Birth Defect Prevention and Surveillance

WCYSHCN people

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.

Changes to Statute 253.12

  • In September of 2017, the original birth defects legislation and rules were updated. The original legislation required parent permission to submit identifiers to the WBDR which resulted in most organizations unable to submit identifiers because of the administrative burden of obtaining and documenting parent permission. (Identifiers include name and address of child and parents.) That requirement was removed in 2017. All organizations will be able to submit identifiers with all of their birth defects reports beginning July 1, 2018. Inclusion of identifiers allows DHS to determine: if duplicate records are submitted; if families are receiving appropriate services; if the number and type of birth defects present are increasing/decreasing; if environmental risk factors are responsible for certain birth defects, or clusters of birth defects; if prevention activities are warranted and effective; and if Wisconsin has the same type and number of birth defects as national estimates would indicate. Parents or guardians can request identifiers be removed from the WBDR at any time. This is consistent with other newborn screening applications administered by DHS.
  • The revised legislation also streamlines the process of adding or removing WBDR reportable conditions.  (The current list is available on the last page of the paper reporting form DPH F-40054.) The Council on Birth Defects Prevention and Surveillance will be responsible for developing criteria and a process for making changes.

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) 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 has five Regional Centers for Children and Youth with Special Health Care Needs that can help families get answers, find services, and connect with community resources. Their services are free and private.

Last Revised: June 1, 2018