DS-Connect: A Promising Tool to Improve Lives and Engage Down Syndrome Communities Worldwide.
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.
Center for Translation Research and Implementation Science, National Heart, Lung, and Blood Institute, National Institutes of Health, Bethesda, MD, USA. Electronic address: peprahek@mail.nih.gov.
Emmanuel K
EK
Peprah
Intellectual and Developmental Disabilities Branch, Eunice Shriver Kennedy National Institute for Child Health and Human Development, National Institutes of Health, Bethesda, MD, USA.
Melissa A
MA
Parisi
Office of Legislation and Public Policy, Eunice Shriver Kennedy National Institute for Child Health and Human Development, National Institutes of Health, Bethesda, MD, USA.
Lisa
L
Kaeser
Intellectual and Developmental Disabilities Branch, Eunice Shriver Kennedy National Institute for Child Health and Human Development, National Institutes of Health, Bethesda, MD, USA.
Sujata
S
Bardhan
Intellectual and Developmental Disabilities Branch, Eunice Shriver Kennedy National Institute for Child Health and Human Development, National Institutes of Health, Bethesda, MD, USA.
MaryLou
M
Oster-Granite
National Institute on Minority Health and Health Disparities, National Institutes of Health, Bethesda, MD, USA.
Yvonne T
YT
Maddox
D000328:Adult; D035843:Biomedical Research; D004314:Down Syndrome / Q000453:epidemiology*; D014943:Global Health; D006801:Humans; D015995:Prevalence; D012042:Registries