A Model for Inclusion of Minorities in Genetic 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。虽然病因尚不清楚，但数据表明自闭症和自闭症谱系障碍（ASDs）可能是由于遗传和环境的影响。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不成比例地由白人个体组成，但这些招募偏见损害了当前研究结果的普遍性，并阻碍了对种族/民族群体差异的系统评估。因此，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是至关重要和及时的。这项申请需要两年的支持，以发展大学/社区合作伙伴关系，包括新成立的南加州大学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，以及Fiesta Educativa，一个长期以社区为基础的教育，支持和倡导组织，为有残疾儿童的拉丁裔家庭提供支持。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战略，以成功招募和保留具有代表性的拉丁裔受试者样本，以实现中心的招聘目标。该应用程序的具体目的是：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，并利用这些知识制定招募自闭症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，制定和试行一项干预措施，扩大和招募拉丁裔家庭；C.对有针对性的少数民族纳入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.为发展一种模式奠定基础，这种模式可以帮助学术界与少数民族社区的家长和消费者建立联系，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。

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.