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.

摘要 大理石(婴儿自闭症风险的标记物：学习早期迹象)研究于2006年启动，当时 首批开始跟踪自闭症谱系障碍(ASD)儿童年幼兄弟姐妹的流行病学队列- 在ASD可能发生的胎儿期之前和期间升高。与基于人口的队列形成对比 由于ASD患病率相对较低(1/44)，需要大量样本，而且通常无法 进行ASD的金标准诊断，丰富的风险设计通过登记提供更高的效率 患有自闭症(20%)和其他神经发育问题(15%-20%)的高家族风险参与者。 其他高风险的年轻兄弟姐妹在出生后招募，除了EARLI的研究没有 注册时间更长。及早注册提供了一个机会来检查广泛的环境暴露 以及早期的生物标志物。鉴于ASD的患病率越来越高，投资于确定因素的研究是至关重要的 负责增加风险和ASD病因的潜在机制，目前尚不清楚。 该项目通过维护和加强大理石的基础设施来弥补这两个差距- 风险队列。这项大理石研究已经为533名儿童招募了522名孕妇，并收集了近28,000名孕妇 样本，关于暴露、病史、饮食、生活方式和家庭因素的综合数据，测量 甲基化、表达、免疫、营养和污染标记，并进行了丰富的表征 使用黄金标准临床评估的神经发育结果。大理石研究采用了一种 多管齐下的招聘方法，包括各种社区外联活动，导致 社会人口学上不同的队列，允许检查一个人的分布和相关性的差异 种族、民族、出生地、父母教育和其他社会经济因素的多种环境因素 指标。弹珠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。我们建议继续注册和跟踪参与者在精简的 现在将容纳说西班牙语的家庭的协议，并将我们的在线存在扩大到更广泛的范围 为美国仅有的几个预期收集妊娠的高风险ASD队列之一共享资源 数据和生物样本以及对风险因素、介体和结果的深入评估，以推进对 ASD的病因和早期生物标志物。我们将进一步努力了解种族，民族和 在ASD的诊断中存在的社会人口学差异，可能是由结构性种族主义14引起的 从我们的参与者那里收集有关经历过的歧视的信息，并通过链接到邻里层面 各种因素。这些目标的实现将显著丰富大理石资源，加快协作共享，并 允许我们和未来的合作者在高风险队列中更好地解决ASD预测因素的问题， 同时更彻底地调整混杂因素，包括结构性种族主义造成的因素，并将 增加对经历过的歧视如何在这些家庭的照顾和福祉中发挥作用的理解。