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 currently provides data to the BINOCAR Hub for use in the annual surveillance reports. A register is an Associate Member of BINOCAR if it will soon be providing data to the BINOCAR Hub. A register is an Affiliate Member of BINOCAR is it does not currently provide data to the BINOCAR Hub.
Disease-specific registers have been developed nationally for Down (T21), Edward (T18) and Patau (T13) syndromes (NDSCR) and Cleft Lip & Palate anomalies (CRANE).
These registers have optimised the coverage, completeness and ascertainment of all (or their specified) congenital anomalies for their population.
Between 1964 and 2009 a National Congenital Anomaly System (NCAS) was run by the Office for National Statistics (ONS) and monitored the numbers of congenital anomalies reported by health authorities in England and Wales. As a result of improved data collection by regional registers, NCAS was encouraged to develop links with regional registers as the best method for improving national data collection quality and quantity. Since the beginning of 2010, BINOCAR is the only source of population-based congenital anomaly data for England and Wales. 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
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 | 30,000 | 700 |
| Cork and Kerry Congenital Anomaly Register |
Cork & Kerry |
Population based |
Yes | 1996 | 9,500 | 260 |
| Craniofacial Anomalies Network | CRANE |
Disease specific |
No | 1990 | 720,000 | 1,000 |
| Dublin EUROCAT Registry | Dublin |
Population based |
Yes | 1979 | 23,000 | 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 | 6,100 | 200 |
| National Down Syndrome Cytogenetic Register | NDSCR |
Disease specific |
Affiliate | 1989 | 690,000 | 2,500 |
| Northern Congenital Abnormality Survey | NorCAS |
Population based |
Yes | 1985 | 33,000 | 800 |
| South West Congenital Anomaly Register | SWCAR |
Population based |
Yes | 2002 | 50,000 | 1,500 |
| Wessex Antenatally Detected Anomalies Register | WANDA |
Population based |
Yes | 1994 | 31,000 | 600 |
| 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 |
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