Alzheimer Biomarker Consortium - Down Syndrome (ABC-DS)-04 Supplement 5

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There are numerous barriers to research participation in Down syndrome (DS) that are also complicated by ethnoracial health disparities. A disproportionately higher rate of African American with DS die as young adults when compared to Whites with DS and little is known related to differences in risk for a variety of age-related diseases in DS, including Alzheimer’s disease. The overarching goal of the ADDORE Core is to generate culturally and linguistically appropriate materials, in collaboration with community at large, for increasing awareness and engagement of adults with DS from all communities into research aimed at understanding and treating AD in this population. This core represents a near unique opportunity to engage researchers and community stakeholders to inform best practices for increasing diversity and engagement within the DS population. This INCLUDE administrative supplement is in response to NOT-OD-20-024 and NOT-OD-21-076. This project represents a unique opportunity to address the intersections between intellectual disabilities and race/ ethnicity. As most medical interventions and research studies have centered on white families and those without intellectual disabilities, we recognize and have included community members and those with actual family members with intellectual disabilities as subject matter experts. Merging these community members with academic subject matter experts will only improve our training, outreach and effectiveness. A community-led partnership that centers both families of color and members of the intellectual disability community and their family members will provide invaluable strategies to center those community members who have been typically excluded from research.