BINOCAR Registers
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British and Irish Network of
Congenital Anomaly Researchers

Registers

BINOCAR Map

Glasgow NorCAS YHCAR EMSYCAR WMCAR CARIS CAROBB WANDA SWCAR Dublin HSE-SE Cork & Kerry

BINOCAR includes local, regional, national and disease-specific registers covering England, Wales, Scotland and Ireland.

 

Background

 

The first regional register to be established was in the Northern region (NorCAS) in 1985. Since then regional registers have been established for West Midlands (WMCAR), Wessex (WANDA), East Midlands & South Yorkshire (EMSYCAR), Oxfordshire, Berkshire & Buckinghamshire (CAROBB), Wales (CARIS), South West region (SWCAR) and Yorkshire & Humber region (YHCAR).

 

A register is a Full Member of BINOCAR if it provided data to the BINOCAR Hub for use in the annual surveillance reports and if such data is available for research purposes subject to correct permissions being obtained.  A register is an Associate or Affiliate Member of BINOCAR if it did not provide data to the BINOCAR Hub.

  

Disease-specific registers have been developed nationally for Down (T21), Edwards (T18) and Patau (T13) syndromes (NDSCR) and Cleft Lip & Palate anomalies (CRANE).

 

Since 2010, BINOCAR was the only source of population-based congenital anomaly data for England and Wales.

 

During 2013-14 Public Health England (PHE) worked to establish a new national congenital anomaly system called ‘The National Congenital Anomaly and Rare Disease Registration Service’ (NCARDRS). At the end of March 2015 PHE transferred the existing regional register data and staff into the disease registration service at PHE and the data collection function in the regional congenital anomalies registers ceased. The intention of PHE is to establish prospective data collection via the new NCARDRS system from the 1st April 2015.

 

In the Republic of Ireland there are three regional congenital anomaly registers: Cork & Kerry, South Eastern (HSE-SE) and Dublin.

 

Proportion of births covered by regional registers in 2012

 

Country percentage

England 49
Ireland 52
Scotland 24
Wales 100

See the Data section for more information.

 

Summary of BINOCAR registers

 

Register Name Short Name Type

EUROCAT

Member

Year

Established

Annual

Births

Annual

Notifications

Congenital Anomaly Register and Information Service for Wales CARIS

Population

based

Yes 1998 35,000 1,200
Congenital Anomaly Register for Oxfordshire, Berkshire & Buckinghamshire CAROBB

Population

based

Yes 1991 31,000 750
Cork and Kerry Congenital Anomaly Register

Cork &

Kerry

Population

based

Yes 1996 10,000 300
Craniofacial Anomalies Network CRANE

Disease

specific

No 2000 750,000 1,150
Dublin EUROCAT Registry Dublin

Population

based

Yes 1979 27,000 500
East Midlands and South Yorkshire Congenital Anomalies Register EMSYCAR

Population

based

Yes 1997 74,000 1,400
Glasgow Register of Congenital Anomalies Glasgow

Population

based

Past 1972 10,000 300
Health Services Executive South East Ireland HSE-SE

Population

based

Yes 1997 8,000 200
National Down Syndrome Cytogenetic Register NDSCR

Disease

specific

Affiliate 1989 710,000 2,500
Northern Congenital Abnormality Survey NorCAS

Population

based

Yes 1985 33,000 800
South West Congenital Anomaly Register SWCAR

Population

based

Yes 2002 60,000 1,500
Wessex Antenatally Detected Anomalies Register WANDA

Population

based

Yes 1994 31,000 750
West Midlands Congenital Anomaly Register WMCAR

Population

based

No 1995 72,500 2,300
Yorkshire and the Humber Congenital Anomalies Register YHCAR

Population

based

No 2011 45,000