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WP3 Deliverable D3.1: Report on survival and risk factors for survival for children born with a congenital anomaly

Authors: Judith Rankin, Svetlana Glinianaia, Anna Pierini, Michele Santoro, Alessio Coi, Maria Loane, Joanne Given, Joachim Tan, Abigail Reid, Joan Morris

Contributing participants and partners (in Beneficiary numerical order): Joachim Tan, Abigail Reid, Gillian Briggs, Joan Morris (SGUL), Maria Loane, Joanne Given, Katy Karnell, Joanne Watt (UU), Ester Garne, Stine Kjær Urhøj, Abdulfatah Adam (RSD), Svetlana Glinianaia, Judith Rankin (UNEW), Amanda Neville, Gianni Astolfi, Aurora Puccini, Annarita Armaroli (UNIFE), Ingeborg Barišic, Ljubica Odak (KDB), Anna Pierini, Alessio Coi, Michele Santoro (CNR-IFC), Hermien de Walle, Renée Lutke, Nicole Siemensma Mühlenberg (UMCG), David Tucker, Daniel Thayer, Ieuan Scanlon, Ting Wang, Sue Jordan (PHW NHS, SU), Babak Khoshnood, Nathalie Lelong, Nathalie Bertille (INSERM), Clara Cavero Carbonell, Sandra Moreno Marro, Laia Barrachina Bonet (FISABIO), Mika Gissler, Anna Heino, Sonja Kiuru-Kuhlefelt, Tuuli Puroharju (THL), Wladimir Wertelecki, Lyubov Yevtushok, Lyubov Ostapchuk, Diana Akhmedzhanova (OMNI NET), Anke Rissmann, Dorit Goetz (OVGU), Vera Nelen, Guy Thys, Carmen Franken, Elly Den Hond (PIH), Olatz Mokoroa Carollo (BIOEF), James Densem (BIOMED)

Lay Summary:

This part of the EUROlinkCAT project analysed the survival of children with a range of different congenital anomalies (also known as birth defects) during their first 10 years of life and some maternal and baby’s characteristics which were associated with survival. Fourteen participating European registries of congenital anomalies from twelve countries that are part of the European Surveillance of Congenital Anomalies (EUROCAT) collaboration, successfully linked their data on children with congenital anomalies born during 1995-2014 to their region’s mortality data. We found that reliable data on survival of these children could only be obtained if registry data were linked to national statistics rather than to data from death certificates. It was challenging to apply existing techniques to analyse the combined data so we developed new methods for data analysis. We found that survival of these children varied a lot between different European regions. Among children born with a single congenital anomaly, about 90-99 (depending on the European region) out of 100 children survived to 10 years of age. The presence of additional anomalies reduced survival. Younger mothers (aged less than 20 years), being born early, low weight at birth and social deprivation were associated with lower survival. Later years of birth (2005-2014 compared with 1995-2004) were associated with noticeably improved survival in these children.

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