Core D: Dissemination and Outreach Core

点击翻译按钮获取中文摘要

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