Member details

Name :

Short name:

Country:

History:

The Registry was established in 1981 to include the Veneto, Friuli Venezia Giulia and Trentino Alto Adige regions. The Registry became a member of Eurocat in 1985, and an associate member of Clearinghouse in 1997.Since January 2018 the Register covers only Veneto Region and the role of leader has been assigned to prof. Paola Facchin who is also the leader of the Birth register and Rare Diseases’ Register of Veneto Region

Size and coverage::

covers the geographical area of Veneto Region, in the North East of Italy with the cities and provinces of Venezia, Padova, Vicenza, Verona, Treviso, Belluno and Rovigo. It covers an area of 18,345 sq. Kms with a population of around 4.9 million people and about 40.400 newborns/year. The Register covers all newbornswith a coverage of 100%.

Legislation and funding:

Notification to the Registry is compulsory by national and regional laws. The Registry is funded by the Regional Health Authority..

Sources of ascertainment:

Veneto Region Registry utilizes a multiple sources method to ascertain congenital malformations by a record linkage allowing, first, the identification of cases and, then, their validation using an ad hoc developed algorithm. The sources are:the Regional birth register, the Regional Rare Disease Registry, the hospital discharge database, mortality database, the regional database about TOP, notifications by the genetists of the regional genetic network, the neonatologists, paediatricians and obstetricians.

Exposure information:

Detailed information on various exposures, including maternal or paternal occupation, diseases and drug use is obtained by regional databaseboth for malformed infants and controls.

Background information:

Detailed information on various exposures, including maternal or paternal occupation, diseases and drug use is obtained by regional databaseboth for malformed infants and controls.

Addresses and staff:

Prof. Paola Facchin,Programme Director,Coordinating Centre for Rare Diseases – Veneto Region,Register for Rare Diseases – Veneto Region,Birth Register – Veneto Region ,Register of Congenital anomalies - Veneto Region,,,Dr. Silvia Manea,silvia.manea@regione.veneto.it,,Dr. Laura Salmaso,laura.salmaso@regione.veneto.it,,

Phone:

Fax:

E-mail:

International Clearinghouse for Birth Defects

International Clearinghouse for Birth Defects