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HEALTH POLICY AND ETHICS |
At the time of the study, Lorenzo D. Botto and Csaba Siffel were with the Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, in Atlanta, Georgia; Elisabeth Robert-Gnansia was with the Institut Européen des Génomutations in Lyon, France; John Harris was with the California Birth Defects Monitoring Program in Berkeley, California; Barry Borman was with Public Health Intelligence in Wellington, New Zealand; and Pierpaolo Mastroiacovo was with the International Centre on Birth Defects, Rome, Italy, the head office of the International Clearinghouse for Birth Defects Surveillance and Research.
Correspondence: Requests for reprints should be sent to Lorenzo D. Botto, MD, Division of Medical Genetics, Department of Pediatrics, University of Utah, 2C412 SOM, 50 N Medical Dr, Salt Lake City, UT 84132 (e-mail: lorenzo.botto{at}hsc.utah.edu).
The International Clearing-house for Birth Defects 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.
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