Linking a European cohort of children born with congenital anomalies to vital statistics and mortality records: A EUROlinkCAT study.

EUROCAT is a European network of population-based congenital anomaly (CA) registries. Twenty-one registries agreed to participate in the EUROlinkCAT study to determine if reliable information on the survival of children born with a major CA between 1995 and 2014 can be obtained through linkage to na...

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Autores principales:	M Loane, J E Given, J Tan, A Reid, D Akhmedzhanova, G Astolfi, I Barišić, N Bertille, L B Bonet, C C Carbonell, O Mokoroa Carollo, A Coi, J Densem, E Draper, E Garne, M Gatt, S V Glinianaia, A Heino, E Den Hond, S Jordan, B Khoshnood, S Kiuru-Kuhlefelt, K Klungsøyr, N Lelong, L R Lutke, A J Neville, L Ostapchuk, A Puccini, A Rissmann, M Santoro, I Scanlon, G Thys, D Tucker, S K Urhoj, H E K de Walle, D Wellesley, O Zurriaga, J K Morris
Formato:	article
Lenguaje:	EN
Publicado:	Public Library of Science (PLoS) 2021
Materias:	Medicine R Science Q
Acceso en línea:	https://doaj.org/article/1268a025bf444663ae3263bef99d6df6
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spelling	oai:doaj.org-article:1268a025bf444663ae3263bef99d6df62021-12-02T20:19:25ZLinking a European cohort of children born with congenital anomalies to vital statistics and mortality records: A EUROlinkCAT study.1932-620310.1371/journal.pone.0256535https://doaj.org/article/1268a025bf444663ae3263bef99d6df62021-01-01T00:00:00Zhttps://doi.org/10.1371/journal.pone.0256535https://doaj.org/toc/1932-6203EUROCAT is a European network of population-based congenital anomaly (CA) registries. Twenty-one registries agreed to participate in the EUROlinkCAT study to determine if reliable information on the survival of children born with a major CA between 1995 and 2014 can be obtained through linkage to national vital statistics or mortality records. Live birth children with a CA could be linked using personal identifiers to either their national vital statistics (including birth records, death records, hospital records) or to mortality records only, depending on the data available within each region. In total, 18 of 21 registries with data on 192,862 children born with congenital anomalies participated in the study. One registry was unable to get ethical approval to participate and linkage was not possible for two registries due to local reasons. Eleven registries linked to vital statistics and seven registries linked to mortality records only; one of the latter only had identification numbers for 78% of cases, hence it was excluded from further analysis. For registries linking to vital statistics: six linked over 95% of their cases for all years and five were unable to link at least 85% of all live born CA children in the earlier years of the study. No estimate of linkage success could be calculated for registries linking to mortality records. Irrespective of linkage method, deaths that occurred during the first week of life were over three times less likely to be linked compared to deaths occurring after the first week of life. Linkage to vital statistics can provide accurate estimates of survival of children with CAs in some European countries. Bias arises when linkage is not successful, as early neonatal deaths were less likely to be linked. Linkage to mortality records only cannot be recommended, as linkage quality, and hence bias, cannot be assessed.M LoaneJ E GivenJ TanA ReidD AkhmedzhanovaG AstolfiI BarišićN BertilleL B BonetC C CarbonellO Mokoroa CarolloA CoiJ DensemE DraperE GarneM GattS V GlinianaiaA HeinoE Den HondS JordanB KhoshnoodS Kiuru-KuhlefeltK KlungsøyrN LelongL R LutkeA J NevilleL OstapchukA PucciniA RissmannM SantoroI ScanlonG ThysD TuckerS K UrhojH E K de WalleD WellesleyO ZurriagaJ K MorrisPublic Library of Science (PLoS)articleMedicineRScienceQENPLoS ONE, Vol 16, Iss 8, p e0256535 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Medicine R Science Q
