Creating a population-based cohort of children born with and without congenital anomalies using birth data matched to hospital discharge databases in 11 European regions: Assessment of linkage success and data quality

Article Public, Environmental & Occupational Health

Accuracy of congenital anomaly coding in live birth children recorded in European health care databases, a EUROlinkCAT study

Marian K. Bakker et al.

Summary: Electronic health care databases are increasingly used to investigate the epidemiology of congenital anomalies (CAs), but concerns about their accuracy remain. The EUROlinkCAT project compared the coding of CAs in electronic hospital databases to the codes in EUROCAT registries. The study found that hospital databases had high accuracy for certain CAs, but incomplete and variable validity for others. This highlights the importance of CA registries as the most appropriate data source for studying the epidemiology of CAs.

EUROPEAN JOURNAL OF EPIDEMIOLOGY (2023)

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Article Pediatrics

Multijurisdictional Analyses of Birth Defects: Considering the Common Data Model Approach

Suzanne M. Gilboa et al.

PEDIATRICS (2022)

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Article Pediatrics

Ten-Year Survival of Children With Congenital Anomalies: A European Cohort Study

Svetlana Glinianaia et al.

Summary: This study investigates the survival up to age 10 for children born with major congenital anomalies in Europe from 2005 to 2014. The study finds that children with isolated structural anomalies have relatively high survival rates, while the survival rates for children with Down syndrome are associated with the presence of other anomalies.

PEDIATRICS (2022)

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Article Multidisciplinary Sciences

Linking a European cohort of children born with congenital anomalies to vital statistics and mortality records: A EUROlinkCAT study

M. Loane et al.

Summary: In the EUROlinkCAT study, 18 registries with data on 192,862 children born with congenital anomalies participated, showing that linkage to vital statistics can provide accurate estimates of survival of children with CA in some European countries. However, bias may arise when linkage is not successful, particularly for early neonatal deaths.

PLOS ONE (2021)

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Article Medicine, General & Internal

EUROlinkCAT protocol for a European population-based data linkage study investigating the survival, morbidity and education of children with congenital anomalies

Joan K. Morris et al.

Summary: The EUROlinkCAT study investigates the health and educational outcomes of children with congenital anomalies in their first 10 years of life, using a European network of registries to link data and perform meta-analyses. The study aims to provide evidence to improve healthcare and reduce health inequalities in Europe.

BMJ OPEN (2021)

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Article Pediatrics