The purpose of this study was to learn whether having congenital heart disease (CHD) and infant heart surgery affects the way children with Down syndrome develop and learn.
Down syndrome (DS) occurs in roughly 1 out of 700 births in the U.S. Half of all children with Down syndrome have CHD, often requiring corrective heart surgery. Even though CHD in children without DS is known to be associated with developmental problems, few studies have explored how CHD can affect the development and behavior of children with DS.
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Fourteen PHN clinical sites in North America participated from 2022-2023, enrolling 259 children aged 5 through 12 years with Trisomy 21, including 124 who underwent complete atrioventricular septal defect (CAVSD) repair at <12 months of age for CHD, and 135 who did not have major CHD.
We conducted neurodevelopmental (ND) tests and questionnaires, including verbal and nonverbal cognitive skills, and language abilities, as well as adaptive, social, and behavioral functioning in school-age children with DS.
Check back soon for a summary of key study findings.