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Literature review and expert opinion on the impact of achondroplasia on medical complications and health-related quality of life and expectations for long-term impact of vosoritide: a modified Delphi study.
Savarirayan, Ravi; Baratela, Wagner; Butt, Thomas; Cormier-Daire, Valérie; Irving, Melita; Miller, Bradley S; Mohnike, Klaus; Ozono, Keiichi; Rosenfeld, Ron; Selicorni, Angelo; Thompson, Dominic; White, Klane K; Wright, Michael; Fredwall, Svein O.
Afiliação
  • Savarirayan R; Murdoch Children's Research Institute, and University of Melbourne, Parkville, Melbourne, VIC, 3052, Australia. ravi.savarirayan@vcgs.org.au.
  • Baratela W; Hospital Sirio-Libanes, São Paolo, Brazil.
  • Butt T; BioMarin International Ltd, London, UK.
  • Cormier-Daire V; Université de Paris, Reference Center for Skeletal Dysplasia, Hôpital Necker-Enfants Malades, Paris, France.
  • Irving M; Guy's and St. Thomas' NHS Foundation Trust, London, UK.
  • Miller BS; University of Minnesota Medical School, Minneapolis, MN, USA.
  • Mohnike K; Universitätskinderklinik, Otto-Von-Guericke Universität, Magdeburg, Germany.
  • Ozono K; Osaka University Graduate School of Medicine, Osaka, Japan.
  • Rosenfeld R; Oregon Health and Science University, Portland, OR, USA.
  • Selicorni A; ASST Lariana, Como, Italy.
  • Thompson D; Great Ormond Street Hospital for Children, NHS Foundation Trust, London, UK.
  • White KK; University of Washington, Seattle Children's Hospital, Seattle, WA, USA.
  • Wright M; Northern Genetics Service, Institute of Human Genetics, Newcastle-Upon-Tyne Hospitals, NHS Foundation Trust, Newcastle-upon-Tyne, UK.
  • Fredwall SO; TRS National Resource Centre for Rare Disorders, Sunnaas Rehabilitation Hospital, Nesodden, Norway.
Orphanet J Rare Dis ; 17(1): 224, 2022 06 13.
Article em En | MEDLINE | ID: mdl-35698202
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Texto completo: 1 Base de dados: MEDLINE Assunto principal: Qualidade de Vida / Acondroplasia Idioma: En Ano de publicação: 2022 Tipo de documento: Article
Texto completo
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XML
PubMed Links
Buscar no Google

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Qualidade de Vida / Acondroplasia Idioma: En Ano de publicação: 2022 Tipo de documento: Article