International Spinal Cord Injury Data Sets in clinical practice and research

Abstract

<h3>Research Objectives</h3> To give an update on the International Spinal Cord Injury (SCI) Data Sets. <h3>Design</h3> International consensus. <h3>Setting</h3> The International SCI Data Sets Committee approved by the International Spinal Cord Society and the American Spinal Injury Association. <h3>Participants</h3> Individuals with spinal cord injury of traumatic and non-traumatic etiology. <h3>Interventions</h3> Utilization of the International SCI Data Sets. <h3>Main Outcome Measures</h3> Application of the International SCI Data Sets in registries, electronic medical records, daily clinical practice, and research. <h3>Results</h3> Since the first version of the International SCI Core Data Set was published in 2006, 23 International SCI Basic Data Sets, and 6 International SCI Extended Data Sets are developed: https://www.iscos.org.uk/international-sci-data-sets. The Data Sets are developed and used by nurses, physio- and occupational therapists, psychologists, doctors, and researchers depending on the content. 24 of the Data Sets are included in the National Institute of Health (NIH), National Institute of Neurological Disorders and Stroke (NINDS), Common Data Elements (CDE): https://www.commondataelements.ninds.nih.gov/Spinal%20Cord%20Injury. Electronic Medical Records like Epic and Cerner have implemented several of the Data Sets. Likewise, International SCI Data Sets or elements from them are used in SCI-registries worldwide, e.g. US National SCI Model Systems Database, Rick Hansen SCI Registry in Canada, Austrian SCI Study – Registry, Nordic SCI Registry, Registry for all SCI centers in the Netherlands, prevention registry covering India, Nepal, Sri Lanka, Bangladesh, Malaysia, and Thailand, Iranian SCI Registry, Australia and more. Translations exist in Chinese, Dutch, Spanish, Portuguese, Italian, French, 5 Nordic languages, Persian, Korean, Hindi, etc. of one or more International SCI Data Sets, and several validity and reliability studies were performed. <h3>Conclusions</h3> Because the International SCI Data Sets are continuously updated and developed according to current evidence using an open and transparent process, where all interested parties are encouraged to participate these standardized and easy to use Data Sets have gained wide international acceptance in clinical practice and research. <h3>Author(s) Disclosures</h3> No Financial Or Non-Financial Interests To Disclose.