This presentation will discuss the importance of data standards in SCI research and care. Specifically it will provide an overview of the International SCI Data Set project which was initiated in adult SCI in 2002 and the subsequent project led by the National Institute of Neurological Disorders and Stroke (NINDS) of National Institute of Health (NIH) to develop common data elements (CDEs) in 2006. The most recent work led by Mulcahey and colleagues to systematically review the utility and relevance of these data standards to children and youth (0 to 21 years) will be presented as well as the gaps identified from this work. Finally, the ongoing work to promote the implementation of these data standards in research and care across the lifespan will be discussed.
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