Paper 6: EUROCAT Member Registries: Organization and Activities

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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; Doray, Berenice; Draper, Elizabeth; Vollset, Stein Emil; Garne, Ester; Gatt, Miriam; Haeusler, Martin; Källén, 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; Wertelecki, Wladimir.

I: Birth Defects Research Part C: Embryo Today: Reviews, Vol. 91, Nr. Suppl. 1, 2011, s. S51-S100.

Forskningsoutput: TidskriftsbidragÖversiktsartikel

Harvard

Greenlees, R, Neville, A, Addor, M-C, Amar, E, Arriola, L, Bakker, M, Barisic, I, Boyd, PA, Calzolari, E, Doray, B, Draper, E, Vollset, SE, Garne, E, Gatt, M, Haeusler, M, Källén, K, Khoshnood, B, Latos-Bielenska, A, Martinez-Frias, M-L, Materna-Kiryluk, A, Dias, CM, McDonnell, B, Mullaney, C, Nelen, V, O'Mahony, M, Pierini, A, Queisser-Luft, A, Randrianaivo-Ranjatoelina, 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 C: Embryo Today: Reviews, vol. 91, nr. Suppl. 1, s. S51-S100. https://doi.org/10.1002/bdra.20775

APA

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., Källén, K., Khoshnood, B., Latos-Bielenska, A., Martinez-Frias, M-L., ... Wertelecki, W. (2011). Paper 6: EUROCAT Member Registries: Organization and Activities. Birth Defects Research Part C: Embryo Today: Reviews, 91(Suppl. 1), S51-S100. https://doi.org/10.1002/bdra.20775

CBE

Greenlees R, Neville A, Addor M-C, Amar E, Arriola L, Bakker M, Barisic I, Boyd PA, Calzolari E, Doray B, Draper E, Vollset SE, Garne E, Gatt M, Haeusler M, Källén K, Khoshnood B, Latos-Bielenska A, Martinez-Frias M-L, Materna-Kiryluk A, Dias CM, McDonnell B, Mullaney C, Nelen V, O'Mahony M, Pierini A, Queisser-Luft A, Randrianaivo-Ranjatoelina 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 C: Embryo Today: Reviews. 91(Suppl. 1):S51-S100. https://doi.org/10.1002/bdra.20775

MLA

Vancouver

Greenlees R, Neville A, Addor M-C, Amar E, Arriola L, Bakker M et al. Paper 6: EUROCAT Member Registries: Organization and Activities. Birth Defects Research Part C: Embryo Today: Reviews. 2011;91(Suppl. 1):S51-S100. https://doi.org/10.1002/bdra.20775

Author

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 ; Gatt, Miriam ; Haeusler, Martin ; Källén, 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 ; Wertelecki, Wladimir. / Paper 6: EUROCAT Member Registries: Organization and Activities. I: Birth Defects Research Part C: Embryo Today: Reviews. 2011 ; Vol. 91, Nr. Suppl. 1. s. S51-S100.

RIS

TY - JOUR

T1 - Paper 6: EUROCAT Member Registries: Organization and Activities

AU - Greenlees, Ruth

AU - Neville, Amanda

AU - Addor, Marie-Claude

AU - Amar, Emmanuelle

AU - Arriola, Larraitz

AU - Bakker, Marian

AU - Barisic, Ingeborg

AU - Boyd, Patricia A.

AU - Calzolari, Elisa

AU - Doray, Berenice

AU - Draper, Elizabeth

AU - Vollset, Stein Emil

AU - Garne, Ester

AU - Gatt, Miriam

AU - Haeusler, Martin

AU - Källén, Karin

AU - Khoshnood, Babak

AU - Latos-Bielenska, Anna

AU - Martinez-Frias, Maria-Luisa

AU - Materna-Kiryluk, Anna

AU - Dias, Carlos Matias

AU - McDonnell, Bob

AU - Mullaney, Carmel

AU - Nelen, Vera

AU - O'Mahony, Mary

AU - Pierini, Anna

AU - Queisser-Luft, Annette

AU - Randrianaivo-Ranjatoelina, Hanitra

AU - Rankin, Judith

AU - Rissmann, Anke

AU - Ritvanen, Annukka

AU - Salvador, Joaquin

AU - Sipek, Antonin

AU - Tucker, David

AU - Verellen-Dumoulin, Christine

AU - Wellesley, Diana

AU - Wertelecki, Wladimir

PY - 2011

Y1 - 2011

N2 - 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.

AB - 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.

KW - congenital anomaly registries

KW - population-based

KW - ascertainment

KW - organization

KW - Europe

U2 - 10.1002/bdra.20775

DO - 10.1002/bdra.20775

M3 - Review article

C2 - 21381185

VL - 91

SP - S51-S100

JO - Birth Defects Research Part C - Embryo Today: Reviews

JF - Birth Defects Research Part C - Embryo Today: Reviews

SN - 1542-975X

IS - Suppl. 1

ER -