Birth Defects & Developmental Disabilities

Birth Defects Prevention: Interview with Dr. Duane Alexander, Director of the National Institute of Child Health and Human Development

Dr. Duane Alexander is the Director of the National Institute of Child Health and Human Development (NICHD). NICHD’s mission encompasses all stages of human development from preconception to adulthood and addresses topics related to the health of children, adults, families, communities and populations. Over the course of four decades, research supported and conducted by the NICHD has helped to bring about improvements in maternal and child health and identified thousands of the factors affecting a child’s chances for a healthy start. Recently, we had an opportunity to speak with Dr. Alexander about his career and some exciting projects on the horizon at NICHD.

Q. In your career as a pediatrician and at NICHD, you have seen much progress in the research surrounding birth defects prevention. What, in your estimation, is the most exciting finding to come out in recent years, and what has had the most impact?

A. I would probably point to the development of the vaccine for rubella, sometimes referred to as German Measles. The epidemic in 1964 resulted in an estimated 12.5 million cases of rubella infection, and 20,000 infants were born with congenital rubella syndrome. We saw a devastating amount of cases of deafness, eye problems (including cataracts and glaucoma), congenital heart disease, mental retardation and so many other birth defects. The rubella vaccine has solved what, not all that long ago, was a critical health problem. In broader terms, immunization in general has made a dramatic, remarkable impact on health in our lifetime. It’s hard to believe when you think about how inexpensive vaccines are compared to the cost savings and the true value of health, which of course can’t be quantified.

Q. Tell us about the National Children’s Study.

A. The National Children’s Study is a groundbreaking, long-term research project to examine the environmental influences on children’s health and development. It will involve more than 100,000 families across the United States, following their children from before birth until age 21. This study will define the term “environment” broadly and take a number of issues into account, including natural and man-made environmental factors, biological and chemical factors, physical surroundings, social factors, behavioral influences, genetics, cultural and family influences and geography. Researchers will analyze how these elements interact with each other and what helpful and/or harmful effects they might have on children’s health. Studying children through different phases of growth will allow us to better understand the role of the various factors on health and disease.

Q. What makes this study so important?

A. The National Children’s Study holds promise to give us valuable data–a comprehensive picture that we need to be proactive and respond effectively to emerging health issues. For example, we don’t know why there has been an increase in several types of birth defects as well as certain disabilities in the past few decades. There are limited data as to how a pregnant woman’s exposure to certain substances might affect a child in utero and what particular risks arise (if any) for children within certain geographic areas. There has been minimal follow-up to assess long term effects in both these instances.

Q. How can parents, professionals, policymakers and other partners in health assure that this project is a success?

A. Community involvement is important to ensure that the concerns and needs of the participants and the partners are being met. Individuals and organizations can join the National Children’s Study Assembly, which is the primary body for providing feedback. As the project progresses, the dialogue between the Study Assembly, the involved agencies and other organizations will allow the National Children’s Study to adapt so that it can address changing needs. A broad spectrum of community partners is what is going to engage families and keep them motivated to stay involved in the study. Twenty-one years is a substantial commitment!

Q. Is there a message that you want to send to our partners in maternal and child health?

A. There’s simply no better start for a child than to be born to a mom who’s had a healthy pregnancy. We need to work together to see that all women have the benefit of health information that might affect their chances for having a child that is healthy, born at the right time and of the right weight. There are certainly a lot of unknowns when it comes to pregnancy, birth and child development, but we need to do our best to see that the information we do have is getting to the people who need it. That’s why it’s been a pleasure for me to be involved with the National Healthy Mothers, Healthy Babies Coalition since its inception in the 1980’s. The private/public partnerships that they have helped to build across the disciplines that make up the field of maternal and child health are key to communicating about important issues. We are so much stronger when we work together to support and advance our goals.

For more information about NICHD, go to: For information about the National Children’s Study, go to:

Dr. Alexander received his undergraduate degree from Penn State University and his medical degree from the Johns Hopkins University School of Medicine. A diplomat of the American Board of Pediatrics, he was presented with their Arnold J. Capute Award for his lifelong dedication towards minimizing childhood disability and improving the care of affected children. Dr. Alexander is a member of the American Pediatric Society, Society for Developmental Pediatrics and the American Academy of Pediatrics. He has authored numerous papers and book chapters, most relating to his research in developmental disabilities.