New spina bifida center aims to globally eliminate the preventable birth defect

Woodruff Health Sciences Center | June 1, 2012

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Worldwide, more than 325,000 babies are born annually with neural tube birth defects – and 75 percent of these births defects could have been prevented with folic acid.
Emory University researchers in the Rollins School of Public Health (RSPH) and the Department of Pediatrics, in partnership with Sophie's Voice Foundation (SVF), are launching an international research and prevention center to fight spina bifida.

Spina bifida, a neural tube defect, is a condition that affects the spine and is usually apparent at birth. It can result in mild to severe physical and mental disabilities. Worldwide, more than 325,000 babies are born annually with neural tube birth defects – and 75 percent of these births defects could have been prevented with the proper daily consumption of folic acid. 

The primary goal of the new Center for Spina Bifida Research, Prevention and Policy (CSB) is the global prevention of spina bifida by 2022. The Center will also create programs to help advance the quality of life for individuals living with spina bifida. It will seek to help those with spina bifida achieve their full potential through research and policy to create successful models for spina bifida healthcare, including transitions from childhood to adult care.

William Foege, MD, professor emeritus in the Rollins School of Public Health and senior fellow with The Bill and Melinda Gates Foundation says, "The Center for Spina Bifida Research, Prevention and Policy is working toward prevention of spina bifida across the globe. Based on the successful prevention efforts in North America, within a decade or so, we can totally prevent this birth defect and improve the lives of children and adults." Foege is widely recognized as instrumental in the successful campaign to eradicate smallpox in the 1970s.

In 25 years, the polio eradication program reduced the number of polio cases from 350,000 to 500.  The Center will seek to improve the lives of millions of families just as the smallpox and polio eradication programs have done.

The CSB, a 10-year $50 million initiative, will collaborate with the Centers for Disease Control and Prevention's National Center for Birth Defects and Developmental Disabilities, the Flour Fortification Initiative and other international public, private, nonprofit and academic sectors.

"The Center for Spina Bifida Research, Prevention and Policy will provide an infrastructure and the resources to develop and implement a comprehensive plan seeking to prevent almost all new cases of spina bifida by 2022 – 30 years after CDC published the U.S. Public Health Service recommendation that all women of reproductive age should consume 400 micrograms of folic acid to prevent spina bifida and other neural tube defects," says Godfrey P. Oakley, the Center's director and a professor of epidemiology at RSPH. 

Another focus of the CSB is to expand current research on spina bifida. Initial research will include epidemiologic research on deaths of young adults with spina bifida, seeking to identify preventable causes, and research focused on the use of anticonvulsant drugs that have been found to increase the risk of neural tube defects. The Center will also be active in research seeking to provide the scientific foundation for the elimination of vitamin B12 deficiency diseases.

The SVF is a charitable organization supporting family outreach programs, prenatal education and surgical studies for children and adults with Spina Bifida. It was established in 2008 by actors Boris Kodjoe and Nicole Ari Parker in honor of their daughter who was born with spina bifida.