Abstract
Increased survival after spinal cord injury (SCI) worldwide has enhanced the need for quality data that can be compared and shared between centers, countries, as well as across research studies, to better understand how best to prevent and treat SCI. Such data should be standardized and be able to be uniformly collected at any SCI center or within any SCI study. Standardization will make it possible to collect information from larger SCI populations for multi-center research studies. With this aim, the international SCI community has obtained consensus regarding the best available data and measures for use in SCI clinical practice and research. Reporting of SCI data is likewise standardized. Data elements are continuously updated and developed using an open and transparent process. There are ongoing internal, as well as external review processes, where all interested parties are encouraged to participate. The purpose of this review paper is to provide an overview of the initiatives to standardize data including the International Spinal Cord Society’s International SCI Data Sets and the National Institutes of Health, National Institute of Neurological Disorders and Stroke Common Data Elements Project within SCI and discuss future opportunities.
Highlights
Survival following spinal cord injury (SCI) has increased remarkably over the last 50 years and a substantial proportion of individuals with SCI worldwide are expected to live for many years with a reasonable quality of life [1,2,3,4]
Standardized data may be used as checklists to assist with the observation and treatment of individuals with SCI and form the basis of a medical record to be used in SCI centers internationally
The purpose of this review is to provide an overview of the initiatives undertaken to standardize data in SCI as part of the International SCI Data Sets and the National Institutes of Health (NIH) National Institute of Neurological Disorders and Stroke (NINDS) Common Data Elements (CDEs) Project and discuss future opportunities
Summary
Survival following spinal cord injury (SCI) has increased remarkably over the last 50 years and a substantial proportion of individuals with SCI worldwide are expected to live for many years with a reasonable quality of life [1,2,3,4]. Standardized data may be used as checklists to assist with the observation and treatment of individuals with SCI and form the basis of a (electronic) medical record to be used in SCI centers internationally These standardized data will make it possible to collect information from larger SCI populations to inform prevention programs worldwide, as well as facilitate quality improvement initiatives and multi-center research studies (e.g., new devices or medicine for SCI individuals). To ensure worldwide dissemination and uptake it is likewise imperative that they are retrieved, available for use without restrictions and free of charge With this aim, the international SCI community has been working to establish consensus regarding the best available data and tools for use in clinical practice and research related to SCI for over a decade [12,13,14,15,16,17,18,19,20,21,22,23].
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