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Congenital Anomaly Researchers

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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

© BINOCAR, 2011