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Ukrainian-American Birth Defects Program

Abstracts of the Reports of the UABDP Participants
of the 2-nd National Bioethics Congress

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September 30, 2004



The National Center on Birth Defects and Developmental Disabilities: National and International Birth Defect Prevention Programs

Jaime L. Frias
Professor,
National Center on Birth Defects and Developmental
Disabilities (CDC, Atlanta, USA)

Jaime L. Frias, M.D.

The National Center on Birth Defects and Developmental Disabilities (NCBDDD) was created at the Centers for Disease Control and Prevention (CDC) with the mission to:

  • promote optimal fetal, infant, and child development;
  • enhance the quality of life and prevent secondary conditions among children, adolescents, and adults living with disability;
  • prevent birth defects and developmental disabilities.
With this purpose, the NCBDDD conducts epidemiological research into the causes of and risk factors for birth defects and developmental disabilities, and has developed and supports state-of-the-art monitoring programs. Cooperative agreements fund programs for the conduction of surveillance on the prevalence of birth defects in 28 states. These provide valuable research data, while also facilitating access of identified children to services and programs and performing health promotion interventions. In addition, 8 Centers for Birth Defects Research and Prevention conduct an in-depth case-control study of over 30 major malformations, providing a unique opportunity to identify causes of common and rare defects in a geographically and ethnically diverse population and to study gene-environment interactions.

In recent years, the prevention of neural tube defects (NTDs) has been a major initiative within the NCBDDD. Working with dedicated partners -including the March of Dimes, the Spina Bifida Association of America, and others- the Center spearheaded folic acid supplementation in women of reproductive age and fortification of grain products. As a result of these efforts, the prevalence of NTDs in the United States decreased 20%-30% between 1996 and 2001. In addition, Center researchers working with scientists in China implemented a folic acid community intervention that resulted in a notable reduction in the prevalence of NTDs in two areas of the country (40% in the South and 85% in the North). A program in Chile, where folic acid fortification of wheat flour (220g/100g) was initiated in 2000, decreased the prevalence of NTDs by more than 40% in 2002.

Another major program focuses on the prevention of fetal alcohol syndrome (FAS) by educating women to avoid alcohol during pregnancy, and developing effective counseling programs for women at high risk. This effort also includes education of health care professionals about the recognition of FAS in children, and studies of new approaches to help children affected by prenatal alcohol exposure.

Numerous other programs within the NCBDDD are geared to helping children reach their full potential and to promoting health and well-being among people with disabilities, with special emphasis on vulnerable populations. The Center's guiding principle is to ensure that the overarching values of equity and justice in health are at the core of these programs, and that the expertise of its scientists and staff is available to all those, within and outside the United States, who are building their capacity to prevent birth defects and developmental disabilities and to ameliorate their impact.

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17/November/2004 sl