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National Down Syndrome Cytogenetic Register (NDSCR)

Centre for Environmental and Preventive Medicine

Funding Body: Public Health England
Project Investigator: Joan Morris

Overview

National Down Syndrome Cytogenetic Register (NDSCR)

The NDSCR holds anonymous data on over 32,000 cases of Down’s syndrome diagnosed antenataly or postnataly since January 1989 in England and Wales. Information on Patau syndrome and Edwards syndrome has been collected since 2004

Aims of the NDSCR

The NDSCR collects all cytogenetic or DNA reports of trisomies 21, 18 and 13 and their cytogenetic variants occurring in England and Wales. These data are used to:

  • monitor the Down syndrome prenatal screening and diagnostic services, and the impact they have on the diagnosis of trisomies 18 (Edwards syndrome) and 13 (Patau syndrome);
  • 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, Edwards and Patau syndromes

How the NDSCR works

All cytogenetic laboratories in England and Wales collaborate with the NDSCR and provide notification forms for all prenatal and postnatal diagnoses of Down, Edwards and Patau syndromes. No direct contact is ever made with the women by the NDSCR. The forms contain details of the chromosome analysis and some information on the mother and child

How the data are used

  • The NDSCR is the only national source of the numbers of births, miscarriages and terminations of Down, Patau and Edwards syndrome cases in England and Wales. These are reported annually and you can find all reports under the Annual Report Tab.
  • Research using this data is regularly published in peer reviewed medical journals
  • Data is also provided to researchers in Europe and is presented on the EUROCAT website


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