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

Morris, Joan K; Garne, Ester; Loane, Maria; Barisic, Ingeborg; Densem, James; Latos-Bieleńska, Anna; Neville, Amanda; Pierini, Anna; Rankin, Judith; Rissmann, Anke; de Walle, Hermien; Tan, Joachim; Given, Joanne Emma; Claridge, Hugh; EUROlinkCAT Consortium

http://hdl.handle.net/10400.18/7915

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Authors

Latos-Bieleńska, Anna

Abstract(s)

Introduction: Congenital anomalies (CAs) are a major cause of infant mortality, childhood morbidity and long-term disability. Over 130 000 children born in Europe every year will have a CA. This paper describes the EUROlinkCAT study, which is investigating the health and educational outcomes of children with CAs for the first 10 years of their lives. Methods and analysis: EUROCAT is a European network of population-based registries for the epidemiological surveillance of CAs. EUROlinkCAT is using the EUROCAT infrastructure to support 22 EUROCAT registries in 14 countries to link their data on births with CAs to mortality, hospital discharge, prescription and educational databases. Once linked, each registry transforms their case data into a common data model (CDM) format and they are then supplied with common STATA syntax scripts to analyse their data. The resulting aggregate tables and analysis results are submitted to a central results repository (CRR) and meta-analyses are performed to summarise the results across all registries. The CRR currently contains data on 155 594 children with a CA followed up to age 10 from a population of 6 million births from 1995 to 2014. Ethics: The CA registries have the required ethics permissions for routine surveillance and transmission of anonymised data to the EUROCAT central database. Each registry is responsible for applying for and obtaining additional ethics and other permissions required for their participation in EUROlinkCAT. Dissemination: The CDM and associated documentation, including linkage and standardisation procedures, will be available post-EUROlinkCAT thus facilitating future local, national and European-level analyses to improve healthcare. Recommendations to improve the accuracy of routinely collected data will be made.Findings will provide evidence to inform parents, health professionals, public health authorities and national treatment guidelines to optimise diagnosis, prevention and treatment for these children with a view to reducing health inequalities in Europe.

Description

EUROlinkCAT Consortium: Abigail Reid, Liz Limb, Gillian Briggs, Nicholas Connor, Stine Kjaer Urhoj, Mads Damkjær, Christina Neergaard Pedersen, Svetlana V Glinianaia, Gianni Astolfi, Annarita Armaroli, Elisa Ballardini, Aurora Puccini, Ljubica Boban, Michele Santoro, Alessio Coi, Silvia Baldacci, Lorena Mezzasalma, L Renée Lutke, Nicole H A Siemensma-Mühlenberg, David Tucker, Babak Khoshnood, Nathalie Bertille, Nathalie Lelong, Makan Rahshenas, Clara Cavero Carbonell, Óscar Zurriaga, Laia Barrachina Bonet, Laura García Villodre, Anna Jamry-Dziurla, Anna Heino, Sonja Kiuru-Kuhlefelt, Mika Gissler, Wladimir Wertelecki, Lyubov Yevtushok, Nataliia Zymak-Zakutnia, Diana Akhmedzhanova, Lyubov Ostapchuk, Oksana Tsizh, Serhii Lapchenko, Carlos Matias Dias, Ausenda Machado, Ana João Santos, Liliana Antunes, Paula Braz, Hanitra Randrianaivo-Ranjatoelina, Guy Thys, Vera Nelen, Elly Den Hond, Olatz Mokoroa Carollo, Daniel Thayer, Ieuan Scanlon, Sue Jordan, Kari Klungsøyr, Miriam Gatt
EUROlinkCAT Consortium: Carlos Matias Dias, Ausenda Machado, Ana João Santos, Liliana Antunes, Paula Braz (INSA, Portugal)
Paediatrics - Protocol

Keywords

Paediatrics Epidemiology Statistics & Research Methods EUROCAT European Surveillance of Congenital Anomalies Europe Portugal Observação em Saúde e Vigilância Estados de Saúde e de Doença RENAC Registo Nacional de Anomalias Congénitas