In Reply: Consensus-Based Development of a Global Registry for Traumatic Brain Injury: Establishment, Protocol, and Implementation
To the Editor: We thank Mr. Detchou for his insightful letter1 regarding our previously published manuscript describing the design, protocol, and implementation of the Global Epidemiology and Outcomes following Traumatic Brain Injury (GEO-TBI; https://geotbi.org) registry.2 The author comprehensively reviewed practical obstacles in setting up and participating in collaborative quality improvement initiatives, highlighting human and hardware shortages especially in low-to-middle–income countries (LMICs), where less staff may be available to participate in data collection or input than in high-income countries (HICs). Although such shortcomings make collaboration more demanding initially, these initiatives produce tangible information on unmet needs in health care manpower, equipment, and data to advise decision making. These data could be leveraged to effectively prioritize TBI in policymaking—ie, directing resources to alleviate funding and staffing shortcomings to initiate a “positive feedback loop.” Furthermore, similar data can be reported to (and required by) humanitarian organizations and other funding sources.3 As pointed out by Mr. Detchou, international fellowships are a potential means to overcome some of the shortages and could be used to provide the initial input in setting up a registry, or for ongoing data collection by subsequent rotations. On this note, the Society of British Neurological Surgeons has supported the international mobility of residents between HICs and LMICs and recently initiated a Caribbean-British clinical fellowship, which includes participating in research with the host institution. Suggesting potential avenues for collaboration and data interfacing, Mr. Detchou highlighted several well-established trauma databases. The GEO-TBI registry was designed to be cross-compatible with other data sources to allow for straight-forward interfacing of TBI data, and the constituent data set was agreed on in a consensus-based manner, vetted by an international board of neurotrauma experts from LMICs and HICs. Consequently, the GEO-TBI variable set is concise, represents basic information in neurotrauma care available across multiple health care settings with vastly differing resources, and may be already captured in established registries with little modification required. In this regard, the GEO-TBI registry directly enables and welcomes data interfacing with existing parallel data sources. The author touches on the difficulty of attaining institutional approvals, which are important from data security and patient privacy viewpoints but increase the work and waiting time required to implement registries locally. In this regard, an international collaboration with robust data protection measures, well-established infrastructure, and transparent data sharing and handling protocols may be more straightforward to participate in. GEO-TBI data allow individual centers to compare their TBI numbers, treatment protocols, and outcomes with an international standard—subject to local legislation, GEO-TBI may be considered a service evaluation or an audit exempt from ethical board review, which can smoothen the process of joining the collaboration.
Authors
- Tommi Kalevi Korhonen (ORCID: https://orcid.org/0000-0002-5500-9200)
- Michael G. Martin (ORCID: https://orcid.org/0000-0002-9310-724X)
- Alexis Joannides (ORCID: https://orcid.org/0000-0002-6618-256X)
- Peter J. Hutchinson (ORCID: https://orcid.org/0000-0002-2796-1835)
- Angelos G. Kolias (ORCID: https://orcid.org/0000-0003-3992-0587)
Institutions
- University of Cambridge (GB)
- Cambridge University Hospitals NHS Foundation Trust (GB)
Publication Details
- Journal
- Neurosurgery
- Published
- 2024-10-03
- DOI
- https://doi.org/10.1227/neu.0000000000003211
- Primary Topic
- Traumatic Brain Injury and Neurovascular Disturbances
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- Suomen Lääketieteen Säätiö
- National Institute for Health and Care Research
- Suomen Kulttuurirahasto
- Orionin Tutkimussäätiö