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.
Krogh K, Perkash I, Stiens SA, Biering-Sørensen F. International bowel function basic spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):230-4.
Krogh K, Perkash I, Stiens SA, Biering-Sørensen F. International bowel function extended spinal cord injury data set. Spinal Cord. 2009 Mar;47(3):235-41.
Juul T, Bazzocchi G, Coggrave M, Johannesen IL, Hansen RB, Thiyagarajan C, Poletti E, Krogh K, Christensen P. Reliability of the international spinal cord injury bowel function basic and extended data sets. Spinal Cord. 2011 Aug;49(8):886-91. doi: 10.1038/sc.2011.23.
Krogh K, Emmanuel A, Perrouin-Verbe B, Korsten MA, Mulcahey MJ, Biering-Sørensen F. International spinal cord injury bowel function basic data set (Version 2.0). Spinal Cord. 2017 Jul;55(7):692-698. doi: 10.1038/sc.2016.189.
Krogh K, Halvorsen A, Pettersen AN, Biering-Sørensen F. Version 2.1 of the International Spinal Cord Injury Bowel Function Basic Data Set Spinal Cord Series and Cases 5 , Article number: 63 | doi: 10.1038/s41394-019-0210-z