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1. Surveillance of multiple congenital anomalies; searching for new associations

Author

Morris, Joan K., Bergman, Jorieke E. H., Barisic, Ingeborg, Wellesley, Diana, Tucker, David, Limb, Elizabeth, Addor, Marie-Claude, Cavero-Carbonell, Clara, Matias Dias, Carlos, Draper, Elisabeth S., Echevarría-González-de-Garibay, Luis Javier, Gatt, Miriam, Klungsøyr, Kari, Lelong, Nathalie, Luyt, Karen, Materna-Kiryluk, Anna, Nelen, Vera, Neville, Amanda, Perthus, Isabelle, Pierini, Anna, Randrianaivo-Ranjatoelina, Hanitra, Rankin, Judith, Rissmann, Anke, Rouget, Florence, Sayers, Geraldine, Wertelecki, Wladimir, Kinsner-Ovaskainen, Agnieszka, and Garne, Ester

Published
2024
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2. Survival of children with rare structural congenital anomalies: a multi-registry cohort study

Author

Coi, Alessio, Santoro, Michele, Pierini, Anna, Rankin, Judith, Glinianaia, Svetlana V., Tan, Joachim, Reid, Abigail-Kate, Garne, Ester, Loane, Maria, Given, Joanne, Ballardini, Elisa, Cavero-Carbonell, Clara, de Walle, Hermien E. K., Gatt, Miriam, García-Villodre, Laura, Gissler, Mika, Jordan, Sue, Kiuru-Kuhlefelt, Sonja, Kjaer Urhoj, Stine, Klungsøyr, Kari, Lelong, Nathalie, Lutke, L. Renée, Neville, Amanda J., Rahshenas, Makan, Scanlon, Ieuan, Wellesley, Diana, and Morris, Joan K.

Published
2022
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3. Evaluating neonatal mortality in Malta compared with other EU countries: Exploring the influence of congenital anomalies and maternal risk factors.

Author

Wilhelm, Merle, Gatt, Miriam, Hrzic, Rok, Calleja, Neville, and Zeeb, Hajo

Subjects
*NEONATAL mortality, *ABORTION, *MATERNAL age, *HUMAN abnormalities, *DEATH rate, *NEONATAL death
Abstract

Background Objectives Methods Results Conclusions Globally, 240,000 babies die in the neonatal period annually due to congenital anomalies (CA). Malta reports the highest neonatal mortality rate (NMR) among EU (European Union) Countries, constituting a public health concern.This study describes the contribution of CA to NMR in Malta, investigating possible associations with known maternal risk factors of maternal age, nationality, and education. Additionally, it provides an update on the contribution of CA to neonatal deaths in Malta and other EU countries.Anonymous data for births and neonatal deaths were obtained for 2006–2020 from the National Obstetrics Information System (NOIS) in Malta. Regression analyses adjusting for maternal risk factors were run on this data to explore possible associations with NMR. NMRs published by EUROSTAT 2011–2020 were used to compare mortality by underlying cause of death (CA or non‐CA causes) for Malta and other EU countries.Between 2006 and 2020, 63,890 live births with 283 neonatal deaths were registered in Malta, (NMR 4.4 per 1000 live births). CA accounted for 39.6% of neonatal deaths. No time trends were observed in either total NMR, NMR attributed to CA or mortality due to non‐CA causes. Adjusted variables revealed associations for women hailing from non‐EU, low‐income countries. Malta registered high NMRs compared to EU countries, most marked for deaths attributed to CA.Between 2006 and 2020, Malta's NMR remained stable. Maternal Nationality, from non‐EU low‐income countries, was associated with higher neonatal mortality. The influx of such migrants may play a partial role in the high NMRs experienced. Malta's high NMR was primarily driven by early neonatal deaths, which included high proportions of deaths due to CA and is linked to the fact that termination of pregnancy is illegal in Malta. [ABSTRACT FROM AUTHOR]

Published
2024
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5. Prevalence and mortality in children with congenital diaphragmatic hernia: a multicountry study

Author

Politis, Maria D., Bermejo-Sánchez, Eva, Canfield, Mark A., Contiero, Paolo, Cragan, Janet D., Dastgiri, Saeed, de Walle, Hermien E.K., Feldkamp, Marcia L., Nance, Amy, Groisman, Boris, Gatt, Miriam, Benavides-Lara, Adriana, Hurtado-Villa, Paula, Kallén, Kärin, Landau, Danielle, Lelong, Nathalie, Lopez-Camelo, Jorge, Martinez, Laura, Morgan, Margery, Mutchinick, Osvaldo M., Pierini, Anna, Rissmann, Anke, Šípek, Antonin, Szabova, Elena, Wertelecki, Wladimir, Zarante, Ignacio, Bakker, Marian K., Kancherla, Vijaya, Mastroiacovo, Pierpaolo, and Nembhard, Wendy N.

Published
2021
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6. Signal Detection in EUROmediCAT: Identification and Evaluation of Medication–Congenital Anomaly Associations and Use of VigiBase as a Complementary Source of Reference

Author

Cavadino, Alana, Sandberg, Lovisa, Öhman, Inger, Bergvall, Tomas, Star, Kristina, Dolk, Helen, Loane, Maria, Addor, Marie-Claude, Barisic, Ingeborg, Cavero-Carbonell, Clara, Garne, Ester, Gatt, Miriam, Khoshnood, Babak, Klungsøyr, Kari, Latos-Bielenska, Anna, Lelong, Nathalie, Lutke, Reneé, Materna-Kiryluk, Anna, Nelen, Vera, Nevill, Amanda, O’Mahony, Mary, Mokoroa, Olatz, Pierini, Anna, Randrianaivo, Hanitra, Rissmann, Anke, Tucker, David, Wiesel, Awi, Yevtushok, Lyubov, and Morris, Joan K

Published
2021
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7. Socioeconomic disparities in changes to preterm birth and stillbirth rates during the first year of the COVID-19 pandemic: a study of 21 European countries.

Author

Zeitlin, Jennifer, Philibert, Marianne, Barros, Henrique, Broeders, Lisa, Cap, Jan, Draušnik, Željka, Engjom, Hilde, Farr, Alex, Fresson, Jeanne, Gatt, Miriam, Gissler, Mika, Heller, Günther, Isakova, Jelena, Källén, Karin, Kyprianou, Theopisti, Loghi, Marzia, Monteath, Kirsten, Mortensen, Laust, Rihs, Tonia, and Sakkeus, Luule

Subjects
RESEARCH funding, PREMATURE infants, PERINATAL death, META-analysis, DESCRIPTIVE statistics, RELATIVE medical risk, PSYCHOLOGY of mothers, QUALITY of life, PARTICIPATION, HEALTH equity, CONFIDENCE intervals, COVID-19 pandemic, SOCIAL classes, EDUCATIONAL attainment
Abstract

Background Despite concerns about worsening pregnancy outcomes resulting from healthcare restrictions, economic difficulties and increased stress during the COVID-19 pandemic, preterm birth (PTB) rates declined in some countries in 2020, while stillbirth rates appeared stable. Like other shocks, the pandemic may have exacerbated existing socioeconomic disparities in pregnancy, but this remains to be established. Our objective was to investigate changes in PTB and stillbirth by socioeconomic status (SES) in European countries. Methods The Euro-Peristat network implemented this study within the Population Health Information Research Infrastructure (PHIRI) project. A common data model was developed to collect aggregated tables from routine birth data for 2015–2020. SES was based on mother's educational level or area-level deprivation/maternal occupation if education was unavailable and harmonized into low, medium and high SES. Country-specific relative risks (RRs) of PTB and stillbirth for March to December 2020, adjusted for linear trends from 2015 to 2019, by SES group were pooled using random effects meta-analysis. Results Twenty-one countries provided data on perinatal outcomes by SES. PTB declined by an average 4% in 2020 {pooled RR: 0.96 [95% confidence intervals (CIs): 0.94–0.97]} with similar estimates across all SES groups. Stillbirths rose by 5% [RR: 1.05 (95% CI: 0.99–1.10)], with increases of between 3 and 6% across the three SES groups, with overlapping confidence limits. Conclusions PTB decreases were similar regardless of SES group, while stillbirth rates rose without marked differences between groups. [ABSTRACT FROM AUTHOR]

