The CPRN Registry Protocol, a formal description of the plans, purpose and data to be collected, safety and monitoring for the CPRN Registry research project, was submitted to the Nationwide Children’s Hospital (NCH) Institutional Review Board (IRB) today. The IRB’s role is to assure the protection of human subjects in research such that it is in accordance with all federal, institutional, and ethical guidelines. The submission of this protocol is a significant milestone in the progress of CPRN to launch a national cerebral palsy registry. It is significant for numerous reasons:

The IRB protocol approval is a required step to begin the collection of patient data for research;

• • Nationwide Children’s Hospital, as part of PEDSnet, enables us to take advantage of the Master Reciprocal IRB Reliance Agreement among PEDSnet institutions of which several are also part of CPRN including AI duPont Hospital, Boston Children’s Hospital, Children’s Hospital of Colorado, Cincinnati Children’s Hospital and Seattle Children’s Hospital;
  • Sites that are not part of PEDSnet can do a project specific reliance agreement;
  • Once the IRB protocol is approved, all other CPRN sites will be able to submit the CP registry protocol to their IRBs;
  • When CPRN seeks to expand its registry, other sites will be able to quickly gain IRB approval through the reliance mechanism.

The CPRN Registry IRB Protocol was submitted at Nationwide Children’s Hospital by Dr. Garey Noritz who is the Director of the Cerebral Palsy Program at NCH and one of the leaders of CPRN. The IRB Protocol can be found on the CPRN Resources page. CPRN appreciates the efforts of Dr. Noritz and Nationwide Children’s Hospital in launching the CPRN Registry.