Ethics and legal requirements for data linkage in 14 European countries for children with congenital anomalies

Autor: Babak Khoshnood, David Tucker, Susan Jordan, Hanitra Randrianaivo, Maria Loane, Ingeborg Barisic, Miriam Gatt, Kari Klungsoyr, Anna Pierini, Anke Rissmann, Joan K Morris, Clara Cavero-Carbonell, Vera Nelen, Amanda J Neville, Ester Garne, Hermien de Walle, Carlos Dias, Wladimir Wertelecki, Joachim Tan, Hugh Claridge, Sonja Kiuru-Kuhlefelt, Olatz Mokoroa Carollo

Publikováno v: BMJ Open, Vol 13, Iss 7 (2023)

Introduction Linking healthcare data sets can create valuable resources for research, particularly when investigating rare exposures or outcomes. However, across Europe, the permissions processes required to access data can be complex. This paper doc

Externí odkaz: https://doaj.org/article/ab83eb18afeb496085e71265b0a01be3

International versus national growth charts for identifying small and large-for-gestational age newborns: A population-based study in 15 European countries

Autor: Alice Hocquette, MSc, Mélanie Durox, MSc, Rachael Wood, PhD, Kari Klungsøyr, MD, Katarzyna Szamotulska, PhD, Sylvan Berrut, MSc, Tonia Rihs, PhD, Theopisti Kyprianou, Luule Sakkeus, PhD, Aline Lecomte, MSc, Irisa Zile, PhD, Sophie Alexander, PhD, Jeannette Klimont, Mag, Henrique Barros, PhD, Miriam Gatt, Jelena Isakova, Béatrice Blondel, PhD, Mika Gissler, PhD, Jennifer Zeitlin, DSc

Publikováno v: The Lancet Regional Health. Europe, Vol 8, Iss , Pp 100167- (2021)

Background: To inform the on-going debate about the use of universal prescriptive versus national intrauterine growth charts, we compared perinatal mortality for small and large-for-gestational-age (SGA/LGA) infants according to international and nat

Externí odkaz: https://doaj.org/article/ced9d652a67446d1aabfccdb9de89106

EUROlinkCAT protocol for a European population-based data linkage study investigating the survival, morbidity and education of children with congenital anomalies

Autor: Nathalie Lelong, Babak Khoshnood, David Tucker, Mika Gissler, Maria Loane, Ingeborg Barisic, Miriam Gatt, Kari Klungsoyr, Amanda Neville, Anna Pierini, Anke Rissmann, Oscar Zurriaga, Joan K Morris, Paula Braz, Vera Nelen, Judith Rankin, Ester Garne, Sue Jordan, Anna Heino, Silvia Baldacci, Michele Santoro, Alessio Coi, Lorena Mezzasalma, Daniel Thayer, Svetlana V Glinianaia, Hermien de Walle, Guy Thys, Anna Latos-Bielenska, Aurora Puccini, Elisa Ballardini, Wladimir Wertelecki, Carlos Matias Dias, Gianni Astolfi, James Densem, Joachim Tan, Joanne Emma Given, Hugh Claridge, Abigail Reid, Liz Limb, Gillian Briggs, Nicholas Connor, Stine Kjaer Urhoj, Mads Damkjær, Christina Neergaard Pedersen, Annarita Armaroli, Ljubica Boban, L Renée Lutke, Nicole H A Siemensma-Mühlenberg, Nathalie Bertille, Makan Rahshenas, Clara Cavero Carbonell, Laia Barrachina Bonet, Laura García Villodre, Anna Jamry-Dziurla, Sonja Kiuru-Kuhlefelt, Lyubov Yevtushok, Nataliia Zymak-Zakutnia, Diana Akhmedzhanova, Lyubov Ostapchuk, Oksana Tsizh, Serhii Lapchenko, Ausenda Machado, Ana João Santos, Liliana Antunes, Hanitra Randrianaivo-Ranjatoelina, Elly Den Hond, Olatz Mokoroa Carollo, Ieuan Scanlon

Publikováno v: BMJ Open, Vol 11, Iss 6 (2021)

Introduction Congenital anomalies (CAs) are a major cause of infant mortality, childhood morbidity and long-term disability. Over 130 000 children born in Europe every year will have a CA. This paper describes the EUROlinkCAT study, which is investig

Externí odkaz: https://doaj.org/article/71d0d10a7c8340b8864daf7f71f7e0a9

Amniotic band syndrome and limb body wall complex in Europe 1980–2019

Autor: Jorieke E. H. Bergman, Ingeborg Barišić, Marie‐Claude Addor, Paula Braz, Clara Cavero‐Carbonell, Elizabeth S. Draper, Luis J. Echevarría‐González‐de‐Garibay, Miriam Gatt, Martin Haeusler, Babak Khoshnood, Kari Klungsøyr, Jennifer J. Kurinczuk, Anna Latos‐Bielenska, Karen Luyt, Danielle Martin, Carmel Mullaney, Vera Nelen, Amanda J. Neville, Mary T. O'Mahony, Isabelle Perthus, Anna Pierini, Hanitra Randrianaivo, Judith Rankin, Anke Rissmann, Florence Rouget, Gerardine Sayers, Bruno Schaub, Sarah Stevens, David Tucker, Christine Verellen‐Dumoulin, Awi Wiesel, Erica H. Gerkes, Annie Perraud, Maria A. Loane, Diana Wellesley, Hermien E. K. de Walle

Publikováno v: American Journal of Medical Genetics. Part A.
American Journal of Medical Genetics. Part A, 191(4), 995-1006. Wiley
Bergman, J E H, Barišić, I, Addor, M C, Braz, P, Cavero-Carbonell, C, Luyt, K & et, A 2022, ' Amniotic band syndrome and limb body wall complex in Europe 1980–2019 ', American Journal of Medical Genetics . https://doi.org/10.1002/ajmg.a.63107
American Journal of Medical Genetics. Part A

Amniotic band syndrome (ABS) and limb body wall complex (LBWC) have an overlapping phenotype of multiple congenital anomalies and their etiology is unknown. We aimed to determine the prevalence of ABS and LBWC in Europe from 1980 to 2019and to descri

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::e8ac8e4bea146e488a17fe65be1c0707
https://doi.org/10.1002/ajmg.a.63107

Variations in use of childbirth interventions in 13 high-income countries: A multinational cross-sectional study.

Autor: Anna E Seijmonsbergen-Schermers, Thomas van den Akker, Eva Rydahl, Katrien Beeckman, Annick Bogaerts, Lorena Binfa, Lucy Frith, Mechthild M Gross, Björn Misselwitz, Berglind Hálfdánsdóttir, Deirdre Daly, Paul Corcoran, Jean Calleja-Agius, Neville Calleja, Miriam Gatt, Anne Britt Vika Nilsen, Eugene Declercq, Mika Gissler, Anna Heino, Helena Lindgren, Ank de Jonge

Publikováno v: PLoS Medicine, Vol 17, Iss 5, p e1003103 (2020)

BACKGROUND:Variations in intervention rates, without subsequent reductions in adverse outcomes, can indicate overuse. We studied variations in and associations between commonly used childbirth interventions and adverse outcomes, adjusted for populati

Externí odkaz: https://doaj.org/article/893ee1aaa8f8450393154ee10c6bce08