The Cerebral Palsy Research Network (CPRN) has completed a comprehensive comparison of the National Institute of Neurological Disorders and Stroke (NINDS) Common Data Elements (CDE) for cerebral palsy to the CPRN CP registry. The CP CDEs were developed by the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) for the purpose of standardizing data collection for NINDS funded studies in CP. Standardized data collection allows the data from multiple studies to be compared to create new learning in the future.
NINDS released the CP CDEs for public review in September, 2016. CPRN had shared its CP registry elements with the NINDS/AACPDM working groups back in January, 2016 for consideration in the development of the CP CDEs. After our extensive review, we are pleased to see that the CPRN registry is very much aligned with the NINDS CDEs for CP. There were a few elements that were developed by NINDS/AACPDM that are more substantive than ours, which we have decided to adopt. There were a small number of other elements where we have recommended changes to the CDEs as part of the public comment period that closes this month. And there are some areas of necessary difference because of our focus on longitudinal research that differ from single study designs. CPRN also offered our neurosurgical and orthopedic data elements to NINDS/AACPDM for inclusion in the CDEs.
Overall, our conclusion is that the CPRN Registry will provide a rich set of patient data that can be combined with future study data funded by NIH to expand discoveries in cerebral palsy.