Core B: Alzheimer's Disease Down Syndrome Outreach Recruitment and Education (ADDORE)

核心 B：阿尔茨海默病、唐氏综合症外展招募和教育 (ADDORE)

• 批准号: 10667566
• 负责人: Ann D. Cohen
• 金额: $ 145.21万
• 依托单位: UNIVERSITY OF PITTSBURGH AT PITTSBURGH
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-09-30 至 2025-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10667566
• 关键词: Adult; African American; Aging; Agreement; Alzheimer' s Disease; Alzheimer’s disease biomarker; Awareness; Classification; Clinical; Clinical Trials; Cognitive aging; Collaborations; Communities; Community Outreach; Creativeness; Data; Disease; Down Syndrome; Education; Educational Materials; Enrollment; Event; Feedback; Focus Groups; Foundations; Goals; Health Personnel; Individual; Infrastructure; Institution; International; Knowledge; Linguistics; Longitudinal cohort; MRI Scans; Methods; Minority Enrollment; Monitor; Multimedia; Participant; Population; Population Heterogeneity; Positron-Emission Tomography; Procedures; Research; Research Methodology; Research Personnel; Resources; Risk; Sampling; Site; Spinal Puncture; Support Groups; Underrepresented Populations; United States National Institutes of Health; Update; Venipunctures; Work; age related; aging brain; clinical research site; cognitive testing; cohort; community engagement; ethnic minority population; ethnoracial; health disparity; improved outcome; information gathering; interest; member; neuroimaging; neuropathology; outreach; performance site; programs; racial minority population; recruit; social media; study population; success; symposium; underserved community; young adult

ADDORE Core Abstract 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. We will generate and disseminate educational materials regarding the importance of research and research methods targeting AD in adults with DS and increase recruitment of individuals with DS into the ABC-DS cohort from diverse populations and retain existing ABC-DS participants. Successful and unsuccessful outreach strategies will be constantly monitored for updated best practices to be provided to the scientific community. Increased enrollment of adults with DS from diverse populations and retention of existing participants will be the metric for success. 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

添加核心摘要 参与唐氏综合症 (DS) 的研究存在许多障碍，这些障碍也因以下因素而变得复杂： 种族健康差异。患有 DS 的非裔美国人年轻时的死亡率高得不成比例 与患有 DS 的白人相比，我们对各种与年龄相关的风险差异知之甚少。 DS 疾病，包括阿尔茨海默病。 ADDORE 核心的总体目标是生成 与整个社区合作，提供适合文化和语言的材料，以增加 提高来自所有社区的 DS 成年人的意识并参与旨在理解和理解的研究 治疗该人群的 AD。我们将制作并传播有关重要性的教育材料 针对患有 DS 的成人 AD 的研究和研究方法，并增加招募患有 DS 的个体 将不同人群的 DS 纳入 ABC-DS 队列，并保留现有的 ABC-DS 参与者。成功并 将不断监测不成功的外展战略，以向 科学界。增加不同人群中患有 DS 的成人的入学率并保留现有的 参与者将成为衡量成功的标准。这个核心代表了一个近乎独特的参与机会 研究人员和社区利益相关者为增加多样性和 DS 人群的参与度