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Introduction to a novel, international TBI Patient Registry
The burden of traumatic brain injury (TBI) disproportionately affects low- and middle-income countries (LMIC), in which TBI prevalence is high and patients are twice as likely to die from their TBI as those in high income countries, largely due to issues related to health system organization and healthcare service delivery. LMICs in Eastern Europe and Asia are characterized by growing economies but relatively poor health infrastructures. Additionally, these countries face important challenges regarding availability of health system information, including complete absence of injury surveillance and acute lack of epidemiological data, rendering evidence-based policymaking a real and daunting challenge.
Over the past years, the Academy for Multidisciplinary Neurotraumatology (AMN) has promoted excellent opportunities for dialogue and exchange of expertise between clinicians and public health professionals from both mature and less developed health systems. The multidisciplinary and geographically diverse feature of AMN educational and scientific events has generated a melting pot of ideas for addressing and improving overall care for the global challenge of TBI, resulting in a continuous discussion forum on this topic among attendees. In our 2019 AMN Conference, delegates from from Austria, Egypt, the Philippines, South Korea, Poland, Russia, Ukraine, Uzbekistan, and Romania unanimously called for action in TBI surveillance, in the attempt to overcome systemic barriers prevent evidence-based policimaking preventing countries from improving standard of care in TBI.
The PRESENT Mission, Vision and Objectives
Given the growing number of AMN experts that lie at the forefront of TBI care in our community, our goal is to help bridge the significant information gap between countries, and to prepare the ground for multidimensional approaches after TBI. To achieve this effort, we have layed the ground for an innovative TBI registry platform – PRESENT. The main purpose of the instrument is to combine collection of clinical, injury prevention and quality of care components related to TBI, in the attempt to provide information for improvement of healthcare delivery, and also for better understanding brain injury in general.
Our mission is to provide easy, universal access for institutions that have previously been deprived of this exercise, ultimately leading to an enhanced environment for dissemination of treatment guidelines, patient pathways, and neurorehabilitation best practive.
By establishing a direct communication line and feedback cycle across all the stakeholders involved in the patient treatment course to promote long-term follow-up and use of novel technological solutions, our vision is to serve as the main hub for TBI data collection in countries with low access to advanced data surveillance mechanisms.
Our objectives are driven by the following core values:
- Evidence-informed – the registry will be developed in collaboration with partners with strong experience in TBI registry capacity building.
- Clinician-tailored – we intend to promote intense pre-testing and piloting among experts from our community, in order to tailor the instrument to clinician’s needs.
- Universal accessibility and user-friendliness – we strive to provide e-accessibility and to develop an interface that facilitates data collection.
- Brevity for timeliness of collection – the platform will avoid placing a significant burden on clinicians’ schedules, only collecting essential data points.
The most important asset of the project is access, involvement and functional communication with existing and future professionals part of our network, in order to facilitate active participation in data collection efforts. We envision piloting the project in both developed and developing countries, generating good practice examples and capacity building hubs for LMIC settings worldwide.
Professor Dafin F. Muresanu,
AMN Secretary General