History and Funding
The Glasgow Register of Congenital Malformations was founded in 1972 under the auspices of the Social Paediatric and Obstetric Research Unit and jointly administered by the University of Glasgow and the Corporation of Glasgow. It became a member of EUROCAT in 1978. The first full year for which standardised notifications were made was 1979. Greater Glasgow NHS Board (formerly Greater Glasgow Health Board) funds the Register.
The Register had three initial objectives: the detection of epidemics, the calculation of prevalence rates and the epidemiological investigation of selected malformations. The objectives were broadened after joining EUROCAT to include the evaluation of preventive and therapeutic measures.
Population Coverage
Population based I: the reference population is defined as all births (live and still) to women resident in Greater Glasgow NHS Board area irrespective of the place of birth. Livebirths, stillbirths of 24 weeks gestation or more, spontaneous and induced abortions are included. In 2000, 3% of Greater Glasgow NHS livebirths were delivered outside the study area and 18% of Scottish births resided in Greater Glasgow NHS Board area (source: General Register Office for Scotland).
From 1972 to March 1974 the Registry population and geographic area was defined by the boundaries of the former City of Glasgow. Following the reorganisation of the National Health Services in 1974, the Greater Glasgow Health Board assumed responsibility for the Register. Consequently the population under observation was enlarged by 35% to accommodate those areas formerly outside the boundaries of the City of Glasgow which were included within the area of the newly created Greater Glasgow Health Board.
Annual number of births within Greater Glasgow has dropped from 13,500 in 1979 to 9,500 in 2000.
Sources of Ascertainment
Notification is voluntary. Sources available are: Hospital Discharge data, Health Visitor First Visit Forms, Inborn Errors of Metabolism Screening programme, Child Health Surveillance programme, Death & Stillbirth registration, Regional Medical Genetics department. Maternal and Paediatric hospital case records are viewed to confirm each case. The time-delay in ascertainment is a growing problem. This is partly due to time constraints on medical records staff who pull hospital case records for the registry worker to view. Around 20% of cases in 2000 were reported by more than one source of information. There is no time limit for registration or for updating diagnostic detail. Cases with antenatal false positive screening results that do not have a congenital anomaly are not recorded.
Terminations of Pregnancy for Fetal Anomaly (TOPFA)
Termination of pregnancy became legal in the UK in 1967 (Abortion Act). Termination or fetal malformation is legal up to 24 weeks gestation. Information on terminations is now mainly obtained by viewing post mortem reports in regional medical genetics departments.
Stillbirth and Early Fetal Deaths
The official stillbirth definition is: fetal death after 24 completed weeks. Stillbirths and infant deaths are routinely notified to the register where at least one cause of stillbirth/death is a congenital anomaly. There is no lower gestational age or weight limit. Autopsy rates are not known.
Exposure Data Availability
Information includes: maternal and paternal occupation, maternal drug use, maternal smoking and alcohol abuse, maternal and paternal diseases and family history, outcome of previous pregnancies, assisted conception, post code of residence.
Denominators and Controls Information
Data on births is available from the Registrar General for Scotland. Mid-year estimates are published by the middle of the year following. The number of births (live and still) is available by maternal age and by month of birth for the population from 1983.
These figures are produced by analysing birth and child record files from a quarterly download based on current status of residence and not initial status at birth. As a result the denominator data will therefore vary from quarter to quarter and will never correspond to the Registrar General's figures.
Demographic/exposure information on controls is not collected.
Transmission of data to EUROCAT was suspended in 2000, however funding and data collection continue locally.
Address for Further Information
Paediatric Epidemiology & Community Health (PEACH) Unit),
Yorkhill Hospital,
Glasgow, G3 8SJ,
Scotland,
United Kingdom
Last updated: September 2007