Citation

Miller AC, Odenkirchen J, Duhaime AC, Hicks R. J. Neurotrauma 2012; 29(4): 634-638.

Affiliation

National Institute on Disability and Rehabilitation Research (NIDRR), U.S. Department of Education, 550 12th Street, SW, Washington, District of Columbia, United States, 20202, 202-245-7449; Cate.Miller@ed.gov.

Copyright

(Copyright © 2012, Mary Ann Liebert Publishers)

DOI

10.1089/neu.2011.1932

PMID

22091862

PMCID

PMC3289843

Abstract

Traumatic brain injury (TBI) is a significant global health problem, with a notably high incidence in children and adolescents. Despite the prevalence of TBI and the disabilities that often follow, research on which to base effective treatment is limited by several challenges, including but not limited to the complexity and heterogeneity of TBI. Even when rigorous methods are employed, the utility of the research may be limited by difficulties in comparing findings across studies resulting from the use of different measures to assess similar TBI study variables. Standardization of definitions and data elements is an important step toward accelerating the process of data sharing that will ultimately lead to a stronger evidence base for treatment advances. To address this need, recommendations for common data elements [CDEs, i.e., "consensus-based content domains of importance and recommended ways to measure them" (Whyte et al., 2010, p.1692)] for research on TBI were developed through a 2009 national initiative. To ensure that the TBI CDE recommendations are relevant to pediatric populations, the National Institute on Disability and Rehabilitation Research (NIDRR) and the National Institute of Neurological Disorders and Stroke (NINDS) called for a review of the original recommendations. Following the process used for the original initiative, multidisciplinary workgroups comprised of pediatric TBI experts were formed (Demographics and Clinical Assessment; Biomarkers; Neuroimaging; and Outcomes Assessment). Recommendations for modifications and additions to the original CDEs were developed by the workgroups, vetted at a 2010 workshop and further refined in preparation for publication. The pediatric considerations for TBI CDE are described in a series of articles in this journal. This article describes the efforts leading to this pediatric CDE initiative and the CDE review and development process. It concludes with general recommendations for future iterations of the CDE initiative.

Language: en