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

Emmanuel K. Peprah, Melissa A. Parisi, Lisa Kaeser, Sujata Bardhan, Mary Lou Oster-Granite, Yvonne T. Maddox

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish (US)
Pages (from-to)337-340
Number of pages4
JournalGlobal Heart
Volume10
Issue number4
DOIs
StatePublished - Dec 1 2015

ASJC Scopus subject areas

  • Epidemiology
  • Community and Home Care
  • Cardiology and Cardiovascular Medicine

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