Demography

Overview

Down syndrome is one of the most commonly diagnosed chromosomal disorders in the UK.

Prevalence

Data has been collected since 1989 by the National Down Syndrome Cytogenetic register (NDSCR) and is also collected by the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS).

  • Approximate number of people living in England and Wales with Down syndrome is 41,700.
  • Prevalence in 2018 in the UK was 25/10000. This is much lower than in 2017 (28.3/10000), likely due to a change in the inclusion criteria, rather than an actual change in prevalence.
  • Live birth rate in the UK in 2018 was 11.6/10000.
  • Estimated number of babies born with Down syndrome in England and Wales in 2018 was approximately 762.
  • Risk of Down syndrome increases with maternal age.
  • Overall prevalence including all prenatal and postnatal diagnoses has risen since 1989, likely due to both increasing maternal age, and early diagnosis of pregnancies that may be non-viable.
  • Live birth rate has remained largely stable since 2005
  • 85.2% of affected pregnancies diagnosed antenatally were terminated in 2018.

Life expectancy

  • Median life expectancy in the UK for people with Down syndrome is 58 years.
  • Dramatic increase from mean life expectancy of 12 years in 1940’s.
  • Morbidity and mortality remain higher than for the general population and for those with other intellectual disability at all ages. People with Down syndrome are more susceptible to respiratory and gastrointestinal infections as well as heart problems.

Presentations at DSMIG Meetings


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Additional Resources

Public Health England, NCARDRS statistics 2017: summary report (updated 12 August 2020). https://www.gov.uk/government/publications/ncardrs-congenital-anomaly-annual-data/ncardrs-statistics-2017-summary-report#downs-syndrome-edwards-syndrome-and-pataus-syndrome-2017

Public Health England, NCARDRS statistics 2018: summary report (updated 12 August 2020). https://www.gov.uk/government/publications/ncardrs-congenital-anomaly-annual-data/ncardrs-statistics-2018-summary-report

Down’s Syndrome Scotland, Facts about Down’s syndrome (2018). http://www.dsscotland.org.uk/wordpress/wp-content/uploads/2018/01/Revised-10-facts-about-DS.pdf

Malt EA, Dahl RC, Haugsand TM, et al. Health and disease in adults with Down syndrome. Tidsskr Nor Laegeforen. 2013;133(3):290-294. doi:10.4045/tidsskr.12.0390 https://pubmed.ncbi.nlm.nih.gov/23381164/

Office for National Statistics, Births in England and Wales: 2018 (01 August 2019). https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/livebirths/bulletins/birthsummarytablesenglandandwales/2018

Last updated 6th September 2020 Monica Lakhanpaul, Professor of Integrated Community Child Health