History and Funding
The registry started in 1995 and became a member of EUROCAT in 1996. The registry is organised by the Bulgarian Society of Human Genetics and Sofia Municipality, and was supported by the State and private sponsors until 2001. The registry is not currently funded.
Population Coverage
The registry covers all mothers resident in the region of Sofia (Population-based III - All mothers delivering in defined geographic area excluding non-residents of that area) and covers approximately 10,000 births annually.
Sources of Ascertainment
The registry covers livebirths (up to 1 year of life), still births and terminations of pregnancy. In practice, cases are notified by: obstetricians, neonatalogists, pediatricians and pathologists. However, according to the Ministry of Health Act, every physician is allowed to notify by telephone or special form. Birth certificates do not include notification of congenital anomaly whereas death certificates do and are used as a source. Developmental screening clinics and child health centres are used as a source of notification of congenital anomaly.
Terminations of Pregnancy for Fetal Anomaly (TOPFA)
Termination of pregnancy is legal, with an upper gestational age limit of 12 weeks without special permission and up to 20 weeks with permission. If a congenital anomaly is diagnosed, the upper gestational age limit for termination is 27 weeks. The timing of termination depends on the severity of the defect. The Information Group (registry leader, two pediatricians and a midwife) has full access to the data relating to invasive prenatal diagnosis carried out in the Genetic Centre in Sofia.
Stillbirth and Early Fetal Deaths
Stillbirth definition is death at 20 or more weeks of gestation with no evidence of life after delivery. Stillbirths are registered. Early fetal deaths/spontaneous abortions are registered and included if the gestational age is less than 20 weeks.
Exposure Data Availability
Exposure information: Information about maternal drug use, maternal diseases, maternal occupation and obstetric history is available for cases.
Denominators and Controls Information
Denominators are available from the Statistics Unit of the Regional Health Centre of Sofia Municipality, the Ministry of Health and the Statistics Units of Sofia Maternity Clinics.
Address for Further Information
Department of Clinical Genetics,
University Pediatric Hospital,
blvd Ivan Geshov 11,
Sofia 1606,
Bulgaria