Abstract
Background/Aims In September 2013 the Patient-Centered Outcomes Research Institute (PCORI) funded the National Clinical Research Network (NCRN) Coordinating Center (CC) to manage the development of PCORI’s national data infrastructure to support patient-centered comparative effectiveness research. Initial NCRN membership will include 8 Clinical Data Research Networks (CDRNs) and up to 18 Patient Powered Research Networks (PPRNs). A number of HMORN members submitted CDRN applications. The CDRN and PPRN applications are under review to be announced in December. (Note: the HMORN authors of this abstract have no knowledge of nor will they participate in the CDRN/PPRN selection process).
Methods The NCRN CC is led by the Harvard Pilgrim Health Care Institute, and co-led by Group Health Research Institute, the Duke Translational Medical Institute, AcademyHealth, the Brookings Institution, the Center for Medical Technology Policy, the Center for Democracy & Technology, Johns Hopkins Berman Institute on Bioethics, and America’s Health Insurance Plans. The RAND Corporation is the independent evaluator. The NCRN will organize its work around several taskforces, including: (a) Health systems interactions, led by Group Health Research Institute; (b) Creation of PCORInet, the networking capability to query NCRN partner data, led by Harvard Pilgrim Health Care Institute; (c) Governance, including how the NCRN will partner with external researchers to access the data infrastructure; and (d)Patient and stakeholder engagement, privacy, ethics and regulatory, rare disease and obesity cohorts, biorepositories, patient-reported outcomes and clinical trials.
Results PCORI’s vision for the NCRN is to unite patients, healthcare systems and researchers to support rapid, effective observational and interventional studies of topics that are chosen by all stakeholders working in concert. We will describe the NCRN, the HMORN contribution to the Coordinating Center and, if applicable, will invite participation of HMORN members who are CDRN partners.
Conclusions The PCORI NCRN is advancing the nation’s capacity to conduct comparative clinical effectiveness research by establishing an innovative and representative national research infrastructure. HMORN investigators lead several aspects of this cutting-edge work.
