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National Down Syndrome Cytogenetic Register
The National Down Syndrome Cytogenetic Register (NDSCR) was set up on 1st January 1989, and holds anonymous data from all clinical cytogenetic laboratories in England and Wales of cases of Down, Patau and Edwards syndromes diagnosed antenatally or postnatally. 

Aims of the NDSCR

The NDSCR data can be used to:

  • monitor the Down syndrome prenatal screening and diagnostic services, and the impact they have on the diagnosis of Patau and Edwards syndromes;
  • provide data on annual numbers of affected births to help those planning for their health education and social care;
  • provide information for research into Down, Patau and Edwards syndromes.

Summary

All clinical cytogenetic laboratories in England and Wales are asked to submit to the register a completed form for each diagnosis of Down, Patau and Edwards syndromes and their variants.  The form contains details of the date and place of and indications for referral, maternal age and family history.  Most laboratories send a copy of the form to the referring physician for confirmation and completion. 

The data are compared with those from other regional congenital anomaly registers.  These comparisons have shown that since its inception the register has captured data for an estimated 93% of all diagnosed births and pregnancy terminations to residents of England and Wales.

In 2010 there were 1,868 diagnoses of Down syndrome, 64% of which were made prenatally.  There were an estimated 715 Down syndrome live births giving a live birth prevalence of 1.0 per 1,000 live births.

In 2010 there were 213 diagnoses of Patau syndrome and 514 diagnoses of Edwards syndrome, of which an estimated 21 and 56 respectively were live births.

The percentage of prenatal diagnoses with missing outcome is 8% over all years, with only 2009 and 2010 above 10%.

The type of screening that a woman received in 2010 was associated with her age.  Older women were more likely to have received a prenatal diagnosis due to a first trimester screening test, were more likely to have a CVS compared to an amniocentesis and consequently received their diagnosis at younger gestational ages.

Amongst women receiving prenatal diagnoses a greater proportion had 1st trimester screening in 2010 compared to 2009.

There were regional differences in the type of screening that women received in 2010.

 
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NDSCR logo: links to NDSCR home page
Updates
BINOCAR Annual Report 2010 (BINOCAR site)
J. Morris and E. Alberman, Trends in Down's syndrome live births and antenatal diagnoses in England and Wales from 1989 to 2008: analysis of data from the National Down Syndrome Cytogenetic Register, British Medical Journal, 2009:339;b3794, doi:10.1136/bmj.b3794
by Wolfson Institute Website Manager © Queen Mary, University of London 2013
Centre for Environmental and Preventive Medicine, Wolfson Institute of Preventive Medicine, Barts and The London, Charterhouse Square, London EC1M 6BQ Tel: 020 7882 3850 Fax: 020 7882 6270