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dc.contributor.author
Bakker, Marian K.
dc.contributor.author
Kancherla, Vijaya
dc.contributor.author
Canfield, Mark A.
dc.contributor.author
Bermejo-Sanchez, Eva
dc.contributor.author
Cragan, Janet D.
dc.contributor.author
Dastgiri, Saeed
dc.contributor.author
De Walle, Hermien E. K.
dc.contributor.author
Feldkamp, Marcia L.
dc.contributor.author
Groisman, Boris
dc.contributor.author
Gatt, Miriam
dc.contributor.author
Hurtado Villa, Paula
dc.contributor.author
Kallen, Karin
dc.contributor.author
Landau, Daniella
dc.contributor.author
Lelong, Nathalie
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López Camelo, Jorge Santiago
dc.contributor.author
Martínez, Laura
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Morgan, Margery
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Mutchinick, Osvaldo M.
dc.contributor.author
Nembhard, Wendy N.
dc.contributor.author
Pierini, Anna
dc.contributor.author
Rissmann, Anke
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Sipek, Antonin
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Szabova, Elena
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Tagliabue, Giovanna
dc.contributor.author
Wertelecki, Wladimir
dc.contributor.author
Zarante, Ignacio
dc.contributor.author
Mastroiacovo, Pierpaolo
dc.date.available
2021-12-07T10:20:34Z
dc.date.issued
2019-10
dc.identifier.citation
Bakker, Marian K.; Kancherla, Vijaya; Canfield, Mark A.; Bermejo-Sanchez, Eva; Cragan, Janet D.; et al.; Analysis of Mortality among Neonates and Children with Spina Bifida: An International Registry-Based Study, 2001-2012; Wiley Blackwell Publishing, Inc; Paediatric And Perinatal Epidemiology.; 33; 6; 10-2019; 436-448
dc.identifier.issn
0269-5022
dc.identifier.uri
http://hdl.handle.net/11336/148335
dc.description.abstract
Background: Medical advancements have resulted in better survival and life expectancy among those with spina bifida, but a significantly increased risk of perinatal and postnatal mortality for individuals with spina bifida remains. Objectives: To examine stillbirth and infant and child mortality among those affected by spina bifida using data from multiple countries. Methods: We conducted an observational study, using data from 24 population- and hospital-based surveillance registries in 18 countries contributing as members of the International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR). Cases of spina bifida that resulted in livebirths or stillbirths from 20 weeks' gestation or elective termination of pregnancy for fetal anomaly (ETOPFA) were included. Among liveborn spina bifida cases, we calculated mortality at different ages as number of deaths among liveborn cases divided by total number of liveborn cases with spina bifida. As a secondary outcome measure, we estimated the prevalence of spina bifida per 10 000 total births. The 95% confidence interval for the prevalence estimate was estimated using the Poisson approximation of binomial distribution. Results: Between years 2001 and 2012, the overall first-week mortality proportion was 6.9% (95% CI 6.3, 7.7) and was lower in programmes operating in countries with policies that allowed ETOPFA compared with their counterparts (5.9% vs. 8.4%). The majority of first-week mortality occurred on the first day of life. In programmes where information on long-term mortality was available through linkage to administrative databases, survival at 5 years of age was 90%-96% in Europe, and 86%-96% in North America. Conclusions: Our multi-country study showed a high proportion of stillbirth and infant and child deaths among those with spina bifida. Effective folic acid interventions could prevent many cases of spina bifida, thereby preventing associated childhood morbidity and mortality.
dc.format
application/pdf
dc.language.iso
eng
dc.publisher
Wiley Blackwell Publishing, Inc
dc.rights
info:eu-repo/semantics/openAccess
dc.rights.uri
https://creativecommons.org/licenses/by/2.5/ar/
dc.subject
EPIDEMIOLOGY
dc.subject
MORTALITY
dc.subject
REGISTRY-BASED STUDY
dc.subject
SPINA BIFIDA
dc.subject.classification
Epidemiología
dc.subject.classification
Ciencias de la Salud
dc.subject.classification
CIENCIAS MÉDICAS Y DE LA SALUD
dc.title
Analysis of Mortality among Neonates and Children with Spina Bifida: An International Registry-Based Study, 2001-2012
dc.type
info:eu-repo/semantics/article
dc.type
info:ar-repo/semantics/artículo
dc.type
info:eu-repo/semantics/publishedVersion
dc.date.updated
2020-11-11T15:52:40Z
dc.journal.volume
33
dc.journal.number
6
dc.journal.pagination
436-448
dc.journal.pais
Reino Unido
dc.journal.ciudad
Londres
dc.description.fil
Fil: Bakker, Marian K.. University of Groningen; Países Bajos
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Fil: Kancherla, Vijaya. University of Emory; Estados Unidos
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Fil: Canfield, Mark A.. No especifíca;
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Fil: Bermejo-Sanchez, Eva. Instituto de Salud Carlos Iii (isciii); España
dc.description.fil
Fil: Cragan, Janet D.. Centers for Disease Control and Prevention; Estados Unidos
dc.description.fil
Fil: Dastgiri, Saeed. University Of Medical Sciences Tabriz; Irán
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Fil: De Walle, Hermien E. K.. Pontificia Universidad Javeriana; Colombia
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Fil: Feldkamp, Marcia L.. No especifíca;
dc.description.fil
Fil: Groisman, Boris. Dirección Nacional de Instituto de Investigación.Administración Nacional de Laboratorios e Institutos de Salud "Dr. Carlos G. Malbrán"; Argentina. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina
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Fil: Gatt, Miriam. Pontificia Universidad Javeriana; Colombia
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Fil: Hurtado Villa, Paula. Lund University; Suecia
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Fil: Kallen, Karin. No especifíca;
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Fil: Landau, Daniella. Sorbonne University; Francia
dc.description.fil
Fil: Lelong, Nathalie. No especifíca;
dc.description.fil
Fil: López Camelo, Jorge Santiago. Consejo Nacional de Investigaciones Científicas y Técnicas. Oficina de Coordinación Administrativa Parque Centenario. CEMIC-CONICET. Centro de Educaciones Médicas e Investigaciones Clínicas "Norberto Quirno". CEMIC-CONICET; Argentina
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Fil: Martínez, Laura. Singleton Hospital; Reino Unido
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Fil: Morgan, Margery. No especifíca;
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Fil: Mutchinick, Osvaldo M.. No especifíca;
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Fil: Nembhard, Wendy N.. No especifíca;
dc.description.fil
Fil: Pierini, Anna. No especifíca;
dc.description.fil
Fil: Rissmann, Anke. Otto-von-Guericke-Universität Magdeburg; Alemania
dc.description.fil
Fil: Sipek, Antonin. No especifíca;
dc.description.fil
Fil: Szabova, Elena. No especifíca;
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Fil: Tagliabue, Giovanna. No especifíca;
dc.description.fil
Fil: Wertelecki, Wladimir. No especifíca;
dc.description.fil
Fil: Zarante, Ignacio. Pontificia Universidad Javeriana; Colombia
dc.description.fil
Fil: Mastroiacovo, Pierpaolo. No especifíca;
dc.journal.title
Paediatric And Perinatal Epidemiology.
dc.relation.alternativeid
info:eu-repo/semantics/altIdentifier/url/https://onlinelibrary.wiley.com/doi/abs/10.1111/ppe.12589
dc.relation.alternativeid
info:eu-repo/semantics/altIdentifier/doi/http://dx.doi.org/10.1111/ppe.12589
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