Wisconsin Birth Defects Registry (WBDR)

WBDR is a registry that collects disease-based or exposure-based data on individuals from a defined population. It is a tool for surveillance and research to better understand the disease or exposure of interest. The registry can help identify:

• An estimate of how often a disease occurs.
• Where the disease appears more often.
• Risk factors and demographics.
• Trends over time.

WBDR was developed in 2000. The registry staff monitor cases as they are reported. Physicians, hospitals, or pediatric specialty clinics are required by Wis. Stat. § 253.12 to report this to the registry.

There are many ways to define birth defects and thousands of different birth defects, but the WBDR uses the definition outlined in statute.

Wisconsin Stat. § 253.12(1)(a) defines a birth defect as a "structural deformation, disruption or dysplasia" or "a genetic, inherited, or biochemical disease" that occurs prior to or at birth and that requires medical or surgical intervention or interferes with normal growth and development.

A list of reportable conditions can be found on the paper reporting form, F-40054 (PDF) and on this WBDR fact sheet, P-03419 (PDF).

The WBDR collects information on 64 birth defects. The list of reportable conditions can be found on this WBDR fact sheet, P-03419 (PDF) is developed by the Council on Birth Defect Prevention and Surveillance. Each birth defect on this list:

• Conforms to the statutory definition of a birth defect.
• Is usually identifiable by 2 years of age.
• Is a major anomaly (having medical, surgical, or developmental significance).
• Occurs with sufficient frequency (one in 30,000 births); in Wisconsin, this is about two cases per year.
• Is likely to be ascertained through assessment in one or more specialty clinics.

The information gathered by the WBDR may be used to:

• Estimate the rate of some birth defects.
• Alert the Department of Health Services to any changes in birth defect rates.
• Investigate any suspected cluster of birth defects in a geographic area.
• Inform policy and planning purposes.
• Refer children and families to services.
• Study how to prevent birth defects.

A parent or guardian can choose to have names and addresses of the child and parents or guardians removed from WBDR at any time.

The parent or guardian can complete Form F-40054A and return it to the reporting hospital, clinic, or provider where the child’s birth defect was diagnosed or treated. The organization will remove the names and addresses from WBDR and save a copy of the form.

WBDR is in the Wisconsin Electronic Disease Surveillance System (WEDSS), which is a secure web-based system.

Access to WBDR is restricted. Those using the website to report a disease or condition must review the WBDR Security and Confidentiality Policy document and sign a user agreement. Those with access to WEDSS to report a disease or condition can only see their cases.

Email dhswbdr@dhs.wisconsin.gov with questions.

According to Wis. Stat. § 253.12, physicians and pediatric specialty clinics who diagnose and/or treat a child under the age of 2 with a birth defect are mandated to report on birth defects.

Health care systems and hospitals may report on behalf of physicians and/or pediatric specialty clinics they are affiliated with.

There are a few ways that reports can be submitted in the WBDR:

• A paper form, F-40054 (PDF) may be submitted.
• Reports can be entered one at a time directly into WBDR.
• Multiple reports may be uploaded at the same time into a secure website.
• All reporters who use the website must review the WBDR Security and Confidentiality Policy document and sign a user agreement. Reporters can only view reports submitted by their organization.

At this time, no, WBDR cannot accept birth defects reporting directly from a hospital’s electronic patient records system.

Although, health systems can work with their information technology staff to pull the required data points out of their system and into WBDR.

WBDR staff can work with health systems to set up this report and support procedure development on regular reporting into WBDR.

It is more efficient to delegate one staff person at the hospital or health system to report directly into WBDR or to work on developing a report with information technology to report on behalf of all the providers.

However, if you would prefer your physicians do it individually, that is perfectly appropriate, and they should contact dhswbdr@dhs.wisconsin.gov to request access.

Reach out to the WBDR state administrator at dhswbdr@dhs.wisconsin.gov.

You have to log in and change your password at least once every three months.

If you are unable to log in, you will need to reach out to the WBDR state administrator at dhswbdr@dhs.wisconsin.gov.

Wisconsin Stat. § 253.12 requires physicians and pediatric specialty clinics who diagnose and/or treat a child under the age of 2 with birth defects.

A child born at home would be reported to WBDR when they are transferred to a specialty and/or pediatric provider.

If a provider at a birthing hospital has diagnosed a birth defect or is providing treatment for a birth defect on a baby or child under age 2, they should report the case to WBDR.

The WBDR state administrator works to remove duplicate reports.

If the birth defect was never present, contact the WBDR administrator (dhswbdr@dhs.wisconsin.gov) who will delete the report.

If the diagnosis changes, the reporter should enter WBDR and edit the original record to accurately reflect the current diagnosis.

No, however, Wis. Stat. § 253.12 mandates that that state provide information about available referral services. A letter is sent to the parent or guardian sharing information about Wisconsin Wayfinder and the Children’s Resource Centers.

No, you do not need to submit another report.

No, elective terminations are not reported to the WBDR.

Yes, stillbirths are captured in WBDR if the fetus is 20 weeks gestation or older and a reportable condition is diagnosed.

Miscarriages that occur before 20 weeks gestation are not captured by WBDR. If an infant is born alive and dies after the birth, and they have a reportable condition, they should be reported to WBDR.

Yes, you need to report every case.

There are multiple opportunities in WBDR to add comments or context to the reports through text boxes and notes fields.

At any point in time, a parent or guardian can choose to have identifiers (names and addresses of the child and parents or guardians) removed from the record. Form F-40054A (PDF) must be completed and returned to the reporting organization (hospital, clinic, or provider).

If the form is completed prior to the case being reported in WBDR, the identifiers should be removed at that time. If the form is completed after the report has been made, the hospital, clinic, or provider should go into WBDR to remove the identifying information and save a copy of the form.

Yes, if a baby was diagnosed and/or treated for a birth defect in a Wisconsin, the diagnosing or treating provider is required to report into the WBDR.

Yes, if a child is under 2 years of age and being treated for a birth defect in Wisconsin, the treating provider is required to report it into the WBDR.

No, treating and/or diagnosing providers that do not work in Wisconsin are not required to report into the WBDR.