Document Type

Article

Publication Date

2021

Identifier

DOI: 10.3233/trd-200090; PMCID: PMC8279178

Abstract

BACKGROUND: Recent advances in medical care have increased life expectancy and improved the quality of life for people with Down syndrome (DS). These advances are the result of both pre-clinical and clinical research but much about DS is still poorly understood. In 2020, the NIH announced their plan to update their DS research plan and requested input from the scientific and advocacy community.

OBJECTIVE: The National Down Syndrome Society (NDSS) and the LuMind IDSC Foundation worked together with scientific and medical experts to develop recommendations for the NIH research plan.

METHODS: NDSS and LuMind IDSC assembled over 50 experts across multiple disciplines and organized them in eleven working groups focused on specific issues for people with DS.

RESULTS: This review article summarizes the research gaps and recommendations that have the potential to improve the health and quality of life for people with DS within the next decade.

CONCLUSIONS: This review highlights many of the scientific gaps that exist in DS research. Based on these gaps, a multidisciplinary group of DS experts has made recommendations to advance DS research. This paper may also aid policymakers and the DS community to build a comprehensive national DS research strategy.

Journal Title

Transl Sci Rare Dis

Volume

5

Issue

3-4

First Page

99

Last Page

129

Keywords

Alzheimer’s disease; Down syndrome; autism spectrum disorder; autoimmune disease; cognitive development; congenital heart disease; intellectual disability; leukemia; muscle hypotonia; obesity; obstructive sleep apnea; periodontitis

Comments

This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial License (CC BY-NC 4.0).

Publisher's Link: https://content.iospress.com/articles/translational-science-of-rare-diseases/trd200090

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