Commentary
Common Data Elements for Research on Traumatic Brain Injury and Psychological Health: Current Status and Future Development

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Abstract

Whyte J, Vasterling J, Manley GT. Common data elements for research on traumatic brain injury and psychological health: current status and future development.

The National Institute of Neurologic Disorders and Stroke, Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury, National Institute on Disability and Rehabilitation Research, and Defense and Veterans Brain Injury Center jointly supported an effort to develop common data elements (CDEs, ie, consensus-based content domains of importance and recommended ways to measure them) for research on traumatic brain injury and psychological health. The authors served as participants in this effort as well as editors of the resulting articles. This article describes the current status of this multiagency endeavor, the obstacles encountered, and possible directions for future development. Challenges that occurred within the working groups that developed the CDE recommendations and similarities and differences among the articles that describe those recommendations were reviewed. Across all of the working groups, there were challenges in striking a balance between specificity in recommendations to researchers and the need to tailor the selection of variables to specific study aims. The domains addressed by the different working groups varied in the research available to guide the selection of important content areas to be measured and the specific tools for measuring them. The working groups also addressed this challenge in somewhat different ways. The CDE effort must enhance consensus among researchers with similar interests while not stifling innovation and scientific rigor. This will require regular updating of the recommendations and may benefit from more standardized criteria for the selection of important content areas and measurement tools across domains.

Section snippets

Challenges to Measurement Consensus

It is easy to advocate common measurement approaches across TBI and PH, but many theoretical and practical obstacles stand in the way of their achievement. Moreover, even the desirability of measurement consensus is debatable if it stifles innovation or reduces the fit between an individual study's aims and the data elements used to achieve them.

Good researchers already select measures that are optimally suited to their research aims as well as the practical and financial constraints on data

The Meaning of “Common” Data Elements

Consideration of these factors reveals that the benefits of consensus and the tailoring of measurement to the precise nature of a study's aims and sample are inevitably in tension. Clearly, when the study aims, sample, and relevant outcomes are identical, it would behoove investigators to use comparable measures. Indeed, a multicenter clinical trial is the most perfect example of this, where each study site is, in a sense, a separate study, but the use of CDEs, definitions, and measurement

Common Data Elements: A Work in Progress

Neither the participants in the CDE process nor the readers of these articles will see this as a finished process. Measurement tools evolve, and our understanding of how best to use these tools will evolve as well.

The Way Forward

We have argued that the CDE effort needs an ongoing guiding hand in the form of collaborative agency support. Web-based resources and published recommendations will need to be revised as new research emerges. Should that guiding hand be modified or simply applied anew after the passage of time? Although we believe that the recent CDE effort was very productive, we also believe that there are some lessons to be learned from it and discuss 2 in particular: the organization of the work groups, and

Summary

This special section of the Archives of Physical Medicine and Rehabilitation provides the first set of recommendations intended to promote greater consistency and collaboration among researchers on TBI and psychological health regardless of funding source. This is an ambitious effort that has the potential to transform and improve research in these diverse, yet interrelated, fields. This is a work in progress that will require ongoing iterations to fill gaps and respond to new evidence. Related

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