History and Funding
In 1992 a fetal anomaly survey was initiated in the former Mersey region. Its aim was to assess the effectiveness of antenatal diagnosis. However, this survey proved difficult to establish and anomalies were under reported. In 1995 the survey linked to CESDI (Confidential Enquiry into Stillbirths and deaths in infancy), became the responsibility of the CESDI regional Co-ordinator and was relaunched as the Congenital Anomalies Survey. Funding is obtained from various sources which is bid for annually. The Registry joined EUROCAT in 1995.
Population Coverage
The Registry is population-based II - all mothers delivery in a defined geographic area, irrespective of place of residence, the number of women from outside Mersey accounts for around 8-10% of all anomalies. The Survey covers Merseyside and Cheshire with about 27,000 annual births. Despite many national boundary changes, the survey has maintained its boundaries since 1995.
Sources of Ascertainment
Reporting is voluntary. They survey records all anomalies which: (a) are first detected antenatally, at birth or termination of pregnancy, or during the first year of lice, (b) involve a structural, metabolic, endocrine or genetic defect in the child/fetus. They survey relies on multi source ascertainment and has developed an extensive network of health professionals, obstetricians, paediatricians, midwives, neonatal nurses, pathologists and ultrasonographers.
There is also close collaboration with CESDI, the Regional Cytogenetic Department, the Royal liverpool Children's Hospital Alder Hey including the cleft lip and palate unit and birth and death district notification. This network has ensured our local ascertainment is better than national statistics. Birth certificates do not include notification of congenital anomaly.
Terminations of Pregnancy for Fetal Anomaly (TOPFA)
Termination of pregnancy is legal and there is a statutory requirement for registration. The upper gestational age limit is 24 weeks, however, if a congenital anomaly is diagnosed this upper gestational age limit no longer applies.
Stillbirth and Early Fetal Deaths
Stillbirth definition is: any baby born after 24 completed weeks of gestation that shows no sign of life. Stillbirths and fetal deaths/spontaneous abortions are registered. There is no lower gestational age limit for inclusion of early fetal deaths/spontaneous abortions although in practice the Registry is notified of very few spontaneous abortions. Autopsy rates are as follows: stillbirths 32%, induced abortions 47%, early neonatal deaths (0-7 days), 23% later death 1 week to 1 year, 45% and deaths with congenital anomaly 37%.
Exposure Data Availability
Exposure information: No information on exposure is collected other than self reported information on smoking, alcohol and drug intake during pregnancy.
Denominators and Controls Information
Denominator data is supplied in an aggregated format by each hospital within Mersey. No control cases are currently collected.
Address for Further Information
Mersey Perinatal Epidemiology Unit
Department of Obstetrics & Gynaecology
1st Floor, Liverpool Women's Hospital
Crown Street,
Liverpool L8 7SS
United Kingdom