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DS-Connect: A Promising Tool to Improve Lives and Engage Down Syndrome Communities Worldwide

Authors:

Emmanuel K. Peprah ,

Center for Translation Research and Implementation Science, National Heart, Lung, and Blood Institute, National Institutes of Health, Bethesda, MD, US
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Melissa A. Parisi,

Intellectual and Developmental Disabilities Branch, Eunice Shriver Kennedy National Institute for Child Health and Human Development, National Institutes of Health, Bethesda, MD, US
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Lisa Kaeser,

Office of Legislation and Public Policy, Eunice Shriver Kennedy National Institute for Child Health and Human Development, National Institutes of Health, Bethesda, MD, US
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Sujata Bardhan,

Intellectual and Developmental Disabilities Branch, Eunice Shriver Kennedy National Institute for Child Health and Human Development, National Institutes of Health, Bethesda, MD, US
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MaryLou Oster-Granite,

Intellectual and Developmental Disabilities Branch, Eunice Shriver Kennedy National Institute for Child Health and Human Development, National Institutes of Health, Bethesda, MD, US
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Yvonne T. Maddox

National Institute on Minority Health and Health Disparities, National Institutes of Health, Bethesda, MD, US
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Abstract

Down syndrome (DS) is the most common genetic cause of intellectual and developmental disabilities in the United States with an estimated birth prevalence of 1:691 births; however, worldwide estimates of the number of individuals with intellectual and developmental disabilities, including DS, remain speculative. Little is known about the global health impact of DS, such as heart defects, gastrointestinal malformations, and other medical and behavioral issues. Further research is needed to develop the next generation of novel therapies and compounds aimed at improving cognition, reducing dementia, and mitigating other manifestations of DS. To address these challenges, the National Institutes of Health has created the first web-based, voluntary registry and data resource called DS-Connect: The Down Syndrome Registry to collect demographic and health information about individuals with DS.

Highlights

  • Down syndrome is the most common genetic cause of intellectual and developmental disabilities; however, worldwide estimates remain speculative.
  • Little is known about the global health impact of Down syndrome, such as heart defects, gastrointestinal malformations, and other medical and behavioral issues.
  • To address these challenges, the National Institutes of Health has created the first web-based, voluntary registry and data resource called DS-Connect: The Down Syndrome Registry (http://DSConnect.nih.gov).
How to Cite: Peprah EK, Parisi MA, Kaeser L, Bardhan S, Oster-Granite M, Maddox YT. DS-Connect: A Promising Tool to Improve Lives and Engage Down Syndrome Communities Worldwide. Global Heart. 2015;10(4):337–40. DOI: http://doi.org/10.1016/j.gheart.2015.04.001
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Published on 01 Dec 2015.
Peer Reviewed

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