NCBDDD Birth Defects Surveillance Toolkit

NCBDDD Birth Defects Surveillance Toolkit  In low and middle resource countries, birth defects (BD) account for a large percentage of infant mortality; however, because BD surveillance is either not done at all or the data are questionable, this burden is often under-recognized. Not having comprehensive, accurate data makes it difficult to justify, develop, and implement BD prevention initiatives.

In collaboration with WHO and the International Clearinghouse for Birth Defects Surveillance and Research, a cross-Divisional working group from NCBDDD developed a comprehensive birth defects surveillance toolkit in an effort to provide countries with a suite of training tools that they could utilize to initiate or enhance a BD surveillance program. The toolkit includes a manual for setting up birth defects surveillance, a photo atlas to aid in classifying birth defects, a facilitator’s guide for use in train-the-trainer programs, a data collection form and database to ensure the standardized collection of relevant data, videos that explain the more difficult birth defect concepts in greater detail, and a series of narrated presentations supporting the manual and facilitator’s guide. Further, a participant workbook to accompany the manual was developed to provide users of the toolkit with a hands-on practical learning tool. The manual, data collection form, and atlas are currently available online in English, Spanish, and French (, which will serve to broaden their reach and use. Translation into additional languages is available upon request. The facilitator’s guide is currently under final editing at WHO and will be made available online soon.

Various components of the toolkit were recently published, and have been used as a guiding framework for birth defects surveillance trainings in South East Asia, Africa, and Latin America. Finally, a website that will house the toolkit with interactive components is currently in the final stages of development. This site will be located on the CDC server and linked to from partner websites. This will further serve to expand the credibility, reach and utilization of the toolkit. For more information on the Toolkit, please contact Alina Flores at

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