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

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, Sue Jordan Orcid Logo, 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

PLOS ONE, Volume: 16, Issue: 8, Start page: e0256535

Swansea University Author: Sue Jordan Orcid Logo

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DOI (Published version): 10.1371/journal.pone.0256535

Abstract

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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ISSN: 1932-6203
Published: Public Library of Science (PLoS) 2021
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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. 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spelling 2021-11-25T17:02:08.7464494 v2 57830 2021-09-09 Linking a European cohort of children born with congenital anomalies to vital statistics and mortality records: A EUROlinkCAT study 24ce9db29b4bde1af4e83b388aae0ea1 0000-0002-5691-2987 Sue Jordan Sue Jordan true false 2021-09-09 HNU 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. Journal Article PLOS ONE 16 8 e0256535 Public Library of Science (PLoS) 1932-6203 27 8 2021 2021-08-27 10.1371/journal.pone.0256535 COLLEGE NANME Nursing COLLEGE CODE HNU Swansea University European Union’s Horizon 2020 Research and Innovation programme Grant agreement number 733001 2021-11-25T17:02:08.7464494 2021-09-09T11:39:21.9691669 Faculty of Medicine, Health and Life Sciences School of Health and Social Care - Nursing M. Loane 1 J. E. Given 2 J. Tan 3 A. Reid 4 D. Akhmedzhanova 5 G. Astolfi 6 I. Barišić 7 N. Bertille 8 L. B. Bonet 9 C. C. Carbonell 10 O. Mokoroa Carollo 11 A. Coi 12 J. Densem 13 E. Draper 14 E. Garne 15 M. Gatt 16 S. V. Glinianaia 17 A. Heino 18 E. Den Hond 19 Sue Jordan 0000-0002-5691-2987 20 B. Khoshnood 21 S. Kiuru-Kuhlefelt 22 K. Klungsøyr 23 N. Lelong 24 L. R. Lutke 25 A. J. Neville 26 L. Ostapchuk 27 A. Puccini 28 A. Rissmann 29 M. Santoro 30 I. Scanlon 31 G. Thys 32 D. Tucker 33 S. K. Urhoj 34 H. E. K. de Walle 35 D. Wellesley 36 O. Zurriaga 37 J. K. Morris 38 57830__21109__3183762cdfcc4f248d1010ac5f05fd15.pdf 57830.pdf 2021-10-07T15:55:26.8969676 Output 1103469 application/pdf Version of Record true © 2021 Loane et al. This is an open access article distributed under the terms of the Creative Commons Attribution License true eng http://creativecommons.org/licenses/by/4.0/
title Linking a European cohort of children born with congenital anomalies to vital statistics and mortality records: A EUROlinkCAT study
spellingShingle Linking a European cohort of children born with congenital anomalies to vital statistics and mortality records: A EUROlinkCAT study
Sue Jordan
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
author_id_str_mv 24ce9db29b4bde1af4e83b388aae0ea1
author_id_fullname_str_mv 24ce9db29b4bde1af4e83b388aae0ea1_***_Sue Jordan
author Sue Jordan
author2 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
Sue 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
format Journal article
container_title PLOS ONE
container_volume 16
container_issue 8
container_start_page e0256535
publishDate 2021
institution Swansea University
issn 1932-6203
doi_str_mv 10.1371/journal.pone.0256535
publisher Public Library of Science (PLoS)
college_str Faculty of Medicine, Health and Life Sciences
hierarchytype
hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str School of Health and Social Care - Nursing{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}School of Health and Social Care - Nursing
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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.
published_date 2021-08-27T04:13:52Z
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