Paper 6: EUROCAT member registries: organization and activities

Autor: Anna Latos-Bielenska, Patricia A. Boyd, Christine Verellen-Dumoulin, Carmel Mullaney, Karin Källén, Bérénice Doray, Marian K. Bakker, Vera Nelen, Babak Khoshnood, Antonin Sipek, Stein Emil Vollset, Annukka Ritvanen, Bob McDonnell, Ester Garne, Hanitra Randrianaivo-Ranjatoelina, Anna Materna-Kiryluk, Annette Queisser-Luft, Joaquin Salvador, Amanda J. Neville, Emmanuelle Amar, Anke Rissmann, David Tucker, Martin Haeusler, Miriam Gatt, Elizabeth S Draper, Elisa Calzolari, Ruth Greenlees, Anna Pierini, Mary O'Mahony, Larraitz Arriola, Wladimir Wertelecki, Judith Rankin, Marie-Claude Addor, Diana Wellesley, Carlos Matias Dias, Ingeborg Barišić, María Luisa Martínez-Frías
Rok vydání: 2010
Předmět:
Embryology
Pediatrics
Databases
Factual
ENGLAND
Multiple congenital anomaly
Age limit
0302 clinical medicine
Pregnancy
Prenatal Diagnosis
Prevalence
Confidentiality
030212 general & internal medicine
Registries
RISK
0303 health sciences
education.field_of_study
Fetal death
030305 genetics & heredity
congenital anomaly registries
General Medicine
organization
Stillbirth
ascertainment
3. Good health
Computer algorithm
Europe
CONGENITAL-ANOMALIES
Prenatal screening
Evaluation Studies as Topic
Population Surveillance
Committee Membership
Female
Medical emergency
medicine.medical_specialty
Population
Population based
Congenital Abnormalities
03 medical and health sciences
medicine
Humans
education
Fetal Death
Internet
business.industry
RENAC
Abortion
Induced
Estados de Saúde e de Doença
medicine.disease
population-based
congenital anomalies
multiple congenital anomaly
computer algorithm
classification
surveillance
etiology
Pediatrics
Perinatology and Child Health
business
Developmental Biology
Zdroj: Greenlees, R, Neville, A, Addor, M-C, Amar, E, Arriola, L, Bakker, M, Barisic, I, Boyd, P A, Calzolari, E, Doray, B, Draper, E, Vollset, S E, Garne, E, Gatt, M, Haeusler, M, Kallen, K, Khoshnood, B, Latos-Bielenska, A, Martinez-Frias, M-L, Materna-Kiryluk, A, Dias, C M, McDonnell, B, Mullaney, C, Nelen, V, O'Mahony, M, Pierini, A, Queisser-Luft, A, Randrianaivo-Ranjatoélina, H, Rankin, J, Rissmann, A, Ritvanen, A, Salvador, J, Sipek, A, Tucker, D, Verellen-Dumoulin, C, Wellesley, D & Wertelecki, W 2011, ' Paper 6: EUROCAT member registries: organization and activities ', Birth Defects Research. Part A: Clinical and Molecular Teratology, vol. 91 Suppl 1, pp. S51-S100 . https://doi.org/10.1002/bdra.20775
BIRTH DEFECTS RESEARCH PART A-CLINICAL AND MOLECULAR TERATOLOGY
r-IIB SANT PAU. Repositorio Institucional de Producción Científica del Instituto de Investigación Biomédica Sant Pau
instname
ISSN: 1542-0760
1542-0752
DOI: 10.1002/bdra.20775
Popis: 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.
Databáze: OpenAIRE
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