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Paper 6: EUROCAT Member Registries: Organization and Activities

Greenlees, Ruth; Neville, Amanda; Addor, Marie-Claude; Amar, Emmanuelle; Arriola, Larraitz; Bakker, Marian; Barisic, Ingeborg; Boyd, Patricia A.; Calzolari, Elisa and Doray, Berenice, et al. (2011) In Birth Defects Research Part C: Embryo Today: Reviews 91(Suppl. 1). p.51-100
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... (More)
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. (Less)
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keywords
congenital anomaly registries, population-based, ascertainment, organization, Europe
in
Birth Defects Research Part C: Embryo Today: Reviews
volume
91
issue
Suppl. 1
pages
51 - 100
publisher
Wiley-Blackwell
external identifiers
  • wos:000289374900007
  • scopus:79952671830
ISSN
1542-975X
DOI
10.1002/bdra.20775
language
English
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yes
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afe4f7fa-d7ac-490b-aefc-4ab51bab80a5 (old id 1965987)
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2011-06-01 10:50:38
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2017-09-10 03:21:27
@article{afe4f7fa-d7ac-490b-aefc-4ab51bab80a5,
  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.},
  author       = {Greenlees, Ruth and Neville, Amanda and Addor, Marie-Claude and Amar, Emmanuelle and Arriola, Larraitz and Bakker, Marian and Barisic, Ingeborg and Boyd, Patricia A. and Calzolari, Elisa and Doray, Berenice and Draper, Elizabeth and Vollset, Stein Emil and Garne, Ester and Gatt, Miriam and Haeusler, Martin and Källén, Karin and Khoshnood, Babak and Latos-Bielenska, Anna and Martinez-Frias, Maria-Luisa and Materna-Kiryluk, Anna and Dias, Carlos Matias and McDonnell, Bob and Mullaney, Carmel and Nelen, Vera and O'Mahony, Mary and Pierini, Anna and Queisser-Luft, Annette and Randrianaivo-Ranjatoelina, Hanitra and Rankin, Judith and Rissmann, Anke and Ritvanen, Annukka and Salvador, Joaquin and Sipek, Antonin and Tucker, David and Verellen-Dumoulin, Christine and Wellesley, Diana and Wertelecki, Wladimir},
  issn         = {1542-975X},
  keyword      = {congenital anomaly registries,population-based,ascertainment,organization,Europe},
  language     = {eng},
  number       = {Suppl. 1},
  pages        = {51--100},
  publisher    = {Wiley-Blackwell},
  series       = {Birth Defects Research Part C: Embryo Today: Reviews},
  title        = {Paper 6: EUROCAT Member Registries: Organization and Activities},
  url          = {http://dx.doi.org/10.1002/bdra.20775},
  volume       = {91},
  year         = {2011},
}