National and State Resources for Data and Research on Birth Defects

The Florida Birth Defects Registry (FBDR) is one of over 30 states across the country to have a population-based birth defects surveillance program. The way in which each state counts infants with birth defects, their surveillance methodology, varies considerably. Also the birth defects each state considers and the data collected for each case also differs significantly.

Currently, the FBDR's statewide program uses passive surveillance methodology to identify infants with birth defects. Passive surveillance means that a program receives their information on infants with birth defects from existing data sources. In contrast, programs that use active surveillance send their staff to hospitals, medical facilities, clinics, laboratories, and other strategic data sources to find birth defects cases. Although the ability to find cases and the level of detail on each case can is often better for programs using active surveillance; however, the cost-per-case needed to run these systems is considerably higher. Regardless of the surveillance approach, every program can achieve a high level of data quality through quality assurance and quality improvement procedures.

Since 1999, the FBDR has monitored birth defects that are identified within the first year of life in live-born children of women who are Florida residents at the time of delivery. Cases are identified by collecting information from the (1) Florida Office of Vital Statistics birth records, (2) Agency for Health Care Administration (AHCA) hospital discharge data, (3) Children's Medical Services (CMS) Regional Perinatal Intensive Care Centers (RPICC) data, (4) CMS Early Steps Program data, and (5) CMS service-related data sets. Birth defect diagnoses are recorded using International Classification of Diseases, ninth edition, Clinical Modification (ICD-9-CM) codes. These data sets are merged to develop an unduplicated inventory of infants with birth defects in Florida.