The Cerebral Palsy Research Network (CPRN) launched an open resource page today to provide critical information to candidate sites for the network on how to become a future registry site. CPRN launched its Cerebral Palsy Research Network Resources page with the notes and an audio download from a conference call recording from its first Investigator meeting with charter members on Monday, February 22, 2016. The goal is to create complete transparency in its proceedings to roll out a center-based national cerebral palsy registry.
CPRN plans to provide access to critical documents such as:
- The CPRN Registry Common Data Model.
- Institutional Review Board (IRB) protocols.
- Business Associate Agreements for secure sharing of data.
- Data collection forms for the CPRN Registry.
These resources should help candidate centers/sites interested in participating in the registry to prepare for the rollout of the CPRN Registry at their institutions.
In addition, CPRN has also created a library of webinars to educate interested parties on key aspects of clinical research networks and CPRN in particular. Check out: How will CPRN integrate with electronic medical records to capture CP registry data?
CPRN would like to get your input about what additional information or resources you need.