Channell, Marie Moore PHD

PROJECT NARRATIVE This community-based participatory research study partners with a national Steering Committee of 12 young adults with Down syndrome and a smaller team of co-researchers with Down syndrome who will help with all parts of the study (e.g., study design, data collection, data analysis, dissemination). This study aims to (1) explore the health experiences of young adults with Down syndrome, including what impedes or facilitates their social, physical, and mental health, (2) develop resources for the broader Down syndrome community about pathways to improve social, physical, and mental health, and (3) develop a toolkit for researchers to partner with co- researchers who have Down syndrome. This project aligns with the NIH INCLUDE Down Syndrome Research Plan theme of “Living and Aging with DS” and its objective to “increase inclusion of people with Down syndrome in research.”

Individuals with Down syndrome are at a tenfold risk for autism spectrum disorder (ASD) relative to the general population; thus, there is an urgent need for clinical trials to have reliable, valid ASD screening, diagnostic, and symptom monitoring tools in this population. We will evaluate psychometric characteristics of ASD symptom measures and characterize ASD profiles in Down syndrome. This project aligns with NIH INCLUDE Project objectives and contributes to clinical trials readiness by providing ASD measures in Down syndrome that can screen for ASD risk to identify candidates for treatment, stratify cohorts by ASD sub- profiles, and monitor response to treatment across these profiles.