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 (NDSRC)

  • Approximate number of people living in England and Wales with Down syndrome 37,090
  • Prevalence 0.66/1000
  • Live birth rate in the UK  2012  1.1/1000.
  • estimated 775 Babies born with Down syndrome in England and Wales in 2012
  • Risk of Down syndrome increases with maternal age
  • Overall prevalence including all prenatal and postnatal diagnoses has risen since 1989 , likely to be due to both increasing maternal age , and early diagnosis of pregnancies that may be non viable
  • Live birth rate has not increased since 1989
  • 90% of affected pregnancies diagnosed antenatally are terminated

Life expectancy

  • Mean life expectancy in developed countries is now 60 years
  • Dramatic increase from mean  life expectancy of 12 years in 1940’s
  • Morbidity and mortality remains higher than for the general population and for those with other intellectual disability at all ages

 

Presentations at DSMIG Meetings


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Additional Resources

Wu J, Morris JK. The population prevalence of Down’s syndrome in England and Wales in 2011. European Journal of Human Genetics. 2013;21(9):1016-9.

Morris JK, Springett A. The National Down Syndrome Cytogenetic Register for England and Wales: 2012 Annual Report. National Down Syndrome Cytogenic Register: Queen Mary University of London 2014

Loane M, Morris JK, Addor M-C, Arriola L, Budd J, Doray B, et al. Twenty-year trends in the prevalence of Down syndrome and other trisomies in Europe: impact of maternal age and prenatal screening. European Journal of Human Genetics. 2013;21(1):27-33.

Bittles AH, Bower C, Hussain R, Glasson EJ. The four ages of Down syndrome. The European Journal of Public Health. 2007;17(2):221-5.