Birth Defects Registry and Surveillance - Florida Department of Health

The Florida Birth Defects Registry was established in 1999 as a passive statewide population-based birth defects surveillance system to protect and promote the health of people in Florida by detecting, investigating, and preventing birth defects.

More children and youth born with a disability are living longer with improved medical treatments enabling the management of long-term health problems.

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Every 4.5 minutes, a baby is born with a birth defect. They can have a serious, adverse effect on health, development, or functional ability.
In the U.S., one in 33 babies is born with a birth defect affecting about 120,000 babies each year.
A woman can take steps to reduce the risk, but not all birth defects can be prevented.
Birth defects are one of the leading causes of death in children less than one year of age – causing one in every five deaths.

Data and Research

The Florida Birth Defects Registry case criteria include:

Mother is a Florida resident
Infant is diagnosed, in the first year of life, with one or more structural, genetic, or other specified birth outcome that can adversely affect an infant’s health and development, primarily ICD10-CM codes in the 740-759.9 code range
Date of delivery is on or after January 1, 1998

Florida Laws

The legal authority to conduct birth defects surveillance is established in section 381.0031(1,2) Florida Statutes, list of reportable disease/conditions, and is defined in 64D-3.035, Florida Administrative Code.

Data Inquiries and Requests

The Florida Birth Defects Registry (FBDR) is the only data source in Florida where demographic, clinical, maternal and child health information is combined for analysis and reporting on the occurrence of birth defects. We understand the importance of developing evidence based, data driven policies and research initiatives.

If you are interested in using registry data, please email FBDR@FLHealth.gov with completed:

FBDR Data Use Agreement Form
Vital Records Data Use Agreement (approved copy)
Agency for Health Care Administration Data Use Agreement (approved copy)
When necessary, the DOH Institutional Review Board (IRB) application may also need to be provided.

Florida Birth Defect Registry research data file data dictionary shows the most commonly used research data elements.