Common Data Elements
Members of the Executive Committee of the International SCI Standards and Data Sets committees (ECSCI) has worked with the National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Common Data Element (CDE) Project to integrate the International SCI Data Sets with the other NINDS CDE resources. This effort has included the development of standard variable names for the data elements in the International SCI Data Sets and suggested database structures (i.e., relational data tables for the data sets). These recommended variable names and database structures are intended for free use by clinicians and researchers, so that they can more easily share and combine clinical/research data. These materials as well as similar data standards for other neurological disorders are also available through the NINDS CDE Project Web site at www.CommonDataElements.ninds.nih.gov. An article describing the collaborative work of the ECSCI and the NINDS CDE Team is available: Biering-Sørensen F, Charlifue S, Devivo MJ, Grinnon ST, Kleitman N, Lu Y,Odenkirchen J. Incorporation of the International Spinal Cord Injury Data Set elements into the National Institute of Neurological Disorders and Stroke Common Data Elements. Spinal Cord. 2011 Jan;49(1):60-4.
Charlifue S, Post MW, Biering-Sørensen F, Catz A, Dijkers M, Geyh S, Horsewell J, Noonan V, Noreau L, Tate D, Sinnott KA. International spinal cord injury quality of life basic data set. Spinal Cord. 2012 Sep;50(9):672-5. doi: 10.1038/sc.2012.27.