History and Funding
The Registry started in 1991 and became a member of EUROCAT in 1997. The Registry collaborates with other Italian registries under supervision of the Italian National institute of Health in Rome. The programme is supported at local level by ASMAC, the Sicilian association for congenital malformation prevention.
Population Coverage
It is hospital based and includes all mothers delivering in selected hospitals, irrespective of place of residence. The Registry with four south-east provinces of the nine Sicilian provinces, (with a covering rate higher than 75% per year) which represented about one third of all births in Sicily with approximately 17,000 births per year.
Sources of Ascertainment
Reports are obtained from delivery units, pediatric units and other specialist departments. Congenital anomaly is registered up to and after 1 year of birth. The following anomalies are not coded according to EUROCAT standard and therefore are not tabulated separately: cleft lip with or without palate, cleft palate, bilateral renal agenesis.
Terminations of Pregnancy for Fetal Anomaly (TOPFA)
Termination of pregnancy is legal and the upper limit is usually 12 weeks, rising to 24 weeks if a congenital anomaly is diagnosed. Terminations of pregnancy following prenatal diagnosis are registered when notified, but ascertainment is currently still very incomplete. Registered terminations are currently excluded from EUROCAT.
Stillbirth and Early Fetal Deaths
Stillbirths are registered as such if the gestational age is >180 days. Early fetal deaths/spontaneous abortions are not included. Although deaths due to congenital anomaly can be recorded on a death certificate, this information is not used as a source of notification. Autopsy rates were not reported.
Exposure Data Availability
For each malformed reported (livebirth, stillbirth and voluntary abotion), information is given on certain exposures, including maternal drug usage and parental occupation.
Denominators and Controls Information
Up to now no information on controls is available.
Address for Further Information
Dr. Sebastiano Bianca
Registro ISMAC,
Via XXXI Maggio 51,
I-92123 Catania,
Italy
Tel: +39 09 5222 532
Fax: +39 09 5914 330
Email: sebastiano.bianca@tiscalinet.it