Vasculitis is a set of rare organ- and life-threatening diseases of vascular inflammation linked by similar pathophysiologies. Despite improvement in the overall prognosis of vasculitis since the introduction of combination immunosuppressive therapy, there remain large costs from the disease’s morbidity and mortality.
The Vasculitis Patient-Powered Research Network (V-PPRN) is the product of more than 10 years of collaboration among patients, patient advocacy organizations, academic clinical investigators, expert clinicians, biomedical information specialists, qualitative and quantitative methodologists, and funding organizations. It is comprised of the Vasculitis Foundation (VF), the umbrella vasculitis patient advocacy group in the United States; the Vasculitis Clinical Research Consortium (VCRC), which includes the major centers for clinical investigation in vasculitis in the United States and Canada, as well as a significant international community of investigators; an established online group of patients with vasculitis dedicated to conducting meaningful research; the clinical community caring for patients with vasculitis; and experts in applying data standards in databases including electronic health records, disease-specific health data, and patient-reported outcomes.
In our PCORI-funded research, we plan to increase our membership and patient representation, expand data availability, and address disease-specific outcomes. We propose to fully involve patients in direct network governance, collect patient-reported data for at least 80 percent of the cohort, build upon our experience in incorporating data standards suitable for sharing, and leverage our infrastructure, resources, and relationships among stakeholders. The V-PPRN will become a flexible, sustainable patient community ready and committed to participate in clinical research.