EMSYCAR

East Midlands & South Yorkshire Congenital Anomalies Register

The East Midlands & South Yorkshire Congenital Anomalies Register (EMSYCAR) aimed 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 included structural, genetic, chromosomal and biochemical malformations, associations and syndromes, coded according to the ICD-10 classification of diseases system, and covered all live and stillbirths, spontaneous losses and terminations for reasons of fetal anomaly.

It aimed 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 was undertaken, and data used to evaluate screening, prevention and treatment.

Background

EMSYCAR collected data from 1 January 1997 to 31 March 2015. At first covering the former Trent region, it expanded in 2003 to include Northamptonshire, and monitored around 74,000 births per annum. Data were 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 was a feature of all regional congenital anomaly registers, which greatly increased the accuracy and completeness of the data they held. Around 2,250 cases were added to the database annually, about 1500 of which were suitably anonymised and subsequently notified to the European Congenital Anomaly Surveillance System (EUROCAT).

Only about half of England, but all of Wales, were covered by a regional anomaly register, and EMSYCAR was a founder member of the British Isles Network of Congenital Anomaly Registers (BINOCAR), which existed to improve available anomaly statistics and to increase general awareness of anomaly occurrence. Areas outside the coverage of a BINOCAR register had 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. From then, BINOCAR worked towards the creation of a new anomalies database for England and Wales which became operational in 2010.

All BINOCAR Registers were authorised to collect data without individual parental consent, and were therefore subject to very strict guidelines concerning data handling and confidentiality. However, while data protection issues necessarily remained paramount, data could 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 Lead Study Administrator)
• Mr Peter Perry, (EMSYCAR Database Administrator)
• Dr Frances Mielewczyk, (EMSYCAR Database Administrator)
• Mr Martin Perkins (Computer Officer)