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 email@example.com.Click here for revised descriptions of birth defects and data elementsTitle, Reference and AcknowledgementTable of ContentsIntroductionChapter 1 The Whys and Hows of Birth Defects Surveillance – Using DataChapter 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 MethodsChapter 9 Data Management and SecurityChapter 10 Data Collaboration and Dissemination through the NBDPNChapter 11 Data Presentation Chapter 12 Inclusion of Prenatal Diagnoses in Birth Defects SurveillanceComplete Manual
National Standards for Birth Defects Surveillance
The National Birth Defects Prevention Network (NBDPN) has developed 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, and to facilitate data use that benefits public health.
National standards on data quality and data utility for birth defects surveillance can be found below:
- Background on the development and implementation of data quality standards for population-based birth defects surveillance
- Data Quality Assessment Tool
- Data Utilization Assessment Tool
Overall summary results from the population-based birth defects program self-assessment are located below:
- 2022 Birth Defects Surveillance Systems: NBDPN Data Quality Assessment Report Summary
- 2019 Birth Defects Surveillance Systems: NBDPN Data Quality Assessment Report Summary
The NBDPN will continue to conduct ongoing assessment of data quality performance measures and national standards on data utility and welcome your input. Comments and questions can be sent to firstname.lastname@example.org.