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基于共识的创伤性脑损伤全球登记处的制定:建立、方案和实施。

Consensus-Based Development of a Global Registry for Traumatic Brain Injury: Establishment, Protocol, and Implementation.

机构信息

NIHR Global Health Research Group on Acquired Brain and Spine Injury, University of Cambridge, Cambridge , Cambridgeshire , UK.

Neurocenter, Neurosurgery, Oulu University Hospital & University of Oulu, Oulu , Finland.

出版信息

Neurosurgery. 2024 Feb 1;94(2):278-288. doi: 10.1227/neu.0000000000002661. Epub 2023 Sep 25.

DOI:10.1227/neu.0000000000002661
PMID:37747225
Abstract

BACKGROUND AND OBJECTIVES

Global disparity exists in the demographics, pathology, management, and outcomes of surgically treated traumatic brain injury (TBI). However, the factors underlying these differences, including intervention effectiveness, remain unclear. Establishing a more accurate global picture of the burden of TBI represents a challenging task requiring systematic and ongoing data collection of patients with TBI across all management modalities. The objective of this study was to establish a global registry that would enable local service benchmarking against a global standard, identification of unmet need in TBI management, and its evidence-based prioritization in policymaking.

METHODS

The registry was developed in an iterative consensus-based manner by a panel of neurotrauma professionals. Proposed registry objectives, structure, and data points were established in 2 international multidisciplinary neurotrauma meetings, after which a survey consisting of the same data points was circulated within the global neurotrauma community. The survey results were disseminated in a final meeting to reach a consensus on the most pertinent registry variables.

RESULTS

A total of 156 professionals from 53 countries, including both high-income countries and low- and middle-income countries, responded to the survey. The final consensus-based registry includes patients with TBI who required neurosurgical admission, a neurosurgical procedure, or a critical care admission. The data set comprised clinically pertinent information on demographics, injury characteristics, imaging, treatments, and short-term outcomes. Based on the consensus, the Global Epidemiology and Outcomes following Traumatic Brain Injury (GEO-TBI) registry was established.

CONCLUSION

The GEO-TBI registry will enable high-quality data collection, clinical auditing, and research activity, and it is supported by the World Federation of Neurosurgical Societies and the National Institute of Health Research Global Health Program. The GEO-TBI registry ( https://geotbi.org ) is now open for participant site recruitment. Any center involved in TBI management is welcome to join the collaboration to access the registry.

摘要

背景与目的

在创伤性脑损伤(TBI)的人口统计学、病理学、管理和结果方面,全球存在差异。然而,这些差异背后的因素,包括干预效果,仍不清楚。建立一个更准确的 TBI 负担全球图景,需要系统地、持续地收集所有管理模式下 TBI 患者的数据。本研究的目的是建立一个全球登记处,使当地服务能够与全球标准进行基准比较,确定 TBI 管理中的未满足需求,并在决策中对其进行循证优先排序。

方法

该登记处是由一组神经创伤专业人员以迭代共识的方式开发的。在 2 次国际多学科神经创伤会议上确定了登记处的目标、结构和数据点,之后在全球神经创伤社区内分发了一份包含相同数据点的调查。将调查结果在最后一次会议上进行了传播,以就最相关的登记变量达成共识。

结果

共有来自 53 个国家的 156 名专业人员对该调查做出了回应,其中包括高收入国家和低收入和中等收入国家。最终的基于共识的登记处包括需要神经外科入院、神经外科手术或重症监护入院的 TBI 患者。数据集包括与人口统计学、损伤特征、影像学、治疗和短期结果相关的临床相关信息。根据共识,建立了全球创伤性脑损伤后流行病学和结果(GEO-TBI)登记处。

结论

GEO-TBI 登记处将能够进行高质量的数据收集、临床审核和研究活动,并且得到世界神经外科学会联合会和英国国家卫生研究院全球卫生计划的支持。GEO-TBI 登记处(https://geotbi.org)现可用于参与者网站招募。欢迎任何参与 TBI 管理的中心加入合作,以访问该登记处。

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