Consensus-based development of a global registry for traumatic brain injury: Establishment, protocol, and implementation

Joannides, Alexis J. and Korhonen, Tommi K. and Clark, David and Gnanakumar, Sujit and Venturini, Sara and Mohan, Midhun and Bashford, Thomas and Baticulon, Ronnie and Bhagavatula, Indira Devi and Esene, Ignatius and Fernández-Méndez, Rocío and Figaji, Anthony and Gupta, Deepak and Khan, Tariq and Laeke, Tsegazeab and Martin, Michael and Menon, David and Paiva, Wellingson and Park, Kee B. and Pattisapu, Jogi V. and Rubiano, Andres M. and Sekhar, Vijaya and Shabani, Hamisi K. and Sichizya, Kachinga and Solla, Davi and Tirsit, Abenezer and Tripathi, Manjul and Turner, Carole and Depreitere, Bart and Iaccarino, Corrado and Lippa, Laura and Reisner, Andrew and Rosseau, Gail and Servadei, Franco and Trivedi, Rikin A. and Waran, Vicknes and Kolias, Angelos and Hutchinson, Peter (2024) Consensus-based development of a global registry for traumatic brain injury: Establishment, protocol, and implementation. Neurosurgery, 94 (2). 278 – 288. ISSN 0148-396X, DOI https://doi.org/10.1227/neu.0000000000002661.

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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. Copyright © 2023 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the Congress of Neurological Surgeons.

Item Type: Article
Funders: Suomen Lääketieteen Säätiö, Suomen Kulttuurirahasto, Orionin Tutkimussäätiö
Uncontrolled Keywords: Epidemiology; Global; Registry; Traumatic brain injury
Subjects: R Medicine > RD Surgery
Divisions: Faculty of Medicine > Surgery Department
Depositing User: Ms. Juhaida Abd Rahim
Date Deposited: 01 Jul 2024 00:50
Last Modified: 01 Jul 2024 00:50
URI: http://eprints.um.edu.my/id/eprint/44848

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