Published
2024
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8. Gastroschisis prevalence patterns in 27 surveillance programs from 24 countries, International Clearinghouse for Birth Defects Surveillance and Research, 1980–2017

Author

Feldkamp, Marcia L., primary, Canfield, Mark A., additional, Krikov, Sergey, additional, Prieto‐Merino, David, additional, Šípek, Antonin, additional, LeLong, Nathalie, additional, Amar, Emmanuelle, additional, Rissmann, Anke, additional, Csaky‐Szunyogh, Melinda, additional, Tagliabue, Giovanna, additional, Pierini, Anna, additional, Gatt, Miriam, additional, Bergman, Jorieke E. H., additional, Szabova, Elena, additional, Bermejo‐Sánchez, Eva, additional, Tucker, David, additional, Dastgiri, Saeed, additional, Bidondo, María Paz, additional, Canessa, Aurora, additional, Zarante, Ignacio, additional, Hurtado‐Villa, Paula, additional, Martinez, Laura, additional, Mutchinick, Osvaldo M., additional, Camelo, Jorge Lopez, additional, Benavides‐Lara, Adriana, additional, Thomas, Mary Ann, additional, Liu, Shiliang, additional, Nembhard, Wendy N., additional, Gray, Elizabeth B., additional, Nance, Amy E., additional, Mastroiacovo, Pierpaolo, additional, and Botto, Lorenzo D., additional

Published
2024
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9. Surveillance of multiple congenital anomalies; searching for new associations

Author

Morris, Joan K., primary, Bergman, Jorieke E. H., additional, Barisic, Ingeborg, additional, Wellesley, Diana, additional, Tucker, David, additional, Limb, Elizabeth, additional, Addor, Marie-Claude, additional, Cavero-Carbonell, Clara, additional, Matias Dias, Carlos, additional, Draper, Elisabeth S., additional, Echevarría-González-de-Garibay, Luis Javier, additional, Gatt, Miriam, additional, Klungsøyr, Kari, additional, Lelong, Nathalie, additional, Luyt, Karen, additional, Materna-Kiryluk, Anna, additional, Nelen, Vera, additional, Neville, Amanda, additional, Perthus, Isabelle, additional, Pierini, Anna, additional, Randrianaivo-Ranjatoelina, Hanitra, additional, Rankin, Judith, additional, Rissmann, Anke, additional, Rouget, Florence, additional, Sayers, Geraldine, additional, Wertelecki, Wladimir, additional, Kinsner-Ovaskainen, Agnieszka, additional, and Garne, Ester, additional

Published
2023
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10. Spectrum of congenital anomalies among VACTERL cases: a EUROCAT population-based study

Author

van de Putte, Romy, van Rooij, Iris A. L. M., Marcelis, Carlo L. M., Guo, Michel, Brunner, Han G., Addor, Marie-Claude, Cavero-Carbonell, Clara, Dias, Carlos M., Draper, Elizabeth S., Etxebarriarteun, Larraitz, Gatt, Miriam, Haeusler, Martin, Khoshnood, Babak, Klungsoyr, Kari, Kurinczuk, Jenny J., Lanzoni, Monica, Latos-Bielenska, Anna, Luyt, Karen, O’Mahony, Mary T., Miller, Nicola, Mullaney, Carmel, Nelen, Vera, Neville, Amanda J., Perthus, Isabelle, Pierini, Anna, Randrianaivo, Hanitra, Rankin, Judith, Rissmann, Anke, Rouget, Florence, Schaub, Bruno, Tucker, David, Wellesley, Diana, Wiesel, Awi, Zymak-Zakutnia, Natalya, Loane, Maria, Barisic, Ingeborg, de Walle, Hermien E. K., Roeleveld, Nel, and Bergman, Jorieke E. H.

Published
2020
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13. Risk factors for mortality in infancy and childhood in children with major congenital anomalies: A European population‐based cohort study

Author

Tan, Joachim, primary, Glinianaia, Svetlana V., additional, Rankin, Judith, additional, Pierini, Anna, additional, Santoro, Michele, additional, Coi, Alessio, additional, Garne, Ester, additional, Loane, Maria, additional, Given, Joanne E., additional, Brigden, Joanna, additional, Ballardini, Elisa, additional, Cavero‐Carbonell, Clara, additional, de Walle, Hermien E. K., additional, García‐Villodre, Laura, additional, Gatt, Miriam, additional, Gissler, Mika, additional, Heino, Anna, additional, Jordan, Sue, additional, Khoshnood, Babak, additional, Klungsoyr, Kari, additional, Lelong, Nathalie, additional, Lutke, Renée L., additional, Neville, Amanda J., additional, Tucker, David, additional, Urhoj, Stine K., additional, Wellesley, Diana, additional, and Morris, Joan K., additional

Published
2023
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15. Epidemiology of septo-optic dysplasia with focus on prevalence and maternal age – A EUROCAT study

Author

Garne, Ester, Rissmann, Anke, Addor, Marie-Claude, Barisic, Ingeborg, Bergman, Jorieke, Braz, Paula, Cavero-Carbonell, Clara, Draper, Elizabeth S., Gatt, Miriam, Haeusler, Martin, Klungsoyr, Kari, Kurinczuk, Jennifer J., Lelong, Nathalie, Luyt, Karen, Lynch, Catherine, O'Mahony, Mary T., Mokoroa, Olatz, Nelen, Vera, Neville, Amanda J., Pierini, Anna, Randrianaivo, Hanitra, Rankin, Judith, Rouget, Florence, Schaub, Bruno, Tucker, David, Verellen-Dumoulin, Christine, Wellesley, Diana, Wiesel, Awi, Zymak-Zakutnia, Nataliia, Lanzoni, Monica, and Morris, Joan K.

Published
2018
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17. The burden of disease for children born alive with Turner syndrome—A European cohort study

Author

Andersen, Ann‐Louise Rud, primary, Urhoj, Stine Kjaer, additional, Tan, Joachim, additional, Cavero‐Carbonell, Clara, additional, Gatt, Miriam, additional, Gissler, Mika, additional, Klungsoyr, Kari, additional, Khoshnood, Babak, additional, Morris, Joan, additional, Neville, Amanda J., additional, Pierini, Anna, additional, Scanlon, Ieuan, additional, de Walle, Hermien E. K., additional, Wellesley, Diana, additional, Garne, Ester, additional, and Loane, Maria, additional

Published
2023
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18. Ethics and legal requirements for data linkage in 14 European countries for children with congenital anomalies

Author

Claridge, Hugh, primary, Tan, Joachim, additional, Loane, Maria, additional, Garne, Ester, additional, Barisic, Ingeborg, additional, Cavero-Carbonell, Clara, additional, Dias, Carlos, additional, Gatt, Miriam, additional, Jordan, Susan, additional, Khoshnood, Babak, additional, Kiuru-Kuhlefelt, Sonja, additional, Klungsoyr, Kari, additional, Mokoroa Carollo, Olatz, additional, Nelen, Vera, additional, Neville, Amanda J, additional, Pierini, Anna, additional, Randrianaivo, Hanitra, additional, Rissmann, Anke, additional, Tucker, David, additional, de Walle, Hermien, additional, Wertelecki, Wladimir, additional, and Morris, Joan K, additional

Published
2023
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19. Causes of death in children with congenital anomalies up to age 10 in eight European countries

Author

Rissmann, Anke, primary, Tan, Joachim, additional, Glinianaia, Svetlana V, additional, Rankin, Judith, additional, Pierini, Anna, additional, Santoro, Michele, additional, Coi, Alessio, additional, Garne, Ester, additional, Loane, Maria, additional, Given, Joanne, additional, Reid, Abigail, additional, Aizpurua, Amaia, additional, Akhmedzhanova, Diana, additional, Ballardini, Elisa, additional, Barisic, Ingeborg, additional, Cavero-Carbonell, Clara, additional, de Walle, Hermien E K, additional, Gatt, Miriam, additional, Gissler, Mika, additional, Heino, Anna, additional, Jordan, Sue, additional, Urhoj, Stine Kjaer, additional, Klungsøyr, Kari, additional, Lutke, Renee, additional, Mokoroa, Olatz, additional, Neville, Amanda Julie, additional, Thayer, Daniel S, additional, Wellesley, Diana G, additional, Yevtushok, Lyubov, additional, Zurriaga, Oscar, additional, and Morris, Joan, additional

Published
2023
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20. Beta-Blocker Use in Pregnancy and Risk of Specific Congenital Anomalies: A European Case-Malformed Control Study

Author

Bergman, Jorieke E. H., Lutke, L. Renée, Gans, Rijk O. B., Addor, Marie-Claude, Barisic, Ingeborg, Cavero-Carbonell, Clara, Garne, Ester, Gatt, Miriam, Klungsoyr, Kari, Lelong, Nathalie, Lynch, Catherine, Mokoroa, Olatz, Nelen, Vera, Neville, Amanda J., Pierini, Anna, Randrianaivo, Hanitra, Rissmann, Anke, Tucker, David, Wiesel, Awi, Dolk, Helen, Loane, Maria, and Bakker, Marian K.

