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A Model for Inclusion of Minorities in Genetic Research

将少数群体纳入基因研究的模型

基本信息

批准号：
7911006
负责人：
Clara M Lajonchere
金额：
$ 3.28万
依托单位：
UNIVERSITY OF SOUTHERN CALIFORNIA
依托单位国家：
美国
项目类别：
财政年份：
2008
资助国家：
美国
起止时间：
2008-09-22 至 2010-06-30
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/7911006
关键词：
Affect African American Architecture Ashkenazim Autistic Disorder Behavior Disorders Biological Biomedical Research Birth Budgets California Candidate Disease Gene Caucasians Caucasoid Race Child Classification Clinical Communities Complex Cost-Benefit Analysis Data Development Developmental Disabilities Disabled Children Education Ensure Environmental Exposure Environmental Risk Factor Ethnic group Evaluation Explosion Family Funding Genetic Genetic Models Genetic Research Genomics Goals Health Health Services Accessibility Hereditary Disease Incidence Individual Inheritance Patterns Intervention Knowledge Latino Lead Learning Mediating Minority Modeling Parents Pilot Projects Population Population Heterogeneity Predisposition Prevalence Qualifying Race Request for Applications Research Research Personnel Sampling Services Severities Sickle Cell Anemia Socioeconomic Status Tay-Sachs Disease Training Universities Validation advocacy organizations autism spectrum disorder base disability disorder risk early childhood family genetics genetic pedigree genetic variant genome wide association study infancy meetings outreach phenomics prevent programs racial and ethnic

项目摘要

DESCRIPTION (provided by applicant): Autism is a complex lifelong neurodevelopmental and behavioral disorder that manifests in infancy or early childhood. Although the causes are still unknown, the data suggest that autism and Autism Spectrum Disorders (ASDs) are likely due to genetic and environmental effects. Differences in culture, socioeconomic status, environmental exposures, access to health care and other factors may influence the expression of the underlying genetic architecture and lead to alterations in prevalence and clinical severity. While most large-scale research programs are disproportionately comprised of Caucasian individuals, these recruitment biases compromise the generalizability of current findings and prevent a systematic evaluation of differences across racial/ethnic groups. Therefore, the need to present researchers with effective strategies for successful inclusion of minorities in research is critical and timely. This application requests two years of support to develop a University/Community partnership involving the newly established Center for Genomic and Phenomic studies in Autism at the University of Southern California (USC), the USC University Center for Excellence in Developmental Disabilities Research, Education and Service (USC UCEDD), and Fiesta Educativa, a longstanding community-based education, support and advocacy organization for Latino families with children with disabilities. We are strategically targeting the Latino community because they are the fastest-growing minority population in the state of California and nationally. The goal is to conduct pilot studies that will allow us to systematically develop and evaluate effective strategies for the successful recruitment and retention of a representative sample of Latino subjects to meet the Center's recruitment goals. Specific Aims of this application are to: A. Identify specific barriers to participation in biomedical research among Latino families with children with autism and use that knowledge to develop strategies for recruitment of ASD Latino families for genetic research; B. Develop and pilot an intervention for outreach and recruitment of Latino families by training qualified community leaders to serve as research ambassadors; C. Conduct a cost/benefit analysis of the fiscal and programmatic impact of targeted minority inclusion on the broader Center's research program and budget; D. Lay the groundwork for the development of a model that can help bridge the academic community with parents and consumers from minority communities, to better ensure that minorities with disabilities are appropriately represented in biomedical research.

描述（由申请人提供）：自闭症是一种复杂的终身神经发育和行为障碍，表现在婴儿期或幼儿期。虽然原因仍然未知，但数据表明自闭症和自闭症谱系障碍（ASD）可能是由于遗传和环境影响。文化、社会经济地位、环境暴露、获得医疗保健和其他因素的差异可能会影响潜在遗传结构的表达，并导致患病率和临床严重程度的改变。虽然大多数大型研究项目都不成比例地由白人组成，但这些招募偏见损害了当前研究结果的普遍性，并阻止了对种族/族裔群体差异的系统评估。因此，向研究人员提供将少数群体成功纳入研究的有效战略是至关重要和及时的。本申请要求两年的支持，以发展大学/社区合作伙伴关系，涉及南加州大学（USC）新成立的自闭症基因组和表型研究中心，南加州大学发展障碍研究，教育和服务卓越中心（USC UCEDD）和Fiesta Educativa，这是一个长期以社区为基础的教育，支持和宣传拉丁美洲残疾儿童家庭的组织。我们的战略目标是拉丁裔社区，因为他们是加州和全国增长最快的少数民族人口。我们的目标是进行试点研究，使我们能够系统地开发和评估成功招聘和保留拉丁美洲受试者的代表性样本的有效策略，以满足中心的招聘目标。本申请的具体目的是：找出有自闭症儿童的拉丁裔家庭参与生物医学研究的具体障碍，并利用这些知识制定招募自闭症谱系障碍拉丁裔家庭进行遗传研究的策略; B.通过培训合格的社区领导人担任研究大使，制定和试点拉丁美洲家庭的外联和招募干预措施;进行成本/效益分析的财政和计划的影响，有针对性的少数民族包容性更广泛的中心的研究计划和预算;为制定一种模式奠定基础，帮助学术界与少数群体社区的父母和消费者建立桥梁，以更好地确保残疾少数群体在生物医学研究中有适当的代表性。