Abstract
Maas AI, Harrison-Felix CL, Menon D, Adelson PD, Balkin T, Bullock R, Engel DC, Gordon
W, Langlois Orman J, Lew HL, Robertson C, Temkin N, Valadka A, Verfaellie M, Wainwright
M, Wright DW, Schwab K. Common data elements for traumatic brain injury: recommendations
from the Interagency Working Group on Demographics and Clinical Assessment.
Comparing results across studies in traumatic brain injury (TBI) has been difficult
because of the variability in data coding, definitions, and collection procedures.
The global aim of the Working Group on Demographics and Clinical Assessment was to
develop recommendations on the coding of clinical and demographic variables for TBI
studies applicable across the broad spectrum of TBI, and to classify these as core,
supplemental, or emerging. The process was consensus driven, with input from experts
over a broad range of disciplines. Special consideration was given to military and
pediatric TBI. Categorizing clinical elements as core versus supplemental proved difficult,
given the great variation in types of studies and their interests. The data elements
are contained in modules, which are grouped together in categories. Three levels of
detail for coding data elements were developed: basic, intermediate, and advanced,
with the greatest level of detail in the advanced version. In every case, the more
detailed coding can be collapsed into the basic version. Templates were produced to
summarize coding formats, motivation of choices, and recommendations for procedures.
Work is ongoing to include more international participation and to provide an electronic
data entry format with pull-down menus and automated data checks. This proposed standardization
will facilitate comparison of research findings across studies and encourage high-quality
meta-analysis of individual patient data.
Key Words
List of Abbreviations:
AIS (Abbreviated Injury Scale), CDE (common data element), GCS (Glasgow Coma Scale), ICP (intracranial pressure), IMPACT (International Mission on Prognosis and Clinical Trial Design in TBI), ISS (Injury Severity Score), LOC (loss of consciousness), OMB (Office of Management and Budget), PTA (posttraumatic amnesia), TBI (traumatic brain injury)To read this article in full you will need to make a payment
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Article info
Footnotes
Support for the meetings and activities of the Working Group on Demographics and Clinical Assessment was funded in the context of the interagency initiative toward “an integrated approach to Research in Psychological Health and Traumatic Brain Injury” (National Institutes of Health-National Institute of Neurological Disorders and Stroke [NIH-NINDS]; the National Institute on Disability and Rehabilitation Research; the Department of Veterans Affairs; the Defense and Veterans Brain Injury Center and the Defense Centers of Excellence). The development of CDEs was further supported by a supplemental grant from NIH-NINDS (grant no. NS 042691).
Views expressed are those of the authors and do not necessarily reflect those of the agencies or institutions with which they are affiliated, including the U.S. Department of Veterans Affairs, the U.S. Department of Defense, the U.S. Department of Health and Human Services, the National Institutes of Health, the National Institute of Mental Health, or the Uniformed Services University of the Health Sciences. This work is not an official document, guidance, or policy of the U.S. Government, nor should any official endorsement be inferred.
No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit on the authors or on any organization with which the authors are associated.
Reprints are not available from the author.
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© 2010 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.