Published
2018
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21. Analysis of early neonatal case fatality rate among newborns with congenital hydrocephalus, a 2000-2014 multi-country registry-based study

Author

Gili, Juan Antonio, López-Camelo, Jorge Santiago, Nembhard, Wendy N, Bakker, Marian, de Walle, Hermien E K, Stallings, Erin B, Kancherla, Vijaya, Contiero, Paolo, Dastgiri, Saeed, Feldkamp, Marcia L, Nance, Amy, Gatt, Miriam, Martínez, Laura, Canessa, María Aurora, Groisman, Boris, Hurtado-Villa, Paula, Källén, Karin, Landau, Danielle, Lelong, Nathalie, Morgan, Margery, Arteaga-Vázquez, Jazmín, Pierini, Anna, Rissmann, Anke, Sipek, Antonin, Szabova, Elena, Wertelecki, Wladimir, Zarante, Ignacio, Canfield, Mark A, Mastroiacovo, Pierpaolo, and Reproductive Origins of Adult Health and Disease (ROAHD)

Subjects
Embryology, Health, Toxicology and Mutagenesis, Infant, Newborn, Stillbirth, Toxicology, Article, Pregnancy, Pediatrics, Perinatology and Child Health, Prevalence, Humans, Female, Registries, Live Birth, Hydrocephalus, Developmental Biology
Abstract

BACKGROUND: Congenital hydrocephalus (CH) comprises a heterogeneous group of birth anomalies with a wide-ranging prevalence across geographic regions and registry type. The aim of the present study was to analyze the early neonatal case fatality rate (CFR) and total birth prevalence of newborns diagnosed with CH.METHODS: Data were provided by 25 registries from four continents participating in the International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR) on births ascertained between 2000 and 2014. Two CH rates were calculated using a Poisson distribution: early neonatal CFR (death within 7 days) per 100 liveborn CH cases (CFR) and total birth prevalence rate (BPR) per 10,000 births (including live births and stillbirths) (BPR). Heterogeneity between registries was calculated using a meta-analysis approach with random effects. Temporal trends in CFR and BPR within registries were evaluated through Poisson regression modeling.RESULTS: A total of 13,112 CH cases among 19,293,280 total births were analyzed. The early neonatal CFR was 5.9 per 100 liveborn cases, 95% confidence interval (CI): 5.4-6.8. The CFR among syndromic cases was 2.7 times (95% CI: 2.2-3.3) higher than among non-syndromic cases (10.4% [95% CI: 9.3-11.7] and 4.4% [95% CI: 3.7-5.2], respectively). The total BPR was 6.8 per 10,000 births (95% CI: 6.7-6.9). Stratified by elective termination of pregnancy for fetal anomalies (ETOPFA), region and system, higher CFR were observed alongside higher BPR rates. The early neonatal CFR and total BPR did not show temporal variation, with the exception of a CFR decrease in one registry.CONCLUSIONS: Findings of early neonatal CFR and total BPR were highly heterogeneous among registries participating in ICBDSR. Most registries with higher CFR also had higher BPR. Differences were attributable to type of registry (hospital-based vs. population-based), ETOPFA (allowed yes or no) and geographical regions. These findings contribute to the understanding of regional differences of CH occurrence and early neonatal deaths.

Published
2022

22. Survival, hospitalisation and surgery in children born with Pierre Robin sequence: a European population-based cohort study

Author

Santoro, Michele, primary, Garne, Ester, additional, Coi, Alessio, additional, Tan, Joachim, additional, Loane, Maria, additional, Ballardini, Elisa, additional, Cavero-Carbonell, Clara, additional, de Walle, Hermien EK, additional, Gatt, Miriam, additional, Gissler, Mika, additional, Jordan, Sue, additional, Klungsøyr, Kari, additional, Lelong, Natalie, additional, Urhoj, Stine Kjaer, additional, Wellesley, Diana G, additional, and Morris, Joan K, additional

Published
2023
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23. Surveillance of multiple congenital anomalies; searching for new associations

Author

Morris, Joan, primary, Bergman, Jorieke, additional, Barisic, Ingeborg, additional, Wellesley, Diana, additional, Tucker, David, additional, Limb, Elisabeth, additional, Addor, Marie-Claude, additional, Cavero-Carbonell, Clara, additional, Dias, Carlos, additional, Draper, Elisabeth, additional, De Garibay, Luis Echevarría González, additional, Gatt, Miriam, additional, Klungsoyr, Kari, additional, Lelong, Nathalie, additional, Luyt, Karen, additional, Materna-Kiryluk, Anna, additional, Nelen, Vera, additional, Neville, Amanda, additional, PERTHUS, Isabelle, additional, Pierini, Anna, additional, RANDRIANAIVO, Hanitra, additional, Rankin, Judith, additional, Rissmann, Anke, additional, Rouget, Florence, additional, Sayers, Geraldine, additional, Wertelecki, Wladimir, additional, Kinsner-Ovaskainen, Agnieszka, additional, and Garne, Ester, additional

Published
2023
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24. Ten-year survival of children with trisomy 13 or trisomy 18: a multi-registry European cohort study

Author

Glinianaia, Svetlana V, primary, Rankin, Judith, additional, Tan, Joachim, additional, Loane, Maria, additional, Garne, Ester, additional, Cavero-Carbonell, Clara, additional, de Walle, Hermien E K, additional, Gatt, Miriam, additional, Gissler, Mika, additional, Klungsøyr, Kari, additional, Lelong, Natalie, additional, Neville, Amanda, additional, Pierini, Anna, additional, Tucker, David F, additional, Urhoj, Stine Kjaer, additional, Wellesley, Diana Gay, additional, and Morris, Joan K, additional

Published
2023
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25. Risk factors for mortality in infancy and childhood in children with major congenital anomalies:A European population-based cohort study

Author

Tan, Joachim, Glinianaia, Svetlana V, Rankin, Judith, Pierini, Anna, Santoro, Michele, Coi, Alessio, Garne, Ester, Loane, Maria, Given, Joanne E, Brigden, Joanna, Ballardini, Elisa, Cavero-Carbonell, Clara, de Walle, Hermien E K, García-Villodre, Laura, Gatt, Miriam, Gissler, Mika, Heino, Anna, Jordan, Sue, Khoshnood, Babak, Klungsoyr, Kari, Lelong, Nathalie, Lutke, Renée L, Neville, Amanda J, Tucker, David, Urhoj, Stine K, Wellesley, Diana, Morris, Joan K, Tan, Joachim, Glinianaia, Svetlana V, Rankin, Judith, Pierini, Anna, Santoro, Michele, Coi, Alessio, Garne, Ester, Loane, Maria, Given, Joanne E, Brigden, Joanna, Ballardini, Elisa, Cavero-Carbonell, Clara, de Walle, Hermien E K, García-Villodre, Laura, Gatt, Miriam, Gissler, Mika, Heino, Anna, Jordan, Sue, Khoshnood, Babak, Klungsoyr, Kari, Lelong, Nathalie, Lutke, Renée L, Neville, Amanda J, Tucker, David, Urhoj, Stine K, Wellesley, Diana, and Morris, Joan K

