Public Health Practice of Population-Based Birth Defects Surveillance Programs in the United States

Cara, T.; Kirby, Russell S.; Correa, Adolfo; Rosenberg, Deborah; Petros, Michael; Fagen, Michael C.

doi:10.1097/phh.0000000000000221

Cited by 20 publications

(19 citation statements)

References 13 publications

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“…Surveillance programs may differ in the extent to which severity of a clinical manifestation or objective assessment are used as criteria for inclusion in their database. Case ascertainment can encompass a spectrum of activities, such as (a) relying on vital records or passive reports from a limited number of data sources to seeking information actively from all possible data sources; (b) seeking information on live births only to seeking information on live births, still births, and pregnancy terminations; and (c) collecting data on birth defects only during the first year of life to collecting data on children with birth defects up to or beyond 2 years of age (Mai et al, ; Mai, Correa, et al, ). Approaches to case classification can vary from being based on information available from administrative datasets only to being based on diagnoses available from medical records with confirmatory objective tests or evaluations by clinical geneticists or dysmorphologists.…”

Section: Discussionmentioning

confidence: 99%

National population‐based estimates for major birth defects, 2010–2014

Cara

Isenburg

Canfield

et al. 2019

Birth Defects Research

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Background Using the National Birth Defects Prevention Network (NBDPN) annual data report, U.S. national prevalence estimates for major birth defects are developed based on birth cohort 2010–2014. Methods Data from 39 U.S. population‐based birth defects surveillance programs (16 active case‐finding, 10 passive case‐finding with case confirmation, and 13 passive without case confirmation) were used to calculate pooled prevalence estimates for major defects by case‐finding approach. Fourteen active case‐finding programs including at least live birth and stillbirth pregnancy outcomes monitoring approximately one million births annually were used to develop national prevalence estimates, adjusted for maternal race/ethnicity (for all conditions examined) and maternal age (trisomies and gastroschisis). These calculations used a similar methodology to the previous estimates to examine changes over time. Results The adjusted national birth prevalence estimates per 10,000 live births ranged from 0.62 for interrupted aortic arch to 16.87 for clubfoot, and 19.93 for the 12 critical congenital heart defects combined. While the birth prevalence of most birth defects studied remained relatively stable over 15 years, an increasing prevalence was observed for gastroschisis and Down syndrome. Additionally, the prevalence for atrioventricular septal defect, tetralogy of Fallot, omphalocele, and trisomy 18 increased in this period compared to the previous periods. Active case‐finding programs generally had higher prevalence rates for most defects examined, most notably for anencephaly, anophthalmia/microphthalmia, trisomy 13, and trisomy 18. Conclusion National estimates of birth defects prevalence provide data for monitoring trends and understanding the impact of these conditions. Increasing prevalence rates observed for selected conditions warrant further examination.

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Section: Discussionmentioning

confidence: 99%

National population‐based estimates for major birth defects, 2010–2014

Cara

Isenburg

Canfield

et al. 2019

Birth Defects Research

Self Cite

613

416

View full text Add to dashboard Cite

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“…The ability of birth defects surveillance programs to capture cases from all pregnancy outcomes is important, but capturing this data can be challenging. Whereas most systems capture both live births and fetal deaths, only approximately 40% are able to capture terminations of pregnancy (Mai et al, ). For some conditions, the lack of other pregnancy outcomes can greatly affect data completeness.…”

Section: Discussionmentioning

confidence: 99%

Population‐based birth defects data in the United States, 2008 to 2012: Presentation of state‐specific data and descriptive brief on variability of prevalence

Cara

Isenburg

Langlois

et al. 2015

Birth Defects Research

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“…10 In the United States, 43 states have a population-based surveillance system for birth defects, covering about 80% of live births. 29 In South America, in 1967, the Latin American Collaborative Study of Congenital Malformations (ECLAMC) was created to act as a research program for congenital anomalies and also as a system for epidemiological surveillance. The network currently consists of 35 hospitals in Chile, Argentina, Bolivia, Brazil, Peru, Venezuela and Colombia.…”

Section: Congenital Malformationsmentioning

confidence: 99%

Relationship of databases of live births and infant deaths for analysis of congenital malformations

Guimarães

Barbosa

Oliveira

et al. 2019

Rev. Bras. Saude Mater. Infant.

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Objectives: to describe the prevalence of congenital malformations in live births in Recife, based on the relationship of birth and infant death data. Methods: a cross-sectional study with data from the Live Birth Information System (Sinasc) and Mortality (MIS) of residents in Recife-PE between 2013 and 2015. The deterministic linkage of deaths and live births (LB) with malformation and the prevalence rate were calculated. Results: 545 (95.1%) deaths and live births were matched. According to the Sinasc, the prevalence of congenital malformations was 10.4 per 1,000 LB. After the linkage, the rate was 12.4. Malformations of the musculoskeletal system (42.1%) among live births were high-lighted, as well as malformations of the circulatory system (35.3%) found in infant deaths. Conclusions: linkage increased the prevalence of congenital malformations in the studied cohort. This demonstrates the potential of this strategy for the monitoring of congenital malformations, which can be used to monitor infant death.

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Public Health Practice of Population-Based Birth Defects Surveillance Programs in the United States

Cited by 20 publications

References 13 publications

National population‐based estimates for major birth defects, 2010–2014

National population‐based estimates for major birth defects, 2010–2014

Population‐based birth defects data in the United States, 2008 to 2012: Presentation of state‐specific data and descriptive brief on variability of prevalence

Relationship of databases of live births and infant deaths for analysis of congenital malformations

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