Birth Defects Surveillance Guidelines

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 nbdpn@nbdpn.org.

Click here for revised descriptions of birth defects and data elements

 

Title, Reference and Acknowledgement

Table of Contents

Introduction

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 3/2015
• 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 8 Statistical Methods

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

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 standards@nbdpn.org.