Thirty different universities and hospitals have requested to join the Cerebral Palsy Research Network since CPRN called for applications for charter membership at the end of October 2015. The CPRN leadership team has held numerous conference calls with multi-disciplinary CP clinic teams and chief medical information officers to establish site interest, fit and commitment to piloting the CPRN registry. While charter membership will be limited, with preference given to sites that contributed to the registry development, CPRN plans to allow ALL qualified sites to participate in a phased rollout of the registry in the coming months. CPRN will announce charter memberships and additional mechanisms for participation in January 2016.
Charter members of CPRN will contribute to the development plans for the creation of the network including finalizing the Common Data Model, establishing consent models, initiating submissions to institutional review boards, defining the standard operating procedures of the network and finally piloting the CPRN registry. Charter members will form the initial scientific committee that will plan the research agenda for CPRN. Details about CPRN charter membership can be found in the blog posted entitled Join the Cerebral Palsy Research Network.