DS-Connect: A Promising Tool to Improve Lives and Engage Down Syndrome Communities Worldwide | Global Heart (original) (raw)

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

Innovations and Concepts

• Emmanuel K. Peprah
• Melissa A. Parisi
• Lisa Kaeser
• Sujata Bardhan
• MaryLou Oster-Granite
• Yvonne T. Maddox

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).

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