Cargando…

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...

Descripción completa

Detalles Bibliográficos
Autores principales: Loane, M., Given, J. E., Tan, J., Reid, A., Akhmedzhanova, D., Astolfi, G., Barišić, I., Bertille, N., Bonet, L. B., Carbonell, C. C., Carollo, O. Mokoroa, Coi, A., Densem, J., Draper, E., Garne, E., Gatt, M., Glinianaia, S. V., Heino, A., Hond, E. Den, Jordan, S., Khoshnood, B., Kiuru-Kuhlefelt, S., Klungsøyr, K., Lelong, N., Lutke, L. R., Neville, A. J., Ostapchuk, L., Puccini, A., Rissmann, A., Santoro, M., Scanlon, I., Thys, G., Tucker, D., Urhoj, S. K., de Walle, H. E. K., Wellesley, D., Zurriaga, O., Morris, J. K.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Public Library of Science 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8396745/
https://www.ncbi.nlm.nih.gov/pubmed/34449798
http://dx.doi.org/10.1371/journal.pone.0256535
_version_ 1783744444619554816
author Loane, M.
Given, J. E.
Tan, J.
Reid, A.
Akhmedzhanova, D.
Astolfi, G.
Barišić, I.
Bertille, N.
Bonet, L. B.
Carbonell, C. C.
Carollo, O. Mokoroa
Coi, A.
Densem, J.
Draper, E.
Garne, E.
Gatt, M.
Glinianaia, S. V.
Heino, A.
Hond, E. Den
Jordan, S.
Khoshnood, B.
Kiuru-Kuhlefelt, S.
Klungsøyr, K.
Lelong, N.
Lutke, L. R.
Neville, A. J.
Ostapchuk, L.
Puccini, A.
Rissmann, A.
Santoro, M.
Scanlon, I.
Thys, G.
Tucker, D.
Urhoj, S. K.
de Walle, H. E. K.
Wellesley, D.
Zurriaga, O.
Morris, J. K.
author_facet Loane, M.
Given, J. E.
Tan, J.
Reid, A.
Akhmedzhanova, D.
Astolfi, G.
Barišić, I.
Bertille, N.
Bonet, L. B.
Carbonell, C. C.
Carollo, O. Mokoroa
Coi, A.
Densem, J.
Draper, E.
Garne, E.
Gatt, M.
Glinianaia, S. V.
Heino, A.
Hond, E. Den
Jordan, S.
Khoshnood, B.
Kiuru-Kuhlefelt, S.
Klungsøyr, K.
Lelong, N.
Lutke, L. R.
Neville, A. J.
Ostapchuk, L.
Puccini, A.
Rissmann, A.
Santoro, M.
Scanlon, I.
Thys, G.
Tucker, D.
Urhoj, S. K.
de Walle, H. E. K.
Wellesley, D.
Zurriaga, O.
Morris, J. K.
author_sort Loane, M.
collection PubMed
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 Online
Article
Text
id pubmed-8396745
institution National Center for Biotechnology Information
language English
publishDate 2021
publisher Public Library of Science
record_format MEDLINE/PubMed
spelling pubmed-83967452021-08-28 Linking a European cohort of children born with congenital anomalies to vital statistics and mortality records: A EUROlinkCAT study Loane, M. Given, J. E. Tan, J. Reid, A. Akhmedzhanova, D. Astolfi, G. Barišić, I. Bertille, N. Bonet, L. B. Carbonell, C. C. Carollo, O. Mokoroa Coi, A. Densem, J. Draper, E. Garne, E. Gatt, M. Glinianaia, S. V. Heino, A. Hond, E. Den Jordan, S. Khoshnood, B. Kiuru-Kuhlefelt, S. Klungsøyr, K. Lelong, N. Lutke, L. R. Neville, A. J. Ostapchuk, L. Puccini, A. Rissmann, A. Santoro, M. Scanlon, I. Thys, G. Tucker, D. Urhoj, S. K. de Walle, H. E. K. Wellesley, D. Zurriaga, O. Morris, J. K. PLoS One Research Article 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. Public Library of Science 2021-08-27 /pmc/articles/PMC8396745/ /pubmed/34449798 http://dx.doi.org/10.1371/journal.pone.0256535 Text en © 2021 Loane et al https://creativecommons.org/licenses/by/4.0/This is an open access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/) , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
spellingShingle Research Article
Loane, M.
Given, J. E.
Tan, J.
Reid, A.
Akhmedzhanova, D.
Astolfi, G.
Barišić, I.
Bertille, N.
Bonet, L. B.
Carbonell, C. C.
Carollo, O. Mokoroa
Coi, A.
Densem, J.
Draper, E.
Garne, E.
Gatt, M.
Glinianaia, S. V.
Heino, A.
Hond, E. Den
Jordan, S.
Khoshnood, B.
Kiuru-Kuhlefelt, S.
Klungsøyr, K.
Lelong, N.
Lutke, L. R.
Neville, A. J.
Ostapchuk, L.
Puccini, A.
Rissmann, A.
Santoro, M.
Scanlon, I.
Thys, G.
Tucker, D.
Urhoj, S. K.
de Walle, H. E. K.
Wellesley, D.
Zurriaga, O.
Morris, J. K.
Linking a European cohort of children born with congenital anomalies to vital statistics and mortality records: A EUROlinkCAT study
title 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_short 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
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8396745/
https://www.ncbi.nlm.nih.gov/pubmed/34449798
http://dx.doi.org/10.1371/journal.pone.0256535
work_keys_str_mv AT loanem linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT givenje linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT tanj linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT reida linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT akhmedzhanovad linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT astolfig linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT barisici linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT bertillen linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT bonetlb linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT carbonellcc linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT carolloomokoroa linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT coia linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT densemj linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT drapere linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT garnee linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT gattm linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT glinianaiasv linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT heinoa linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT hondeden linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT jordans linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT khoshnoodb linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT kiurukuhlefelts linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT klungsøyrk linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT lelongn linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT lutkelr linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT nevilleaj linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT ostapchukl linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT puccinia linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT rissmanna linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT santorom linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT scanloni linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT thysg linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT tuckerd linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT urhojsk linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT dewallehek linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT wellesleyd linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT zurriagao linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy
AT morrisjk linkingaeuropeancohortofchildrenbornwithcongenitalanomaliestovitalstatisticsandmortalityrecordsaeurolinkcatstudy