Birth Defects Surveillance Guidelines

Click here for revised descriptions of birth defects and data elements

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

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)

  © 2016, National Birth Defects Prevention Network