Surveillance of Race/Ethnicity Data of Sustained TBI Within the United States and Representation Within a National TBI Research Database

Elena Polejaeva, VASDHS/UCSD, San Diego, United States
Leah Talbert, Brigham Young University, Provo, United States
Michael Thomas, Colorado State University, Fort Collins, United States
Cody Witten, Veterans Medical Research Foundation, San Diego, United States
Amy Jak, VASDHS/UCSD, San Diego, United States


To reduce health disparities and improve care, it is essential that clinical research in traumatic brain injury (TBI) be representative of the diverse populations that sustain a TBI. While existing efforts in TBI surveillance within the U.S. have expanded understanding of age at and modality of injury, TBI-associated ER visit, TBI-related hospitalizations, and mortality rates, race and ethnicity data for individuals with sustained TBI has often been omitted or limited. There is also limited data on whether those participating in TBI research are representative of cases captured in surveillance data. Therefore, we aimed to compile current publicly available state TBI surveillance efforts which include race/ethnicity data, and determine if a national TBI research database adequately captured the race/ethnic diversity of the U.S. population based on rates of sustained TBI within the population.

Participants and Methods:

Publicly available race and ethnicity data in those who sustained a TBI were examined using a combination of state reports, U.S. Census data, and the Federal Interagency Traumatic Brain Injury Research (FITBIR) national research database. 22 states had publicly reported data on TBI with a minimum of 2 race and/or ethnicity categories, from which a total of 475,901 TBI cases were identified (ER visit or Hospitalization with TBI diagnosis). U.S. Census data for associated years was used to determine race/ethnicity breakdowns for each of the 22 states to calculate incidence rates. FITBIR was used as a comparative national TBI research database, with a total of 41,555 TBI cases.


Separately, the state vs. FITBIR TBI case data comprised participants who identified 75% vs. 47% White, 18% vs. 11% Black, 3% vs. 0% Asian/Pacific Islander, 3% vs. 6.5% Other/Not Reported, 1% vs. 0.5% American Indian/Native American, 0.3% vs. 1.6% Asian, 79% vs. 29% Non-Hispanic, and 21% vs. 4% Hispanic. State incidence rates per 10,000 were 35 American Indian/Native American, 32 White, 32 Black, 27 Other/Unknown, 22 Asian/Pacific Islander, 12 Asian, 10 Native Hawaiian/Pacific Islander, 31 Non-Hispanic, and 28 Hispanic. When comparing FITBIR data to states’ TBI population race/ethnicity data, the research sample captured 20% of Other/Unknown, 5% for each of the following groups: White, Black, Asian, and American Indian/Native American, 1% for Native Hawaiian/Pacific Islander, 3% for Non-Hispanic, and 2% for Hispanic.


These results suggest that American Indians/Native Americans experienced the highest rates of TBI across the 22 states with public race/ethnicity data. White and Black individuals exhibited the second highest incidence rates. Regarding capturing race/ethnicity data in TBI research compared to state population TBI cases, the data was equivalent across White, Black, Asian, and American/Native American races. However, the largest sample of data was Other/Unknown, highlighting that race/ethnicity data continues to be omitted in both hospital demographic data collection and research datasets.  Within state data, race categories varied significantly from state to state and ethnicity was often lumped together with race or omitted entirely. Using core race and ethnicity categories consistent with the U.S. Census would aid in better surveillance efforts, provide richer data for examining health disparities and intervention modalities/efforts.

Category: Concussion/Mild TBI (Adult)

Keyword 1: concussion/ mild traumatic brain injury
Keyword 2: cross-cultural issues