Major milestone marks start of a national cerebral palsy registry!
The CPRN Registry Protocol was approved by the Nationwide Children’s Hospital’s (NCH) Institutional Review Board (IRB) on Monday, June 6, 2016 with a retroactive start date of April 22, 2016. The CPRN CP registry protocol, a formal description of the plans, purpose and data to be collected, safety and monitoring for the CP registry research project, is a critical step in the collection of data for the CPRN Registry. This approval means that all patient data that has been collected at NCH since April 22 – 73 patients in all – will be included in the CPRN Registry.
While the NCH’s IRB approval is exciting news it will also act as a catalyst for the 17 other CPRN clinical centers for IRB submission to begin. Other CPRN sites could be ready to collect cerebral palsy registry data in just a few months.
It has taken less than one year from the time that CPRN was formed to create a national registry until the first patient data was collected! CPRN greatly appreciates the efforts of Dr. Garey Noritz, Director of the Cerebral Palsy Program at Nationwide Children’s Hospital, for his leadership in getting the CPRN Registry up and running in such an efficient manner.