EUROlinkCAT protocol for a European population-based data linkage study investigating the survival, morbidity and education of children with congenital anomalies. Issue 6 (28th June 2021)

• Record Type: Journal Article
• Authors: 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
• Other Names: author non-byline.; Reid Abigail author non-byline.; Limb Liz author non-byline.; Briggs Gillian author non-byline.; Connor Nicholas author non-byline.; Urhoj Stine Kjaer author non-byline.; Damkjær Mads author non-byline.; Pedersen Christina Neergaard author non-byline.; Glinianaia Svetlana V author non-byline.; Astolfi Gianni author non-byline.; Armaroli Annarita author non-byline.; Ballardini Elisa author non-byline.; Puccini Aurora author non-byline.; Boban Ljubica author non-byline.; Santoro Michele author non-byline.; Coi Alessio author non-byline.; Baldacci Silvia author non-byline.; Mezzasalma Lorena author non-byline.; Renée Lutke L author non-byline.; Siemensma-Mühlenberg Nicole H A author non-byline.; Tucker David author non-byline.; Khoshnood Babak author non-byline.; Bertille Nathalie author non-byline.; Lelong Nathalie author non-byline.; Rahshenas Makan author non-byline.; Carbonell Clara Cavero author non-byline.; Zurriaga Óscar author non-byline.; Bonet Laia Barrachina author non-byline.; García Villodre Laura author non-byline.; Jamry-Dziurla Anna author non-byline.; Heino Anna author non-byline.; Kiuru-Kuhlefelt Sonja author non-byline.; Gissler Mika author non-byline.; Wertelecki Wladimir author non-byline.; Yevtushok Lyubov author non-byline.; Zymak-Zakutnia Nataliia author non-byline.; Akhmedzhanova Diana author non-byline.; Ostapchuk Lyubov author non-byline.; Tsizh Oksana author non-byline.; Lapchenko Serhii author non-byline.; Dias Carlos Matias author non-byline.; Machado Ausenda author non-byline.; Santos Ana João author non-byline.; Antunes Liliana author non-byline.; Braz Paula author non-byline.; Randrianaivo-Ranjatoelina Hanitra author non-byline.; Thys Guy author non-byline.; Nelen Vera author non-byline.; Hond Elly Den author non-byline.; Carollo Olatz Mokoroa author non-byline.; Thayer Daniel author non-byline.; Scanlon Ieuan author non-byline.; Jordan Sue author non-byline.; Klungsøyr Kari author non-byline.; Gatt Miriam author non-byline.;
• Is Part Of: BMJ open. Volume 11:Issue 6(2021)
• Publication Date: 2021-06-28
• Subjects: paediatrics -- statistics & research methods -- epidemiology; Medicine -- Research -- Periodicals; 610.72
• DOI: 10.1136/bmjopen-2020-047859
• Languages: English
• ISSNs: 2044-6055

Abstract

Abstract : 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.