Paper 6: EUROCAT Member Registries: Organization and Activities

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title = "Paper 6: EUROCAT Member Registries: Organization and Activities",
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. Birth Defects Research (Part A) 91: S51-S100, 2011. (C) 2011 Wiley-Liss, Inc.",
keywords = "congenital anomaly registries, population-based, ascertainment, organization, Europe",
author = "Ruth Greenlees and Amanda Neville and Marie-Claude Addor and Emmanuelle Amar and Larraitz Arriola and Marian Bakker and Ingeborg Barisic and Boyd, {Patricia A.} and Elisa Calzolari and Berenice Doray and Elizabeth Draper and Vollset, {Stein Emil} and Ester Garne and Miriam Gatt and Martin Haeusler and Karin K{\"a}ll{\'e}n and Babak Khoshnood and Anna Latos-Bielenska and Maria-Luisa Martinez-Frias and Anna Materna-Kiryluk and Dias, {Carlos Matias} and Bob McDonnell and Carmel Mullaney and Vera Nelen and Mary O'Mahony and Anna Pierini and Annette Queisser-Luft and Hanitra Randrianaivo-Ranjatoelina and Judith Rankin and Anke Rissmann and Annukka Ritvanen and Joaquin Salvador and Antonin Sipek and David Tucker and Christine Verellen-Dumoulin and Diana Wellesley and Wladimir Wertelecki",
year = "2011",
doi = "10.1002/bdra.20775",
language = "English",
volume = "91",
pages = "S51--S100",
journal = "Birth Defects Research Part C - Embryo Today: Reviews",
issn = "1542-975X",
publisher = "Wiley-Blackwell",
number = "Suppl. 1",