Vasculitis Patient Powered Research Network.
The Vasculitis Patient-Powered Research Network is open to ALL United States Cryoglobulinemia patients. Please Register.
The V-PPRN seeks to transform 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. The goal of the V-PPRN is to conduct high-quality studies that will improve the care and the health of patients with vasculitis by exploring research questions that matter most to patients and advance medical knowledge about vasculitis.
Patient-Engagement in Network Governance
Central to V-PPRN governance structure is the theme of patient leadership, engagement and group consensus throughout all aspects of network design, implementation and governance. Fully embracing the belief that patients and families should be full partners with investigators and clinicians in research and care, the Co-Principal Investigators include Dr. Peter Merkel, MD, MPH and George Casey, MBA, patient-partner. The patient-academic-clinician shared leadership model replicates itself at all levels (Steering Committee, Working Groups, V-PPRN Patient Advisory Council) having a mix of stakeholders that include academic health care professionals and patient a