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Title: Paper 6 : EUROCAT member registries : organization and activities
Authors: Gatt, Miriam
Greenlees, Ruth
Neville, Amanda
Addor, Marie-Claude
Amar, Emmanuelle
Arriola, Larraitz
Bakker, Marian
Barisic, Ingeborg
Boyd, Patricia A.
Calzolari, Elisa
Doray, Berenice
Draper, Elizabeth
Vollset, Stein Emil
Garne, Ester
Haeusler, Martin
Kallen, Karin
Khoshnood, Babak
Latos-Bielenska, Anna
Martinez–Frias, Maria–Luisa
Materna–Kiryluk, Anna
Dias, Carlos Matias
McDonnell, Bob
Mullaney, Carmel
Nelen, Vera
O'Mahony, Mary
Pierini, Anna
Queisser–Luft, Annette
Randrianaivo–Ranjatoelina, Hanitra
Rankin, Judith
Rissmann, Anke
Ritvanen, Annukka
Salvador, Joaquin
Sipek, Antonin
Tucker, David
Verellen–Dumoulin, Christine
Wellesley, Diana
Werteleck, Wladimir
Keywords: Abnormalities, Human
Abnormalities, Human -- Statistics -- Europe
Abnormalities, Human -- Statistics -- Malta
Medical statistics -- Europe
Registries -- Europe
Issue Date: 2011
Publisher: Wiley Online Library
Citation: Greenlees, 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.
Abstract: 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.
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