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

Lookup NU author(s): Dr Svetlana Glinianaia, Professor Judith Rankin



This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).


Objectives:To investigate the survival up to age 10 years for children born alive with a major congenital anomaly.METHODs: This population-based linked cohort study (EUROlinkCAT) linked data on live births during 2005-2014 from 13 European congenital anomaly registries with mortality data. Pooled Kaplan-Meier survival estimates up to 10 years of age were calculated for these children (77,054 children with isolated structural anomalies and 4,011 children with Down syndrome).Results:The highest mortality of children with isolated structural congenital anomalies was within infancy, with survival of 97.3% (95% CI: 96.6-98.1) and 96.9% (95% CI: 96.0-97.7) at age 1 and 10 years, respectively. The 10-year survival exceeded 90% for the majority of specific congenital anomalies (27/32), with considerable variations between congenital anomalies of different severity. Survival of children with a specific isolated anomaly was higher than in all children with the same anomaly when those with associated anomalies were included. For children with Down syndrome, the 10-year survival was significantly higher for those without associated cardiac or digestive system anomalies (97.6%; 95% CI: 96.5-98.7) compared to children with Down syndrome associated with a cardiac anomaly (92.3%; 95% CI: 89.4-95.3), digestive system anomaly (92.8%; 95% CI: 87.7-98.2)or both (88.6%; 95% CI: 83.2-94.3).Conclusions: Ten-year survival of children born with congenital anomalies in Western Europe during 2005-2014 was relatively high. Reliable information on long-term survival of children born with specific congenital anomalies is of major importance for parents of these children and for the health care professionals involved in their care.

Publication metadata

Author(s): Glinianaia SV, Rankin J, Pierini A, Coi A, Santoro M, Tan J, Reid A, Garne E, Loane M, Given J, Cavero-Carbonell C, de Walle HEK, Gatt M, Gissler M, Heino A, Khoshnood B, Klungsøyr K, Lelong N, Neville AJ, Thayer DS, Tucker D, Urhøj SK, Wellesley D, Zurriaga O, Morris JK

Publication type: Article

Publication status: Published

Journal: Pediatrics

Year: 2022

Volume: 149

Issue: 3

Print publication date: 01/03/2022

Online publication date: 11/02/2022

Acceptance date: 11/11/2021

Date deposited: 30/11/2021

ISSN (print): 0031-4005

ISSN (electronic): 1098-4275

Publisher: American Academy of Pediatrics


DOI: 10.1542/peds.2021-053793


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Funder referenceFunder name
European Union’s Horizon 2020