University of Pittsburgh Clinical and Translational Science Institute

本应用侧重于种族健康差异作为参与唐氏综合症研究的障碍。与患有唐氏综合症的白人相比，患有唐氏综合症的非裔美国人在年轻时死亡的比例不成比例地高，而且人们对唐氏综合症中各种与年龄有关的疾病（包括阿尔茨海默病）的风险差异知之甚少。增刊的首要目的是为患有唐氏综合症的非裔美国人及其家人和照顾者开发与参与唐氏综合症研究相关的文化和语言上适当的教育和招聘材料。该应用程序将开发招聘材料，评估社区成员对这些材料的接受程度，并根据社区反馈对这些材料进行改进。这些材料将针对患有唐氏综合症和阿尔茨海默病的成年人。第二个目标是增加临床试验门户网站Pitt+Me （https://pittplusme.org/）从不同人群中招募唐氏综合征患者进行相关研究。成功与否将通过非裔美国人加入唐氏综合症相关研究来衡量。

This application focuses on ethnoracial health disparities as a barrier for participation in Down syndrome research. A disproportionately higher rate of African American with Down syndrome die as young adults when compared to Whites with Down syndrome and little is known related to differences in risk for a variety of age-related diseases in Down syndrome, including Alzheimer’s disease. The first aim of the supplement is to develop culturally and linguistically appropriate educational and recruitment materials related to research participation in Down Syndrome for African Americans with Down syndrome and their families and caregivers. The application will develop recruitment materials, evaluate community members acceptance of these materials, and refine these materials based on community feedback. These materials will target adults with Down syndrome and Alzheimer’s disease. The second aim is to increase recruitment of individuals with Down syndrome into related studies in the clinical trial portal Pitt+Me (https://pittplusme.org/) from diverse populations. Success will be measured by enrollment of African Americans into Down syndrome-related studies into this portal.