Developing and implementing community based participatory health research with young adults with Down syndrome

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.”