Abstract

BACKGROUND: Preterm birth and young maternal age are known risk factors for infant and childhood mortality. There is limited knowledge of the impact of these risk factors in children born with major congenital anomalies (CAs), who have inherently higher risks of death compared with other children.OBJECTIVES: To investigate the risk factors for mortality up to age 10 years in children born with specific major CAs.METHODS: This population-based cohort study involved 150,198 livebirths from 1995 to 2014 in 13 European CA registries linked to mortality data. Cox proportional hazards models estimated the association of gestational age, maternal age and child's sex with death <1 year and 1-9 years for the whole cohort and by CA subgroup. Hazard ratios (HR) from each registry were pooled using multivariate meta-analysis.RESULTS: Preterm birth had a dose-response association with mortality; compared with infants born at 37+ weeks gestation, those born at <28, 28-31 and 32-36 weeks had 14.88 (95% CI 12.57, 17.62), 8.39 (95% CI 7.16, 9.85) and 3.88 (95% CI 3.40, 4.43) times higher risk of death <1 year, respectively. The corresponding risks at 1-9 years were 4.99 (95% CI 2.94, 8.48), 3.09 (95% CI 2.28, 4.18) and 2.04 (95% CI 1.69, 2.46) times higher, respectively. Maternal age <20 years (versus 20-34 years) was a risk factor for death <1 year (HR 1.30, 95% CI 1.09, 1.54) and 1-9 years (HR 1.58, 95% CI 1.19, 2.10). Females had 1.22 (95% CI: 1.07, 1.39) times higher risk of death between 1 and 9 years than males.CONCLUSION: Preterm birth was associated with considerably higher infant and childhood mortality in children with CAs, comparable to estimates reported elsewhere for the background population. Additional risk factors included young maternal age and female sex. Information on risk factors could benefit clinical care and guide counselling of parents following CA diagnoses.

Published
2023

26. The burden of disease for children born alive with Turner syndrome-A European cohort study

Author

Andersen, Ann-Louise Rud, Urhoj, Stine Kjaer, Tan, Joachim, Cavero-Carbonell, Clara, Gatt, Miriam, Gissler, Mika, Klungsoyr, Kari, Khoshnood, Babak, Morris, Joan, Neville, Amanda J, Pierini, Anna, Scanlon, Ieuan, de Walle, Hermien E K, Wellesley, Diana, Garne, Ester, Loane, Maria, Andersen, Ann-Louise Rud, Urhoj, Stine Kjaer, Tan, Joachim, Cavero-Carbonell, Clara, Gatt, Miriam, Gissler, Mika, Klungsoyr, Kari, Khoshnood, Babak, Morris, Joan, Neville, Amanda J, Pierini, Anna, Scanlon, Ieuan, de Walle, Hermien E K, Wellesley, Diana, Garne, Ester, and Loane, Maria

Abstract

BACKGROUND: Turner syndrome is a rare congenital anomaly caused by complete or partial X chromosome monosomy that may affect mortality and morbidity in childhood.METHODS: This population-based data-linkage cohort study, as part of the EUROlinkCAT project, investigated mortality and morbidity for the first 5 years of life for liveborn European children diagnosed with Turner syndrome. Thirteen population-based registries in 10 countries from the European surveillance of congenital anomalies (EUROCAT) network participated. Data on children born 1995-2014 and diagnosed with Turner syndrome were linked to mortality, hospital and prescription records. Children with any congenital anomaly and children without a congenital anomaly were included for comparison on morbidity.RESULTS: Out of a population of 5.8 million livebirths 404 were diagnosed with Turner syndrome prenatally or in infancy and 95.5% survived to their fifth birthday. During the first year of life 72.3% (95% CI 59.5;81.6) of children with Turner syndrome were hospitalized, the median length of stay was 5.6 days (95% CI 3.5;7.7) and 18.7% (95% CI 13.9;23.9) underwent surgery. After the first year of life hospitalizations and length of stay decreased but more children underwent surgery (30.8% [95% CI 17.6;44.7]). In the first 5 years the percentage of children with Turner syndrome having a prescription for antibiotics was 12%-20% per year and increased with the age of child.CONCLUSIONS: In the first year of life, the burden of disease was relatively high for children with Turner syndrome. The outlook is more positive beyond the first year, though overall morbidity still exceeded that of children without congenital anomalies.

Published
2023

27. Survival, hospitalisation and surgery in children born with Pierre Robin sequence:a European population-based cohort study

Author

Santoro, Michele, Garne, Ester, Coi, Alessio, Tan, Joachim, Loane, Maria, Ballardini, Elisa, Cavero-Carbonell, Clara, de Walle, Hermien Ek, Gatt, Miriam, Gissler, Mika, Jordan, Sue, Klungsøyr, Kari, Lelong, Natalie, Urhoj, Stine Kjaer, Wellesley, Diana G, Morris, Joan K, Santoro, Michele, Garne, Ester, Coi, Alessio, Tan, Joachim, Loane, Maria, Ballardini, Elisa, Cavero-Carbonell, Clara, de Walle, Hermien Ek, Gatt, Miriam, Gissler, Mika, Jordan, Sue, Klungsøyr, Kari, Lelong, Natalie, Urhoj, Stine Kjaer, Wellesley, Diana G, and Morris, Joan K

Abstract

OBJECTIVE: To evaluate survival, hospitalisations and surgical procedures for children born with Pierre Robin sequence (PRS) across Europe.DESIGN: Multicentre population-based cohort study.SETTING: Data on 463 live births with PRS from a population of 4 984 793 from 12 EUROCAT congenital anomaly registries.METHODS: Data on children with PRS born 1995-2014 were linked electronically to data on mortality, hospitalisations and surgical procedures up to 10 years of age. Each registry applied a common data model to standardise the linked data and ran common syntax scripts to produce aggregate tables. Results from each registry were pooled using random-effect meta-analyses.MAIN OUTCOME MEASURES: Probability of survival, proportion of children hospitalised and undergoing surgery, and median length of hospital stay.RESULTS: The majority of deaths occurred in the first year of life with a survival rate of 96.0% (95% CI 93.5% to 98.5%); 95.1% (95% CI 92.7% to 97.7%) survived to age 10. In the first year of life, 99.2% (95% CI 95.0% to 99.9%) of children were hospitalised with a median stay of 21.4 days (95% CI 15.6 to 27.2), and 67.6% (95% CI 46.6% to 81.8%) underwent surgery. In the first 5 years of life, 99.2% of children underwent a median of two surgical procedures. Between ages 5 and 9, 58.3% (95% CI 44.7% to 69.7%) were hospitalised with a median annual stay of 0.3 days.CONCLUSIONS: Children with PRS had high mortality and morbidity with long hospital stays in the first year of life, and almost all had surgery before 5 years of age. Survival improved after infancy with fewer hospitalisations after age 5. This study provides reliable estimates of the survival and morbidity of children with PRS for families and healthcare providers.

Published
2023

28. Ten-year survival of children with trisomy 13 or trisomy 18:a multi-registry European cohort study

Author

Glinianaia, Svetlana V, Rankin, Judith, Tan, Joachim, Loane, Maria, Garne, Ester, Cavero-Carbonell, Clara, de Walle, Hermien E K, Gatt, Miriam, Gissler, Mika, Klungsøyr, Kari, Lelong, Natalie, Neville, Amanda, Pierini, Anna, Tucker, David F, Urhoj, Stine Kjaer, Wellesley, Diana Gay, Morris, Joan K, Glinianaia, Svetlana V, Rankin, Judith, Tan, Joachim, Loane, Maria, Garne, Ester, Cavero-Carbonell, Clara, de Walle, Hermien E K, Gatt, Miriam, Gissler, Mika, Klungsøyr, Kari, Lelong, Natalie, Neville, Amanda, Pierini, Anna, Tucker, David F, Urhoj, Stine Kjaer, Wellesley, Diana Gay, and Morris, Joan K

Abstract

OBJECTIVE: To investigate the survival to 10 years of age of children with trisomy 13 (T13) and children with trisomy 18 (T18), born 1995-2014.DESIGN: Population-based cohort study that linked mortality data to data on children born with T13 or T18, including translocations and mosaicisms, from 13 member registries of EUROCAT, a European network for the surveillance of congenital anomalies.SETTING: 13 regions in nine Western European countries.PATIENTS: 252 live births with T13 and 602 with T18.MAIN OUTCOME MEASURES: Survival at 1 week, 4 weeks and 1, 5 and 10 years of age estimated by random-effects meta-analyses of registry-specific Kaplan-Meier survival estimates.RESULTS: Survival estimates of children with T13 were 34% (95% CI 26% to 46%), 17% (95% CI 11% to 29%) and 11% (95% CI 6% to 18%) at 4 weeks, 1 and 10 years, respectively. The corresponding survival estimates were 38% (95% CI 31% to 45%), 13% (95% CI 10% to 17%) and 8% (95% CI 5% to 13%) for children with T18. The 10-year survival conditional on surviving to 4 weeks was 32% (95% CI 23% to 41%) and 21% (95% CI 15% to 28%) for children with T13 and T18, respectively.CONCLUSIONS: This multi-registry European study found that despite extremely high neonatal mortality in children with T13 and T18, 32% and 21%, respectively, of those who survived to 4 weeks were likely to survive to age 10 years. These reliable survival estimates are useful to inform counselling of parents after prenatal diagnosis.

