Linking a European cohort of children born with congenital anomalies to vital statistics and mortality records: A EUROlinkCAT study
| العنوان: | Linking a European cohort of children born with congenital anomalies to vital statistics and mortality records: A EUROlinkCAT study |
|---|---|
| المؤلفون: | A Reid, Michele Santoro, David Tucker, Joan K Morris, E Garne, O Mokoroa Carollo, Kari Klungsøyr, Amanda J. Neville, Elizabeth S Draper, Sonja Kiuru-Kuhlefelt, I Scanlon, S K Urhoj, D Akhmedzhanova, Miriam Gatt, Aurora Puccini, Ingeborg Barišić, Anke Rissmann, Guy Thys, E Den Hond, Alessio Coi, Joanne Given, G Astolfi, L R Lutke, Nathalie Lelong, Nathalie Bertille, H. E. K. De Walle, Babak Khoshnood, J. W. Densem, Joachim Tan, Maria Loane, Sue Jordan, Svetlana V. Glinianaia, Oscar Zurriaga, Diana Wellesley, A Heino, C C Carbonell, L Ostapchuk, L B Bonet |
| المساهمون: | Reproductive Origins of Adult Health and Disease (ROAHD) |
| المصدر: | 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, Garne, E, Gatt, M, Glinianaia, S V, Heino, A, Hond, E D, 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 2021, ' Linking a European cohort of children born with congenital anomalies to vital statistics and mortality records : A EUROlinkCAT study ', PLOS ONE, vol. 16, no. 8, e0256535 . https://doi.org/10.1371/journal.pone.0256535 PLOS ONE e0256535 PLoS ONE, Vol 16, Iss 8, p e0256535 (2021) 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, 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 2021, ' Linking a European cohort of children born with congenital anomalies to vital statistics and mortality records : A EUROlinkCAT study ', PLoS ONE, vol. 16, no. 8, e0256535 . https://doi.org/10.1371/journal.pone.0256535 PLoS One r-FISABIO. Repositorio Institucional de Producción Científica instname PLoS ONE, 16(8):e0256535. PUBLIC LIBRARY SCIENCE PLoS ONE |
| بيانات النشر: | Public Library of Science, 2021. |
| سنة النشر: | 2021 |
| مصطلحات موضوعية: | Male, Physiology, Pediatrics, Geographical Locations, Families, Medical Conditions, 0302 clinical medicine, Pregnancy, Statistics, Medicine and Health Sciences, Birth Weight, Medicine, Public and Occupational Health, Registries, 030212 general & internal medicine, Children, education.field_of_study, Multidisciplinary, Norway, Mortality rate, Child Health, Congenital Anomalies, 3. Good health, Europe, Physiological Parameters, Birth Certificates, Cohort, Female, Live birth, Infants, Research Article, Death Rates, Birth weight, Science, Population, MEDLINE, Congenital Abnormalities, 03 medical and health sciences, Population Metrics, 030225 pediatrics, Congenital Disorders, Humans, education, Linkage (software), Population Biology, business.industry, Body Weight, Infant, Newborn, Biology and Life Sciences, Health Care, Vital Statistics, cohort, linkage, congenital anomalies, Age Groups, People and Places, Population Groupings, Health Statistics, Neonatal death, business |
| الوصف: | 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. publishedVersion |
| وصف الملف: | application/pdf |
| اللغة: | English |
| تدمد: | 1932-6203 |
| URL الوصول: | https://explore.openaire.eu/search/publication?articleId=doi_dedup___::a00076e0e9c5f7550061a62dddc4d33a https://openaccess.sgul.ac.uk/id/eprint/113562/14/journal.pone.0256535.pdf |
| حقوق: | OPEN |
| رقم الأكسشن: | edsair.doi.dedup.....a00076e0e9c5f7550061a62dddc4d33a |
| قاعدة البيانات: | OpenAIRE |
| تدمد: | 19326203 |
|---|