Children and Youth with Special Health Care Needs Program Birth Defect Prevention and Surveillance System

The Wisconsin Birth Defect Prevention and Surveillance Program is responsible for implementing Wisconsin Statute 253.12 (exit DHS) which was enacted in May 2000. This statute calls for the establishment of a confidential birth defects registry comprised of birth defects found in children from birth to two years of age who are diagnosed or treated in Wisconsin by a physician, pediatric specialty clinic or hospital. Reportable conditions occur prior to or at birth and require medical/surgical intervention or interfere with normal growth and development.

• Statute 253.12 defines a birth defect as a structural deformation, disruption, or dysplasia or a genetic, inherited, or biochemical disease.
• As mandated by Statute 253.12, the Council on Birth Defect Prevention and Surveillance was formed to advise the Secretary of the Department of Health Services on all aspects of the establishment of the registry.  The membership is diverse and represents multiple perspectives on birth defects surveillance.
• The administrative rules process was completed and the rules, Chapter DHS 116, (exit DHS) took effect on April 1, 2003.
• The program received a grant from the Centers for Disease Control and Prevention (CDC) to support the establishment of a birth defects registry.  The Wisconsin Birth Defects Registry (WBDR) was developed and piloted in 2003-2004 and rolled out statewide in the summer of 2004.
• The legislation requires a report to the legislature be submitted every two years. The most recent report was completed in June of 2012 (PDF, 928 KB).

Wisconsin Birth Defects Registry (WBDR)

The WBDR is a secure web-based reporting system.  There are three reporting options:

• A paper form (DPH 40054) may be submitted
• An approved reporter may enter reports one at a time on a secure website
• A reporting site may upload multiple reports from their electronic patient record system to the secure website

All reporters who use the website must sign a user agreement and are given a copy of the WBDR Security and Confidentiality Policy document. Reporters can only view reports submitted by their organization. Only the WBDR state administrator in the Bureau of Community Health Promotion at DHS can view all reports.

Publications

Wisconsin Birth Defects Registry 2007 Annual Report, PPH 40150 (publication date: 01/08) (PDF, 576 KB)
Wisconsin Birth Defects Surveillance (publication date: 01/09) (PDF, 149 KB)
Behavioral Risk Factor Surveillance System: Folic Acid Module (publication date: 01/09) (PDF, 106 KB)

WBDR Forms

• Wisconsin Birth Defects Registry Paper Form, DPH 40054 (revised 12/03) (PDF, 188 KB)
• Wisconsin Birth Defects Registry User Agreement, DPH 40056 (revised 12/03) (PDF, 21 KB) 
• Wisconsin Birth Defects Registry Security and Confidentiality Policy, PPH 40078 (revised 12/03) (PDF, 229 KB) 
• Wisconsin Birth Defects Registry Parent Permission Form, DPH 40057 (revised 12/03) (PDF, 32 KB) Sample only: Reporters are responsible for developing their own forms for obtaining parent permission

WBDR Training Information

• Training and Reference Materials (revised 11/04) (PDF, 625 KB) 
• Frequently Asked Questions (revised 7/05) (PDF, 66 KB)

See the following links for more information about this program:

• What is Birth Defects Surveillance?
• Overview of Wisconsin Statute 253.12
• Council on Birth Defect Prevention and Surveillance (exit DHS)
• CDC Birth Defects Grant Activities

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Last Updated: September 19, 2012