National Down Syndrome Cytogenetic Register (NDSCR)
Centre for Environmental and Preventive Medicine
Funding Body: Public Health England
Principal 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
Annual Report
NDSCR Annual Report 2013 [PDF 690KB]
NDSCR Annual Report 2012 [PDF 584KB]
NDSCR Annual Report 2011 [PDF 743KB]
NDSCR Annual Report 2010 [PDF 1,003KB]
NDSCR Annual Report 2009 [PDF 300KB]
NDSCR Annual Report 2008/9 [PDF 387KB]
NDSCR Annual Report 2007/8 [PDF 286KB]
NDSCR Annual Report 2006 [PDF 298KB]
NDSCR Annual Report 2005 [PDF 306KB]
NDRSC Supplementary Report 2005 [PDF 27KB]
NDSCR Annual Report 2004 [PDF 263KB]
NDSCR Annual Report 2003 [PDF 232KB]
NDSCR Annual Report 2002 [PDF 111KB]
Staff
- Prof Joan Morris
- Anna Springett
- Haiyan Wu
- Karen Clarke
- Ellen Clancy
Main Contact
Joan Morris
Email: j.k.morris@qmul.ac.uk
Phone: +44 (0) 20 7882 6274