Surveillance registers for congenital anomalies

Our main delivery partner in this work is the British Isles Network of Congenital Anomaly Registers (BINOCAR), a group of regional and disease-specific registers collecting information about congenital anomalies occurring in the United Kingdom and the Republic of Ireland. HQIP has funded BINOCAR to carry out congenital anomaly surveillance for those areas covered by regional registers for England and Wales.

The aim of BINOCAR is to provide continuous epidemiological monitoring of the frequency, nature and outcomes of congenital anomalies for the population of the British Isles by means of national, regional and disease-specific registers of congenital anomalies.  For more information see the BINOCAR website: www.binocar.org

To download the recently published BINOCAR annual report ‘Congenital Anomaly Statistics 2009' (December 2011) please see below:

• See BINOCAR full report >>
• See the Executive Summary >>

The registers currently funded by HQIP are:

Congenital Anomaly Register, Oxford, Berkshire & Buckinghamshire (CAROBB)

CAROBB provides population based information on congenital anomalies affecting births from 2005 onwards in Oxfordshire, Berkshire and Buckinghamshire.  Congenital anomaly information is also available for Oxford only from 1991.  Data are obtained voluntarily from multiple sources.  Information is collected both pre and postnatally and includes infants up to age one year.

CAROBB is a Full Member of EUROCAT and is referred to as Thames Valley (UK) in the EUROCAT data.

Down's Syndrome Register (NDSCR)

The NDSCR was established in 1989 and 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 (1) monitor the Down syndrome antenatal screening and diagnostic services (2) provide data on annual numbers of affected births to help those planning for their health, educational and social care and (3) provide information for research into Down, Edwards and Patau syndromes.

Please see below for a copy of the newly published NDSCR Annual Report 2010 (December 2011):

• NDSCR full report >>

Northern Congenital Anomalies Register (NorCAR)

NorCAS collects information on all congenital anomalies diagnosed antenatally or postnatally to mothers resident in North East of England and North Cumbria using multiple sources.  Information on all cases diagnosed up to age 12 are included.

NorCAS has been collecting data since 1 January 1985 following a pilot year.  NorCAS undertakes regular cross validation with the regional cytogenetic laboratory and paediatric cardiology databases.

NorCAS is a Full Member of EUROCAT and is referred to as Northern England (UK) in the EUROCAT data.

Funding for the surveillance of congenital anomalies

An advisory group, chaired by Dr John Newton of South Central SHA on behalf of the Department of Health, is responsible for the allocation of this funding.