Cerebral Palsy Research Network Blog

Archive for February 2016

CPRN Creates New Cerebral Palsy Registry Resource for Candidate Sites

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.