Objective: We linked data from two independent birth defects surveillance systems with different case-finding methods in an overlapping geographic area to assess Florida's suveillance of birth defects (e.g., neural tube defects, orofacial clefts, gastroschisis/omphalocele, and chromosomal defects), focusing on sensitivity and completeness of ascertainment measures.
Methods: Live-born infants identified from each system born during 2003-2006 in a nine-county catchment area with specific birth defects were linked to birth certificates. Using the enhanced surveillance system as a gold standard, we calculated the sensitivity of the Florida Birth Defects Registry (FBDR) for identifying infants. Next, we used capture-recapture models to estimate the completeness of case ascertainment and the prevalence of each birth defect in the catchment area. We used multivariable logistic regression models with backward elimination to estimate adjusted odds ratios and 95% confidence intervals for factors significantly associated with the FBDR's failure to capture infants ultimately identified by enhanced surveillance.
Results: The FBDR's sensitivity was 89.3%, and the overall completeness of ascertainment was estimated as 86.6%. Defect-specific sensitivity and completeness of ascertainment varied significantly by defect. The combined defect-specific sensitivity for all malformations under study was 86.6%; completeness of ascertainment ranged from 45.6% for anencephaly to 88.6% for Down syndrome, 87.9% for spina bifida without anencephaly, and 87.0% for orofacial clefts.
Conclusions: For the defects under study, the FBDR captured nearly nine of every 10 infants born with selected birth defects. However, the FBDR's ability to identify specific defects was both more limited and defect dependent with widely varying defect-specific sensitivities.