Aims

The East Midlands & South Yorkshire Congenital Anomalies Register (EMSYCAR) aims to record all cases of congenital anomaly diagnosed antenatally or after delivery in fetuses and children up to the age of sixteen years born to mothers resident within the region. It includes structural, genetic, chromosomal and biochemical malformations, associations and syndromes, coded according to the ICD-10 classification of diseases system, and covers all live and stillbirths, spontaneous losses and terminations for reasons of fetal anomaly.

It aims to establish the prevalence of such anomalies in the population, monitoring changes over time, and maintaining surveillance throughout the region, investigating any changes in frequency which become apparent.  Research into the possible causes and consequences of individual congenital anomalies is undertaken, and data is used to evaluate screening, prevention and treatment.

Background

EMSYCAR has collected data since January 1st 1997. At first covering the former Trent region, it expanded in 2003 to include Northamptonshire, and now monitors around 74,000 births per annum. Data is notified to the Register from antenatal clinics and delivery suites, ultrasound departments, clinical genetics, cytogenetics and pathology labs, child health departments, surgical and neonatal units throughout the region. Multi-source reporting is a feature of all regional congenital anomaly registers, which greatly increases the accuracy and completeness of the data they hold.  Around 2,250 cases are added to the database annually, about 1500 of which are suitably anonymised and subsequently notified to the European Congenital Anomaly Surveillance System (EUROCAT.

Only about half of England, but all of Wales, is covered by an anomaly register, and EMSYCAR is a founder member of the British Isles Network of Congenital Anomaly Registers, which exists to improve available anomaly statistics and to increase general awareness of anomaly occurrence.  Areas outside the coverage of a BINOCAR register have much poorer data quality and quantity, and were previously treated separately by the Office for National Statistics who maintained the national database, until its closure in 2008.  Since then, BINOCAR has been working towards the creation of a new anomalies database for England and Wales which became operational in 2010, but at present can only cover those areas having a regional register.

All BINOCAR Registers are authorised to collect data without individual parental consent, and are therefore subject to very strict guidelines concerning data handling and confidentiality. However, while data protection issues necessarily remain paramount, data can be made available for research, clinical management, parental counselling, audit and education.

Personnel

Professor Elizabeth Draper (Professor of Paediatric and Perinatal Epidemiology)

Dr Judith Budd (EMSYCAR Co-ordinator)

Ms Laura Berry (EMSYCAR Database Administrator)

Mr Peter Perry, (EMSYCAR Database Administrator)

Mr Martin Perkins (Computer Officer)