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Ethics and legal requirements for data linkage in 14 European countries for children with congenital anomalies.
Claridge, Hugh; Tan, Joachim; Loane, Maria; Garne, Ester; Barisic, Ingeborg; Cavero-Carbonell, Clara; Dias, Carlos; Gatt, Miriam; Jordan, Susan; Khoshnood, Babak; Kiuru-Kuhlefelt, Sonja; Klungsoyr, Kari; Mokoroa Carollo, Olatz; Nelen, Vera; Neville, Amanda J; Pierini, Anna; Randrianaivo, Hanitra; Rissmann, Anke; Tucker, David; de Walle, Hermien; Wertelecki, Wladimir; Morris, Joan K.
Affiliation
  • Claridge H; School of Health Sciences, Faculty of Health and Medical Sciences, University of Surrey, Guildford, UK.
  • Tan J; Population Health Research Institute, St George's, University of London, London, UK.
  • Loane M; Faculty of Life and Health Sciences, Ulster University, Belfast, UK.
  • Garne E; Department of Paediatrics and Adolescent Medicine, Lillebaelt Hospital, University Hospital of Southern Denmark, Kolding, Denmark.
  • Barisic I; Children's Hospital Zagreb, Centre of Excellence for Reproductive and Regenerative Medicine, Medical School University of Zagreb, Zagreb, Croatia.
  • Cavero-Carbonell C; Rare Diseases Research Unit, Foundation for the Promotion of Health and Biomedical Research in the Valencian Region (FISABIO), Valencia, Spain.
  • Dias C; Epidemiology Department, National Registry of Congenital Anomalies, National Institute of Health Doctor Ricardo Jorge (Instituto Nacional de Saúde Doutor Ricardo Jorge), Lisbon, Portugal.
  • Gatt M; Malta Congenital Anomalies Registry, Directorate for Health Information and Research, Pieta, Malta.
  • Jordan S; Faculty of Medicine, Health and Life Sciences, Swansea University, Swansea, UK.
  • Khoshnood B; Obstetrical, Perinatal and Pediatric Epidemiology Research Team (EPOPé), Center of Research in Epidemiology and Statistics (CRESS), Institut National de la Santé et de la Recherche Médicale (INSERM), INRA, Université de Paris, Paris, France.
  • Kiuru-Kuhlefelt S; Knowledge Brokers, Finnish Institute for Health and Welfare, Helsinki, Finland.
  • Klungsoyr K; Department of Global Public Health and Primary Care, University of Bergen, Bergen, Norway.
  • Mokoroa Carollo O; Divison of Mental and Physical Health, Norwegian Institute of Public Health, Bergen, Norway.
  • Nelen V; Public Health Division of Gipuzkoa, BioDonostia Health Research Institute, San Sebastian, Spain.
  • Neville AJ; Provincial Institute for Hygiene, Antwerp, Belgium.
  • Pierini A; Registro IMER, University of Ferrara, Ferrara, Emilia-Romagna, Italy.
  • Randrianaivo H; Institute of Clinical Physiology, National Research Council, Pisa, Italy.
  • Rissmann A; Register of Congenital Malformations, Centre Hospitalier Universitaire de La Réunion, Île de la Réunion, France.
  • Tucker D; Malformation Monitoring Centre Saxony-Anhalt, Medical Faculty, Otto-von-Guericke University, Magdeburg, Germany.
  • de Walle H; Public Health Wales National Health Service Trust, Cardiff, UK.
  • Wertelecki W; Department of Genetics, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.
  • Morris JK; OMNI-Net for Children International Charitable Fund, Rivne, Ukraine.
BMJ Open ; 13(7): e071687, 2023 07 27.
Article in En | MEDLINE | ID: mdl-37500278
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Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Congenital Abnormalities / Live Birth Aspects: Ethics Limits: Child / Female / Humans / Pregnancy Country/Region as subject: Europa Language: En Journal: BMJ Open Year: 2023 Document type: Article
Fulltext
Print
XML
PubMed Links
Search on Google

Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Congenital Abnormalities / Live Birth Aspects: Ethics Limits: Child / Female / Humans / Pregnancy Country/Region as subject: Europa Language: En Journal: BMJ Open Year: 2023 Document type: Article