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Registries

Congenital Malformations Registers

The Congenital Malformations Registers (CMR) are epidemiological structures able to guarantee the regular and complete registration of malformations in a specific geographical region. They are generally aimed at improving knowledge on these pathologies. A Congenital Malformation (CM) survey and surveillance program represent an original structure putting together a routine activity (gathering, filing, archiving and elaborating basic statistics) and a research activity.

In this way CMR activity allows to identify prevalence/incidence and fluctuations in time and space of CM and makes it possible to verify the effectiveness of the performed targeted preventive actions and health choices.

In this landscape CMR represent a useful instrument for health evaluation, surveillance, prevention and planning and can contribute in an original way to link the national health system both to the population health status and to the evaluation of effectiveness of the actions carried out.

Moreover the Registers placed on the national territory have a strategic relevance in relation to the creation of a national integrated registration system of CM.

ITALIAN REGIONAL REGISTRIES

LOMBARDY REGISTER:
A Hospital-Based Register recently instituted, that registers all births in Como and Lecco provinces.
The Lombardy Register is for the registration of congenital malformations at birth and during the first week of life.

NORTH-EAST ITALY AND CONGENITAL MALFORMATIONS REGISTER (N.E.I.)
It was born in 1981, and enter all congenital malformations during the prenatal period, at birth and during the first week of life. The total coverage of births is over 95% in Veneto and slightly less in Friuli Venezia Giulia and in Trento and Bolzano.
Member of the international Registers EUROCAT (European Registration Congenital Anomalies and Twins) and ICBDMS (International Clearinghouse Birth Defects Monitoring Systems).
Website: http://www.genetica.pediatria.unipd.it/file/malfcong.htm

EMILIA ROMAGNA CONGENITAL DEFORMITIES INVESTIGATION (IMER)
The IMER Register was born in 1978 within EUROCAT (European Registration Congenital Anomalies and Twins).
The IMER investigation protocol enter all suspected or identified morphogenetic defects in the prenatal period, at birth and during the first week of life, reported in Emilia Romagna.
Website: http://web.unife.it/progetti/imer/imernew/

TUSCAN CONGENITAL DEFECTS REGISTER (R.T.D.C)
The activity of surveillance of congenital deformities in Tuscany has begun in 1979.
The RTDC investigation protocol registers all suspected or identified morphogenetic defects in the prenatal period, at birth and during the first week of life. It takes part in ICBDMS (International Clearinghouse Birth Defects Monitoring Systems) and since 1997 is member of EUROCAT (European Registration Congenital Anomalies and Twins).
Website: http://www.rtdc.it/

CAMPANIA REGISTER OF CONGENITAL DEFECTS (B.D.RE.CAM.)
The Campania Register of Congenital Malformations was born in 1991.
Among its main purposes it has it has to control on the registration of congenital defects in the prenatal period, at birth and during the first week of life.
It takes part in the ICBDMS (International Clearinghouse Birth Defects Monitoring Systems) and it is member of EUROCAT (European Registration Congenital Anomalies and Twins).
Website: http://www.bdrcam.org/

SICILIAN CONGENITAL MALFORMATIONS INVESTIGATION (I.S.MA.C.)
Since 1991 the I.S.MA.C. is the Sicilian registry of Congenital Anomalies register, a system to constantly list and enter cases of Congenital Anomalies in newborn and children in Sicily. The ISMAC registers all congenital defects at birth, during the first week of life and, since 1999, the medical abortion after prenatal diagnosis of anomalies.
Website: http://www.asmac.it/registroismac.html




INTERNATIONAL REGISTRIES

ICBDSR
International Clearinghouse for Birth Defects Surveillance and Research
Website: http://www.icbd.org/

EUROCAT
European Concerted Action on Congenital Anomalies and Twins
Website: http://www.eurocat.ulster.ac.uk/index.html

Published 05-02-2008 in Registries , last update 25-07-2012

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