directed resources, inspire collaborations within PCORnet and with the wider research community, including industry and government agencies
- Expand data research capabilities through development of the Distributed Research Network (DRN), network-wide data characterization, and creation of data querying and analytic tools
- Develop and implement methods for real-world evidence generation through pragmatic clinical trials
- Lead the development of a business model and strategic plan to facilitate PCORnet’s long-term sustainability