Development and Utility of a Birth Defects Surveillance Toolkit

According to the World Health Organization (WHO), an estimated 303,000 neonates die within their first month of age every year globally as a result of a birth defect. Neural tube defects, serious birth defects of the brain and spine, are among the most common and severe of these birth defects. Since some low- and middle-income countries lack comprehensive, accurate data documenting the burden of these defects, providing technical assistance to help build birth defects surveillance programs can accelerate the collection of data needed to demonstrate this burden and advance prevention initiatives. We developed a birth defects surveillance toolkit, a technical assistance tool for country staff to help them implement birth defects surveillance. An evaluation of the toolkit with partners in Africa was conducted to assess perceptions of the usefulness, effectiveness, and policy impact of the surveillance toolkit and surveillance-related technical assistance provided to countries thus far. Overall, respondents provided very positive feedback about the toolkit components. Recommendations for improvement included customization to country contexts, such as photos reflective of African babies; surveillance examples from other countries; and consistent use of terms.