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. 2021 Aug 27;16(8):e0256535.
doi: 10.1371/journal.pone.0256535. eCollection 2021.

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

M Loane  1 , J E Given  1 , J Tan  2 , A Reid  2 , D Akhmedzhanova  3 , G Astolfi  4 , I Barišić  5 , N Bertille  6 , L B Bonet  7 , C C Carbonell  7 , O Mokoroa Carollo  8 , A Coi  9 , J Densem  10 , E Draper  11 , E Garne  12 , M Gatt  13 , S V Glinianaia  14 , A Heino  15 , E Den Hond  16 , S Jordan  17 , B Khoshnood  6 , S Kiuru-Kuhlefelt  15 , K Klungsøyr  18 , N Lelong  6 , L R Lutke  19 , A J Neville  4 , L Ostapchuk  3 , A Puccini  20 , A Rissmann  21 , M Santoro  9 , I Scanlon  17 , G Thys  16 , D Tucker  22 , S K Urhoj  23 , H E K de Walle  19 , D Wellesley  24 , O Zurriaga  7 , J K Morris  2
Affiliations

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

M Loane et al. PLoS One. .

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.

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Conflict of interest statement

The authors have declared that no competing interests exist.

Figures

Fig 1
Fig 1. Percentage of live births linked to vital statistics in each registry by birth year.
Fig 2
Fig 2. Linked deaths occurring during the first week as a percentage of deaths occurring during the first year of life according to registry.
Fig 3
Fig 3. Accuracy of linked variables by registry.
See this image and copyright information in PMC

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