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Brain Sci. 2016 Aug 12;6(3). pii: E29. doi: 10.3390/brainsci6030029.

Standardization of Data for Clinical Use and Research in Spinal Cord Injury.

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Clinic for Spinal Cord Injuries, Rigshospitalet (2081), University of Copenhagen, Copenhagen DK-2100, Denmark.
Rick Hansen Institute, Vancouver, BC V5Z 1M9, Canada.


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.


common data elements; data collection; electronic medical record; international data sets; spinal cord injury; standardization

Conflict of interest statement

The authors declare no conflict of interest. The funding sponsors had no role in the design of the study; in the collection, analyses, or interpretation of data; in the writing of the manuscript, and in the decision to publish the results.

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