A Systematic Review and Summary of the Current State of Neurotrauma Registries Around the World

Introduction: Neurotrauma registries fulfill a vital role by collecting data on traumatic brain injuries (TBI) and related conditions aiming to advance scientific knowledge, shape policies, enhance treatment coordination and improve clinical outcomes. Our study provides a review of global neurotrauma registries from High-Income (HICs) and Low Middle-Income countries (LMICs).

Methods: A systematic review was conducted using PubMed, Google Scholar, and Web of Science according to the PRISMA guidelines to identify relevant registries for neurotrauma and extract summary variables.

Results: 25 articles met inclusion criteria, revealing nine different neurotrauma registries from Europe, North America, Latin America, and Asia. North America had the most registries at 4, followed by Europe and Asia, each with 2, and Latin America with 1. The median size of the databases is 1,345 patients (Range: 80-25,000) with the largest registry from the United States (FITBIR DB ) and the smallest from Latin America and Caribbean Registry (LATINO project). There was no reportd TBI registry for the African continent. The longest reported data collection period was 32 years (1988-2020) in the United States. In terms of demographics, mean reported age was collectively 41.5 years (9.07-66.6) with males making up approximately 70% of patients. 48% of the articles emphasized functional and surgical outcomes such as rehabilitation, motor recovery, length of stay, mortality, and life expectancy. The studies highlighted challenges, including the absence of IT infrastructure (n=11) in LATINO project, an inability to represent all centers/lack of reproducibility (n=7) in HICs, and the shortage of resource availability especially in LMICs (n=14).

Conclusion : The current state of neurotrauma registries is dramatically different, with the vast majority of registries and patients included in HICs. Our review demonstrates the need for a large-scale global neurotrauma registry, addressing barriers faced by LMICs through coordinated private-public partnerships with members of organized neurosurgery.