Published
2023

30. Maternal age and the prevalence of congenital heart defects in Europe, 1995–2015: A register‐based study

Author

Mamasoula, Chrysovalanto, primary, Bigirumurame, Theophile, additional, Chadwick, Thomas, additional, Addor, Marie‐Claude, additional, Cavero‐Carbonell, Clara, additional, Dias, Carlos M., additional, Echevarría‐González‐de‐Garibay, Luis‐Javier, additional, Gatt, Miriam, additional, Khoshnood, Babak, additional, Klungsoyr, Kari, additional, Randall, Kay, additional, Stoianova, Sylvia, additional, Haeusler, Martin, additional, Nelen, Vera, additional, Neville, Amanda J., additional, Perthus, Isabelle, additional, Pierini, Anna, additional, Bertaut‐Nativel, Bénédicte, additional, Rissmann, Anke, additional, Rouget, Florence, additional, Schaub, Bruno, additional, Tucker, David, additional, Wellesley, Diana, additional, Zymak‐Zakutnia, Natalya, additional, Barisic, Ingeborg, additional, de Walle, Hermien E.K., additional, Lanzoni, Monica, additional, Sayers, Gerardine, additional, Mullaney, Carmel, additional, Pennington, Lindsay, additional, and Rankin, Judith, additional

Published
2023
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31. Amniotic band syndrome and limb body wall complex in Europe 1980–2019

Author

Bergman, Jorieke E. H., primary, Barišić, Ingeborg, additional, Addor, Marie‐Claude, additional, Braz, Paula, additional, Cavero‐Carbonell, Clara, additional, Draper, Elizabeth S., additional, Echevarría‐González‐de‐Garibay, Luis J., additional, Gatt, Miriam, additional, Haeusler, Martin, additional, Khoshnood, Babak, additional, Klungsøyr, Kari, additional, Kurinczuk, Jennifer J., additional, Latos‐Bielenska, Anna, additional, Luyt, Karen, additional, Martin, Danielle, additional, Mullaney, Carmel, additional, Nelen, Vera, additional, Neville, Amanda J., additional, O'Mahony, Mary T., additional, Perthus, Isabelle, additional, Pierini, Anna, additional, Randrianaivo, Hanitra, additional, Rankin, Judith, additional, Rissmann, Anke, additional, Rouget, Florence, additional, Sayers, Gerardine, additional, Schaub, Bruno, additional, Stevens, Sarah, additional, Tucker, David, additional, Verellen‐Dumoulin, Christine, additional, Wiesel, Awi, additional, Gerkes, Erica H., additional, Perraud, Annie, additional, Loane, Maria A., additional, Wellesley, Diana, additional, and de Walle, Hermien E. K., additional

Published
2022
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32. The burden of disease for children diagnosed with Klinefelter syndrome – a European cohort

Author

Andersen, Ann-Louise Rud, primary, Urhoj, Stine Kjaer, additional, Cavero-Carbonell, Clara, additional, Gatt, Miriam, additional, Gissler, Mika, additional, Klungsoyr, Kari, additional, Lelong, Nathalie, additional, Loane, Maria, additional, Morris, Joan K, additional, Neville, Amanda, additional, Pierini, Anna, additional, Tan, Joachim, additional, Tucker, David, additional, de Walle, Hermien, additional, Wellesley, Diana, additional, and Garne, Ester, additional

Published
2022
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34. Long term trends in prevalence of neural tube defects in Europe : population based study

Author

Khoshnood, Babak, Loane, Maria, de Walle, Hermien, Arriola, Larraitz, Addor, Marie-Claude, Barisic, Ingeborg, Beres, Judit, Bianchi, Fabrizio, Dias, Carlos, Draper, Elizabeth, Garne, Ester, Gatt, Miriam, Haeusler, Martin, Klungsoyr, Kari, Latos-Bielenska, Anna, Lynch, Catherine, McDonnell, Bob, Nelen, Vera, Neville, Amanda J, O’Mahony, Mary T, Queisser-Luft, Annette, Rankin, Judith, Rissmann, Anke, Ritvanen, Annukka, Rounding, Catherine, Sipek, Antonin, Tucker, David, Verellen-Dumoulin, Christine, Wellesley, Diana, and Dolk, Helen

Published
2015

36. Variations in use of childbirth interventions in 13 high-income countries: A multinational cross-sectional study

Author

Seijmonsbergen-Schermers, Anna E., van den Akker, Thomas, Rydahl, Eva, Beeckman, Katrien, Bogaerts, Annick, Binfa, Lorena, Frith, Lucy, Gross, Mechthild M., Misselwitz, Björn, Hálfdánsdóttir, Berglind, Daly, Deirdre, Corcoran, Paul, Calleja-Agius, Jean, Calleja, Neville, Gatt, Miriam, Vika Nilsen, Anne Britt, Declercq, Eugene, Gissler, Mika, Heino, Anna, Lindgren, Helena, and de Jonge, Ank

Subjects
Infant mortality -- Analysis -- Usage -- Health aspects, Obstetrics -- Usage -- Analysis -- Health aspects, Information management -- Health aspects -- Analysis -- Usage, Cesarean section -- Usage -- Analysis -- Health aspects, Information accessibility, Biological sciences
Abstract

Background Variations in intervention rates, without subsequent reductions in adverse outcomes, can indicate overuse. We studied variations in and associations between commonly used childbirth interventions and adverse outcomes, adjusted for population characteristics. Methods and findings In this multinational cross-sectional study, existing data on 4,729,307 singleton births at [greater than or equal to]37 weeks in 2013 from Finland, Sweden, Norway, Denmark, Iceland, Ireland, England, the Netherlands, Belgium, Germany (Hesse), Malta, the United States, and Chile were used to describe variations in childbirth interventions and outcomes. Numbers of births ranged from 3,987 for Iceland to 3,500,397 for the USA. Crude data were analysed in the Netherlands, or analysed data were shared with the principal investigator. Strict variable definitions were used and information on data quality was collected. Intervention rates were described for each country and stratified by parity. Uni- and multivariable analyses were performed, adjusted for population characteristics, and associations between rates of interventions, population characteristics, and outcomes were assessed using Spearman's rank correlation coefficients. Considerable intercountry variations were found for all interventions, despite adjustments for population characteristics. Adjustments for ethnicity and body mass index changed odds ratios for augmentation of labour and episiotomy. Largest variations were found for augmentation of labour, pain relief, episiotomy, instrumental birth, and cesarean section (CS). Percentages of births at [greater than or equal to]42 weeks varied from 0.1% to 6.7%. Rates among nulliparous versus multiparous women varied from 56% to 80% versus 51% to 82% for spontaneous onset of labour; 14% to 36% versus 8% to 28% for induction of labour; 3% to 13% versus 7% to 26% for prelabour CS; 16% to 48% versus 12% to 50% for overall CS; 22% to 71% versus 7% to 38% for augmentation of labour; 50% to 93% versus 25% to 86% for any intrapartum pain relief, 19% to 83% versus 10% to 64% for epidural anaesthesia; 6% to 68% versus 2% to 30% for episiotomy in vaginal births; 3% to 30% versus 1% to 7% for instrumental vaginal births; and 42% to 70% versus 50% to 84% for spontaneous vaginal births. Countries with higher rates of births at [greater than or equal to]42 weeks had higher rates of births with a spontaneous onset (rho = 0.82 for nulliparous/rho = 0.83 for multiparous women) and instrumental (rho = 0.67) and spontaneous (rho = 0.66) vaginal births among multiparous women and lower rates of induction of labour (rho = -0.71/-0.66), prelabour CS (rho = -0.61/-0.65), overall CS (rho = -0.61/-0.67), and episiotomy (multiparous: rho = -0.67). Variation in CS rates was mainly due to prelabour CS (rho = 0.96). Countries with higher rates of births with a spontaneous onset had lower rates of emergency CS (nulliparous: rho = -0.62) and higher rates of spontaneous vaginal births (multiparous: rho = 0.70). Prelabour and emergency CS were positively correlated (nulliparous: rho = 0.74). Higher rates of obstetric anal sphincter injury following vaginal birth were found in countries with higher rates of spontaneous birth (nulliparous: rho = 0.65). In countries with higher rates of epidural anaesthesia (nulliparous) and spontaneous births (multiparous), higher rates of Apgar score < 7 were found (rhos = 0.64). No statistically significant variation was found for perinatal mortality. Main limitations were varying quality of data and missing information. Conclusions Considerable intercountry variations were found for all interventions, even after adjusting for population characteristics, indicating overuse of interventions in some countries. Multivariable analyses are essential when comparing intercountry rates. Implementation of evidence-based guidelines is crucial in optimising intervention use and improving quality of maternity care worldwide., Author(s): Anna E. Seijmonsbergen-Schermers 1,*, Thomas van den Akker 2,3, Eva Rydahl 4, Katrien Beeckman 5, Annick Bogaerts 6,7, Lorena Binfa 8, Lucy Frith 9, Mechthild M. Gross 10, Björn [...]

