标题:Fostering International Collaboration in Birth Defects Research and Prevention: A Perspective From the International Clearinghouse for Birth Defects Surveillance and Research
摘要: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. THE INTERNATIONAL Clearinghouse for Birth Defects Surveillance and Research (known until 2005 as the International Clearinghouse for Birth Defects Monitoring Systems) was founded in 1974 after the thalidomide tragedy of the 1960s. The Clearinghouse now includes 40 registries from developed and developing countries that jointly monitor 40 birth defects. In addition to monitoring, activities include public health research and capacity building to reduce disease and promote healthy outcomes through primary prevention. Specifically, the Clearing-house monitors for teratogenicity of medications, an example of the intersection of surveillance and research; manages an international database of people with orofacial clefts, to promote outcome research; and has completed an international study of genetic polymorphisms of folate genes, to promote international public health genetic research. Such international collaboration advances crucial public health goals related to healthy pregnancy and child survival. Sustained recognition and support of collaborating programs from governmental and international organizations is critically important to further these goals in developed and developing countries.