The National Birth Defect Registry Birth Defect Research for Children was just cited in an article (page 443) on Environmental Factors in Birth Defects in the October issue of Environmental Health Perspectives, the journal of the National Institute of Environmental Health Sciences.
Birth Defect Research for Children
Focus | Environmental Factors in Birth Defects
Environmental Health Perspectives • volume 117 | number 10 | October 2009 A 443
Betty Mekdeci, executive director of the advocacy group Birth Defect Research for Children, says there are many problems with the basics of how birth defects are tracked and evaluated. Her experience of more than 30 years—prompted by her efforts, and those of her husband, to figure out why their son was born with multiple birth defects—led her to conclude that some of the most important limitations include inadequate medical diagnostic codes for classifying many birth defects, inaccurate use of codes by health care practitioners to meet insurance billing requirements, and the inability of many health care practitioners to diagnose a birth defect at birth or in follow-up visits, and skepticism toward the input of parents, who usually know better than any one doctor about the full range of health problems their child is having.
To overcome some of these problems, Mekdeci and her colleagues have developed an alternative method of tracking birth defect incidence based on parent responses to a lengthy questionnaire.