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AJPH First Look, published online ahead of print Mar 29, 2006
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American Journal of Public Health, 10.2105/AJPH.2004.057760


Health Policy and Ethics

Fostering International Collaboration in Birth Defects Research and Prevention: A Perspective From the International Clearinghouse for Birth Defects Surveillance and Research

Lorenzo D. Botto 1*, Elisabeth Robert-Gnansia 2, Csaba Siffel 3, John Harris 4, Barry Borman 5, Pierpaolo Mastroiacovo 6

1 CDC, NCDBDD, Atlanta, GA
2 Institut Europeen des Genomutations, Lyon, France
3 Hungarian Congenital Abnormality Registry, Budapest, Hungary
4 California Birth Defects Monitoring Program, California, United States
5 Public Health Intelligence, Wellington, New Zealand
6 International Centre on Birth Defects, Rome, Italy

* To whom correspondence should be addressed. E-mail: lorenzo.botto{at}hsc.utah.edu.


   Abstract

The International Clearinghouse for Birth Surveillance and Research, formerly known as International Clearinghouse of Birth Defects Monitoring Systems, consists of 40 registries worldwide that collaborate in monitoring 40 types of birth defects. Clearinghouse activities include the sharing and joint monitoring of birth defect data, epidemiologic and public health research, and capacity building, with the goal of reducing disease and promoting healthy birth outcomes through primary prevention.

We discuss 3 of these activities: the collaborative assessment of the potential teratogenicity of first-trimester use of medications (the MADRE project), an example of the intersection of surveillance and research; the international databases of people with orofacial clefts, an example of the evolution from surveillance to outcome research; and the study of genetic polymorphisms, an example of collaboration in public health genetics.

Key Words: Epidemiology, Genetics, Global Health, Birth Outcomes, Public Health Practice, Surveillance




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