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Information needs of parents of children with congenital anomalies across Europe: a EUROlinkCAT survey.
Marcus, Elena; Latos-Bielenska, Anna; Jamry-Dziurla, Anna; Barisic, Ingeborg; Cavero-Carbonell, Clara; Den Hond, Elly; Garne, Ester; Genard, Lucas; Santos, Ana João; Lutke, LRenée; Matias Dias, Carlos; Neergaard Pedersen, Christina; Neville, Amanda J; Niemann, Annika; Odak, Ljubica; Pierini, Anna; Rico, Juan; Rissmann, Anke; Rankin, Judith; Morris, Joan K.
Afiliação
  • Marcus E; Population Health Research Institute, St George's, University of London, Cranmer Terrace, London, SW17 0RE, UK. emarcus@sgul.ac.uk.
  • Latos-Bielenska A; Chair and Department of Medical Genetics, Poznan University of Medical Sciences, Collegium Maius, Fredry 10, 61-701, Poznan, Poland.
  • Jamry-Dziurla A; Chair and Department of Medical Genetics, Poznan University of Medical Sciences, Collegium Maius, Fredry 10, 61-701, Poznan, Poland.
  • Barisic I; Centre of Excellence for Reproductive and Regenerative Medicine, Children's Hospital Zagreb, Medical School University of Zagreb, Ul. Vjekoslava Klaica 16, 10000, Zagreb, Croatia.
  • Cavero-Carbonell C; Rare Diseases Research Unit, Fundacio per al Foment de la Investigacio Sanitaria i Biomedica, Av. de Catalunya, 21, 46020, València, Spain.
  • Den Hond E; Provincial Institute for Hygiene (PIH), Kronenburgstraat 45, 2000, Antwerp, Belgium.
  • Garne E; Department of Paediatrics and Adolescent Medicine, Lillebaelt Hospital, University Hospital of Southern Denmark, Kolding, Denmark.
  • Genard L; Provincial Institute for Hygiene (PIH), Kronenburgstraat 45, 2000, Antwerp, Belgium.
  • Santos AJ; Department of Epidemiology, National Institute of Health Doctor Ricardo Jorge, Av. Padre Cruz, 1600-609, Lisbon, Portugal.
  • Lutke L; Department of Genetics, University Medical Center, University of Groningen, 9712 CP, Groningen, Netherlands.
  • Matias Dias C; Department of Epidemiology, National Institute of Health Doctor Ricardo Jorge, Av. Padre Cruz, 1600-609, Lisbon, Portugal.
  • Neergaard Pedersen C; Department of Paediatrics and Adolescent Medicine, Lillebaelt Hospital, University Hospital of Southern Denmark, Kolding, Denmark.
  • Neville AJ; IMER Registry (Emilia Romagna Registry of Birth Defects), University of Ferrara and Azienda Ospedaliero Universitaria Di Ferrara, Via Aldo Moro, 8, 44124, Ferrara, Italy.
  • Niemann A; Medical Faculty, Malformation Monitoring Centre Saxony-Anhalt, Otto-Von-Guericke-University Magdeburg, Leipziger Str. 44, 39120, Magdeburg, Germany.
  • Odak L; Centre of Excellence for Reproductive and Regenerative Medicine, Children's Hospital Zagreb, Medical School University of Zagreb, Ul. Vjekoslava Klaica 16, 10000, Zagreb, Croatia.
  • Pierini A; Unit of Epidemiology of Rare Diseases and Congenital Anomalies, Institute of Clinical Physiology, National Research Council, Via Giuseppe Moruzzi, 1, 56124, Pisa, Italy.
  • Rico J; Rare Diseases Research Unit, Fundacio per al Foment de la Investigacio Sanitaria i Biomedica, Av. de Catalunya, 21, 46020, València, Spain.
  • Rissmann A; Medical Faculty, Malformation Monitoring Centre Saxony-Anhalt, Otto-Von-Guericke-University Magdeburg, Leipziger Str. 44, 39120, Magdeburg, Germany.
  • Rankin J; Population Health Sciences Institute, Newcastle University, Newcastle Upon Tyne, NE1 7RU, UK.
  • Morris JK; Population Health Research Institute, St George's, University of London, Cranmer Terrace, London, SW17 0RE, UK.
BMC Pediatr ; 22(1): 657, 2022 11 12.
Article em En | MEDLINE | ID: mdl-36368959
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Texto completo: 1 Base de dados: MEDLINE Assunto principal: Disrafismo Espinal / Fenda Labial / Síndrome de Down / Cardiopatias Congênitas Idioma: En Ano de publicação: 2022 Tipo de documento: Article
Texto completo
Imprimir
XML
PubMed Links
Buscar no Google

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Disrafismo Espinal / Fenda Labial / Síndrome de Down / Cardiopatias Congênitas Idioma: En Ano de publicação: 2022 Tipo de documento: Article