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BACKGROUND: According to CDC, birth defects affect about one in every 33 babies born in the United States and are the leading cause of infant deaths. Babies born with birth defects have a greater chance of illness and long term disability than babies without birth defects. Birth defect reporting is mandated in Wisconsin per state statute 253.12. There are 87 reportable birth defects, a list developed by the Council on Birth Defect Prevention and Surveillance using specific criteria: (1) conforms to the statutory definition of a birth defect; (2) usually identifiable by 2 years of age; (3) has medical, surgical or developmental significance; (4) occurs at an estimated birth prevalence of 1 in 30,000 or more; and (5) is likely to be ascertained through assessment in one or more specialty clinics. Reporters can submit a paper form, enter one report at a time on the secure WBDR website, or upload a file of multiple reports derived from an electronic medical records (EMR) system. The first full year of data collection for the Wisconsin Birth Defects Registry (WBDR) was 2005.
METHODS: WBDR evaluation includes examining the number and type of birth defects reported, differences in the type of birth defects that tend to be reported in the first year after birth and in the second year after birth, changes over time over ten years, regional variations, and variations by type of submission. A Microsoft Excel file was created by the Developer/Analyst who supports the WBDR. The file was converted to a SAS file and all analyses were completed using SAS 9.3.
RESULTS: Reporting of genetic birth defects was originally the most complete. Now reporting of heart defects appears to be the most complete. Birth defects that are readily identifiable at birth are most likely to be reported – and reported immediately. Birth defects that are more difficult to identify and may need genetic testing to confirm are more likely to be reported in the second year. There is some regional variation in reporting. Uploading multiple records on a defined schedule results in the most complete reporting.
CONCLUSIONS: Working with providers by specialty type results in more reporting – implementation of critical congenital heart disease screening appears to have improved heart defect reporting. Continued outreach and education and continued emphasis on EMR reporting appears to be the route to more complete birth defects reporting.