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Birth Defects COUNT Partner Newsletter

Birth Defects COUNT Partners Newsletter Logo


Coleen A. Boyle, PhD, MS hygA Message from the NCBDDD Director

Dear Colleagues:

I hope you had a fruitful 2016, and brought in 2017 with excitement and enthusiasm! I am very proud of the many accomplishments in the area of neural tube defects prevention that our Center had this past year, and look forward to many more this year. Of note, we continued to work with partners to address neural tube defects across the globe – collaborating on a demonstration project in Haryana, India and on setting up surveillance programs in Kenya and Tanzania. In the U.S., the FDA approved a food additive petition that allowed for the addition of folic acid to corn masa flour. This effort will help to ensure more babies are born without neural tube defects for generations to come! We could not have accomplished all that we did without the hard work and collaboration of our partners.

In this issue, we highlight our ongoing efforts to expand research and partnerships across the globe. We have continued to develop technical assistance tools as part of the Birth Defects Surveillance Toolkit, and launched a website to house these materials. The Toolkit can be used by countries to help them develop and enhance their birth defects surveillance systems. We have partnered with Ministry of Health officials in Tanzania and Kenya to launch birth defects surveillance systems, while continuing to support the Field Epidemiology Training Program (FETP) by assisting FETP residents with project development, analysis and publication of findings.

On January 9, 2017, to coincide with National Folic Acid Awareness week, we published a new key findings article titled “Folic Acid Education for Hispanic Women: The Promotora de Salud Model” in the Journal of Women’s Health. This publication highlights ways for public health officials to develop programs to aid in promoting folic acid use in Hispanic communities.

I sincerely appreciate your expertise, dedication and research as we continue our efforts in preventing birth defects across the globe. I look forward to continuing our partnership with our current global network and developing new ones as well.

Coleen A. Boyle, PhD, MS hyg
Director, National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention

Program Highlight

CDC Collaborators Launch Groundbreaking Birth Defects Surveillance Programs in East Africa

For many years, Ministry of Health (MOH) officials in Tanzania and Kenya suspected that birth defects were a significant cause of death and lifelong disability among children in their countries. However, neither country had a birth defects surveillance system to capture data on birth defects, so the full magnitude of the problem was unknown. To help gather this vital information, public health officials from both countries reached out to experts within the Centers for Disease Control and Prevention’s (CDC’s) Birth Defects COUNT program for technical assistance. This collaboration led to both countries launching two of the first birth defects surveillance systems in East Africa.

Pumwani Maternity Hospital, a large health facility with over 20,000 births each year in Nairobi, Kenya, was selected to pilot the surveillance program for the Kenya MOH. CDC staff assisted the Kenya MOH to train healthcare workers in the maternity, neonatal, and newborn units on birth defects surveillance. The Kenya MOH continues to train additional staff, which has led to an increased capacity for in-country professionals to build a workforce skilled in conducting birth defects surveillance. In summer 2016, birth defects surveillance began at Pumwani and the first cases have been reported to the Kenya MOH.

In Tanzania, the birth defects surveillance pilot program was led by the Ifakara and Kilombero districts within the Morogoro region. These districts were selected because in both Ifakara and in Kilombero, most women deliver at a MOH facility, making it easier to collect data on most births. Additionally, women in these districts have limited access to flour fortified with folic acid and other nutrients, putting them at potential risk for folic acid deficiency as well as for their babies to be born with neural tube defects (serious birth defects of the brain and spine). Since June 2016, 89 people from across the two districts have been trained by the Tanzania MOH and CDC. These individuals are responsible for implementing birth defects surveillance in all birthing facilities in the district. Data collection began in July 2016.

The MOH birth defects surveillance officials in Kenya and Tanzania are committed to building regional capacity for birth defects surveillance and prevention. Both countries have a team of professionals who can train healthcare facility staff on how to conduct birth defects surveillance. Both countries are also investing heavily in the advanced training of MOH personnel to conduct birth defects surveillance and intervention research through their countries’ Field Epidemiology and Laboratory Training Programs.

These recent advancements toward fully functioning birth defects surveillance programs represent tremendous accomplishments on the part of CDC collaborators in Tanzania and Kenya. The data collected by these programs will have a significant impact on children, families, and communities affected by birth defects. They will allow public health professionals for the first time to define the true magnitude of this problem and measure the impact of interventions, such as expanded food fortification with folic acid.

These accomplishments represent years of hard work, preparation, and dedication to help save babies from the debilitating and sometimes fatal consequences of birth defects. We are so proud of the outstanding efforts by our colleagues in East Africa, and we are excited to see the resulting public health impact.

Partner Spotlight

FETP Residents Advance Birth Defects Prevention in Kenya

In a previous issue of the Birth Defects COUNT newsletter, we highlighted the beginnings of a successful collaboration with the Kenya Ministry of Health and the Kenya Field Epidemiology Training Program (FETP). Since then, Birth Defects COUNT has continued to support FETP residents across a variety of projects to advance birth defects prevention throughout Kenya.

Current FETP activities in Kenya include projects focused on the following assessments:

  • Assessing the birth prevalence (frequency) of neural tube defects that occur in a given time frame.
  • Assessing knowledge, attitudes, and practices of healthcare providers in preventing, identifying, and managing birth defects
  • Identifying factors impacting the use of folic acid fortified staples among women of reproductive age in the Kisumu East district
  • Determining the prevalence of folate deficiency and folic acid utilization among pregnant women attending the Pumwani Maternity Hospital antenatal clinic.

