DS-Connect

A Promising Tool to Improve Lives and Engage Down Syndrome Communities Worldwide

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

Research output: Contribution to journalArticle

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

Fingerprint

Down Syndrome
Developmental Disabilities
Intellectual Disability
Registries
Parturition
National Institutes of Health (U.S.)
Cognition
Dementia
Demography
Health
Research

ASJC Scopus subject areas

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

Cite this

Peprah, E., Parisi, M. A., Kaeser, L., Bardhan, S., Oster-Granite, M. L., & Maddox, Y. T. (2015). DS-Connect: A Promising Tool to Improve Lives and Engage Down Syndrome Communities Worldwide. Global Heart, 10(4), 337-340. https://doi.org/10.1016/j.gheart.2015.04.001

DS-Connect : A Promising Tool to Improve Lives and Engage Down Syndrome Communities Worldwide. / Peprah, Emmanuel; Parisi, Melissa A.; Kaeser, Lisa; Bardhan, Sujata; Oster-Granite, Mary Lou; Maddox, Yvonne T.

In: Global Heart, Vol. 10, No. 4, 01.12.2015, p. 337-340.

Research output: Contribution to journalArticle

Peprah, E, Parisi, MA, Kaeser, L, Bardhan, S, Oster-Granite, ML & Maddox, YT 2015, 'DS-Connect: A Promising Tool to Improve Lives and Engage Down Syndrome Communities Worldwide', Global Heart, vol. 10, no. 4, pp. 337-340. https://doi.org/10.1016/j.gheart.2015.04.001
Peprah, Emmanuel ; Parisi, Melissa A. ; Kaeser, Lisa ; Bardhan, Sujata ; Oster-Granite, Mary Lou ; Maddox, Yvonne T. / DS-Connect : A Promising Tool to Improve Lives and Engage Down Syndrome Communities Worldwide. In: Global Heart. 2015 ; Vol. 10, No. 4. pp. 337-340.
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