Estimation of live birth and population prevalence of Down syndrome in nine U.S. states

Abstract

For all of the U.S. states with sufficient data, we estimated live birth and population prevalences for Down syndrome (DS). As social service resources vary between states, such data are important for public policy discussions and state planning. We predicted the actual and nonselective live birth prevalence, and population prevalence, for DS in nine U.S. states based on publicly available datasets from the Centers for Disease Control and Prevention and the Integrated Public Use Microdata Series. As of 2010, we estimated a population size for people with DS of 4,554 in MA (population prevalence 1 in 1,440), 6,101 in NJ (1 in 1,443), 14,315 in NY (1 in 1,355), 9,739 in IL (1 in 1,319), 4,354 in IN (1 in 1,491), 7,295 in MI (1 in 1,354), 9,099 in FL (1 in 2,071), 3,014 in KY (1 in 1,442), and 3,596 in AZ (1 in 1,784). The number of people living with DS has steadily increased from 1950 until 2010 in these nine U.S. states. Population prevalence would have been higher absent DS-related elective terminations. Racial and ethnic groups, other than non-Hispanic whites, comprise a growing proportion within these DS communities, particularly among younger-aged persons.

Keywords: Down syndrome; epidemiology; health policy; population health; prevalence; trisomy 21.