CDC is supporting these efforts by assisting FETP residents with the following:

  • Project development
  • Analysis
  • Publication of findings

Providing opportunities for residents to attend international birth defects surveillance, evaluation, and prevention training workshops

News & Events

FDA Approves Corn Masa Flour Fortification; Decision Could Help Prevent Many Birth Defects

On April 14, 2016, the U.S. Food and Drug Administration (FDA) announced that effective immediately, they will permit fortification of corn masa flour with folic acid to help prevent neural tube defects. The announcement reflected a decision to accept a Citizens’ Petition filed in 2012 by the March of Dimes, American Academy of Pediatrics, Spina Bifida Association, National Council of La Raza, Royal DSM, and Gruma Corporation.

This announcement could have a major beneficial impact on reducing neural tube defects, particularly among the U.S. Hispanic population. Corn masa flour is used to make food products, such as corn tortillas, which is a staple product in the diets of many Hispanics. Mexican-American women have lower folic acid intake than non-Hispanic white women and they are less likely than non-Hispanic white women to take vitamin supplements containing folic acid. Hispanic women also tend to be at higher risk for having a baby affected by a neural tube defect.

Dr. Tom Frieden, former CDC Director, said: “Adding folic acid to corn masa flour will further reduce the risk of neural tube defects among scores of children – especially those born to Hispanic women. Making the healthy choice the easy choice is a public health goal, and we applaud the groups that worked hard to make this possible.”

CDC research indicates that folic acid fortification of corn masa flour could increase folic acid intake among Hispanics and reduce the number of neural tube defects in this population. The fortification of corn masa flour is predicted to increase the average amount of folic acid consumed each day by

  • 3.9 percent for non-Hispanic white women;
  • 21 percent for Mexican-American women; and
  • 42.9 percent for Mexican-American women who speak primarily Spanish and report getting folic acid exclusively from eating cereal grain products that have been enriched, such as bread, pasta and corn grits (in other words, no consumption of folic acid-containing vitamin supplements or ready-to-eat breakfast cereals).

For more information about folic acid and neural tube defects, please visit

Key Resources

CDC Launches Online Portal for Birth Defects Surveillance Toolkit

Birth Defects COUNT is excited to announce the availability of an online portal for the previously developed Birth Defects Surveillance Toolkit. The toolkit was developed by CDC in collaboration with the World Health Organization and the International Clearinghouse for Birth Defects Surveillance and Research. It offers technical assistance to help countries initiate or enhance birth defects surveillance systems, which can provide accurate data to inform prevention activities. The toolkit includes a birth defects surveillance manual, photo atlas, and facilitator’s guide to be used in birth defects surveillance workshops.

The online portal features web versions of the core toolkit materials and additional resources, such as PowerPoint presentations and other training materials. It will be updated periodically with other items, such as webinars, tutorials, and more. The availability of these user-friendly resources will help Birth Defects COUNT increase its reach by empowering public health professionals trained through CDC’s birth defects surveillance workshops to train other professionals in their countries.

CDC Publishes New Study: The Promotora de Salud Model Promotes Positive Health Behavior Change

The Journal of Women’s Health published a new study that examines the use of the Promotora de Salud model for educating Hispanic women about folic acid. In this study, CDC researchers and other scientists found that small group education sessions and one-on-one connections between promotoras and Hispanic women in the communities they serve can help to increase awareness, knowledge, and consumption of folic acid. These findings can inform public health officials who may want to develop programs to help prevent neural tube defects in Hispanic communities.

Researchers conducted a training with promotoras from one county in each of the four U.S. states with large populations of Hispanic women: North Carolina, Florida, Texas, and Illinois. The promotoras learned why it is important for women of reproductive age to consume folic acid, and they received materials to use during education sessions with women in their communities.

This study showed the positive impact that the Promotora de Salud model can have on knowledge and behavior change, which can improve health outcomes. This model can help organizations successfully reach Hispanic women of reproductive age in a culturally appropriate manner. Read more

CDC Study Describes the Prevalence of Neural Tube Defects Globally

The journal, PLOS ONE, published a study describing the birth prevalence of neural tube defects in many countries and gaps in available data on neural tube defects worldwide. In this study, researchers found that less than half of the 194 Member States of the World Health Organization (WHO) had any data on the prevalence of neural tube defects in their countries. Estimates of neural tube defects varied widely among the countries that collected data. Knowing the true burden of neural tube defects can help countries take steps to prevent them, such as encouraging women to take folic acid-containing vitamin supplements and fortifying certain foods with folic acid, and can help countries assess the impact of prevention strategies.

The findings from this study can be used by public health professionals to establish or strengthen the monitoring of neural tube defects in their countries. Read more

Emory University Researchers Publish New Study on Global Folic Acid Fortification Researchers with Emory University’s Center for Spina Bifida Prevention and the Food Fortification Initiative, key partners of Birth Defects COUNT, published a new study in Birth Defects Research Part A: Clinical and Molecular Teratology. The study found that in 2016 an estimated 35,500 babies – an average of 97 a day – were born without neural tube defects in 58 countries that had implemented mandatory programs to fortify flour with folic acid. The research also notes that this figure only represents 13.2% of all neural tube defects that could be prevented globally, highlighting the need for expanded prevention efforts. Read more  Top of Page