TY - JOUR
T1 - DS-Connect
T2 - A Promising Tool to Improve Lives and Engage Down Syndrome Communities Worldwide
AU - Peprah, Emmanuel K.
AU - Parisi, Melissa A.
AU - Kaeser, Lisa
AU - Bardhan, Sujata
AU - Oster-Granite, Mary Lou
AU - Maddox, Yvonne T.
N1 - Publisher Copyright:
© 2015
PY - 2015/12/1
Y1 - 2015/12/1
N2 - 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.
AB - 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.
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U2 - 10.1016/j.gheart.2015.04.001
DO - 10.1016/j.gheart.2015.04.001
M3 - Article
C2 - 26271554
AN - SCOPUS:84939512457
SN - 2211-8160
VL - 10
SP - 337
EP - 340
JO - CVD Prevention and Control
JF - CVD Prevention and Control
IS - 4
ER -