PROVIDERS: Must Inform Parents of Right to Refuse Registering in Wisconsin Birth Defects Registry

Opt-out option begins July 1, 2018

June 15, 2018

The Wisconsin Birth Defects Registry (WBDR) was created under state law to collect demographic, diagnostic, and identifying information for children born with specific birth defects. Physicians and pediatric specialty clinics are mandated to report this information from birth to two years of age to the Department of Health Services’ (DHS) Wisconsin Birth Defects Prevention and Surveillance Program. Parents then receive a letter from DHS, a fact sheet about the WBDR, and regional centers for Children and Youth with Special Health Care Needs (CYSHCN) brochures in English and Spanish. There are five regional centers in Wisconsin that provide information and referrals to help connect families of children with special needs to needed supports and services.

What changes July 1: When the WBDR was created, it was necessary to get parent or guardian consent to submit identifying information (names, addresses) to the registry. The law was changed in late 2017 so identifying information is now automatically required with every submitted report—unless the parent or guardian child states in writing they refuse to release the child’s name and address. DHS will implement this change starting July 1, 2018. You must notify parents and guardians of their right to refuse releasing their child’s name and address to the registry. Retain this refusal documentation when you submit your report to the WBDR. This documentation must be retained for a minimum of three years in accordance with hospital/clinic policy. A sample refusal form (Wisconsin Birth Defects Registry – Request to Remove Identifiers) is available from DHS in both English and Spanish.

Contact DHS’ Wisconsin Birth Defects Registry help line at 608-267-2911 or by email at if you have questions. DHS also has a variety of information, including fact sheets and registry information for providers, on its
Birth Defect Prevention and Surveillance webpage. Learn more about Wisconsin’s Children and Youth with Special Health Care Needs regional centers.

This story originally appeared in the June 15, 2018 edition of WHA Newsletter