Down syndrome births and population trends

This project is a unique collaboration with colleagues and partners around the world that aims to monitor population trends around the world.

Estimating the numbers of people with Down syndrome living today and understanding trends in births and populations is important for planning healthcare, education and other services for people with Down syndrome. Working with partners in The Netherlands and the USA, and with colleagues around the world, this project has estimated current populations and birth trends in the USA, Australia, New Zealand and throughout Europe.

The project continues to update estimates, monitor trends and explore factors influencing populations of people with Down syndrome around the world.

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

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
• 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