Birth Defect Prevention and Surveillance System--Children and Youth with Special Health Care Needs (CYSHCN)

WCYSHCN people

Birth Defect Prevention and Surveillance System

Promoting quality care for children and youth with special health care needs in Wisconsin.

The Wisconsin Birth Defect Prevention and Surveillance Program is responsible for implementing Wisconsin Stat. §253.12 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,  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, Wisconsin Birth Defect Prevention and Surveillance Program 2016 Report to the Legislature (publication date 02/17) P-00838 (PDF), was completed in February of 2017.

Wisconsin Birth Defects Registry (WBDR)

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

  • A paper form (DPH F-40054) (PDF) 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.

WBDR Forms and Publications

Wisconsin Birth Defects Registry Paper Form (revised 12/03) F-40054 (PDF)

Wisconsin First Step
Information and links to services for children and youth with special needs, their families and providers. Call 800-642-7837 to speak with a parent specialist. Information is available on services such as Birth to 3/early intervention, financial assistance, parent networking and support, home health care, therapy services, CYSHCN Regional Centers and more.

Maternal and Child Health (MCH) Hotline
Information and links to services for pregnant and postpartum women and children. Call 800-722-2295 for information on BadgerCare Plus, WIC, HealthCheck, maternal depression, Prenatal Care Coordination, family planning, developmental screenings, and more.

Last Revised: August 10, 2017