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最大限度地提高儿童的结局。ASD的最早迹象是在前2年出现的社交里程碑的延迟，但大多数儿童直到4-5岁才被诊断出来。获得服务不足的家庭被确定的时间更晚，在干预研究中的代表性明显不足。至关重要的是，动员社区服务系统，以影响家庭参与整个过程中的筛查，评估和早期干预（EI），并支持与公共社区为基础的EI的联系，以解决健康差距。为了响应RFA-MH-14-100，这项由4所大学组成的合作调查旨在记录最初在18个月大时进行交流延迟和自闭症的在线自动通用筛查的有效性，以及转介到ASD评估的决策规则，并研究以证据为基础的干预措施，以增加家庭参与并加快接受筛查，诊断，EI资格和EI服务。该研究将重点关注可以可靠检测ASD的最小年龄，即18个月，并比较3种不同社区服务系统的筛查和转诊效果：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;国家黑人教会倡议（National Black Church Initiative，NBCI）利用基于网络的平台，我们将扩大他们的能力，通过公共残疾人教育法（IDEA）C部分系统，为出生至3岁的儿童进行普遍的ASD筛查和转诊诊断，并确定EI提供者的资格。将在多个层面整合创新的网络技术-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，并实施普遍的宽带和自闭症特异性筛查，实现无缝自动化，与电子健康记录链接，并为家庭提供关于自闭症的网络工具。这个多学科的研究团队将进行一项多地点的实用随机临床试验，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，以测试策略，以提高整个C部分系统中以社区为基础的EI提供者对循证干预的吸收。该协议有可能将ASD筛查年龄降低到18个月，这将对早期干预和改善ASD服务系统产生重要影响，并准备在美国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，这可能会加速遗传，神经科学和干预研究，并导致社区医疗服务的变革。

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.