International Spinal Cord Injury Core Data Set (version 2.0)—including standardization of reporting

Abstract

, PW New 4,5,6 , V Noonan 7 , MWM Post 8,9 and L Vogel 10,11Study design: The study design includes expert opinion, feedback, revisions and final consensus. Objectives: The objective of the study was to present the new knowledge obtained since the International Spinal Cord Injury (SCI) Core Data Set (Version 1.0) published in 2006, and describe the adjustments made in Version 2.0, including standardization of data reporting. Setting: International. Methods: Comments received from the SCI community were discussed in a working group (WG); suggestions from the WG were reviewed and revisions were made. All suggested revisions were considered, and a final version was circulated for final approval. Results: The International SCI Core Data Set (Version 2.0) consists of 25 variables. Changes made to this version include the deletion of one variable 'Total Days Hospitalized' and addition of two variables 'Date of Rehabilitation Admission' and 'Date of Death.' The variable 'Injury Etiology' was extended with six non-traumatic categories, and corresponding 'Date of Injury' for non-traumatic cases, was defined as the date of first physician visit for symptoms related to spinal cord dysfunction. A category reflecting transgender was added. A response category was added to the variable on utilization of ventilatory assistance to document the use of continuous positive airway pressure for sleep apnea. Other clarifications were made to the text. The reporting of the pediatric SCI population was updated as age groups 0-5, 6-12, 13-14, 15-17 and 18-21. Conclusion: Collection of the core data set should be a basic requirement of all studies of SCI to facilitate accurate descriptions of patient populations and comparison of results across published studies from around the world.

Use of medicines, adherence and attitudes to medicines among persons with chronic spinal cord injury

“…The following data were provided from the medical records for all participants before the interview: age, gender, cause and type of SCI (neurological level, traumatic or atraumatic, tetraplegia or paraplegia, complete or incomplete), American Spinal Injury Association Impairment Scale (AIS) grade, 18 time since injury (years), relevant medical history and time of their last admission to Sunnaas Rehabilitation Hospital.…”

Implementation of a Standardized Dataset for Collecting Information on Patients With Spinal Cord Injury

“…Some of these changes were adopted to the International SCI Core Data Set version 2.0 (adding date of rehabilitation admission, extending causes of SCI with 6 non-traumatic causes). 18 Another data set with major adaptations was the Pain Data Set, which was shortened to reduce the time to complete the data set. Instead of asking how many pain problems a patient experiences and describing the three major pain problems, the data set now focuses on the presence or absence of pain.…”

International Spinal Cord Injury Lower Urinary Tract Function Basic Data Set (version 2.0)

“…The data in this International SCI LUT Function Basic Data Set (version 2.0) generally will be used with data in the International SCI Core Data Set (Version 2.0) [11], which includes information on date of birth and injury, gender, the cause of spinal cord lesion, and neurologic status. Other related International SCI Data Sets including urological information are the International SCI Urinary Tract Infection Basic Data Set [12], the International SCI Urodynamic Basic Data Set [13] (being updated), and the International SCI Urinary Tract Imaging Basic Data Set [14].…”