Registries are places where patients sign up and agree to share varying levels of information that can later be accessed by researchers to begin research.
Alliance for Cryo has partnered with the Vasculitis – Patient Powered Research Network (V-PPRN). The V-PPRN is a new organization formed in partnership with two well resepcted organizations: The Vasculitis Foundation (VF) and The Vasculitis Clinical Research Consortium (VCRC). The VF and the VCRC have the experience, enfrastructure, newtorks, community clout and a significant financial grant to make the V-PPRN a success. The V-PPRN registry is specifically targeted to the Vasculitis patient and cryoglobulinemia is one of the few named diseases in the questionnairre. All they need from us patients with cryoglobulinemia is to register Click here to Register. Once 100 cryo patients they will begin to study cryoglobulinemia patients. Click here to Register.
Eileen M. Propp, Ph.D. CoFounder