Published
2020
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37. Prevalence and mortality among children with anorectal malformation: A multi‐country analysis

Author

Kancherla, Vijaya, primary, Sundar, Manasvi, additional, Tandaki, Lucita, additional, Lux, Anke, additional, Bakker, Marian K, additional, Bergman, Jorieke EH, additional, Bermejo‐Sánchez, Eva, additional, Canfield, Mark A., additional, Dastgiri, Saeed, additional, Feldkamp, Marcia L., additional, Gatt, Miriam, additional, Groisman, Boris, additional, Hurtado‐Villa, Paula, additional, Kallen, Kärin, additional, Landau, Danielle, additional, Lelong, Nathalie, additional, Lopez‐Camelo, Jorge, additional, Martinez, Laura Elia, additional, Mastroiacovo, Pierpaolo, additional, Morgan, Margery, additional, Mutchinick, Osvaldo M., additional, Nance, Amy E., additional, Nembhard, Wendy N., additional, Pierini, Anna, additional, Sipek, Antonin, additional, Stallings, Erin B., additional, Szabova, Elena, additional, Tagliabue, Giovanna, additional, Wertelecki, Wladimir, additional, Zarante, Ignacio, additional, and Rissmann, Anke, additional

Published
2022
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38. Prevalence of vascular disruption anomalies and association with young maternal age: A EUROCAT study to compare the United Kingdom with other European countries

Author

Morris, Joan K., primary, Wellesley, Diana, additional, Limb, Elizabeth, additional, Bergman, Jorieke E. H., additional, Kinsner‐Ovaskainen, Agnieszka, additional, Addor, Marie Claude, additional, Broughan, Jennifer M., additional, Cavero‐Carbonell, Clara, additional, Dias, Carlos M., additional, Echevarría‐González‐de‐Garibay, Luis‐Javier, additional, Gatt, Miriam, additional, Haeusler, Martin, additional, Barisic, Ingeborg, additional, Klungsoyr, Kari, additional, Lelong, Nathalie, additional, Materna‐Kiryluk, Anna, additional, Neville, Amanda, additional, Nelen, Vera, additional, O'Mahony, Mary T., additional, Perthus, Isabelle, additional, Pierini, Anna, additional, Rankin, Judith, additional, Rissmann, Anke, additional, Rouget, Florence, additional, Sayers, Geraldine, additional, Stevens, Sarah, additional, Tucker, David, additional, and Garne, Ester, additional

Published
2022
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39. Epidemiology of aplasia cutis congenita: A population‐based study in Europe

Author

Coi, Alessio, primary, Barisic, Ingeborg, additional, Garne, Ester, additional, Pierini, Anna, additional, Addor, Marie‐Claude, additional, Aizpurua Atxega, Amaia, additional, Ballardini, Elisa, additional, Braz, Paula, additional, Broughan, Jennifer M., additional, Cavero‐Carbonell, Clara, additional, de Walle, Hermien E. K., additional, Draper, Elizabeth S., additional, Gatt, Miriam, additional, Häusler, Martin, additional, Kinsner‐Ovaskainen, Agnieszka, additional, Kurinczuk, Jennifer J., additional, Lelong, Nathalie, additional, Luyt, Karen, additional, Mezzasalma, Lorena, additional, Mullaney, Carmel, additional, Nelen, Vera, additional, Odak, Ljubica, additional, O'Mahony, Mary T., additional, Perthus, Isabelle, additional, Randrianaivo, Hanitra, additional, Rankin, Judith, additional, Rissmann, Anke, additional, Rouget, Florence, additional, Schaub, Bruno, additional, Tucker, David, additional, Wellesley, Diana, additional, Wiśniewska, Katarzyna, additional, Yevtushok, Lyubov, additional, and Santoro, Michele, additional

Published
2022
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40. Prevalence of congenital heart defects in Europe, 2008–2015: A registry‐based study

Author

Mamasoula, Chrysovalanto, primary, Addor, Marie‐Claude, additional, Carbonell, Clara Cavero, additional, Dias, Carlos M., additional, Echevarría‐González‐de‐Garibay, Luis‐Javier, additional, Gatt, Miriam, additional, Khoshnood, Babak, additional, Klungsoyr, Kari, additional, Randall, Kay, additional, Stoianova, Sylvia, additional, Haeusler, Martin, additional, Nelen, Vera, additional, Neville, Amanda J., additional, Perthus, Isabelle, additional, Pierini, Anna, additional, Bertaut‐Nativel, Bénédicte, additional, Rissmann, Anke, additional, Rouget, Florence, additional, Schaub, Bruno, additional, Tucker, David, additional, Wellesley, Diana, additional, Zymak‐Zakutnia, Natalya, additional, Barisic, Ingeborg, additional, de Walle, Hermien E. K., additional, Lanzoni, Monica, additional, Mullaney, Carmel, additional, Pennington, Lindsay, additional, and Rankin, Judith, additional

Published
2022
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42. Estimating Global Burden of Disease due to congenital anomaly: an analysis of European data

Author

Boyle, Breidge, Addor, Marie-Claude, Arriola, Larraitz, Barisic, Ingeborg, Bianchi, Fabrizio, Csáky-Szunyogh, Melinda, de Walle, Hermien E K, Dias, Carlos Matias, Draper, Elizabeth, Gatt, Miriam, Garne, Ester, Haeusler, Martin, Källén, Karin, Latos-Bielenska, Anna, McDonnell, Bob, Mullaney, Carmel, Nelen, Vera, Neville, Amanda J, O’Mahony, Mary, Queisser-Wahrendorf, Annette, Randrianaivo, Hanitra, Rankin, Judith, Rissmann, Anke, Ritvanen, Annukka, Rounding, Catherine, Tucker, David, Verellen-Dumoulin, Christine, Wellesley, Diana, Wreyford, Ben, Zymak-Zakutnia, Natalia, and Dolk, Helen

Published
2018
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43. How do late terminations of pregnancy affect comparisons of stillbirth rates in Europe? Analyses of aggregated routine data from the Euro‐Peristat Project

Author

Blondel, B, Cuttini, M, Hindori‐Mohangoo, AD, Gissler, M, Loghi, M, Prunet, C, Heino, A, Smith, L, van der Pal‐de Bruin, K, Macfarlane, A, Zeitlin, J, Haidinger, Gerald, Alexander, Sophie, Pavlou, Pavlos, Velebil, Petr, Mortensen, Laust Hvas, Sakkeus, Luule, Lack, Nicholas, Antsaklis, Aris, Berbik, István, Ólafsdóttir, Helga Sól, Bonham, Sheelagh, Misins, Janis, Jaselioniene, Jone, Wagener, Yolande, Gatt, Miriam, Nijhuis, Jan, Klungsoyr, Kari, Szamotulska, Katarzyna, Barros, Henrique, Horga, Mihai, Cap, Jan, Tul, Nataša, Bolúmar, Francisco, Gottvall, Karin, and Berrut, Sylvie

Published
2018
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44. European Recommendations for Primary Prevention of Congenital Anomalies : A Joined Effort of EUROCAT and EUROPLAN Projects to Facilitate Inclusion of This Topic in the National Rare Disease Plans

Author

Taruscio, Domenica, Arriola, Larraitz, Baldi, Francesca, Barisic, Ingeborg, Bermejo-Sánchez, Eva, Bianchi, Fabrizio, Calzolari, Elisa, Carbone, Pietro, Curran, Rhonda, Garne, Ester, Gatt, Miriam, Latos-Bieleńska, Anna, Khoshnood, Babak, Irgens, Lorentz, Mantovani, Alberto, Martínez-Frías, Maria Luisa, Neville, Amanda, Rißmann, Anke, Ruggeri, Stefania, Wellesley, Diana, and Dolk, Helen

Published
2014

45. A multi‐program analysis of cleft lip with cleft palate prevalence and mortality using data from 22 International Clearinghouse for Birth Defects Surveillance and Research programs, 1974–2014.

