A Model for Inclusion of Minorities in Genetic Research

将少数群体纳入基因研究的模型

• 批准号: 7690950
• 负责人: Clara M Lajonchere
• 金额: $ 4.1万
• 依托单位: UNIVERSITY OF SOUTHERN CALIFORNIA
• 依托单位国家: 美国
• 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/7690950
• 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

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生神经发育和行为障碍，在婴儿期或幼儿期表现出来。尽管病因尚不清楚，但数据表明自闭症和自闭症谱系障碍 (ASD) 很可能是由于遗传和环境影响造成的。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变化。虽然大多数大型研究项目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，并妨碍对种族/族裔群体之间的差异进行系统评估。因此，需要向研究人员提供有效的策略，以成功地将少数群体纳入研究中，这一点至关重要且及时。该申请要求提供两年的支持，以建立大学/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组研究中心、南加州大学发育障碍研究、教育和服务卓越中心 (USC UCEDD) 以及 Fiesta Educativa（一个针对拉丁裔残疾儿童家庭的长期社区教育、支持和倡导组织）。我们战略性地瞄准拉丁裔社区，因为他们是加州乃至全国增长最快的少数族裔人口。目标是进行试点研究，使我们能够系统地制定和评估有效的策略，以成功招募和保留拉丁裔受试者的代表性样本，以实现中心的招募目标。本申请的具体目标是： A. 确定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，并利用该知识制定招募 ASD 拉丁裔家庭进行基因研究的策略； B. 通过培训合格的社区领袖担任研究大使，制定并试点一项针对拉丁裔家庭的外展和招募干预措施； C. 对有针对性的少数群体包容对更广泛的中心研究计划和预算的财政和计划影响进行成本/效益分析； D. 为开发一个模型奠定基础，该模型可以帮助学术界与少数民族社区的家长和消费者建立桥梁，以更好地确保残疾少数民族在生物医学研究中得到适当的代表。