Paper 6 - EUROCAT Member Registries: Organization and Activities
Autor(a) principal: | |
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Data de Publicação: | 2011 |
Outros Autores: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
Tipo de documento: | Artigo |
Idioma: | eng |
Título da fonte: | Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
Texto Completo: | http://hdl.handle.net/10400.18/515 |
Resumo: | 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. |
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Paper 6 - EUROCAT Member Registries: Organization and ActivitiesCongenital Anomaly RegistriesPopulation-basedAscertainmentOrganizationEuropeEstados de Saúde e de DoençaRENACEUROCAT 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.Wiley-LissRepositório Científico do Instituto Nacional de SaúdeGreenless, RuthNeville, AmandaAddor, Marie–ClauderAmar, EmmanuellederArriola, LarraitzBakker, MarianBarisic, IngeborgBoyd, Patricia A.Calzolari, ElisaDoray, BereniceDraper, ElizabethVollset, Stein EmiliGarne, EsterGatt, MiriamHaeusler, MartinKallen, KarinKhoshnood, BabakLatos–Bielenska, AnnaMartinez–Friasa, Maria–LuisaMaterna–Kiryluk, AnnaDias, Carlos MatiasMcDonnell, BobMullaney, CarmelNelen, VeraO’Mahony, MaryPierini, AnnaQueisser–Luft, AnnetteRandrianaivo–Ranjatoélina, HanitraRankin, JudithRissmann, AnkeRitvanen, AnnukkaSalvador, JoaquinSipek, AntoninTucker, DavidVerellen–Dumoulin, ChristineWellesley, DianaWerteleckir, Wladimir2012-02-13T12:13:47Z2011-03-042011-03-04T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10400.18/515engBirth Defects Res A Clin Mol Teratol. 2011 Mar;91 Suppl 1:S51-S100. doi: 10.1002/bdra.20775. Epub 2011 Mar 41542-0752doi: 10.1002/bdra.20775info:eu-repo/semantics/openAccessreponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAP2023-07-20T15:38:19Zoai:repositorio.insa.pt:10400.18/515Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-19T18:35:51.601128Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãofalse |
dc.title.none.fl_str_mv |
Paper 6 - EUROCAT Member Registries: Organization and Activities |
title |
Paper 6 - EUROCAT Member Registries: Organization and Activities |
spellingShingle |
Paper 6 - EUROCAT Member Registries: Organization and Activities Greenless, Ruth Congenital Anomaly Registries Population-based Ascertainment Organization Europe Estados de Saúde e de Doença RENAC |
title_short |
Paper 6 - EUROCAT Member Registries: Organization and Activities |
title_full |
Paper 6 - EUROCAT Member Registries: Organization and Activities |
title_fullStr |
Paper 6 - EUROCAT Member Registries: Organization and Activities |
title_full_unstemmed |
Paper 6 - EUROCAT Member Registries: Organization and Activities |
title_sort |
Paper 6 - EUROCAT Member Registries: Organization and Activities |
author |
Greenless, Ruth |
author_facet |
Greenless, Ruth Neville, Amanda Addor, Marie–Clauder Amar, Emmanuelleder Arriola, Larraitz Bakker, Marian Barisic, Ingeborg Boyd, Patricia A. Calzolari, Elisa Doray, Berenice Draper, Elizabeth Vollset, Stein Emili Garne, Ester Gatt, Miriam Haeusler, Martin Kallen, Karin Khoshnood, Babak Latos–Bielenska, Anna Martinez–Friasa, Maria–Luisa Materna–Kiryluk, Anna Dias, Carlos Matias McDonnell, Bob Mullaney, Carmel Nelen, Vera O’Mahony, Mary Pierini, Anna Queisser–Luft, Annette Randrianaivo–Ranjatoélina, Hanitra Rankin, Judith Rissmann, Anke Ritvanen, Annukka Salvador, Joaquin Sipek, Antonin Tucker, David Verellen–Dumoulin, Christine Wellesley, Diana Werteleckir, Wladimir |
author_role |
author |
author2 |
Neville, Amanda Addor, Marie–Clauder Amar, Emmanuelleder Arriola, Larraitz Bakker, Marian Barisic, Ingeborg Boyd, Patricia A. Calzolari, Elisa Doray, Berenice Draper, Elizabeth Vollset, Stein Emili Garne, Ester Gatt, Miriam Haeusler, Martin Kallen, Karin Khoshnood, Babak Latos–Bielenska, Anna Martinez–Friasa, Maria–Luisa Materna–Kiryluk, Anna Dias, Carlos Matias McDonnell, Bob Mullaney, Carmel Nelen, Vera O’Mahony, Mary Pierini, Anna Queisser–Luft, Annette Randrianaivo–Ranjatoélina, Hanitra Rankin, Judith Rissmann, Anke Ritvanen, Annukka Salvador, Joaquin Sipek, Antonin Tucker, David Verellen–Dumoulin, Christine Wellesley, Diana Werteleckir, Wladimir |
author2_role |
author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author |
dc.contributor.none.fl_str_mv |
Repositório Científico do Instituto Nacional de Saúde |
dc.contributor.author.fl_str_mv |
Greenless, Ruth Neville, Amanda Addor, Marie–Clauder Amar, Emmanuelleder Arriola, Larraitz Bakker, Marian Barisic, Ingeborg Boyd, Patricia A. Calzolari, Elisa Doray, Berenice Draper, Elizabeth Vollset, Stein Emili Garne, Ester Gatt, Miriam Haeusler, Martin Kallen, Karin Khoshnood, Babak Latos–Bielenska, Anna Martinez–Friasa, Maria–Luisa Materna–Kiryluk, Anna Dias, Carlos Matias McDonnell, Bob Mullaney, Carmel Nelen, Vera O’Mahony, Mary Pierini, Anna Queisser–Luft, Annette Randrianaivo–Ranjatoélina, Hanitra Rankin, Judith Rissmann, Anke Ritvanen, Annukka Salvador, Joaquin Sipek, Antonin Tucker, David Verellen–Dumoulin, Christine Wellesley, Diana Werteleckir, Wladimir |
dc.subject.por.fl_str_mv |
Congenital Anomaly Registries Population-based Ascertainment Organization Europe Estados de Saúde e de Doença RENAC |
topic |
Congenital Anomaly Registries Population-based Ascertainment Organization Europe Estados de Saúde e de Doença RENAC |
description |
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. |
publishDate |
2011 |
dc.date.none.fl_str_mv |
2011-03-04 2011-03-04T00:00:00Z 2012-02-13T12:13:47Z |
dc.type.status.fl_str_mv |
info:eu-repo/semantics/publishedVersion |
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/article |
format |
article |
status_str |
publishedVersion |
dc.identifier.uri.fl_str_mv |
http://hdl.handle.net/10400.18/515 |
url |
http://hdl.handle.net/10400.18/515 |
dc.language.iso.fl_str_mv |
eng |
language |
eng |
dc.relation.none.fl_str_mv |
Birth Defects Res A Clin Mol Teratol. 2011 Mar;91 Suppl 1:S51-S100. doi: 10.1002/bdra.20775. Epub 2011 Mar 4 1542-0752 doi: 10.1002/bdra.20775 |
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info:eu-repo/semantics/openAccess |
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openAccess |
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application/pdf |
dc.publisher.none.fl_str_mv |
Wiley-Liss |
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Wiley-Liss |
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Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
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RCAAP |
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RCAAP |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
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1799132087522951168 |