Mobilizing Community Systems to Engage Families in Early ASD Detection & Services

描述（由申请人提供）：美国儿科学会建议在18个月和24个月时对所有儿童进行自闭症谱系障碍（ASD）筛查，因为研究表明，早期干预可以使儿童的结果最大化5。ASD最早的症状是出现在头两岁的社会交流里程碑上的延迟，然而大多数儿童直到4-5岁才被诊断出来。服务不足的家庭甚至更晚才被发现，而且在干预研究中代表性明显不足。至关重要的是，动员社区服务系统在筛查、评估和早期干预（EI）的整个过程中影响家庭参与，并支持与社区公共EI的联系，以解决健康差距。为了响应rfa - mah -14-100，这项由4所大学进行的合作调查旨在记录在线自动通用筛查的有效性，用于筛查18个月大的沟通延迟和自闭症，以及转诊到ASD评估的决策规则，并研究一种基于证据的干预措施，以提高家庭参与度，加快筛查、诊断、获得EI资格和EI服务的速度。该研究将重点关注可以可靠检测到ASD的最小年龄，即18个月，并比较3种不同社区服务系统筛查和转诊的有效性：1)初级保健，包括私人和公共卫生保健机构以及联邦合格的卫生中心；2)妇女、婴儿和儿童（WIC）食品和营养服务；3)全国黑人教会倡议（NBCI）。通过一个基于网络的平台，我们将扩大他们进行普遍自闭症谱系障碍筛查和转诊的能力，并通过公共的《残疾人教育法》（IDEA） C部分系统，为出生至3岁的儿童确定EI提供者的资格。创新的基于网络的技术将在多个层面上进行整合，作为互动式专业发展课程的基础，使这些社区服务系统能够有效地了解自闭症，并通过与电子健康记录链接的无缝自动化实施普遍宽带和自闭症特定筛查，并为家庭提供关于自闭症的基于网络的工具。这个多学科研究团队将进行多地点实用的随机临床试验，以测试基于证据的家庭参与干预的有效性。我们还将进行一项探索性研究，以测试在整个C部分系统中提高社区EI提供者对循证干预的吸收的策略。该方案有可能将ASD筛查的年龄降低到18个月，这将对早期获得干预和改善ASD服务系统具有重要意义，并准备好在美国各地的社区环境中立即快速实施。研究结果将通过为研究人员提供一种招募基于人群的样本的方法来推进科学，允许在更年轻的年龄进行研究，这可能会加速基因、神经科学和干预研究，并导致社区医疗保健服务的变革。

DESCRIPTION (provided by applicant): The American Academy of Pediatrics recommends screening all children for autism spectrum disorder (ASD) at 18 and 24 months because research indicates that earlier intervention maximizes children's outcomes5. The earliest signs of ASD are delays in social communication milestones that appear in the first 2 years and yet most children are not diagnosed until 4-5 years of age. Underserved families are identified even later and significantly underrepresented in intervention research. It is vitally important to mobilize community service systems to impact family engagement throughout the process of screening, evaluation, and early intervention (EI) and to support linkages to public community-based EI in order to address health disparities. In response to RFA-MH-14-100, this collaborative investigation of 4 universities aims to document the effectiveness of an online automated universal screen for communication delay and autism initially at 18 months of age and decision rule for referral to an ASD evaluation, and to study an evidence-based intervention to increase family engagement and expedite receipt of screening, diagnosis, eligibility for EI, and EI services. The study will focus on the youngest age when ASD can be detected reliably, which is 18 months, and compare the effectiveness of screening and referral by 3 different community service systems: 1) primary care including private and public health care agencies and federally qualified health centers; 2) Women, Infants, and Children (WIC) Food and Nutrition Service; and 3) the National Black Church Initiative (NBCI). Using a web-based platform we will expand their capacity for universal ASD screening and referral for diagnosis and determining eligibility by EI providers through the public Individuals with Disabilities Education Act (IDEA) Part C system for children birth to 3 years of age. Innovative web-based technology will be integrated at multiple levels- as the basis for an interactive professional development course to enable these community service systems to efficiently learn about autism and implement a universal broadband and autism-specific screening with seamless automation that links to electronic health records and provides families with web-based tools about autism. This multidisciplinary research team will conduct a multisite pragmatic randomized clinical trial to tes the effectiveness of an evidence-based Family Engagement Intervention. We will also conduct an exploratory study to test strategies to improve uptake of evidence-based intervention by community-based EI providers throughout the Part C system. This protocol has the potential to lower the age of screening for ASD to 18 months, which will have important implications for earlier access to intervention and improving ASD service systems and be ready for immediate and rapid implementation in community settings across the US. Findings will advance science by providing researchers with a method for recruiting a population-based sample, allowing for research at younger ages, which could accelerate genetic, neuroscience, and intervention research, and lead to transformative changes to community healthcare delivery.