Key Findings: Global Burden of Neural Tube Defects

Photo of baby looking at globe

The journal, PLOS ONE, has published a study describing the burden of neural tube defects in many countries and gaps in available data on neural tube defects worldwide. Neural tube defects, which are serious birth defects of the brain and spine that include anencephaly and spina bifida, are an important public health problem. They are often preventable if a woman gets enough folic acid before and during early pregnancy.

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 supplements (multivitamins and folic acid pills) and fortifying certain foods—and can help them 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 the scientific summary of the neural tube defects article ».

About This Study

This study is the most current review of the prevalence of neural tube defects globally. Researchers searched databases for English- and Spanish-language articles published between January 1990 and July 2014. This study included the most current articles that contained either a reported prevalence of neural tube defects or numbers that could be used to calculate the prevalence.

The review identified 160 studies with data from 75 countries. Researchers calculated the prevalence of neural tube defects and classified the results by WHO region and World Bank income level categories.

Main Findings From This Study

  • The study found a wide variation in the prevalence of neural tube defects among the WHO regions.
    • Eastern Mediterranean (ranging from 2.1 to 124.1 per 10,000 births)
    • Europe (ranging from 1.3 to 35.9 per 10,000 births)
    • Americas (ranging from 3.3 to 27.9 per 10,000 births)
    • South-East Asia (ranging from 1.9 to 66.2 per 10,000 births)
    • Western Pacific (ranging from 0.3 to 199.4 per 10,000 births)
  • Generally, neural tube defect monitoring systems were more common in countries with higher income level. In particular, researchers found limited data from systems within countries in the African and South-East Asian regions.

How Can Countries Build and Strengthen Their Birth Defects Monitoring Capacity?

This study shows a high prevalence of neural tube defects in many countries within all regions of the world. Neural tube defects remain an important, largely preventable public health problem. It also highlights the need for more complete and higher quality neural tube defect monitoring efforts.

To help countries build and strengthen their birth defects monitoring capacity and expand the availability of accurate birth defects data worldwide, CDC, WHO and the International Clearinghouse for Birth Defects Surveillance and Research have developed a toolkit for use primarily in low- and middle-resource countries. The toolkit includes

  • A manual on developing, implementing and improving a birth defects monitoring program;
  • A photo atlas to aid in classifying birth defects; and
  • A facilitator’s guide for use in training workshops.

CDC also has an interactive online portal that houses the toolkit products.

What are neural tube defects?
  • Neural tube defects are serious birth defects of the brain and spine.
  • The two most common neural tube defects are spina bifida (affects the spine) and anencephaly (affects the brain).
  • Neural tube defects happen during the first month of pregnancy, often before a woman knows she is pregnant.
  • Public health monitoring is the ongoing collection, analysis, interpretation, and reporting of health data for the purpose of preventing and controlling disease, injury, and other public health problems.
  • Monitoring data can be used to plan, implement, and evaluate strategies to improve health. Data can also be used to inform the decision-making process for preventing adverse health conditions.
  • Monitoring data can be used to determine if a public health program is effective. The data can also help identify populations that may need a more targeted intervention to improve their health.

Neural Tube Defects: Centers for Disease Control and Prevention (CDC) Activities

CDC’s National Center on Birth Defects and Developmental Disabilities is working with WHO and other partners on a global initiative, Birth Defects COUNT (Countries and Organizations United for Neural Tube Defects Prevention), to reduce death and lifelong disability due to neural tube defects. The three focus areas of Birth Defects COUNT are:

  1. Science. Develop and strengthen the ability of regions and countries to monitor birth defects, as well as develop and strengthen laboratory capacity to measure the amount of folate present in the blood.
  2. Partnership. Engage a global network of partners who are experts in conducting birth defects prevention programs, track birth defects, monitor blood folate concentrations and develop interventions programs to increase the amount of folic acid consumed by women of reproductive age.
  3. Policy. Educate decisions-makers on the science supporting fortification of staple foods with folic acid for preventing neural tube defects.

CDC’s activities support United Nations Millennium Development Goal 4, to reduce the death rate of children under the age of 5 years, and improve global efforts to prevent neural tube defects.

Key Findings Reference

Zaganjor I, Sekkarie A, Tsang BL, Williams J, Razzaghi H, Mulinare J, Sniezek JE, Cannon MJ, Rosenthal J. Describing the Prevalence of Neural Tube Defects Worldwide: A Systematic Literature Review. PLOS ONE. 2016 Apr 11; 11(4):e0151586.