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dc.contributor.authorGatt, Miriam-
dc.contributor.authorGreenlees, Ruth-
dc.contributor.authorNeville, Amanda-
dc.contributor.authorAddor, Marie-Claude-
dc.contributor.authorAmar, Emmanuelle-
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 Emil-
dc.contributor.authorGarne, Ester-
dc.contributor.authorHaeusler, Martin-
dc.contributor.authorKallen, Karin-
dc.contributor.authorKhoshnood, Babak-
dc.contributor.authorLatos-Bielenska, Anna-
dc.contributor.authorMartinez–Frias, 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–Ranjatoelina, 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.authorWerteleck, Wladimir-
dc.identifier.citationGreenlees, R., Neville, A., Addor, M. C., Amar, E., Arriola, L., Bakker, M.,... Wertelecki, W. (2011). Paper 6: EUROCAT member registries: organization and activities. Birth Defects Research Part A: Clinical and Molecular Teratology, 91(S1), S51-S100.en_GB
dc.description.abstractBackground: EUROCAT 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.en_GB
dc.publisherWiley Online Libraryen_GB
dc.subjectAbnormalities, Humanen_GB
dc.subjectAbnormalities, Human -- Statistics -- Europeen_GB
dc.subjectAbnormalities, Human -- Statistics -- Maltaen_GB
dc.subjectMedical statistics -- Europeen_GB
dc.subjectRegistries -- Europeen_GB
dc.titlePaper 6 : EUROCAT member registries : organization and activitiesen_GB
dc.rights.holderThe copyright of this work belongs to the author(s)/publisher. The rights of this work are as defined by the appropriate Copyright Legislation or as modified by any successive legislation. Users may access this work and can make use of the information contained in accordance with the Copyright Legislation provided that the author must be properly acknowledged. Further distribution or reproduction in any format is prohibited without the prior permission of the copyright holder.en_GB
dc.publication.titleBirth Defects Researchen_GB
Appears in Collections:Scholarly Works - ERCMedGen

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