spellingShingle	Medicine R Science Q M Loane J E Given J Tan A Reid D Akhmedzhanova G Astolfi I Barišić N Bertille L B Bonet C C Carbonell O Mokoroa Carollo A Coi J Densem E Draper E Garne M Gatt S V Glinianaia A Heino E Den Hond S Jordan B Khoshnood S Kiuru-Kuhlefelt K Klungsøyr N Lelong L R Lutke A J Neville L Ostapchuk A Puccini A Rissmann M Santoro I Scanlon G Thys D Tucker S K Urhoj H E K de Walle D Wellesley O Zurriaga J K Morris Linking a European cohort of children born with congenital anomalies to vital statistics and mortality records: A EUROlinkCAT study.
description	EUROCAT is a European network of population-based congenital anomaly (CA) registries. Twenty-one registries agreed to participate in the EUROlinkCAT study to determine if reliable information on the survival of children born with a major CA between 1995 and 2014 can be obtained through linkage to national vital statistics or mortality records. Live birth children with a CA could be linked using personal identifiers to either their national vital statistics (including birth records, death records, hospital records) or to mortality records only, depending on the data available within each region. In total, 18 of 21 registries with data on 192,862 children born with congenital anomalies participated in the study. One registry was unable to get ethical approval to participate and linkage was not possible for two registries due to local reasons. Eleven registries linked to vital statistics and seven registries linked to mortality records only; one of the latter only had identification numbers for 78% of cases, hence it was excluded from further analysis. For registries linking to vital statistics: six linked over 95% of their cases for all years and five were unable to link at least 85% of all live born CA children in the earlier years of the study. No estimate of linkage success could be calculated for registries linking to mortality records. Irrespective of linkage method, deaths that occurred during the first week of life were over three times less likely to be linked compared to deaths occurring after the first week of life. Linkage to vital statistics can provide accurate estimates of survival of children with CAs in some European countries. Bias arises when linkage is not successful, as early neonatal deaths were less likely to be linked. Linkage to mortality records only cannot be recommended, as linkage quality, and hence bias, cannot be assessed.
format	article
author	M Loane J E Given J Tan A Reid D Akhmedzhanova G Astolfi I Barišić N Bertille L B Bonet C C Carbonell O Mokoroa Carollo A Coi J Densem E Draper E Garne M Gatt S V Glinianaia A Heino E Den Hond S Jordan B Khoshnood S Kiuru-Kuhlefelt K Klungsøyr N Lelong L R Lutke A J Neville L Ostapchuk A Puccini A Rissmann M Santoro I Scanlon G Thys D Tucker S K Urhoj H E K de Walle D Wellesley O Zurriaga J K Morris
author_facet	M Loane J E Given J Tan A Reid D Akhmedzhanova G Astolfi I Barišić N Bertille L B Bonet C C Carbonell O Mokoroa Carollo A Coi J Densem E Draper E Garne M Gatt S V Glinianaia A Heino E Den Hond S Jordan B Khoshnood S Kiuru-Kuhlefelt K Klungsøyr N Lelong L R Lutke A J Neville L Ostapchuk A Puccini A Rissmann M Santoro I Scanlon G Thys D Tucker S K Urhoj H E K de Walle D Wellesley O Zurriaga J K Morris
author_sort	M Loane
title	Linking a European cohort of children born with congenital anomalies to vital statistics and mortality records: A EUROlinkCAT study.
title_short	Linking a European cohort of children born with congenital anomalies to vital statistics and mortality records: A EUROlinkCAT study.
title_full	Linking a European cohort of children born with congenital anomalies to vital statistics and mortality records: A EUROlinkCAT study.
title_fullStr	Linking a European cohort of children born with congenital anomalies to vital statistics and mortality records: A EUROlinkCAT study.
title_full_unstemmed	Linking a European cohort of children born with congenital anomalies to vital statistics and mortality records: A EUROlinkCAT study.
title_sort	linking a european cohort of children born with congenital anomalies to vital statistics and mortality records: a eurolinkcat study.
publisher	Public Library of Science (PLoS)
publishDate	2021
url	https://doaj.org/article/1268a025bf444663ae3263bef99d6df6
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Linking a European cohort of children born with congenital anomalies to vital statistics and mortality records: A EUROlinkCAT study.

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