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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

项目摘要传播和推广（D&O）核心是前瞻性遗传风险的重要组成部分评估和评估研究（进展）在自闭症中心。我们的多学科中心将前瞻性地确定并与一组其子女具有已确定的遗传风险（IGR）的家庭合作，自闭症父母将在出现任何发育迟缓的临床指征之前接受遗传筛查结果，差异，这为早期干预创造了机会，但接收这些信息也带来了对父母福祉的道德关切，特别是在少数族裔社区。D&O核心实现进步中心快速传播研究成果的总体目标，利益相关者，支持家庭，与自闭症社区接触和沟通，以及培训新的研究人员通过四个目标：目标1，传播进步中心的结果，必须告知科学交流、临床实践、受影响社区和下游政策。我们将亲自使用，在线研讨会和市政霍尔斯，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，外展和支持，将优化为PROGRESS队列家庭以及其他受自闭症IGR影响的人提供信息和支持，个人和小组家庭导航课程，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PROGRESS调查人员之间通过社区咨询董事会培养一个真正的社区-学术伙伴关系，告知方法，以分享成果，最能从中受益的社区，并提供新的战略，