Author

Mc Goldrick, Niall, Revie, Gavin, Groisman, Boris, Hurtado‐Villa, Paula, Sipek, Antonin, Khoshnood, Babak, Rissmann, Anke, Dastgiri, Saeed, Landau, Danielle, Tagliabue, Giovanna, Pierini, Anna, Gatt, Miriam, Mutchinick, Osvaldo M., Martínez, Laura, de Walle, Hermein E.K., Szabova, Elena, Lopez Camelo, Jorge, Källén, Karin, Morgan, Margery, and Wertelecki, Wladimir

Abstract

Background: Cleft lip with cleft palate (CLP) is a congenital condition that affects both the oral cavity and the lips. This study estimated the prevalence and mortality of CLP using surveillance data collected from birth defect registries around the world. Methods: Data from 22 population‐ and hospital‐based surveillance programs affiliated with the International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR) in 18 countries on live births (LB), stillbirths (SB), and elective terminations of pregnancy for fetal anomaly (ETOPFA) for CLP from 1974 to 2014 were analyzed. Prevalence and survival (survival for LB only) estimates were calculated for total and subclassifications of CLP and by pregnancy outcome. Results: The pooled prevalence of total CLP cases was 6.4 CLP per 10,000 births. The prevalence of CLP and all of the pregnancy outcomes varied across programs. Higher ETOPFA rates were recorded in most European programs compared to programs in other continents. In programs reporting low ETOPFA rates or where there was no ascertainment of ETOPFA, the rate of CLP among LB and SB was higher compared to those where ETOPFA rates were ascertained. Overall survival for total CLP was 91%. For isolated CLP, the survival was 97.7%. CLP associated with multiple congenital anomalies had an overall survival of 77.1%, and for CLP associated with genetic/chromosomal syndromes, overall survival was 40.9%. Conclusions: Total CLP prevalence reported in this study is lower than estimates from prior studies, with variation by pregnancy outcomes between programs. Survival was lower when CLP was associated with other congenital anomalies or syndromes compared to isolated CLP. [ABSTRACT FROM AUTHOR]

Published
2023
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46. Epidemiology of hypospadias in Europe: a registry-based study

Author

Bergman, Jorieke E. H., Loane, Maria, Vrijheid, Martine, Pierini, Anna, Nijman, Rien J. M., Addor, Marie-Claude, Barisic, Ingeborg, Béres, Judit, Braz, Paula, Budd, Judith, Delaney, Virginia, Gatt, Miriam, Khoshnood, Babak, Klungsøyr, Kari, Martos, Carmen, Mullaney, Carmel, Nelen, Vera, Neville, Amanda J., O’Mahony, Mary, Queisser-Luft, Annette, Randrianaivo, Hanitra, Rissmann, Anke, Rounding, Catherine, Tucker, David, Wellesley, Diana, Zymak-Zakutnia, Natalya, Bakker, Marian K., and de Walle, Hermien E. K.

Published
2015
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47. Temporal and geographical variations in survival of children born with congenital anomalies in Europe: A multi‐registry cohort study

Author

Santoro, Michele, primary, Coi, Alessio, additional, Pierini, Anna, additional, Rankin, Judith, additional, Glinianaia, Svetlana V., additional, Tan, Joachim, additional, Reid, Abigail, additional, Garne, Ester, additional, Loane, Maria, additional, Given, Joanne, additional, Aizpurua, Amaia, additional, Astolfi, Gianni, additional, Barisic, Ingeborg, additional, Cavero‐Carbonell, Clara, additional, de Walle, Hermien E. K., additional, Den Hond, Elly, additional, García‐Villodre, Laura, additional, Gatt, Miriam, additional, Gissler, Mika, additional, Jordan, Sue, additional, Khoshnood, Babak, additional, Kiuru‐Kuhlefelt, Sonja, additional, Klungsøyr, Kari, additional, Lelong, Nathalie, additional, Lutke, Renée, additional, Mokoroa, Olatz, additional, Nelen, Vera, additional, Neville, Amanda J., additional, Odak, Ljubica, additional, Rissmann, Anke, additional, Scanlon, Ieuan, additional, Urhoj, Stine Kjaer, additional, Wellesley, Diana, additional, Wertelecki, Wladimir, additional, Yevtushok, Lyubov, additional, and Morris, Joan K., additional

Published
2022
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48. Temporal and geographical variations in survival of children born with congenital anomalies in Europe:A multi-registry cohort study

Author

Santoro, Michele, Coi, Alessio, Pierini, Anna, Rankin, Judith, Glinianaia, Svetlana V, Tan, Joachim, Reid, Abigail, Garne, Ester, Loane, Maria, Given, Joanne, Aizpurua, Amaia, Astolfi, Gianni, Barisic, Ingeborg, Cavero-Carbonell, Clara, de Walle, Hermien E K, Den Hond, Elly, García-Villodre, Laura, Gatt, Miriam, Gissler, Mika, Jordan, Sue, Khoshnood, Babak, Kiuru-Kuhlefelt, Sonja, Klungsøyr, Kari, Lelong, Nathalie, Lutke, Renée, Mokoroa, Olatz, Nelen, Vera, Neville, Amanda J, Odak, Ljubica, Rissmann, Anke, Scanlon, Ieuan, Urhoj, Stine Kjaer, Wellesley, Diana, Wertelecki, Wladimir, Yevtushok, Lyubov, Morris, Joan K, Santoro, Michele, Coi, Alessio, Pierini, Anna, Rankin, Judith, Glinianaia, Svetlana V, Tan, Joachim, Reid, Abigail, Garne, Ester, Loane, Maria, Given, Joanne, Aizpurua, Amaia, Astolfi, Gianni, Barisic, Ingeborg, Cavero-Carbonell, Clara, de Walle, Hermien E K, Den Hond, Elly, García-Villodre, Laura, Gatt, Miriam, Gissler, Mika, Jordan, Sue, Khoshnood, Babak, Kiuru-Kuhlefelt, Sonja, Klungsøyr, Kari, Lelong, Nathalie, Lutke, Renée, Mokoroa, Olatz, Nelen, Vera, Neville, Amanda J, Odak, Ljubica, Rissmann, Anke, Scanlon, Ieuan, Urhoj, Stine Kjaer, Wellesley, Diana, Wertelecki, Wladimir, Yevtushok, Lyubov, and Morris, Joan K

Abstract

BACKGROUND: Congenital anomalies are a major cause of perinatal, neonatal and infant mortality.OBJECTIVES: The aim was to investigate temporal changes and geographical variation in survival of children with major congenital anomalies (CA) in different European areas.METHODS: In this population-based linkage cohort study, 17 CA registries members of EUROCAT, the European network for the surveillance of CAs, successfully linked data on 115,219 live births with CAs to mortality records. Registries estimated Kaplan-Meier survival at 28 days and 5 years of age and fitted Cox's proportional hazards models comparing mortality at 1 year and 1-9 years of age for children born during 2005-2014 with those born during 1995-2004. The hazard ratios (HR) from each registry were combined centrally using a random-effects model. The 5-year survival conditional on having survived to 28 days of age was calculated.RESULTS: The overall risk of death by 1 year of age for children born with any major CA in 2005-2014 decreased compared to 1995-2004 (HR 0.68, 95% confidence interval [CI] 0.53, 0.89). Survival at 5 years of age ranged between registries from 97.6% to 87.0%. The lowest survival was observed for the registry of OMNI-Net (Ukraine) (87.0%, 95% CI 86.1, 87.9).CONCLUSIONS: Survival of children with CAs improved for births in 2005-2014 compared with 1995-2004. The use of CA registry data linked to mortality data enables investigation of survival of children with CAs. Factors such as defining major CAs, proportion of terminations of pregnancy for foetal anomaly, source of mortality data and linkage methods are important to consider in the design of future studies and in the interpretation of the results on survival of children with CAs.

