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第1章 用于创伤性脑损伤研究的通用数据元素和联邦跨部门创伤性脑损伤研究信息系统

Chapter 1 Common Data Elements and Federal Interagency Traumatic Brain Injury Research Informatics System for TBI Research.

作者信息

Thompson Hilaire J, Vavilala Monica S, Rivara Frederick P

出版信息

Annu Rev Nurs Res. 2015;33(1):1-11. doi: 10.1891/0739-6686.33.1.

Abstract

Despite increased attention to traumatic brain injury (TBI), there remains no specific treatment and available interventions focus rather on the prevention of secondary injury. One of the reasons posited for the lack of a successful therapy is the amalgamation of various types of injuries under the same severity category in clinical trials. Informatics approaches have been suggested as a means to develop an improved classification system for TBI. As a result of federal interagency efforts, common data elements (CDEs) for TBI have now been developed. Further, the Federal Interagency Traumatic Brain Injury Research Informatics System (FITBIR) has been created and is now available for TBI researchers to both add and retrieve data. This chapter will discuss the goals, development, and evolution of the CDEs and FITBIR and discuss how these tools can be used to support TBI research. A specific exemplar using the CDEs and lessons learned from working with the CDEs and FITBIR are included to aid future researchers.

摘要

尽管对创伤性脑损伤(TBI)的关注有所增加,但目前仍没有特异性治疗方法,现有干预措施主要侧重于预防继发性损伤。临床试验中针对同一严重程度类别合并了各种类型的损伤,这被认为是缺乏成功治疗方法的原因之一。有人建议采用信息学方法来开发改进的TBI分类系统。由于联邦跨部门的努力,现已开发出TBI的通用数据元素(CDE)。此外,还创建了联邦跨部门创伤性脑损伤研究信息系统(FITBIR),供TBI研究人员添加和检索数据。本章将讨论CDE和FITBIR的目标、开发过程及演变,并探讨如何使用这些工具来支持TBI研究。还包括一个使用CDE的具体示例以及从使用CDE和FITBIR中吸取的经验教训,以帮助未来的研究人员。

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