International Spinal Cord Injury Core Data Set (version 3.0)—including standardization of reporting

Abstract

Study design: Expert opinion, feedback, revisions and final consensus. Objectives: To update the International Spinal Cord Injury (SCI) Core Data Set while still retaining recommended standardization of data reporting. Setting: International. Methods: Comments on the data elements received from the SCI community were discussed in the International Core Data Set working group. The suggestions from this group were iteratively reviewed. The final version was circulated for final approval. Results: The International SCI Core Data Set (Version 3.0) consists of 21 variables. The variable ‘Gender’ has been changed to ‘Sex assigned at birth’; for the variable ‘Spinal Cord Injury Etiology’, the item, ‘Sports or exercise during leisure time’, has been clarified as ‘including during leisure time’; for the variables ‘Vertebral injury’ and ‘Associated injuries’, the item ‘Unknown’ is reworded into: ‘Not applicable (non-traumatic case)’ and ‘Unknown’; the variable ‘Spinal surgery’ has been expanded to include surgeries for individuals with non-traumatic SCI; for the variables related to the International Standards for Neurological Classification of SCI only the neurological level of injury (NLI) and the American Spinal Injury Association (ASIA) Impairment Scale (AIS) are to be reported, and a separate variable is included indicating if the NLI or the AIS or both are impacted by a non-SCI condition. Conclusion: The International SCI Core Data Set (Version 3.0) should be collected and reported for all studies of SCI to facilitate uniform descriptions of SCI populations and facilitate comparison of results collected worldwide.