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

参与唐氏综合症(DS)的研究有许多障碍，这些障碍也 因种族健康差异而变得更加复杂。非洲人比例高得不成比例 与患有DS的白人相比，美国DS患者在年轻时就会死亡，人们对此知之甚少 与DS中各种年龄相关疾病的风险差异有关，包括阿尔茨海默氏症 疾病。ADDORE核心的首要目标是在文化和语言上产生 与广大社区合作，提供适当的材料，以提高认识和 让来自所有社区的患有DS的成年人参与旨在了解和 在这群人中治疗阿尔茨海默病。这一核心代表着一个近乎独特的机会 研究人员和社区利益相关者提供最佳实践，以提高 DS人群的多样性和参与度。这包括行政管理 补充是对NOT-OD-20-024和NOT-OD-21-076的回应。这个项目代表着一个 解决智力残疾和种族/之间的交集的独特机会 种族问题。由于大多数医疗干预和研究都以白人家庭为中心 和那些没有智力残疾的人，我们承认并包括了社区成员 和那些有智力残疾的实际家庭成员作为主题专家的人。 将这些社区成员与学术主题专家合并只会改善我们的 培训、外展和有效性。社区主导的合作伙伴关系，以 颜色和智障社区的成员及其家庭成员将提供 以那些通常被排除在外的社区成员为中心的宝贵战略 来自研究。

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.