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

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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.; 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.

I: PLoS ONE, Bind 16, Nr. 8, e0256535, 2021.

Publikation: Bidrag til tidsskrift › Tidsskriftartikel › Forskning › fagfællebedømt

Harvard

Loane, M, Given, JE, Tan, J, Reid, A, Akhmedzhanova, D, Astolfi, G, Barišić, I, Bertille, N, Bonet, LB, Carbonell, CC, Carollo, OM, Coi, A, Densem, J, Draper, E, Gatt, M, Glinianaia, SV, Heino, A, Hond, ED, Jordan, S, Khoshnood, B, Kiuru-Kuhlefelt, S, Klungsøyr, K, Lelong, N, Lutke, LR, Neville, AJ, Ostapchuk, L, Puccini, A, Rissmann, A, Santoro, M, Scanlon, I, Thys, G, Tucker, D, Urhoj, SK, De Walle, HEK, Wellesley, D, Zurriaga, O & Morris, JK 2021, 'Linking a European cohort of children born with congenital anomalies to vital statistics and mortality records: A EUROlinkCAT study', PLoS ONE, bind 16, nr. 8, e0256535. https://doi.org/10.1371/journal.pone.0256535

APA

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. M., Coi, A., Densem, J., Draper, E., Gatt, M., Glinianaia, S. V., Heino, A., Hond, E. D., Jordan, S., ... Morris, J. K. (2021). Linking a European cohort of children born with congenital anomalies to vital statistics and mortality records: A EUROlinkCAT study. PLoS ONE, 16(8), [e0256535]. https://doi.org/10.1371/journal.pone.0256535

Vancouver

Loane M, Given JE, Tan J, Reid A, Akhmedzhanova D, Astolfi G o.a. Linking a European cohort of children born with congenital anomalies to vital statistics and mortality records: A EUROlinkCAT study. PLoS ONE. 2021;16(8). e0256535. https://doi.org/10.1371/journal.pone.0256535

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. ; 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. I: PLoS ONE. 2021 ; Bind 16, Nr. 8.

Bibtex

@article{42980b50a54f4e35812528681d2247f3,
title = "Linking a European cohort of children born with congenital anomalies to vital statistics and mortality records: A EUROlinkCAT study",
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 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.",
author = "M. Loane and Given, {J. E.} and J. Tan and A. Reid and D. Akhmedzhanova and G. Astolfi and I. Bari{\v s}i{\'c} and N. Bertille and Bonet, {L. B.} and Carbonell, {C. C.} and Carollo, {O. Mokoroa} and A. Coi and J. Densem and E. Draper and M. Gatt and Glinianaia, {S. V.} and A. Heino and Hond, {E. Den} and S. Jordan and B. Khoshnood and S. Kiuru-Kuhlefelt and K. Klungs{\o}yr and N. Lelong and Lutke, {L. R.} and Neville, {A. J.} and L. Ostapchuk and A. Puccini and A. Rissmann and M. Santoro and I. Scanlon and G. Thys and D. Tucker and Urhoj, {S. K.} and {De Walle}, {H. E.K.} and D. Wellesley and O. Zurriaga and Morris, {J. K.}",
note = "Publisher Copyright: {\textcopyright} 2021 Loane et al.This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.",
year = "2021",
doi = "10.1371/journal.pone.0256535",
language = "English",
volume = "16",
journal = "PLoS ONE",
issn = "1932-6203",
publisher = "Public Library of Science",
number = "8",

}

RIS

TY - JOUR

T1 - Linking a European cohort of children born with congenital anomalies to vital statistics and mortality records

T2 - A EUROlinkCAT study

AU - Loane, M.

AU - Given, J. E.

AU - Tan, J.

AU - Reid, A.

AU - Akhmedzhanova, D.

AU - Astolfi, G.

AU - Barišić, I.

AU - Bertille, N.

AU - Bonet, L. B.

AU - Carbonell, C. C.

AU - Carollo, O. Mokoroa

AU - Coi, A.

AU - Densem, J.

AU - Draper, E.

AU - Gatt, M.

AU - Glinianaia, S. V.

AU - Heino, A.

AU - Hond, E. Den

AU - Jordan, S.

AU - Khoshnood, B.

AU - Kiuru-Kuhlefelt, S.

AU - Klungsøyr, K.

AU - Lelong, N.

AU - Lutke, L. R.

AU - Neville, A. J.

AU - Ostapchuk, L.

AU - Puccini, A.

AU - Rissmann, A.

AU - Santoro, M.

AU - Scanlon, I.

AU - Thys, G.

AU - Tucker, D.

AU - Urhoj, S. K.

AU - De Walle, H. E.K.

AU - Wellesley, D.

AU - Zurriaga, O.

AU - Morris, J. K.

N1 - Publisher Copyright: © 2021 Loane et al.This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

PY - 2021

Y1 - 2021

N2 - 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.

AB - 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.

U2 - 10.1371/journal.pone.0256535

DO - 10.1371/journal.pone.0256535

M3 - Journal article

C2 - 34449798

AN - SCOPUS:85113881451

VL - 16

JO - PLoS ONE

JF - PLoS ONE

SN - 1932-6203

IS - 8

M1 - e0256535

ER -

ID: 279888063