The Vasculitis Patient-Powered Research Network (V-PPRN) has been approved to receive a three-year $1.4 million award by the Patient-Centered Outcomes Research Institute (PCORI) as part of the second phase of the National Patient-Centered Clinical Research Network (PCORnet). The V-PPRN is led by Peter A. Merkel, MD, MPH, Professor of Medicine and Epidemiology at the University of Pennsylvania and George Casey, MBA, Treasurer of the Vasculitis Foundation.
This funding continues PCORI’s support for the V-PPRN’s participation in PCORnet, a large, collaborative research initiative designed to link researchers, patient communities, clinicians, and health systems in productive research partnerships that leverage the power of large volumes of health data maintained by the partner networks.
PCORnet will enable the nation to conduct clinical research more quickly and less expensively than is now possible and will ensure that research focuses on the questions and outcomes that matter most to patients and those who care for them. The V-PPRN contributes to PCORnet expertise and resources focused on research in vasculitis, a set of rare inflammatory diseases of blood vessels.
The goal of the V-PPRN is to conduct high-quality studies that lead to improving the care and the health of patients with vasculitis by exploring research questions that matter most to patients and advance medical knowledge about vasculitis. The new funding will allow the V-PPRN to continue transforming how clinical research in vasculitis is conducted by directly engaging patients, investigators, care providers, and health systems to develop research methods to electronically collect health records and patient-reported data on a large number of patients with various forms of vasculitis.
Reflecting on the announcement Dr. Merkel remarked “This award is an outstanding achievement for the V-PPRN and will not only provide funds to help us expand our research and have a greater impact on the lives of patients with vasculitis, but also is a testament to the highly productive collaboration that exists between our physician-investigators and our patient-partners.”
“We’re pleased that the V-PPRN has been approved for this funding support to continue our productive mutual efforts to build what we intend to be a premier national resource for conducting high-quality, patient-centered clinical research,” said PCORI Executive Director Joe Selby, MD, MPH. “I greatly appreciate the contributions of all the PCORnet partners during Phase I, which readied PCORnet for a robust start on an exciting second phase of expansion and the launch of several research studies.”
PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund research that will provide patients, their caregivers and clinicians with the evidence-based information they need to make better-informed healthcare decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work.