Outreach and Engagement Efforts in Research on Down Syndrome: An NIH INCLUDE Working Group Consensus Statement.

4区医学 Q3 Medicine International Review of Research in Developmental Disabilities Pub Date : 2022-01-01 Epub Date: 2022-10-22 DOI:10.1016/bs.irrdd.2022.09.006

Deborah J Fidler, Nathaniel Riggs, Anna J Esbensen, Colleen Jackson-Cook, Tracie Rosser, Annie Cohen

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引用次数: 1

Abstract

The National Institutes of Health formulated the Outreach and Engagement Working Group in Fall of 2019 to support the objectives of the INCLUDE Project (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE). This Working Group consisted of a multi-disciplinary team of stakeholders in research on Down syndrome that met to discuss best practices for outreach and engagement to Down syndrome communities, with an emphasis on representation and diversity. This review and consensus paper describes the importance of increasing representation in DS research for future cohort building and summarizes the priority issues identified by the Working Group members. An overview of Working Group activities is then presented, followed by consensus recommendations and a discussion of future opportunities and challenges.

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唐氏综合症研究的外联和参与工作：美国国立卫生研究院工作组共识声明。

美国国立卫生研究院于2019年秋季成立了外联和参与工作组，以支持INCLUDE项目的目标（调查整个生命周期内的并发疾病以了解唐氏综合症）。该工作组由唐氏综合症研究的多学科利益相关者团队组成，他们开会讨论向唐氏综合症社区宣传和参与的最佳做法，重点是代表性和多样性。这篇综述和共识文件描述了增加DS研究代表性对未来队列建设的重要性，并总结了工作组成员确定的优先问题。然后概述了工作组的活动，随后提出了协商一致的建议，并讨论了未来的机遇和挑战。

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International Review of Research in Developmental Disabilities Multiple-

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