Each year, it is estimated that more than 10 million people in the world suffer Traumatic Brain Injury (TBI), and in sub-Saharan Africa TBI rates are much higher than global averages. Rates of TBI mortality and disability in Uganda are similar to those throughout SSA, yet national data on the burden of injury are scarce. The large and growing burden of TBI in Uganda urgently requires a response, which in turn will require that critical knowledge gaps be addressed. We propose the Traumatic Brain Injury Across the Lifespan in Uganda (TBI-Uganda) Program to define the health and economic burden of traumatic brain injuries across the lifespan in Uganda in a collaborative research effort that will define the burden of TBI, develop sustainable data systems, and train Ugandans in TBI research to help find and fill these gaps and advance a research-based response. Our innovative model of sustainable research collaboration will involve the Johns Hopkins University Bloomberg School of Public Health (JHU), USA and Makerere University School of Public Health (MU) and Mulago National Referral Hospital (MH) in Uganda. We will use US expertise to strengthen the Ugandan institutions, promote a sustainable research enterprise focused on TBI, and enable further use of research evidence by proposing a larger intervention study in Uganda. The project's research will identify gaps in public health expertise and in clinical care o TBI patients. We will apply these results to reduce the growing burden of TBI across the lifespan and propose a larger intervention study by the end of two years. We will first define core variables and Internet platforms for a data registry focused on traumatic brain injuries in Uganda (Specific Aim 1, months 1-6). We will then pilot-test the Internet-based the Kampala internet-Traumatic Brain Injury Registry (KiTBIR) registry at MH for 1 year (Specific Aim 2, months 7-18). This not only will improve understanding of TBI in Kampala, but also will test the viability of ongoing data systems and human resources support for such a secure internet-based registry, because continuous data collection system will be crucial to the design and evaluation of future interventions. Throughout the project we will develop research skills and data analysis capacity among a core group of TBI clinicians at MH and MU (Specific Aim 3, months 1-24), through researcher and stakeholder workshops as well as online courses in relevant health and policy topics. Finally, we will develop a research plan for an intervention study on TBI in Kampala as a joint JHU-MU proposal (R01) for research to evaluate a set of interventions using the KiTBIR (Specific Aim 4, months 20-24). Implementation of a TBI registry at MH will help clearly define the burden of TBI in Uganda and the risk factors associated with TBI incidence and outcome, and help identify correctable factors in the treatment of this population. The Internet-based approach to TBI registry development outlined in this proposal represents a significant advancement in data collection for TBI patients in the developing world.
Uganda has one of the world's highest burdens of traumatic brain injury (TBI), yet the trained human resources and systematic data needed to advance TBI research and treatment are lacking. We propose a collaborative program in Uganda between the Johns Hopkins University Bloomberg School of Public Health, USA and Makerere University School of Public Health and Mulago Hospital, Uganda for the purposes of defining the national burden of TBI, establishing a TBI registry supported by sustainable data systems and data collection practices, and training Ugandans in the practice of TBI research. This program will culminate in the development of a larger research proposal involving both public health and clinical practitioners with the goal of reducing Uganda's high and growing burden of TBI across the lifespan.
|Mehmood, Amber; Zia, Nukhba; Hoe, Connie et al. (2018) Traumatic brain injury in Uganda: exploring the use of a hospital based registry for measuring burden and outcomes. BMC Res Notes 11:299|