Collaboration Details

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Title of Collaborative Activity:

NINDS Common Data Elements Program

Description of Collaborative Activity:

NINDS works closely with the research community (academia and industry), patient advocates, and other federal agencies to develop and maintain data standards called common data elements (CDEs). Data standards facilitate data collection and data sharing in clinical research. Through the efforts of several working groups, CDEs have been developed for use in adult and pediatric research studies of many neurological disorders, including ALS, cerebral palsy, Chiari I malformation, epilepsy, Friedreich’s ataxia, headache, Huntington’s disease, mitochondrial disease, multiple sclerosis, ME/CFS, several neuromuscular diseases, Parkinson’s, spinal cord injury, stroke, and TBI.

Type of Collaborative Activity:

Resource Development

Year the Collaborative Activity Originated:

2006

NIH Participating Institutes/Centers/Office of the Director:

CIT, NINDS, NICHD, NEI, NHGRI, NCATS, NIA, NIMH, NIEHS, NIGMS, NIBIB, NIDDK, NIDCR, NINR, NHLBI

HHS Agency Collaborators on this Activity:

CDC, FDA