Beginning in 1985, regional Congenital Anomaly Registers (CARs) were successively established in different regions across England and nationally in Wales. All had two main purposes: first, population surveillance of congenital anomalies and second, a platform for research into the causes, consequences and management of congenital anomalies including evaluation of the newly emerging field of prenatal screening and diagnosis. The National Down Syndrome Cytogenetic Register (NDSCR), covering both England and Wales, was established in 1989 and has been used to evaluate many aspects of Down Syndrome and other common chromosomal disorders, but in particular the efficacy and impact of prenatal population screening for chromosomal disorders.
The British Isles Network of Congenital Anomaly Registers (BINOCAR) was constituted as a self-governing collaboration in the late 1990s to bring together the register leads, the register staff and others with a clinical or research interest in congenital anomalies and congenital anomaly registers. Over the next 15 years BINOCAR established a management group which enabled the registers to create a common data model and coding systems; standardise data processing; apply collectively for research ethics and CAG approval; develop end-user information materials and work with 3rd sector patient/parents representative organisations. More importantly, BINOCAR enabled collaborative research through the pooling of data, thereby maximising the number of cases of individual anomalies in any single study and in turn increasing its statistical power; this was particularly vital given the relative rarity of individual and groups of anomalies. From 2010 to 2015, BINOCAR was the only source of population-based congenital anomaly data for England and Wales.
In 2010 the Department of Health funded BINOCAR to establish a hub at the Wolfson Institute of Preventive Medicine, to enable pooling of de-identified regional data and for BINOCAR to continue the national anomaly surveillance function previously carried out by NCAS (ONS). In 2012 the newly established Public Health England (PHE) made a commitment to establish a truly national congenital anomaly surveillance function for England, and began working towards establishing a new national registration system called ‘The National Congenital Anomaly and Rare Disease Registration Service’ (NCARDRS). On 31 March 2015 PHE finally transferred the existing regional registers' data and staff into NCARDRS and the data collection function of the regional congenital anomalies registers ceased.
Since the BINOCAR register leads were no longer responsible for congenital anomaly registration and surveillance, the management group decided that from 1st April 2015 BINOCAR will continue with a solely research role and as a research collaboration; the acronym BINOCAR was re-adopted as ‘British and Irish Network of Congenital Anomaly Researchers’ to reflect this change of purpose.
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