Linked de-identified research database for congenital anomaly outcomes
Research type
Research Database
IRAS ID
188069
Contact name
Joan Morris
Contact email
Research summary
BINOCAR Research Database
REC name
East Midlands - Derby Research Ethics Committee
REC reference
16/EM/0440
Date of REC Opinion
16 Nov 2016
REC opinion
Favourable Opinion
Data collection arrangements
This is a de-identified research database containing data on the long-term survival, health and educational outcomes of babies born with congenital anomalies between the mid-1980s until early 2015. It has been created through linking clinical information historically collected by regional congenital anomaly registries in England to civil registrations data, electronic hospitalisation and educational records contained in multiple national administrative databases. The resulting records have been de-identified; i.e. they do not contain any personal identifiers such as names, addresses, NHS numbers and other sensitive information which would disclose the identity of any individual.
Research programme
The purpose of creating this unique database is to further our understanding and knowledge of the outcomes for children affected by congenital anomalies. This database will be used primarily by researchers within the BINOCAR (British and Irish Network of Congenital Anomaly Researchers) network for approved projects such as evaluating the long-term mortality and morbidity associated with different congenital anomalies, and how these may be influenced by geographical, socio-economic and other risk factors. The information which will flow from the research conducted using this database will be used to provide more accurate information for clinicians involved in the care of parents during pregnancy and soon after the birth of their baby. This will enable parents to make a more fully informed decision about the future of affected pregnancies and for parents at birth to more fully understand the future prospects and life chances of their children.
Research database title
BINOCAR Research Database
Establishment organisation
Queen Mary University of London
Establishment organisation address
Wolfson Institute of Preventive Medicine
Charterhouse Square
EC1M 6BQ