Down syndrome births and population trends

This project estimates how many people with Down syndrome live in different countries and how birth rates and populations change over time.

These estimates help organisations plan healthcare, education and other services. DSE works with partners in the Netherlands and the USA, and with colleagues elsewhere. The project has produced estimates for the USA, Australia, New Zealand, Canada and Europe.

The team updates estimates, monitors trends and explores factors that affect populations of people with Down syndrome.

Project team

• Gert de Graaf, Dutch Down Syndrome Foundation, Meppel, The Netherlands
• Brian Skotko, Department of Pediatrics, Harvard Medical School, Boston, MA, USA
• Frank Buckley, Down Syndrome Education International

Partners

• Down Syndrome Australia
• European Down Syndrome Association
• Canadian Down Syndrome Society

Publications

• Factsheet: People living with Down syndrome in the USA
• Factsheet: People living with Down syndrome in Europe
• Factsheet: People living with Down syndrome in Australia
• Factsheet: People living with Down syndrome in New Zealand
• Factsheet: People living with Down syndrome in Canada
• de Graaf G., Buckley F., Skotko B. G. (2015). Estimates of the live births, natural losses, and elective terminations with Down syndrome in the United States. American Journal of Medical Genetics Part A, 167A, 756-76. doi:10.1002/ajmg.a.37001
• de Graaf G., Buckley F., Skotko B. G. (2017). Estimation of the number of people with Down syndrome in the United States. Genetics in Medicine, 19, 439-447. doi:10.1038/gim.2016.127
• de Graaf G., Buckley F., Dever J., Skotko B. G. (2017). Estimation of live birth and population prevalence of Down syndrome in nine U.S. states. American Journal of Medical Genetics Part A, 173(10), 2710-2719. doi:10.1002/ajmg.a.38402
• de Graaf, G., Buckley, F. & Skotko, B.G. (2020). Estimation of the number of people with Down syndrome in Europe. European Journal of Human Genetics. doi:10.1038/s41431-020-00748-y
• de Graaf G., Skladzien E., Buckley F., Skotko B. G. (2022). Estimation of the number of people with Down syndrome in Australia and New Zealand. Genetics in Medicine, 24(12), 2568-2577. doi:10.1016/j.gim.2022.08.029
• de Graaf G., LaChance L., Buckley F., Skotko B. G. (2025). Estimation of the number of people with Down syndrome living in Canada. Genetics in Medicine, 27(7). doi:10.1016/j.gim.2025.101422