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

• Type of Material: Article
• Authors: Deborah J. Fidler, Colorado State University, Fort Collins; Nathaniel Riggs, Colorado State University, Fort Collins; Anna J. Esbensen, Cincinnati Children's Hospital Medical Campus; Colleen Jackson-Cook, Virginia Commonwealth University; Tracie Rosser, Emory University; Annie Cohen, University of Pittsburgh
• Language: English
• Date: 2022-10-22
• Publisher: Elsevier
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: © 2022 Elsevier Inc. All rights reserved.
• License: Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International
• Final Published Version (URL): https://doi.org/10.1016/bs.irrdd.2022.09.006
• Title of Journal or Parent Work: International Review of Research in Developmental Disabilities
• Volume: 63
• Start Page: 247
• End Page: 267
• Grant/Funding Information: Research reported in this article was supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development of the National Institutes of Health under award numbers R01HD099150-0, 1 R21 HD101000-01, and R01 HD093754.
• Keywords: Outreach and Engagement Working Group; INCLUDE Project; Down syndrome
• Research Categories: Biology, Genetics; Health Sciences, Public Health

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.