History and Funding
The Registry started in 1991. The programme is a surveillance programme supported by grants from Regional Health Authorities. The Registry joined EUROCAT in 1997
Population Coverage
The Registry is hospital-based with participating hospitals distributed in Campania, a region of Southern Italy where Naples is the main city. Initially 38 hospitals reported and the annual number of births was 38,000. At the present time, 80 hospitals participate, covering just over 60,000 annual births, approximately 90% of all births in Campania region which is approximately 8% of all births in Italy.
Sources of Ascertainment
Participation was voluntary up to 1995 but became mandatory from 1996 onwards. Report forms are obtained from delivery units, pediatric clinics and all divisions that care for babies with birth defects at the participating hospitals. From 1994, a report form has been introduced to record anomalies diagnosed from induced abortions. From 2005 hospital discharge notification are available. Birth certifications include notification of congenital anomaly (after 2000) as do death certificates and both are used as a source of notification.
Maximum Age at Diagnosis
Currently there is no upper age limit. Formerly notification occurred up to 1 year of life.
Terminations of Pregnancy for Fetal Anomaly (TOPFA)
Termination of pregnancy is legal with an upper gestational age limit of 180 days for all reasons including a diagnosis of congenital anomaly. Terminations of pregnancy are registered.
Stillbirth Definition and Early Fetal Deaths
Any baby born without signs of life after 180 gestational days may be classified as stillborn and is included in the register. Hence any baby born without signs of life at less than or equal to 180 days is classified as an early fetal death/spontaneous abortion. Autopsy rates are as follows: 100% in stillbirths, 100% in induced abortions and about 90% in deaths with congenital anomaly. There were no figures available for early neonatal deaths or deaths between 1 week and 1 year.
Exposure Data Availability
For each malformed infant reported, information is given on certain exposures, including maternal drug usage and parental occupation. From 2002 information on induced abortions and controls are available. Information on all births from birth certificates is available.
Denominators and Controls Information
The ISTAT - National Institute of Statistics - is the source of birth statistics. Only demographic information is available on controls.
Address for Further Information
Dr. Gioacchino Scarano
Registro Campano Difetti Congeniti
Azienda Ospedaliera "G Rummo"
Via dell'Angelo 1
82100 Benevento,
Italy
Tel: +39 0824 357 374
Fax: +39 0824 457 495
Email: giorecam@tin.it