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Paper 6 - EUROCAT Member Registries: Organization and Activities

2011-03-04Journal article Open access
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dc.contributor.authorGreenless, Ruth
dc.contributor.authorNeville, Amanda
dc.contributor.authorAddor, Marie–Clauder
dc.contributor.authorAmar, Emmanuelleder
dc.contributor.authorArriola, Larraitz
dc.contributor.authorBakker, Marian
dc.contributor.authorBarisic, Ingeborg
dc.contributor.authorBoyd, Patricia A.
dc.contributor.authorCalzolari, Elisa
dc.contributor.authorDoray, Berenice
dc.contributor.authorDraper, Elizabeth
dc.contributor.authorVollset, Stein Emili
dc.contributor.authorGarne, Ester
dc.contributor.authorGatt, Miriam
dc.contributor.authorHaeusler, Martin
dc.contributor.authorKallen, Karin
dc.contributor.authorKhoshnood, Babak
dc.contributor.authorLatos–Bielenska, Anna
dc.contributor.authorMartinez–Friasa, Maria–Luisa
dc.contributor.authorMaterna–Kiryluk, Anna
dc.contributor.authorDias, Carlos Matias
dc.contributor.authorMcDonnell, Bob
dc.contributor.authorMullaney, Carmel
dc.contributor.authorNelen, Vera
dc.contributor.authorO’Mahony, Mary
dc.contributor.authorPierini, Anna
dc.contributor.authorQueisser–Luft, Annette
dc.contributor.authorRandrianaivo–Ranjatoélina, Hanitra
dc.contributor.authorRankin, Judith
dc.contributor.authorRissmann, Anke
dc.contributor.authorRitvanen, Annukka
dc.contributor.authorSalvador, Joaquin
dc.contributor.authorSipek, Antonin
dc.contributor.authorTucker, David
dc.contributor.authorVerellen–Dumoulin, Christine
dc.contributor.authorWellesley, Diana
dc.contributor.authorWerteleckir, Wladimir
dc.date.accessioned2012-02-13T12:13:47Z
dc.date.available2012-02-13T12:13:47Z
dc.date.issued2011-03-04
dc.description.abstractEUROCAT is a network of population-based congenital anomaly registries providing standardized epidemiologic information on congenital anomalies in Europe. There are three types of EUROCAT membership: full, associate, or affiliate. Full member registries send individual records of all congenital anomalies covered by their region. Associate members transmit aggregate case counts for each EUROCAT anomaly subgroup by year and by type of birth. This article describes the organization and activities of each of the current 29 full member and 6 associate member registries of EUROCAT. METHODS: Each registry description provides information on the history and funding of the registry, population coverage including any changes in coverage over time, sources for ascertaining cases of congenital anomalies, and upper age limit for registering cases of congenital anomalies. It also details the legal requirements relating to termination of pregnancy for fetal anomalies, the definition of stillbirths and fetal deaths, and the prenatal screening policy within the registry. Information on availability of exposure information and denominators is provided. The registry description describes how each registry conforms to the laws and guidelines regarding ethics, consent, and confidentiality issues within their own jurisdiction. Finally, information on electronic and web-based data capture, recent registry activities, and publications relating to congenital anomalies, along with the contact details of the registry leader, are provided. CONCLUSIONS: The registry description gives a detailed account of the organizational and operational aspects of each registry and is an invaluable resource that aids interpretation and evaluation of registry prevalence data.por
dc.identifier.citationBirth Defects Res A Clin Mol Teratol. 2011 Mar;91 Suppl 1:S51-S100. doi: 10.1002/bdra.20775. Epub 2011 Mar 4por
dc.identifier.issn1542-0752
dc.identifier.otherdoi: 10.1002/bdra.20775
dc.identifier.urihttp://hdl.handle.net/10400.18/515
dc.language.isoengpor
dc.peerreviewedyespor
dc.publisherWiley-Lisspor
dc.relation.publisherversionhttp://onlinelibrary.wiley.com/doi/10.1002/bdra.20775/pdfpor
dc.subjectCongenital Anomaly Registriespor
dc.subjectPopulation-basedpor
dc.subjectAscertainmentpor
dc.subjectOrganizationpor
dc.subjectEuropepor
dc.subjectEstados de Saúde e de Doençapor
dc.subjectRENACpor
dc.titlePaper 6 - EUROCAT Member Registries: Organization and Activitiespor
dc.typejournal article
dspace.entity.typePublication
oaire.citation.endPageS100por
oaire.citation.startPageS51por
oaire.citation.titleBirth Defects Research Part A: Clinical and Molecular Teratologypor
rcaap.rightsopenAccesspor
rcaap.typearticlepor

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