首页> American journal of medical genetics. Part A> International Expert Opinion on Standard of Care for Patients With Schinzel-Giedion Syndrome: A Modified Delphi Study.

International Expert Opinion on Standard of Care for Patients With Schinzel-Giedion Syndrome: A Modified Delphi Study.

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第一作者： Jessica,Duis

第一单位： Rare Disease Doc, Aurora, Colorado, USA.;Children's Hospital Colorado, University of Colorado, Aurora, Colorado, USA.;The Schinzel-Giedion Syndrome Foundation, West Sussex, UK.

作者： Jessica,Duis ^[1] ; Laura,Agresta ^[2] ; William E,Bennett ^[3] ; Henry,Chambers ^[4] ; Antonia,Clarke ^[5] ; Charlie,Fairhurst ^[6] ; Julie,Hoover-Fong ^[7] ; Feilim,Murphy ^[8] ; Garey,Noritz ^[9] ; Scott,Schwantes ^[10] ; Michael,Shreve ^[11] ; Kabelo,Thusang ^[12] ; Darcy,Weidemann ^[13] ; Rebecca,Beale ^[14] ; Aditi,Mehta ^[14] ; Andrew,Wilhelmsen ^[15] ; Nuala,Summerfield ^[16]

作者单位： Rare Disease Doc, Aurora, Colorado, USA.;Children's Hospital Colorado, University of Colorado, Aurora, Colorado, USA.;The Schinzel-Giedion Syndrome Foundation, West Sussex, UK. ^[1] Department of Pediatrics and Human Development, Michigan State University, East Lansing, Michigan, USA. ^[2] Department of Pediatrics, Indiana University School of Medicine, Indianapolis, Indiana, USA. ^[3] Department of Orthopedic Surgery, University of California San Diego, San Diego, California, USA.;Southern Family Center for Cerebral Palsy, Rady Children's Hospital-San Deigo, San Diego, California, USA. ^[4] Department of Pediatric Neurology, St George's University Hospitals NHS Foundation Trust, London, UK. ^[5] Department of Children's Neurosciences, Evelina London Children's Hospital, London, UK. ^[6] Department of Genetic Medicine, Greenberg Center for Skeletal Dysplasias, Johns Hopkins University, Baltimore, Maryland, USA. ^[7] Department of Pediatric Urology, St George's University Hospitals NHS Foundation Trust, London, UK. ^[8] Department of Pediatrics, Nationwide Children's Hospital, The Ohio State University, Columbus, Ohio, USA. ^[9] Department of Pain, Palliative Care, and Integrative Medicine, Children's Minnesota, Minneapolis, Minnesota, USA. ^[10] Children's Respiratory and Critical Care Specialists, Minneapolis and St. Paul, Minnesota, USA. ^[11] Department of Neurology and Ophthalmology, Michigan State University, East Lansing, Michigan, USA. ^[12] Department of Pediatrics, Division of Nephrology, Children's Mercy Kansas City, Kansas, Missouri, USA.;University of Missouri-Kansas City School of Medicine, Kansas, Missouri, USA. ^[13] Costello Medical, London, UK. ^[14] Costello Medical, Manchester, UK. ^[15] The Schinzel-Giedion Syndrome Foundation, West Sussex, UK. ^[16]

关键词 Delphi technique Schinzel‐Giedion syndrome recommendations standard of care