Paper 6: EUROCAT member registries: organization and activities

Hdl Handle:
http://hdl.handle.net/10147/324095
Title:
Paper 6: EUROCAT member registries: organization and activities
Authors:
Greenlees, Ruth; Neville, Amanda; Addor, Marie-Claude; Amar, Emmanuelle; Arriola, Larraitz; Bakker, Marian; Barisic, Ingeborg; Boyd, Patricia A.; Calzolari, Elisa; Doray, Berenice; Draper, Elizabeth; Emil Vollset, Stein; Garne, Ester; Gatt, Miriam; Haeusler, Martin; Kallen, Karin; Khoshnood, Babak; Latos-Bielenska, Anna; Martinez-Frias, Maria-Luisa; Materna-Kiryluk, Anna; Matias Dias, Carlos; 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; Wertelecki, Wladimir
Citation:
Greenlees R et al. Paper 6: EUROCAT member registries: Organization and activities 2011, 91 (S1):S51 Birth Defects Research Part A: Clinical and Molecular Teratology
Journal:
Birth Defects Research Part A: Clinical and Molecular Teratology
Issue Date:
2011
URI:
http://hdl.handle.net/10147/324095
DOI:
10.1002/bdra.20775
Additional Links:
http://doi.wiley.com/10.1002/bdra.20775
Item Type:
Article
Language:
en
Description:
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. Copyright © 2011 Wiley-Liss, Inc.
Keywords:
PUBLIC HEALTH
Local subject classification:
BIRTH DEFECTS; PUBLIC HEALTH DEPARTMENT; CONGENITAL ANOMALY; HEALTH IMPROVEMENT
ISSN:
15420752

Full metadata record

DC FieldValue Language
dc.contributor.authorGreenlees, Ruthen_GB
dc.contributor.authorNeville, Amandaen_GB
dc.contributor.authorAddor, Marie-Claudeen_GB
dc.contributor.authorAmar, Emmanuelleen_GB
dc.contributor.authorArriola, Larraitzen_GB
dc.contributor.authorBakker, Marianen_GB
dc.contributor.authorBarisic, Ingeborgen_GB
dc.contributor.authorBoyd, Patricia A.en_GB
dc.contributor.authorCalzolari, Elisaen_GB
dc.contributor.authorDoray, Bereniceen_GB
dc.contributor.authorDraper, Elizabethen_GB
dc.contributor.authorEmil Vollset, Steinen_GB
dc.contributor.authorGarne, Esteren_GB
dc.contributor.authorGatt, Miriamen_GB
dc.contributor.authorHaeusler, Martinen_GB
dc.contributor.authorKallen, Karinen_GB
dc.contributor.authorKhoshnood, Babaken_GB
dc.contributor.authorLatos-Bielenska, Annaen_GB
dc.contributor.authorMartinez-Frias, Maria-Luisaen_GB
dc.contributor.authorMaterna-Kiryluk, Annaen_GB
dc.contributor.authorMatias Dias, Carlosen_GB
dc.contributor.authorMcDonnell, Boben_GB
dc.contributor.authorMullaney, Carmelen_GB
dc.contributor.authorNelen, Veraen_GB
dc.contributor.authorO'Mahony, Maryen_GB
dc.contributor.authorPierini, Annaen_GB
dc.contributor.authorQueisser-Luft, Annetteen_GB
dc.contributor.authorRandrianaivo-Ranjatoélina, Hanitraen_GB
dc.contributor.authorRankin, Judithen_GB
dc.contributor.authorRissmann, Ankeen_GB
dc.contributor.authorRitvanen, Annukkaen_GB
dc.contributor.authorSalvador, Joaquinen_GB
dc.contributor.authorSipek, Antoninen_GB
dc.contributor.authorTucker, Daviden_GB
dc.contributor.authorVerellen-Dumoulin, Christineen_GB
dc.contributor.authorWellesley, Dianaen_GB
dc.contributor.authorWertelecki, Wladimiren_GB
dc.date.accessioned2014-08-01T12:09:53Zen
dc.date.available2014-08-01T12:09:53Zen
dc.date.issued2011en
dc.identifier.citationGreenlees R et al. Paper 6: EUROCAT member registries: Organization and activities 2011, 91 (S1):S51 Birth Defects Research Part A: Clinical and Molecular Teratologyen_GB
dc.identifier.issn15420752en
dc.identifier.doi10.1002/bdra.20775en
dc.identifier.urihttp://hdl.handle.net/10147/324095en
dc.descriptionBACKGROUND: 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. Copyright © 2011 Wiley-Liss, Inc.en_GB
dc.language.isoenen
dc.relation.urlhttp://doi.wiley.com/10.1002/bdra.20775en_GB
dc.rightsArchived with thanks to Birth Defects Research Part A: Clinical and Molecular Teratologyen_GB
dc.subjectPUBLIC HEALTHen_GB
dc.subject.otherBIRTH DEFECTSen_GB
dc.subject.otherPUBLIC HEALTH DEPARTMENTen
dc.subject.otherCONGENITAL ANOMALYen
dc.subject.otherHEALTH IMPROVEMENTen
dc.titlePaper 6: EUROCAT member registries: organization and activitiesen_GB
dc.typeArticleen
dc.identifier.journalBirth Defects Research Part A: Clinical and Molecular Teratologyen_GB
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