Using the Spinal Cord Injury Common Data Elements

Abstract

International Spinal Cord Injury (SCI) Data Sets include core, basic, and extended data sets. To date, 13 data sets have been published on the Web site of the International Spinal Cord Injury Society (ISCoS; www.iscos.org.uk), and several more are forthcoming. The data sets are constituted of data elements, which may be appropriate to use in trials conducted to test novel therapeutic candidates including neuroprotective drugs, various cell types, and rehabilitative strategies and devices. The National Institute of Neurological Disorders and Stroke (NINDS), the National Institutes of Health (NIH), embarked on a Common Data Element (CDE) Project 5 years ago. The mission of the NINDS CDE Project is to develop data standards for clinical research. The NINDS CDE team has since developed variable names and database structures for the International SCI Data Sets (ie, the SCI CDEs; http://www.commondataelements.ninds.nih.gov/SCI.aspx). Dataset variable names and database structure are exemplified with the International SCI Core Data Set and the International SCI Cardiovascular Function Basic Data Set. The consistency of the data sets and the CDE format may improve the ability to transfer critical medical information electronically from one center to another. The goals of the SCI CDE initiative are to increase the efficiency and effectiveness of clinical research studies and clinical treatment, increase data quality, facilitate data sharing, and help educate new clinical investigators. Pilot testing the SCI CDEs is an important step to ensure the SCI CDE effort achieves its goals.