Member details

Name :

Short name:

Country:

History:

The Registry started in 1979 in the province of Florence and from 1992 in the whole Tuscany region. The Programme became a full member of the Clearinghouse in 1998.

Size and coverage::

The programme is population-based including all mothers resident in the Region of Tuscany. It involves all the regional hospitals and the coverage is around 95% of all births in the Tuscany region (approximately 3.5 million inhabitants and 27,000 births per year).

Legislation and funding:

The Registry is a surveillance programme included in the Regional Statistics System; it is formally recognised,and supported by the Tuscany Region Health Authority.

Sources of ascertainment:

Multiple sources are used to ascertain malformed infants; records are obtained from all obstetrical and ,maternity units, pediatric departments and medical genetics units. Paediatric cardiology centres covering part of the registry population supply systematic case lists and diagnostic details to the registry. Mothers are interviewed by using a standardised questionnaire. Malformed babies diagnosed within the first year of life are also registered.

Exposure information:

Maternal and paternal occupation, life-style and socio-economic characteristics are obtained by interviews of mothers of malformed infants.

Background information:

The registry does not require ethics committee approval in order to collect and store data. At the moment informed consent is not required by national legislation, but the registry asks for oral, authorization from the mother. The parents have to agree to the inclusion of the child on the Register (opt-in). Vital statistics and other epidemiological information are obtained by the Certificate of Delivery Assistance (Certificato di Assistenza al Parto-CAP) collected by the Regional Bureau of Statistics.

Addresses and staff:

Dr Anna Pierini, Project Leader, Unit of Epidemiology, CNR Institute of Clinical Physiology, Via Moruzzi 1, 56124 Pisa, Italy

Phone:

Fax:

E-mail:

International Clearinghouse for Birth Defects

International Clearinghouse for Birth Defects