Abstract
Study designEstablishing the structure of a prospective spinal cord injury (SCI) patient registry.ObjectivesTo develop a registry for patients with traumatic spinal cord injury (tSCI) in Austria as a base for addressing research questions, improving patient outcomes, and establishing a platform for future clinical trials.SettingsCoordinating institution: Paracelsus Medical University Salzburg, Austria; participating partners are located in nine states in Austria.MethodsThe Austrian Spinal Cord Injury Study (ASCIS) collects longitudinal data on simple forms within a 7-stage follow-up examination timeline.ResultsThe implementation of the ASCIS in 2012 created the first nationwide SCI patient registry in Austria. ASCIS is currently implemented in 17 trauma hospitals in 9 Austrian states, and over 150 individuals with acute tSCI have been registered to date. As in Austria, the structure of the health-care system does not involve a specialized SCI center covering the primary health care and the rehabilitation care, major challenges have to be overcome to involve all participating primary centers and rehabilitation centers, which perform tSCI patient care, for ASCIS. Through implementing ASCIS, a network of SCI clinicians and researchers, which is now beginning to support translational research and to initiate clinical trials for patients with tSCI, has formed.ConclusionsASCIS is uniquely positioned in Austria to capture detailed information from the early acute to the chronic phases of tSCI, to provide this information also to bigger and translational settings, and to connect researchers and clinicians to facilitate clinical research on tSCI.
Highlights
Electronic supplementary material The online version of this article contains supplementary material, which is available to authorized users.Traumatic spinal cord injury is a debilitating disease that leads to neurological deficits and often has long-term effects including severe life-long disability
Austrian Spinal Cord Injury Study (ASCIS) is currently implemented in 17 trauma hospitals in 9 Austrian states, and over 150 individuals with acute Traumatic spinal cord injury (tSCI) have been registered to date
ASCIS is uniquely positioned in Austria to capture detailed information from the early acute to the chronic phases of tSCI, to provide this information to bigger and translational settings, and to connect researchers and clinicians to facilitate clinical research on tSCI
Summary
Traumatic spinal cord injury (tSCI) is a debilitating disease that leads to neurological deficits and often has long-term effects including severe life-long disability. In Western countries, tSCI affects 15–53 new individuals per million people each year and presents a considerable burden to the health-care system [1, 2]. General goals for ASCIS: To study the longitudinal course of tSCI injury and factors that affect that course To identify and evaluate trends in etiology, demographic, and injury characteristics of tSCI patients. To identify and evaluate trends over time in health service delivery and treatment outcomes of persons who incur tSCI. To establish expected rehabilitation treatment outcomes for persons with SCI. To facilitate the research and patient care via identifying potential persons for enrollment in appropriate ongoing SCI clinical trials and research projects.
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