A Comparison of Active and Passive Surveillance Strategies for Selected Birth Defects in New York

IF 1.6 4区医学 Q4 DEVELOPMENTAL BIOLOGY

Birth Defects Research Pub Date : 2024-09-05 DOI:10.1002/bdr2.2399

Meredith M. Howley, Eva Williford, Amanda M. St. Louis, Adrian M. Michalski, Marilyn L. Browne, Sarah C. Fisher

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引用次数: 0

Abstract

Background

The New York State Birth Defects Registry (BDR) has passive and active components. As part of statewide passive ascertainment, the BDR receives reports of International Classification of Diseases, Tenth Revision (ICD-10) codes and descriptive narratives on a wide range of birth defects. The BDR conducts enhanced active surveillance for selected birth defects in 14 counties, which includes medical record abstraction and clinician review. We sought to quantify agreement between the two surveillance approaches.

Methods

The analysis included live-born infants born with one of the 16 birth defects in 2018–2021 in the active surveillance counties (n = 1069 infants). We calculated positive predictive values (PPV) and 95% confidence intervals for each defect, defined as the percentage of cases confirmed in active surveillance among those in passive surveillance. Additionally, we calculated the percentage with each birth defect missed by passive surveillance.

Results

The PPV varied greatly by birth defect. The PPV was >90% for gastroschisis and cleft lip, but <70% for spina bifida, diaphragmatic hernia, truncus arteriosus, tricuspid atresia, hypoplastic left heart syndrome, coarctation of the aorta, and pulmonary atresia. The percentage missed by passive surveillance ranged from 2% for tetralogy of Fallot to 39% for tricuspid atresia.

Conclusions

Active surveillance is an important strategy for ruling out false positive case reports for certain birth defects that we assessed, but not all of them. Passive surveillance programs can use our findings to develop targeted strategies for improving data quality of specific birth defects using active surveillance methods, thus optimizing limited resources.

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纽约部分出生缺陷的主动和被动监测策略比较。

背景：纽约州出生缺陷登记处 (BDR) 包括被动和主动两部分。作为全州被动确定的一部分，BDR 接收有关各种出生缺陷的国际疾病分类第十版 (ICD-10) 代码和描述性叙述的报告。BDR 在 14 个县对选定的出生缺陷进行强化主动监测，包括病历摘录和临床医生审查。我们试图量化这两种监测方法之间的一致性：分析对象包括 2018-2021 年在主动监测县出生的患有 16 种出生缺陷之一的活产婴儿（n = 1069 名婴儿）。我们计算了每种缺陷的阳性预测值（PPV）和 95% 置信区间，其定义为主动监测确诊病例占被动监测病例的百分比。此外，我们还计算了被动监测遗漏的每种出生缺陷的百分比：不同出生缺陷的 PPV 差异很大。胃裂和唇裂的 PPV>90%，但结论：对于我们评估的某些出生缺陷，主动监测是排除假阳性病例报告的重要策略，但并非所有病例都是如此。被动监测项目可利用我们的研究结果制定有针对性的策略，利用主动监测方法提高特定出生缺陷的数据质量，从而优化有限的资源。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Birth Defects Research Medicine-Embryology

CiteScore

3.60

自引率

9.50%

发文量

153

期刊介绍： The journal Birth Defects Research publishes original research and reviews in areas related to the etiology of adverse developmental and reproductive outcome. In particular the journal is devoted to the publication of original scientific research that contributes to the understanding of the biology of embryonic development and the prenatal causative factors and mechanisms leading to adverse pregnancy outcomes, namely structural and functional birth defects, pregnancy loss, postnatal functional defects in the human population, and to the identification of prenatal factors and biological mechanisms that reduce these risks. Adverse reproductive and developmental outcomes may have genetic, environmental, nutritional or epigenetic causes. Accordingly, the journal Birth Defects Research takes an integrated, multidisciplinary approach in its organization and publication strategy. The journal Birth Defects Research contains separate sections for clinical and molecular teratology, developmental and reproductive toxicology, and reviews in developmental biology to acknowledge and accommodate the integrative nature of research in this field. Each section has a dedicated editor who is a leader in his/her field and who has full editorial authority in his/her area.