Article
The German National TBI-Registry – results from the pilot period
Das deutsche Schädel-Hirn-Trauma Register – Ergebnisse aus der Pilotphase
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Published: | June 4, 2021 |
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Objective: Nationwide data on the epidemiology, treatment characteristics, and long-term outcome of severe traumatic brain injury (TBI) in Germany is, unfortunately, nonexistent. Neurosurgeons from the German Neurosurgery Society (DGNC) and traumatologists from the German Trauma Society (DGU), therefore, joined forces in 2016 to conceptualize a TBI module for the well-established Trauma Register of the DGU (TR-DGU). Since then, funding for this “German National TBI registry (GNTR)” has been secured, a consensus has been reached on its dataset and workflow, ethical approval has been obtained, a test period has been successfully concluded, and finally, in February 2019, a pilot period has been initiated. Here, we report on the pilot period of the GNTR, which has been completed in December 2020.
Methods: During the pilot period of the GNTR, over a period of 23 months, TBI patients were prospectively enrolled in ten neurosurgical and traumatological departments across Germany. Inclusion criteria were treatment on the ICU ≥ 24h, or an ISS score ≥ 16. A variety of clinical, imaging and laboratory parameters were collected, and the outcome was assessed by the GOSE score at discharge and 6- and 12 months follow-up.
Results: Details on the structure and dataset of the GNTR and associated milestones and pitfalls during the conception and implementation phase are outlined. Demographic and clinical, imaging, and radiological characteristics of the TBI patients enrolled during the pilot period of the GNTR are presented. Also, mortality and an early functional outcome following severe TBI in the GNTR patients are described. Factors associated with an unfavorable outcome (GOSE 1-4) are assessed using uni- and multivariate regression analyses. Furthermore, the nine participating centers' experience in the GNTR pilot period is summarized, and problems and future directions are discussed.
Conclusion: National registries are needed to collect high quality, prospective data on devastating diseases such as severe TBI. The pilot period of the GNTR helps optimize its dataset and workflow while offering a first glance at the current characteristics of severe TBI in Germany. Opening of the GNTR to all German trauma centers will lead to a better understanding of TBI in Germany and might ultimately help to improve its treatment.