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We aimed to study the use of global health measures for DS in a national cohort. We prospectively surveyed parents of individuals with DS from the DS\u2010Connect\u00ae registry with validated Patient Reported Outcomes Measurement Information System (PROMIS)\u00ae instruments of global health. Analyses included use of scoring manuals and the PROMIS\u00ae scoring service, descriptive statistics, and <jats:italic>t<\/jats:italic>\u2010tests. 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