Rutkowski Rachel E, Salemi Jason L, Tanner Jean Paul, Anjohrin Suzanne B, Correia Jane A, Watkins Sharon M, Kirby Russell S
J Registry Manag. 2015 Fall;42(3):91-102.
The Florida Birth Defects Registry (FBDR) relies predominantly on a statewide, population-based, passive surveillance system constructed by linking together multiple administrative and clinical databases. With funding limitations and data restrictions a reality in public health, it is imperative for disease registries to have ongoing evaluation of existing and new data sources. This study quantifies the impact of expanding the FBDR case ascertainment net to include infant death certificates (IDCs) and emergency department (ED) discharge data on the reported prevalence of birth defects.
Between 2008 and 2011, the FBDR identified cases using various data sources: inpatient and outpatient discharge data (2008-2011), Regional Perinatal Intensive Care Center data (2008), Early Steps program data (2008), IDCs (2009-2011), and ED data (2010-2011). Using hypothetical reconstructions of the FBDR, we examined the overall and unique contribution of each data source in identifying infants with birth defects. This permitted evaluation of a changing FBDR data source mix during the 4-year study period. The effect of adding both IDCs and ED data was investigated by constructing the 2010-2011 FBDR with and without these data sources, and then comparing frequencies and prevalence rates across each scenario. Analyses were conducted for all FBDR cases and for specific birth defect categories; improvements in ascertainment were assessed across sociodemographic and perinatal characteristics.
Overall, IDCs captured 3.4% of all infants with at least 1 birth defect studied, ED data captured 3.9% of the cases, and together the 2 data sources captured 7.2%. However, IDCs uniquely identified 0.8% of all cases, ED data uniquely identified 0.7% of all cases, and collectively they identified only 1.4% of cases that would otherwise have been missed. The unique contribution of IDC and ED data to case identification varied by defect and across sociodemographic and perinatal subgroups, with the largest impact among infants with anencephalus (64.7%), trisomy 13 (52.0%), trisomy 18 (22.2%), and encephalocele (13.3%), or those who were born weighing less than 1,500 grams or less than 32 weeks' gestation, or whose mothers' education was eighth grade or less.
Although their unique contribution is small when all defects are considered together, IDCs and ED data contribute cases that would otherwise have been disproportionately lost and are thus an important addition to surveillance activities. The FBDR continues to strive to create a comprehensive, accurate, and efficient statewide birth defects surveillance system.
佛罗里达出生缺陷登记处（FBDR）主要依赖于一个全州范围的、基于人群的被动监测系统，该系统通过将多个行政和临床数据库连接在一起构建而成。由于资金限制和数据限制是公共卫生领域的现实情况，疾病登记处必须对现有和新的数据来源进行持续评估。本研究量化了扩大FBDR病例确定网络以纳入婴儿死亡证明（IDC）和急诊科（ED）出院数据对出生缺陷报告患病率的影响。
在2008年至2011年期间，FBDR使用各种数据源识别病例：住院和门诊出院数据（2008 - 2011年）、区域围产期重症监护中心数据（2008年）、早期干预项目数据（2008年）、IDC（2009 - 2011年）以及ED数据（2010 - 2011年）。通过对FBDR进行假设性重建，我们研究了每个数据源在识别出生缺陷婴儿方面的总体和独特贡献。这使得能够评估4年研究期间FBDR数据源组合的变化情况。通过构建包含和不包含这些数据源的2010 - 2011年FBDR，然后比较每种情况的频率和患病率，研究了添加IDC和ED数据的效果。对所有FBDR病例和特定出生缺陷类别进行了分析；根据社会人口统计学和围产期特征评估了病例确定方面的改进情况。
总体而言，IDC涵盖了所有至少有1种所研究出生缺陷的婴儿中的3.4%，ED数据涵盖了3.9%的病例，这两个数据源共同涵盖了7.2%的病例。然而，IDC单独识别出所有病例中的0.8%，ED数据单独识别出所有病例中的0.7%，它们共同仅识别出了否则会被遗漏的病例中的1.4%。IDC和ED数据对病例识别的独特贡献因缺陷以及社会人口统计学和围产期亚组而异，在无脑儿（64.7%）、13三体综合征（52.0%）、18三体综合征（22.2%）和脑膨出（13.3%）的婴儿中，或出生体重低于1500克或孕周小于32周的婴儿中，或其母亲教育程度为八年级及以下的婴儿中影响最大。
尽管当综合考虑所有缺陷时它们的独特贡献较小，但IDC和ED数据提供了否则会不成比例地遗漏的病例，因此是监测活动的重要补充。FBDR继续努力创建一个全面、准确和高效的全州出生缺陷监测系统。
