Core D: Dissemination and Outreach Core

核心 D：传播和外展核心

基本信息

批准号：
10698074
负责人：
Jeremy Veenstra-VanderWeele
金额：
$ 16.53万
依托单位：
COLUMBIA UNIVERSITY HEALTH SCIENCES
依托单位国家：
美国
项目类别：
财政年份：
2022
资助国家：
美国
起止时间：
2022-09-06 至 2027-08-31
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10698074
关键词：
Advisory Committees Affect Autism Diagnosis Behavior Therapy Biomedical Research Caregivers Caring Child Clinical Cohort Studies Collaborations Communication Communities Dedications Development Developmental Delay Disorders Diagnosis Discipline Doctor of Philosophy Early Intervention Education Equity Ethics Evaluation Family Fostering Genetic Genetic Risk Genetic Screening Goals Individual Infant Infant Care Knowledge Language Lead Mentorship Monitor Neonatal Neurosciences New York New York City Newsletter Parents Personal Satisfaction Persons Policies Population Heterogeneity Presbyterian Church Publications Race Research Research Personnel Resources Scientist Screening Result Series Services Time Training Translations Underrepresented Minority Universities Update Woman Work autism community autism spectrum disorder autistic career career development clinical practice cohort community engagement developmental disease early childhood evidence base experience family support health care disparity individuals with autism spectrum disorder innovation medical schools meetings minority communities multidisciplinary neurobehavioral outreach peer prospective psychosocial service intervention socioeconomics symposium web site webinar

项目摘要

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

项目摘要传播和外展（D＆O）核心是前瞻性遗传风险的重要组成部分自闭症中心的评估和评估研究（进度）。我们的多学科中心将前瞻性地识别并与一群孩子处于遗传风险（IGR）的家庭中自闭症。父母将在发育延迟的任何临床指示或差异为早期干预创造了机会，但是收到此信息也带有对父母的福祉，尤其是在少数社区中的福祉的道德问题。 D＆O核心将实现进度中心快速传播研究结果的总体目标利益相关者，支持家庭，与加速社区的互动和沟通，并培训新的调查人员通过四个目标：目标1，进步中心的传播结果，必须告知进度中心的结果。科学交流，临床实践，影响社区和下游政策。我们将使用面对面的在线准则和市政厅以及进度中心网站，与真实的信息共享信息个人，家庭，临床医生，教育工作者和科学家。 AIM 2，外展和支持将优化信息和支持进度队列家庭以及其他受自闭症IGR影响的其他人的信息和支持个人和小组家庭导航课程，以帮助父母和婴儿获得早期干预服务。 AIM 3，翻译和交流将优化双向交流和协作自闭症社区利益相关者与进步调查人员之间通过社区咨询董事会建立真实的社区学术伙伴关系，该伙伴关系告知方法以与最能从中受益的社区，以及提供最大化的新策略