EUROlinkCAT protocol for a European population-based data linkage study investigating the survival, morbidity and education of children with congenital anomalies
| Autor(a) principal: | |
|---|---|
| Data de Publicação: | 2021 |
| Outros Autores: | , , , , , , , , , , , , , |
| Tipo de documento: | Artigo |
| Idioma: | eng |
| Título da fonte: | Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
| Texto Completo: | http://hdl.handle.net/10400.18/7915 |
Resumo: | 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 |
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EUROlinkCAT protocol for a European population-based data linkage study investigating the survival, morbidity and education of children with congenital anomaliesPaediatricsEpidemiologyStatistics & Research MethodsEUROCATEuropean Surveillance of Congenital AnomaliesEuropePortugalObservação em Saúde e VigilânciaEstados de Saúde e de DoençaRENACRegisto Nacional de Anomalias CongénitasEUROlinkCAT 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 GattEUROlinkCAT Consortium: Carlos Matias Dias, Ausenda Machado, Ana João Santos, Liliana Antunes, Paula Braz (INSA, Portugal)Paediatrics - ProtocolIntroduction: 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.This project has received funding from the European Union’s Horizon 2020 Research and Innovation programme under grant agreement No 733001 for 5 years: 1 January 2017 to 31 December 2021. The views presented here are those of the authors only, and the European Commission is not responsible for any use that may be made of the information presented here.BMJ Publishing GroupRepositório Científico do Instituto Nacional de SaúdeMorris, Joan KGarne, EsterLoane, MariaBarisic, IngeborgDensem, JamesLatos-Bieleńska, AnnaNeville, AmandaPierini, AnnaRankin, JudithRissmann, Ankede Walle, HermienTan, JoachimGiven, Joanne EmmaClaridge, HughEUROlinkCAT Consortium2022-02-02T16:41:37Z2021-06-282021-06-28T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10400.18/7915engBMJ Open. 2021 Jun 28;11(6):e047859. doi: 10.1136/bmjopen-2020-0478592044-605510.1136/bmjopen-2020-047859info:eu-repo/semantics/openAccessreponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAP2023-07-20T15:42:15Zoai:repositorio.insa.pt:10400.18/7915Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-19T18:42:30.622569Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãofalse |
| dc.title.none.fl_str_mv |
EUROlinkCAT protocol for a European population-based data linkage study investigating the survival, morbidity and education of children with congenital anomalies |
| title |
EUROlinkCAT protocol for a European population-based data linkage study investigating the survival, morbidity and education of children with congenital anomalies |
| spellingShingle |
EUROlinkCAT protocol for a European population-based data linkage study investigating the survival, morbidity and education of children with congenital anomalies Morris, Joan K 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 |
| title_short |
EUROlinkCAT protocol for a European population-based data linkage study investigating the survival, morbidity and education of children with congenital anomalies |
| title_full |
EUROlinkCAT protocol for a European population-based data linkage study investigating the survival, morbidity and education of children with congenital anomalies |
| title_fullStr |
EUROlinkCAT protocol for a European population-based data linkage study investigating the survival, morbidity and education of children with congenital anomalies |
| title_full_unstemmed |
EUROlinkCAT protocol for a European population-based data linkage study investigating the survival, morbidity and education of children with congenital anomalies |
| title_sort |
EUROlinkCAT protocol for a European population-based data linkage study investigating the survival, morbidity and education of children with congenital anomalies |
| author |
Morris, Joan K |
| author_facet |
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 |
| author_role |
author |
| author2 |
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 |
| author2_role |
author author author author author author author author author author author author author author |
| dc.contributor.none.fl_str_mv |
Repositório Científico do Instituto Nacional de Saúde |
| dc.contributor.author.fl_str_mv |
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 |
| dc.subject.por.fl_str_mv |
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 |
| topic |
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 |
| 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 |
| publishDate |
2021 |
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2021-06-28 2021-06-28T00:00:00Z 2022-02-02T16:41:37Z |
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info:eu-repo/semantics/publishedVersion |
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info:eu-repo/semantics/article |
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http://hdl.handle.net/10400.18/7915 |
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http://hdl.handle.net/10400.18/7915 |
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eng |
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eng |
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BMJ Open. 2021 Jun 28;11(6):e047859. doi: 10.1136/bmjopen-2020-047859 2044-6055 10.1136/bmjopen-2020-047859 |
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BMJ Publishing Group |
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