Published
2022

49. Survival of children with rare structural congenital anomalies:a multi-registry cohort study

Author

Coi, Alessio, Santoro, Michele, Pierini, Anna, Rankin, Judith, Glinianaia, Svetlana, Tan, Joachim, Reid, Abigail-Kate, Garne, Ester, Loane, Maria, Given, Joanne, Ballardini, Elisa, Cavero-Carbonell, Clara, de Walle, Hermien E. K., Gatt, Miriam, Garcia-Villodre, Laura, Gissler, Mika, Jordan, Sue, Kiuru-Kuhlefelt, Sonja, Urhøj, Stine Kjær, Klungsoyr, Kari, Lelong, Nathalie, Lutke, L. Renee, Neville, Amanda J., Rahshenas, Makan, Scanlon, Ieuan, Wellesley, Diana, Morris, Joan K., Coi, Alessio, Santoro, Michele, Pierini, Anna, Rankin, Judith, Glinianaia, Svetlana, Tan, Joachim, Reid, Abigail-Kate, Garne, Ester, Loane, Maria, Given, Joanne, Ballardini, Elisa, Cavero-Carbonell, Clara, de Walle, Hermien E. K., Gatt, Miriam, Garcia-Villodre, Laura, Gissler, Mika, Jordan, Sue, Kiuru-Kuhlefelt, Sonja, Urhøj, Stine Kjær, Klungsoyr, Kari, Lelong, Nathalie, Lutke, L. Renee, Neville, Amanda J., Rahshenas, Makan, Scanlon, Ieuan, Wellesley, Diana, and Morris, Joan K.

Abstract

Background Congenital anomalies are the leading cause of perinatal, neonatal and infant mortality in developed countries. Large long-term follow-up studies investigating survival beyond the first year of life in children with rare congenital anomalies are costly and sufficiently large standardized cohorts are difficult to obtain due to the rarity of some anomalies. This study aimed to investigate the survival up to 10 years of age of children born with a rare structural congenital anomaly in the period 1995-2014 in Western Europe. Methods Live births from thirteen EUROCAT (European network for the epidemiological surveillance of congenital anomalies) population-based registries were linked to mortality records. Survival for 12,685 live births with one of the 31 investigated rare structural congenital anomalies (CAs) was estimated at 1 week, 4 weeks and 1, 5 and 10 years of age within each registry and combined across Europe using random effects meta-analyses. Differences between registries were evaluated for the eight rare CAs with at least 500 live births. Results Amongst the investigated CAs, arhinencephaly/holoprosencephaly had the lowest survival at all ages (58.1%, 95% Confidence Interval (CI): 44.3-76.2% at 1 week; 47.4%, CI: 36.4-61.6% at 1 year; 35.6%, CI: 22.2-56.9% at 10 years). Overall, children with rare CAs of the digestive system had the highest survival (> 95% at 1 week, > 84% at 10 years). Most deaths occurred within the first four weeks of life, resulting in a 10-year survival conditional on surviving 4 weeks of over 95% for 17 out of 31 rare CAs. A moderate variability in survival between participating registries was observed for the eight selected rare CAs. Conclusions Pooling standardised data across 13 European CA registries and the linkage to mortality data enabled reliable survival estimates to be obtained at five ages up to ten years. Such estimates are useful for clinical practice and parental counselling.

Published
2022

50. Population birth data and pandemic readiness in Europe

Author

Haidinger, Gerald, Klimont, Jeannette, Alexander, Sophie, Zhang, Wei-Hong, Vandervelpen, Ele, Delnord, Marie, Kolarova, Rumyana, Yordanova, Evelin, Rodin, Urelija, Drausnik, Zeljka, Filipovic-Grcic, Boris, Kyprianou, Theopisti, Scoutellas, Vasos, Velebil, Petr, Mortensen, Laust Hvas, Sakkeus, Luule, Abuladze, Liili, Gissler, Mika, Blondel, Beatrice, Deneux-Tharaux, Catherine, Durox, Melanie, Philibert, Marianne, Zeitlin, Jennifer, Fresson, Jeanne, Heller, Guenther, Misselwitz, Bjoern, Antsaklis, Aris, Berbik, Istvan, Olafsdottir, Helga Sol, Kearns, Karen, Sikora, Izabela, Cuttini, Marina, Loghi, Marzia, Donati, Serena, Boldrini, Rosalia, Misins, Janis, Zile, Irisa, Isakova, Jelena, Touvrey-Lecomte, Aline, Billy, Audrey, Couffignal, Sophie, Weber, Guy, Gatt, Miriam, Nijhuis, Jan, Broeders, Lisa, Achterberg, P. W., Hindori-Mohangoo, Ashna, Klungsoyr, Kari, Akerkar, Rupali, Engjom, Hilde, Szamotulska, Katarzyna, Mierzejewska, Ewa, Barros, Henrique, Rodrigues, Carina, Horga, Mihai, Tica, Vlad, Puscasiu, Lucian, Budianu, Mihaela-Alexandra, Cucu, Alexandra, Calomfirescu, Cristian, Cap, Jan, Mandic, Natasa Tul, Verdenik, Ivan, Zurriaga, Oscar, Alcaide, Adela Recio, Jane, Mireia, Vidal, Maria Jose, Kallen, Karin, Nyman, Anastasia, Rihs, Tonia, Macfarlane, Alison, Wood, Rachael, Monteath, Kirsten, Smith, Lucy, Morgan, Siobhan, Hillen, Jennifer, Haidinger, Gerald, Klimont, Jeannette, Alexander, Sophie, Zhang, Wei-Hong, Vandervelpen, Ele, Delnord, Marie, Kolarova, Rumyana, Yordanova, Evelin, Rodin, Urelija, Drausnik, Zeljka, Filipovic-Grcic, Boris, Kyprianou, Theopisti, Scoutellas, Vasos, Velebil, Petr, Mortensen, Laust Hvas, Sakkeus, Luule, Abuladze, Liili, Gissler, Mika, Blondel, Beatrice, Deneux-Tharaux, Catherine, Durox, Melanie, Philibert, Marianne, Zeitlin, Jennifer, Fresson, Jeanne, Heller, Guenther, Misselwitz, Bjoern, Antsaklis, Aris, Berbik, Istvan, Olafsdottir, Helga Sol, Kearns, Karen, Sikora, Izabela, Cuttini, Marina, Loghi, Marzia, Donati, Serena, Boldrini, Rosalia, Misins, Janis, Zile, Irisa, Isakova, Jelena, Touvrey-Lecomte, Aline, Billy, Audrey, Couffignal, Sophie, Weber, Guy, Gatt, Miriam, Nijhuis, Jan, Broeders, Lisa, Achterberg, P. W., Hindori-Mohangoo, Ashna, Klungsoyr, Kari, Akerkar, Rupali, Engjom, Hilde, Szamotulska, Katarzyna, Mierzejewska, Ewa, Barros, Henrique, Rodrigues, Carina, Horga, Mihai, Tica, Vlad, Puscasiu, Lucian, Budianu, Mihaela-Alexandra, Cucu, Alexandra, Calomfirescu, Cristian, Cap, Jan, Mandic, Natasa Tul, Verdenik, Ivan, Zurriaga, Oscar, Alcaide, Adela Recio, Jane, Mireia, Vidal, Maria Jose, Kallen, Karin, Nyman, Anastasia, Rihs, Tonia, Macfarlane, Alison, Wood, Rachael, Monteath, Kirsten, Smith, Lucy, Morgan, Siobhan, and Hillen, Jennifer

Published
2022

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