The registry was started in 1978 in a few hospitals and has increased in size and now includes 45 delivery units. The programme became an associate member of EUROCAT in 1980 and of the Clearinghouse in 1985.

Size and coverage:

The programme is population based and covers approximately 95% of all births in the Emilia Romagna region, or approximately 25,000 births annually. Only 5% of resident mothers give birth in a hospital outside the area. Stillbirths of 28 weeks or more gestation are included. Access to information on pregnancy termination has been available since 1994. The registration area covers 22,100 square kilometres. The number of inhabitants in the area covered is 3,909,519.

Sources of ascertainment:

Reporting is performed by neonatologists and pediatricians during the first week of the infant's life using a questionnaire. Selected malformations are followed up. Local codes are used for occupation, illness, habitual/unusual exposures, and drugs. BPA-ICD-9 codes for syndromes and malformations are used. Feed-back to participants is performed: newsletters, annual reports, and reports on specific topics. Bi-annual meetings are held. Information exchange with Cytogenetic Laboratories, Pathology Services, and Health Services has been established.

Exposure information:

Detailed exposure information is obtained through interviews with mothers of malformed infants. For each malformed infant, a control is chosen (the baby born before or after the malformed case in the same hospital) and its mother is interviewed in a similar way.

Background information:

Some general demographic information is known for all births in the area (eg. mean maternal and paternal ages, percentage of mothers 35 years or older). For each participating hospital, the numbers of live births and stillbirths are known. An autopsy is performed in about 90% of neonatal deaths (0-7 days) and later deaths (1 week - 1 year) and in nearly all deaths with congenital anomaly. A good information exchange has been established with the regional health services.

Funding:

The program is recognized and financed by the regional Health Council. Hospital participation is voluntary. Staff members include: pediatricians, obstetricians, geneticists, epidemiologists, as well as a part-time secretary and a computer expert