BINOCAR Registers
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British and Irish Network of
Congenital Anomaly Researchers

BINOCARD

British and Irish Network of Congenital Anomaly Research Database

 

BINOCARD is currently in the process of being created and the description here is for future reference.

 

If you are the parent of a child who had been registered before 1 April 2015 by a congenital anomaly registry in England, please click here for more information.

 

BINOCARD is a linked de-identified research database for congenital anomaly outcomes which had been created through a one-time linkage of historical registry data to hospital episodes, mortality and educational attainment databases, provided by NHS Digital, ONS and Department for Education respectively.

 

When the surveillance function of the BINOCAR registries was transferred over to Public Health England on 1st April 2015, it was agreed that the case data collected thus far had the potential to become an invaluable resource for research into the associations between types of congenital anomalies and the long-term health and developmental outcomes of affected children born over a period spanning almost 30 years.

 

BINOCARD contains records of cases submitted to five regional Congenital Anomaly Registers (CAROBB, EMSYCAR, SWCAR, NorCAS, WANDA) and the National Down Syndrome Cytogenetic Register (NDSCR) during their active periods of surveillance. The database is de-identified, meaning that it does not contain NHS numbers, postcodes, dates of birth or other information that could disclose the identity of any individual. Nonetheless, in the case of rare diseases affecting very few children, further controls to prevent possible disclosure of identities may be necessary.

 

The BINOCARD repository is based at The Wolfson Institute, Queen Mary University of London. The BINOCAR Management Committee (BMC) reviews all requests for BINOCARD data, on the basis of scientific merit and potential to deliver a measurable benefit to health and social care, subject to ethical permissions being obtained and requirements for secure data storage and processing being met.

 

Researchers interested in applying for BINOCARD data can find detailed guidance in the sub-menus, and are welcome to contact the BINOCARD repository leader, Professor Joan Morris (j.k.morris@qmul.ac.uk) with further enquiries.