A longitudinal population-based birth cohort study to understand the past, present, and future of children and youth with traumatic brain injury - PROJECT SUMMARY/ABSTRACT Traumatic brain injury (TBI) sustained during childhood and adolescence (herein referred to as ‘pediatric TBI’) can result in long-term negative outcomes. Pediatric TBI may compromise both skills that are developing at the time of injury and skills that are yet to develop. Importantly, the consequences of pediatric TBI may not be immediately apparent, with problems only manifesting years post-injury when these children are unable to meet developmental milestones. Longitudinal data that follow children with TBI into adulthood is scarce, a limitation also recognized by the Centers for Disease Control and Prevention and stated in its report to Congress. These data are important because TBI is not a single event but rather, a chronic disease with lifelong consequence affecting individuals (e.g., secondary health conditions) as well as society as a whole (e.g., increased healthcare use). Access to and use of healthcare services is also significantly reduced as adolescents transition to adult care, resulting in worse health outcomes and unmet healthcare needs. In addition, there is limited data by sex and/or gender even though there is evidence that sex (biological attributes) and gender (social-cultural factors) influence health service use and outcomes after TBI. Finally, the true burden of pediatric TBI is currently significantly underestimated because most data on the incidence of pediatric TBI are based on healthcare received in the emergency department or hospital settings even though up to 90% of pediatric TBIs are treated in primary care, urgent care, and specialty care. The overarching goal of this project is to leverage existing large datasets to build a dynamic population-based birth cohort of at least 4 million live births in Ontario, Canada, from 1992 to December 2020 (anticipated start of the funding) and up to 28 years of follow-up data. This birth cohort will be the first of its kind in the United States or Canada and as additional years of data become available, the sample size of the birth cohort and follow-up period will likewise increase. All residents of Ontario receive medically necessary health services from a publicly funded health system and collection of these data are mandatory. As such, this birth cohort will capture all interactions with the publicly funded health system from birth until the end of follow-up period, migration, or death. The specific research objectives are to use this birth cohort to: (1) provide comprehensive, sex-specific estimates of the incidence of pediatric TBI; (2) determine the frequency and types of secondary health conditions that occur post-pediatric TBI; and (3) identify the patterns of healthcare use post-pediatric TBI from childhood to adulthood. This Early Career Award will enable the PI to build this birth cohort to generate rigorous preliminary data that will increase the likelihood of successful R01 applications and extend her independent program of research to understand the long- term health outcomes after pediatric TBI.
