BUILDS MARBLES: Biorepository Upkeep and Infrastructure for Longitudinal Data Sharing for MARBLES

建造弹珠：弹珠纵向数据共享的生物储存库维护和基础设施

• 批准号: 10588957
• 负责人: Brittany D. Chambers
• 金额: $ 39.89万
• 依托单位: UNIVERSITY OF CALIFORNIA AT DAVIS
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-09-30 至 2027-10-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10588957
• 关键词: Address; Affect; Area; Autism Diagnosis; Biological Markers; Caring; Child; Clinical; Clinical Services; Clinical assessments; Collection; Community Outreach; Data; Databases; Diet; Education; Enrollment; Environmental Exposure; Environmental Health; Environmental Risk Factor; Epidemiology; Equity; Ethnic Origin; Etiology; Evaluation of Risk Factors; Family; Future; Green space; Home; Immune; Individual; Infrastructure; Investments; Language; Learning; Life Style; Link; Low Prevalence; Measurement; Measures; Mediator; Medical History; Methylation; Neighborhoods; Neurodevelopmental Disorder; Nutrient; Outcome; Participant; Personal Satisfaction; Pregnancy; Prevalence; Protocols documentation; Race; Recording of previous events; Research Personnel; Resource Sharing; Resources; Risk; Sample Size; Sampling; Siblings; Site; Specimen; Structural Racism; System; Update; Urbanicity; Visit; Work; autism spectrum disorder; autistic children; bilingualism; biobank; clinical care; cohort; community engagement; contextual factors; data sharing; deprivation; design; early detection biomarkers; economic indicator; environmental justice; experience; factor A; follow-up; high risk; improved; indexing; neurodevelopment; participant enrollment; perceived discrimination; population based; postnatal; postnatal period; prenatal; prospective; recruit; shared database; sociodemographic disparity; sociodemographic factors; sociodemographics; socioeconomics; tool; walkability; web site

Abstract The MARBLES (Markers of Autism Risk in Babies: Learning Early Signs) Study was launched in 2006 as the first epidemiologic cohort of younger siblings of children with autism spectrum disorders (ASD) to begin follow- up before and during the prenatal period when ASD is likely to originate. In contrast to population-based cohorts that require large sample sizes given a relatively low prevalence of ASD (1 in 44) and typically are not able to conduct gold standard diagnosis of ASD, the enriched-risk design offers greater efficiency by enrolling participants at high familial risk for developing ASD (>20%) and other neurodevelopmental concerns (15-20%). Other cohorts of high-risk younger siblings recruited postnatally, with the exception of the EARLI study that is no longer enrolling. Early enrollment provides an opportunity to examine a broad array of environmental exposures and early biomarkers. Given increasing prevalence of ASD, it is critical to invest in studies identifying factors responsible for increasing risk and the mechanisms underlying ASD etiology, which are not yet well-understood. This project addresses both gaps by maintaining and enhancing the infrastructure of the MARBLES enriched- risk cohort. The MARBLES study has enrolled over 522 pregnancies for 533 children and collected nearly 28,000 samples, comprehensive data on exposures, medical history, diet, lifestyle, and home factors, measured methylation, expression, immune, nutrient, and contaminant markers, and conducted rich characterization of neurodevelopmental outcomes using gold-standard clinical assessments. The MARBLES study employed a multi-pronged recruitment approach that includes a variety of community outreach activities that resulted in a sociodemographically diverse cohort allowing examination of differences in distributions and associations of a multitude of environmental factors across race, ethnicity, nativity, parental education, and other socioeconomic indicators. The MARBLES team has a history of supporting both scientific and workforce diversity and will continue to expand these efforts. We propose to continue to enroll and follow participants under a streamlined protocol that will now accommodate Spanish-speaking families, and expand our online presence to more widely share resources for one of the only enriched-risk ASD cohorts in the U.S. with prospectively collected pregnancy data and biosamples and deep evaluation of risk factors, mediators, and outcomes, to advance discovery of etiologic factors and early biomarkers for ASD. We will further work to understand the racial, ethnic, and sociodemographic disparities that exist in the diagnosis of ASD that are likely driven by structural racism14 by collecting information from our participants on experienced discrimination and by linking to neighborhood-level factors. Completion of these aims will markedly enrich MARBLES resources, expedite collaborative sharing, and allow us and future collaborators to better address questions on predictors of ASD in an enriched-risk cohort, while more thoroughly adjusting for confounding factors including those resulting from structural racism, and will add understanding of how experienced discrimination plays a role in these families’ care and well-being.

抽象的 大理石（婴儿自闭症风险的标记：学习早期迹象）研究于2006年启动 自闭症谱系障碍儿童的年轻兄弟姐妹（ASD）的第一个流行病学队列开始跟随 - 在产前ASD可能起源的产前和期间上升。与基于人群的队列相反 如果ASD的患病率相对较低，则需要大型样本量（44分），并且通常无法 进行ASD的黄金标准诊断，丰富的风险设计通过注册提供了更高的效率 家庭患ASD（> 20％）和其他神经发育问题（15-20％）的高家庭风险的参与者（15-20％）。 除了Earli研究之外 更长的注册。早期入学提供了一个检查各种环境暴露的机会 和早期的生物标志物。鉴于ASD的越来越流行，至关重要的是投资于识别因素的研究 负责增加风险和ASD病因的基础机制，这些机制尚不理解。 该项目通过维护和增强大理石的基础设施来解决差距 - 风险队列。大理石研究已为533名儿童招募了超过522个怀孕，并收集了近28,000名 样本，有关暴露，病史，饮食，生活方式和家庭因素的全面数据，测量 甲基化，表达，免疫，营养和污染物标记物，并进行了丰富的表征 使用金标准临床评估的神经发育结果。大理石研究采用了 多支处理的招聘方法，包括各种社区外展活动，导致 社会人口统计学上多样的队列，允许检查分布和关联的差异 种族，种族，诞生，父母教育和其他社会经济的多种环境因素 指标。大理石团队有支持科学和劳动力多样性的历史，并将 继续扩大这些努力。我们建议继续注册并关注基于简化的参与者 现在可以容纳讲西班牙语家庭的协议，并将我们的在线形象扩展到更广泛 共享美国唯一富裕风险的ASD队列之一的资源 数据和生物样本以及对风险因素，调解人和结果的深入评估，以提高发现 ASD的病因学因素和早期生物标志物。我们将进一步努力了解种族，种族和 ASD诊断中存在的社会人口统计学分布可能是由结构种族主义驱动的14 从我们的参与者那里收集有关经验歧视的信息，并链接到邻里级别 因素。这些目标的完成将显着丰富大理石资源，加快协作共享以及 允许我们和将来的合作者更好地解决有关ASD预测因素的问题，在丰富风险的队列中， 同时更彻底地调整了混杂因素，包括结构性种族主义的因素，并将 加上对经验的歧视在这些家庭的关怀和福祉中发挥作用的理解。