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)

基本信息

批准号：
10037877
负责人：
Ann D. Cohen
金额：
$ 209.8万
依托单位：
UNIVERSITY OF PITTSBURGH AT PITTSBURGH
依托单位国家：
美国
项目类别：
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/10037877
关键词：
Adult African American Aging Agreement Alzheimer&apos s Disease Alzheimer’s disease biomarker Awareness Classification Clinical Clinical Trials Cognitive aging Collaborations Communities Community Outreach 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 Minority Groups Monitor Multimedia Participant Persons Population Population Heterogeneity Positron-Emission Tomography Procedures Research Research Methodology Research Personnel Resources Risk Sampling Site Spinal Puncture Support Groups Underrepresented Minority United States National Institutes of Health Update Venipunctures Work age related aging brain base clinical research site cognitive testing cohort ethnic minority population health disparity improved outcome interest member neuroimaging neuropathology outreach performance site programs racial minority recruit social media study population success symposium young adult

项目摘要

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

添加核心摘要唐氏综合症（DS）的研究参与障碍也有许多复杂民族健康差异。 DS死亡的非裔美国人的比例不成比例与DS和DS的白人相比，很少有与年龄有关的风险差异 DS中的疾病，包括阿尔茨海默氏病。附加核心的总体目标是生成在文化和语言上适当的材料，与整个社区合作，以增加来自所有社区DS成年人的意识和参与，以理解和在这个人群中治疗广告。我们将生成并传播有关重要性的教育材料针对DS成年人的AD的研究和研究方法，并增加了患有 DS进入来自潜水员人群的ABC-DS队列，并保留现有的ABC-DS参与者。成功和不成功的外展策略将不断监视，以提供最新的最佳实践科学界。增加了来自潜水员人群DS的成年人的入学率，并保留了现有的参与者将成为成功的指标。这个核心代表了参与的几乎独特的机会研究人员和社区利益相关者为增加多样性和 DS人口中的参与