Innovative Vasculitis Clinical Research Program Puts Patients in Driver’s Seat
The Vasculitis Foundation and researchers at the University of Pennsylvania have launched the Vasculitis Patient Powered Research Network (V-PPRN) to transform how vasculitis clinical research is conducted. The goal of the V-PPRN is to perform high-quality studies that will further elevate the level of care and health for patients with vasculitis by exploring research questions that matter most to patients and advance medical knowledge about vasculitis. The V-PPRN is the first patient-powered network for vasculitis research and patients will participate as full partners in the work of the V-PPRN—from generating research ideas to summarizing results and all the steps in between.
Peter A. Merkel, MD, MPH, Chief, Rheumatology Division, University of Pennsylvania, is the co-principal investigator of the study and is partnering with the VF and the Vasculitis Clinical Research Consortium to create the V-PPRN. In addition, other researchers from the university’s divisions of Epidemiology and Pharmacology, Penn Medicine Academic Computing Services and the Office of Organizational Design are working on this innovative project.
George Casey, Treasurer, VF Board of Directors, is co-principal investigator of the V-PPRN. Casey is the Chief Technology Officer for Junction Solutions, designing and implementing complex business systems for multi-billion dollar organizations. He was diagnosed with granulomatosis with polyangiitis (GPA/Wegener’s) in 2006 and has served on the VF Board since 2011. Casey believes the combination of patient perspective he has gained over the past eight years along with his expert knowledge of databases, data driven decision models and cloud integration techniques will enable the VF to be a full partner in the design and implementation of the V-PPRN.
Funded by the Patient Centered Outcomes Research Institute (PCORI), the V-PPRN is prepared to enroll more patients with vasculitis than ever studied in the past. The Network will build a large, vibrant patient community ready and committed to participating in clinical research, including clinical trials, and sharing of electronic medical records to address important issues facing patients and providers.
Complete information on the V-PPRN and free online registration to become a participant is available here.