Birth Defects Surveillance Guidelines

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Guidelines for Conducting Birth Defects Surveillance
National Birth Defects Prevention Network

The technical guidelines in this document consist of a series of chapters covering the fundamental aspects of developing, planning, implementing, and conducting surveillance for birth defects and using the resulting data. They provide a way of improving the quality of birth defects surveillance data, which in turn enhances their use.

The Guidelines will be updated and revised over time. Whenever a revision is published, a revision date will appear in the chapter header to distinguish that page or pages from previous versions.

Comments and suggestions on this document are welcome. Submit comments to the Surveillance Guidelines and Standards Committee via e-mail at

Click here for revised descriptions of birth defects and data elements


Title, Reference and Acknowledgement

Table of Contents


Chapter 1 The Whys and Hows of Birth Defects Surveillance – Using Data

Chapter 2 Legislation

Chapter 3 Case Definition

Chapter 4 Data Variables (also called Data Elements)

Chapter 5 Classification and Coding

Chapter 6 Case Ascertainment Methods

Chapter 7 Data Quality Management

Chapter 8 Statistical Methods

Chapter 9 Data Management and Security

Chapter 10 Data Collaboration and Dissemination through the NBDPN

Chapter 11 Data Presentation

 Chapter 12 Inclusion of Prenatal Diagnoses in Birth Defects Surveillance


Complete Manual (7MB)

National Standards for Birth Defects Surveillance

The National Birth Defects Prevention Network (NBDPN) is developing standards for population-based birth defects surveillance in the United States. These standards are a priority for NBDPN in order to improve the quality and consistency of birth defects data to make it more useful at the local and national levels for a variety of purposes.


National standards on data quality for birth defects surveillance are now available. 

  • Background on the development and implementation of data quality standards for population-based birth defects surveillance
  • Data Quality Assessment Tool (2015 version)
  • Overall summary results from the 2015 population-based birth defects program self-assessment

The NBDPN will continue to conduct ongoing assessment of data quality performance measures and develop national standards on data utility. We welcome your input. Comments and questions can be sent to