Births and populations of people with Down syndrome

Over the past few years, I have been privileged to work with colleagues Gert de Graaf and Brian Skotko looking at the data on births and trends in populations of people with Down syndrome.

We have now published three papers together. The first looked at the births of babies with Down syndrome in the USA from 1900 to 2010. The second reported a similar analysis for the state of Massachusetts. The third, recently published online ahead of publication in Genetics in Medicine, estimated the population of people living with Down syndrome in the USA from 1950 to 2010. This work builds on the previous work of Gert and colleagues developing a model for estimating the population prevalence of Down syndrome.

We have produced a freely downloadable factsheet with some of the key figures from our papers.

Our findings include:

  • The live birth prevalence of Down syndrome in the US in most recent years (2006–2010) was 12.6 per 10,000, with around 5,300 births annually
  • During this period, an estimated 3,100 Down syndrome related elective pregnancy terminations were performed in the US each year
  • As of 2007, the estimated rate at which live births with Down syndrome were reduced in the US as a consequence of Down syndrome related elective pregnancy terminations was 30%
  • The number of people with Down syndrome living in the US grew from 49,923 in 1950 to 206,366 in 2010
  • The population of people with Down syndrome living in the US includes 138,019 non-Hispanic whites, 27,141 non-Hispanic blacks, 32,933 Hispanics, 6,747 Asians/Pacific Islanders, and 1,527 American Indians/American Natives
  • The population prevalence of Down syndrome in the US, as of 2010, was 6.7 per 10,000 inhabitants (or 1 in 1,499)
figure-births-down-syndrome-usa-1900-2010
Live births of babies with Down syndrome in the USA, 1900-2010
figure-population-down-syndrome-usa-1950-2010-ages
The population of people living with Down syndrome in the USA, 1950-2010
figure-population-down-syndrome-usa-2010-immigration-terminations
The population of people living with Down syndrome in the USA, 2010, and the effects of immigration and selective terminations of pregnancies

We are hopeful this work will provide a baseline from which we can track the impact of new screening technologies and changing social attitudes on future populations of people with Down syndrome.

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