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创伤性脑损伤与心理健康研究的通用数据元素:现状与未来发展。

Common data elements for research on traumatic brain injury and psychological health: current status and future development.

机构信息

Moss Rehabilitation Research Institute, Albert Einstein Healthcare Network, Elkins Park, PA 19027, USA.

出版信息

Arch Phys Med Rehabil. 2010 Nov;91(11):1692-6. doi: 10.1016/j.apmr.2010.06.031.

DOI:10.1016/j.apmr.2010.06.031
PMID:21044713
Abstract

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.

摘要

美国国立神经病学与卒中研究所、卓越心理与创伤性脑损伤国防中心、国家残疾与康复研究所以及国防与退伍军人脑损伤中心共同努力,为创伤性脑损伤和心理健康研究开发通用数据元素(CDE,即基于共识的重要内容领域和推荐的测量方法)。作者作为该努力的参与者以及相关文章的编辑,参与了该项目。本文描述了这一多机构努力的现状、遇到的障碍以及未来发展的可能方向。回顾了在制定 CDE 建议的工作组中遇到的挑战以及描述这些建议的文章之间的相似点和不同点。在所有工作组中,都存在如何在向研究人员提供建议的具体性与根据具体研究目标定制变量选择之间取得平衡的挑战。不同工作组所涉及的领域在用于指导选择要测量的重要内容领域以及用于测量这些领域的具体工具的研究方面存在差异。工作组也以不同的方式处理了这一挑战。CDE 工作必须在具有相似兴趣的研究人员之间增强共识,同时不会扼杀创新和科学严谨性。这将需要定期更新建议,并且可能受益于在各个领域选择重要内容领域和测量工具的更标准化标准。

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