Inclusion of individuals with Down syndrome in auditory research

Abstract

This talk will provide an overview of the procedures, challenges, and key findings of Project INCLUDE at Boys Town National Research Hospital. Funded by a trans-NIH initiative to investigate health conditions that affect individuals living with Down syndrome, the goal of Project INCLUDE at Boys Town National Research Hospital is to characterize how speech, language, and hearing develop across the lifespan. Individuals living with Down syndrome have been inadequately represented in auditory research, which has likely contributed to health care disparities. The exclusion of individuals with Down syndrome in prior research is particularly concerning given the high prevalence of hearing loss and otologic disease observed in this population. Results from an ongoing experiment investigating masked speech recognition outcomes will be presented. Participants are school-age children and young adults with Down syndrome and age-matched participants who are neurotypical. Data collection includes clinical audiological measures and standardized assessments of speech, language, and executive function, facilitating comparisons with other cohorts affiliated with the NIH-wide initiative. Recommendations for recruitment, details on the formation of a community advisory board, and community-based testing initiatives will be discussed.