After 40 years of research on FASD, 20 of which were in South Africa, Dr. Philip May and his research team have reached a significant milestone: the first NIH endorsed diagnostic criteria.
After almost 40 years of research, Philip May, PhD, a leading expert in the field of fetal alcohol spectrum disorders (FASD), and his team have published their fifth study on FASD in a South African community. Equally as monumental is the recent endorsement by the National Institute on Alcohol Abuse and Alcoholism (NIAAA), one of the National Institutes of Health (NIH), of the FASD diagnostic guidelines that were developed by May’s research team.
The new guidelines, May says, are “to a great degree an evolution of the diagnostic guidelines that we have employed in South Africa since 1997.” The lead author on the diagnostic guidelines paper is H. Eugene Hoyme, MD, an internationally renowned pediatrician and medical geneticist who has lead the clinical diagnostic team for May’s research projects for two decades. As the first and only fetal alcohol spectrum disorder diagnostic criteria to be endorsed by the NIAAA, these guidelines include knowledge garnered from May’s research team on NIAAA-funded research in South Africa, Italy, and the United States.
May is a research professor at the UNC Nutrition Research Institute at the North Carolina Research Campus (NCRC) in Kannapolis. He began conducting epidemiological studies in South African communities in 1997, focusing on determining and confirming the prevalence and characteristics of FASD and refining a set of criteria for specific FASD diagnoses. He started studying FASD in 1979 among American Indian communities of the Southwestern United States.
The updated clinical guidelines are, says May, “more specific in identifying statistical parameters for sufficient evidence of child physical traits, neurobehavioral traits and alcohol exposure.” In the past, it was to a great degree left to individual clinicians and researchers to use their own parameters of physical markers and alcohol exposure to decide what was “sufficient” for diagnosing FASD.
“In clinical studies of FASD, only the most behaviorally disordered children or the most physically compromised arrive at secondary and tertiary clinics to get a diagnosis,” May explains. “If you base what the traits of FASD look like from just clinical examination in established clinics, you’re only getting a narrow range of the most affected cases.” May’s studies examine the full range of FASD in general populations where they evaluate thousands of children, creating a normal representation of FASD found in a specific community.
The active case ascertainment methods May pioneered in South Africa are now employed by his team in the U.S. as part of a NIAAA-funded initiative called the Collaboration on FASD Prevalence (CoFASP). Data from U.S. studies will be released next year. Because the methods of research are similar and the diagnostic criteria are the same, it is becoming easier to compare FASD statistics across countries, and May’s methods have already been adopted by researchers in Croatia and Poland.
Meanwhile in South Africa
Despite the years of research, May and his team have not seen a significant reduction in FASD rates in South Africa. Caseworkers have successfully gotten many women to reduce or cease their use of alcohol during pregnancy, but drinking habits have not changed substantially in the larger community. Binge drinking on the weekends remains a very common form of recreation.
“A lot of women quit drinking midway through the second trimester after a health care provider confirms that they are pregnant, but a lot of damage is already done,” May says. His past research shows that first trimester drinking alone increases the risk of FASD by a factor of 12, compared to non-drinking women.
Looking to the Future
Along with abstaining from alcohol during pregnancy, May stresses the importance of a “whole health” message for pregnant mothers. “Whether a mother is not consuming the right nutrients or she is consuming alcohol that negates the impact of beneficial nutrients, the negative influence on a baby’s brain and development can be substantial,” he says.
With the updated clinical guidelines for diagnosing FASD published, May’s team continues to research the prevalence of FASD in South African and American communities and to educate mothers about the specific dangers to their child’s development from drinking while pregnant and while breastfeeding.
By Kara Marker, NCRC Marketing