Core D: Dissemination and Outreach Core

项目总结 传播和延伸(D&O)核心是预期遗传风险的重要组成部分 自闭症中心的评估和评估研究(进展)。我们的多学科中心将 前瞻性地确定并与其子女具有确定的遗传风险(IGR)的一组家庭合作 自闭症。父母将在任何发育迟缓或临床症状出现之前收到基因筛查结果 差异，这为早期干预创造了机会，然而，收到这一信息也意味着 对父母福祉的伦理关注，特别是在小规模社区。D&O核心将 完成进步中心的首要目标，即迅速将研究成果传播到 利益相关者，支持家庭，与自闭症社区接触和沟通，以及培训新的 调查人员通过四个目标：目标1，传播进展中心的成果，必须告知 科学交流、临床实践、受影响的社区和下游政策。我们将使用面对面和 在线研讨会和市政厅，以及进步中心网站，与自闭症患者分享信息 个人、家庭、临床医生、教育工作者和科学家。目标2，外联和支持，将进行优化 为队列家庭以及受IGR影响的其他自闭症患者提供的信息和支持 个人和团体家庭导航会议，帮助父母和婴儿获得早期干预 服务。目标3，翻译和交流，将优化双向沟通和协作 自闭症社区利益相关者和进展调查人员之间通过社区咨询 委员会将培养真正的社区-学术合作伙伴关系，为分享成果的方法提供信息 将从它们中受益最大的社区，以及提供新的战略，以最大限度地

PROJECT SUMMARY The Dissemination and Outreach (D&O) Core is an essential component of the Prospective Genetic Risk Evaluation and Assessment Study (PROGRESS) in Autism Center. Our multidisciplinary Center will prospectively identify and partner with a cohort of families whose children are at identified genetic risk (IGR) for autism. Parents will receive genetic screening results prior to any clinical indication of developmental delays or differences, which creates opportunities for early interventions, however receiving this information also carries ethical concerns for the well-being of the parents, especially in minoritized communities. The D&O Core will accomplish the PROGRESS Center’s overarching goals of rapidly disseminating research findings to stakeholders, supporting families, engaging and communicating with the autistic community, and training new investigators, through four aims: Aim 1, Dissemination of PROGRESS Center Results, is imperative to inform scientific exchange, clinical practice, affected communities, and downstream policy. We will use in-person and online seminars and town halls, as well as the PROGRESS Center website, to share information with autistic individuals, families, clinicians, educators, and scientists. Aim 2, Outreach and Support, will optimize information and support for PROGRESS Cohort families as well as others impacted by IGR of autism through individual and group family navigation sessions to help parents and infants gain access to early intervention services. Aim 3, Translation and Exchange, will optimize bidirectional communication and collaboration between the autism community stakeholders and PROGRESS investigators through a Community Advisory Board to cultivate an authentic community-academic partnership that informs approaches to share results with the communities that would most benefit from them, as well as provides new strategies to maximize the