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RESEARCH PRODUCT
Paper 6: EUROCAT member registries: organization and activities.
Anna Latos-bielenskaPatricia A. BoydChristine Verellen-dumoulinCarmel MullaneyKarin KällénBérénice DorayMarian K. BakkerVera NelenBabak KhoshnoodAntonin SipekStein Emil VollsetAnnukka RitvanenBob McdonnellEster GarneHanitra Randrianaivo-ranjatoelinaAnna Materna-kirylukAnnette Queisser-luftJoaquin SalvadorAmanda J. NevilleEmmanuelle AmarAnke RissmannDavid TuckerMartin HaeuslerMiriam GattElizabeth S DraperElisa CalzolariRuth GreenleesAnna PieriniMary O'mahonyLarraitz ArriolaWladimir WerteleckiJudith RankinMarie-claude AddorDiana WellesleyCarlos Matias DiasIngeborg BarišićMaría Luisa Martínez-fríassubject
EmbryologyPediatricsDatabases FactualENGLANDMultiple congenital anomalyAge limit0302 clinical medicinePregnancyPrenatal DiagnosisPrevalenceConfidentiality030212 general & internal medicineRegistriesRISK0303 health scienceseducation.field_of_studyFetal death030305 genetics & hereditycongenital anomaly registriesGeneral MedicineorganizationStillbirthascertainment3. Good healthComputer algorithmEuropeCONGENITAL-ANOMALIESPrenatal screeningEvaluation Studies as TopicPopulation SurveillanceCommittee MembershipFemaleMedical emergencymedicine.medical_specialtyPopulationPopulation basedCongenital Abnormalities03 medical and health sciencesmedicineHumanseducationFetal DeathInternetbusiness.industryRENACAbortion InducedEstados de Saúde e de Doençamedicine.diseasepopulation-basedcongenital anomalies ; Europe ; multiple congenital anomaly ; computer algorithm ; classification ; surveillance ; etiologyPediatrics Perinatology and Child HealthbusinessDevelopmental Biologydescription
BACKGROUND: 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. Birth Defects Research (Part A) 91: S51-S100, 2011. (C) 2011 Wiley-Liss, Inc.
| year | journal | country | edition | language |
|---|---|---|---|---|
| 2011-03-01 | Birth defects research. Part A, Clinical and molecular teratology |