The National Institute of Neurological Disorders and Stroke (NINDS), one of the National Institutions of Health (NIH), and the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM), have invited CPRN to participate in an oversight committee for the next generation of the NINDS Cerebral Palsy Common Data Elements (CP CDEs). NINDS, in conjunction with the biomedical research community, has developed CDEs for many conditions to accelerate research and maximize data sharing opportunities within and across neurological conditions. The original CP CDEs were initiated following the NIH Workshop on CP in 2014 – the same meeting that launched the creation of the CP registry at the core of the Cerebral Palsy Research Network (CPRN). CPRN shared its registry data definition with the NINDS CP CDE efforts and provided significant feedback during the CP CDE’s public comment period in the Fall of 2016. Numerous CPRN leaders and principal investigators also worked on the subcommittees that developed the NINDS CP CDEs.
The NINDS CP CDE oversight committee has been created “in an effort to ensure that the CP CDEs remain a current and useful tool for investigators and their research teams.” CPRN Chairman, Paul Gross, represents CPRN on the oversight committee. While CPRN has already committed to harmonizing the CPRN Registry data model with the NINDS CP CDEs, this active role in the process will help CPRN maximize the benefits of its registry data collection for the entire CP research community.