Department of Neurosurgery, University of Pennsylvania, 3400 Civic Center Blvd, Philadelphia, PA, 19104, USA.
Department of Neurosurgery, University of Texas Southwestern Medical Center, Dallas, TX, USA.
Neurosurg Rev. 2024 Sep 7;47(1):569. doi: 10.1007/s10143-024-02817-y.
The authors propose the generation of a multi-institutional TBI registry. Barriers to registry implementation include: (1) difficulties in acquiring ethical approval; (2) incomplete clinical data available; (3) lack of information and insufficient technology (IT) support; (4) limited available resources; (5) time constraints involving understaffing yet managing high patient volumes; (6) time constraints associated with entering patient data into the registry tool. The authors detail the current state of affairs on neurotrauma registries worldwide and propose the creation of a multi-institutional, global neurotrauma registries. This private-public partnership will enable appropriate balance among stakeholders while offering care to the largest number of citizens. This initiative will require coordinated efforts involving vetted members of organized neurosurgery. Support from these entities, such as fellowship program creation, provided funding through travel vouchers to LMICs, secured housing and transportation costs in LMI nations, facilitated meetings with global local stakeholders, and promotion of key developments via social media, will accelerate the creation of this global neurotrauma registry. We propose the creation of a global TBI registry, in partnership with large, academic medical centers. Several proposed limitations of registry implementation can be addressed with support from local stakeholders, including government officials and administrative members at key institutions. Several American institutions have well-established global health programs to support this initiative. Further, at Harvard Medical School, the program in Global Surgery and Social Change offers the Paul Farmer Global Surgery Fellowship that trains leaders in policy development and implementation. The fellowship consists of 2 separate tracks: a 2-year research fellow (PGY-5-PGY-6) and 1-year research associate (MD and MBBS, etc.). Funding could be allocated towards creating a year-long fellowship dedicated towards implementing a neurotrauma registry, with this selected scholar granted the resource and connections to network with government officials and healthcare groups in every nation within that jurisdiction. A scholar would be assigned a region of the world with the goal to generate a registry that would later be combined with those generated by peer scholars. In addition, we propose the creation of a fund, controlled by donors, as a funding model.
作者提出建立一个多机构 TBI 登记处。登记处实施的障碍包括：（1）获得伦理批准的困难；（2）可用的临床数据不完整；（3）信息和技术（IT）支持不足；（4）可用资源有限；（5）人手不足但管理大量患者的情况下时间紧张；（6）将患者数据输入登记工具的时间限制。作者详细介绍了全球神经创伤登记处的现状，并提出建立一个多机构、全球性的神经创伤登记处。这种公私合作伙伴关系将在为尽可能多的公民提供服务的同时，在利益相关者之间实现适当的平衡。这一举措需要得到经过审查的神经外科组织成员的协调努力。这些实体的支持，例如创建奖学金项目、为中低收入国家提供旅行券资金、确保低收入和中等收入国家的住房和交通费用、促进与全球当地利益攸关方的会议以及通过社交媒体宣传关键发展，将加速建立这个全球神经创伤登记处。我们建议与大型学术医疗中心合作建立一个全球 TBI 登记处。通过当地利益相关者（包括政府官员和关键机构的行政成员）的支持，可以解决登记处实施的一些拟议限制。一些美国机构已经有成熟的全球卫生计划来支持这一倡议。此外，在哈佛医学院，全球外科学与社会变革项目提供保罗·法默全球外科学奖学金，培训政策制定和实施方面的领导者。该奖学金有两个独立的轨道：为期两年的研究研究员（PGY-5-PGY-6）和为期一年的研究助理（医学博士和医学学士等）。资金可以分配用于创建一个为期一年的奖学金，专门用于建立一个神经创伤登记处，该奖学金获得者将获得资源和联系，与该管辖范围内的每个国家的政府官员和医疗保健团体建立网络。将为学者分配一个世界区域，目标是建立一个登记处，然后将其与同行学者建立的登记处合并。此外，我们建议创建一个由捐赠者控制的基金作为供资模式。
