Birth Defects Surveillance Guidelines (Archive July 2026)
Guidelines for Conducting Birth Defects Surveillance - National Birth Defects Prevention Network
*Please consult July 2026 Revised Guidelines for latest updates.
Title, Reference and Acknowledgement
Chapter 1 The Whys and Hows of Birth Defects Surveillance – Using Data
Chapter 2 Legislation
– Appendix 2.1 Sample State Legislation
– Appendix 2.2 Table of Birth Defects Legislation
– Appendix 2.3 Definitions Used to Determine Covered Entity Status Under the Privacy Rule
– Appendix 2.4 Office of Civil Rights (OCR) HIPAA Privacy Regulation Text
Chapter 3 Case Definition
– Appendix 3.1 Birth Defects Descriptions for NBDPN Core, Recommended, and Extended Conditions (this replaces old appendices 3.1 & 3.2) – Updated 3/2021
– Appendix 3.3 Examples of Conditions Considered to Be Minor Anomalies
– Appendix 3.4 Conditions Related to Prematurity in Infants Born at Less Than 36 Weeks Gestation
– Appendix 3.5 Case Inclusion Guidance for Potentially Zika-related Birth Defects
Chapter 4 Data Variables (also called Data Elements)
– Appendix 4.1 Descriptions of NBDPN Data Elements for Population-based Birth Defects Surveillance (this replaces old appendices 4.1 & 4.2) – Updated 3/2015
Chapter 5 Classification and Coding
– Appendix 5.1 Texas Disease Index
– Appendix 5.2 6-Digit CDC Codes – Updated 8/2007
Chapter 6 Case Ascertainment Methods
– Appendix 6.1 Data Source Described in Detail – Vital Records
– Appendix 6.2 Data Source Described in Detail – Hospital Data Sets
– Appendix 6.3 Data Source Described in Detail – Hospital and Patient Services Logs
– Appendix 6.4 Data Source Described in Detail – Genetic Services
Chapter 7 Data Quality Management
– Appendix 7.1 Data Sources Descriptive Assessment Tool
Chapter 9 Data Management and Security
Chapter 10 Data Collaboration and Dissemination through the NBDPN
Chapter 11 Data Presentation
– Appendix 11.1 Data Suppression
– Appendix 11.2 Use of Geographic Information Systems (GIS) to Map Data
– Appendix 11.3 Data Users Matrix
– Appendix 11.4 What Type of Chart or Graph Should I Use?
Chapter 12 Inclusion of Prenatal Diagnoses in Birth Defects Surveillance
– Appendix 12.1 Components for Incorporating Prenatal Diagnosis into Birth Defects Surveillance
– Appendix 12.2 Suggested List of Prenatal Diagnoses That Can Be Included in Prevalence Estimates Without a Clinician’s Review of the Defect Certainty
– Appendix 12.3 Suggested List of Data Variables to Collect for Prenatally Diagnosed Defects