The National Institute of Neurological Disorders and Stroke (NINDS) Updates to the Cerebral Palsy Common Data Elements Version 1.0 Recommendations
Year of Publication
Feldman, Robin; Sheikh, Muniza; Edun, Ilar; Esterlitz, Joy; Brandenburg, Joline; Mcintyre, Sarah; Mendoza-Puccini, M. Carolina on behalf of the NINDS/AACPDM Cerebral Palsy CDE Oversight Committee and Working Groups
American Academy of Neurology 72nd Annual Virtual Meeting
Cerebral Palsy; Common Data Element (CDE); NINDS
Objective: The NINDS Cerebral Palsy (CP) common data element (CDE) project convened the CP CDE Oversight Committee (OC) in October 2018 to identify needed updates to the CP participant characteristics CDEs. Background: The NINDS initiated the CDE project to provide standardized data collection tools with consistent definitions for clinical neuroscience research. To ensure that the CP CDEs remain a current and useful tool for investigators and their research teams, the CP CDE OC periodically reviews the CP CDEs based on user feedback and research advancements to make recommendations regarding suggested corrections and updates. Methods: Version 1.0 of the NINDS CP CDEs were posted to the NINDS CDE website in December 2016. While the CP CDEs include classification outcome measures such as the Gross Motor Function Classification System (GMFCS) and Eating and Drinking Classification System (EDACS), there are no case report forms (CRFs) to capture these and other patient condition characteristics. To address the absence of CDEs to record patient motor function, communication, and intellectual characteristics, the CP OC drafted the Participant Condition Characteristics CRF. Results: The Participant Condition Characteristics CRF provides researchers and clinicians the ability to uniformly record data about a patient’s motor type and function; visual, hearing and intellectual impairments; and GMFCS, EDACS and MACS levels. The finalized Participant Condition Characteristics CRF will be posted on the NINDS CDE website in 2019 and may be further developed and improved upon based on user feedback. Conclusions: The NINDS CDEs are an evolving resource, that is continually updated as research progresses. The Participant Condition Characteristics CRF is one of several CRFs that the CP CDE OC has developed or updated. Future CP CDEs under review by the Oversight Committee include those associated with medical history and pain.