Key Findings: Prevalence of Down syndrome in the United States

In a new study using information from birth and death records, researchers estimated the number of people living with Down syndrome in the United States. The findings suggest that about 250,000 people were living with Down syndrome in January 2008. This information will help with planning for policies and services for people with Down syndrome. You can read the abstract of the article here. Read more below for a summary of findings from this article.

Main Findings from this Study

• The life expectancy of people with Down syndrome increased dramatically (by 456%) between 1960 and 2007.
• An estimated 250,700 people were living with Down syndrome in the United States in 2008.
• The prevalence of Down syndrome was about 8 people with Down syndrome per 10,000 people in the United States.
• The estimate of 250,000 is lower than previously reported estimates for the number of people living with Down syndrome in the United States that were based only on birth prevalence. This improved estimate will help appropriately plan for policies and services for people with Down syndrome.

About this Study

Previous studies have estimated the prevalence of Down syndrome in the United States using only information about the prevalence at birth. Although the life expectancy for persons with Down syndrome has increased dramatically since 1960, people with Down syndrome still have a shorter life expectancy than the general US population. So, it is important to take both birth and death information into account to get a reliable estimate. In this study, researchers included information about prevalence of Down syndrome at birth and the rate of death among people with Down syndrome over time. Researchers used this information to estimate the prevalence of people living with Down syndrome in the United States on January 1, 2008. Researchers estimated that about 250,000 people were living with Down syndrome in the United States at that time, but because this was an estimate and not obtained by counting up everyone with Down syndrome, the actual number could be between about 186,000 and 321,000.

Down syndrome: CDC activities

The National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention (CDC) is learning more about Down syndrome by tracking the occurrence and conducting research.

• Surveillance or disease tracking: Tracking the occurrence of Down syndrome gives us important clues for opportunities to improve health outcomes and helps plan for the needs of families.
• Research: To understand how Down syndrome impacts affected children and their families, CDC and its partners conduct studies on health services use, survival, and racial/ethnic disparities.

CDC and its partners continue to look at these issues to improve the lives of children and families affected by Down syndrome.

More Information

For more information about Down syndrome or to read about families affected by Down syndrome, visit the following webpages:

• Down Syndrome Stories on CDC’s Flickr album
  • Mark’s story
  • Fenix’s story
  • Keaton’s story
  • Caleb’s story
• National Down Syndrome Society
• National Down Syndrome Congress
• Down Syndrome International
• Global Down Syndrome Foundation
• Medline
• Mayo Clinic

Linking to a non-federal site does not constitute an endorsement by CDC, Health and Human Services (HHS), or any of its employees.

References

Presson AP, Partyka G, Jensen KM, Devine OJ, Rasmussen SA, McCabe LL, McCabe ERB. Current estimate of Down syndrome population prevalence in the United States. J Pediatr. 2013. [epub ahead of print].