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Open Access
Peer-reviewed
Research Article
Clinical Guidelines for Management of Bone Health in Rett Syndrome Based on Expert Consensus and Available Evidence
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Amanda Jefferson,
Affiliation School of Biomedical Sciences, Curtin Health Innovation Research Institute-Biosciences, Curtin University, Perth, Western Australia, Australia
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Helen Leonard,
Affiliation Telethon Kids Institute, Centre for Child Health Research, The University of Western Australia, West Perth, Western Australia, Australia
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Aris Siafarikas,
Affiliation Department of Endocrinology and Diabetes, Princess Margaret Children’s Hospital, West Perth, Western Australia, Australia
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Helen Woodhead,
Affiliation Department of Paediatric Endocrinology, Sydney Children’s Hospital, Randwick, New South Wales, Australia
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Sue Fyfe,
Affiliation Faculty of Health Sciences, Curtin University, Perth, Western Australia, Australia
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Leanne M. Ward,
Affiliations Department of Pediatrics, Faculty of Medicine, University of Ottawa, Ottawa, Canada, Division of Endocrinology and Metabolism, Children’s Hospital of Eastern Ontario, Ottawa, Canada
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Craig Munns,
Affiliation Institute of Endocrinology and Diabetes, The Children’s Hospital at Westmead, Sydney, New South Wales, Australia
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Kathleen Motil,
Affiliations Department of Pediatrics, USDA/ARS Children’s Nutrition Research Center, Baylor College of Medicine, Houston, Texas, United States of America, Section of Gastroenterology, Hepatology and Nutrition, Texas Children’s Hospital, Houston, Texas, United States of America
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Daniel Tarquinio,
Affiliation Children’s Healthcare of Atlanta, Emory University, Atlanta, Georgia, United States of America
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Jay R. Shapiro,
Affiliation Bone and Osteogenesis Imperfecta Department, Kennedy Krieger Institute, Baltimore, Maryland, United States of America
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Torkel Brismar,
Affiliation Department of Clinical Science, Intervention and Technology, Karolinska Institutet, Solna, Stockholm, Sweden
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Bruria Ben-Zeev,
Affiliation Pediatric Neurology Unit, Edmond & Lily Safra Children’s Hospital, Chaim Sheba Medical Center, Tel Hashomer, Israel
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Anne-Marie Bisgaard,
Affiliations Center for Rett Syndrome, Copenhagen, Denmark, Department of Clinical Genetics, Rigshospitalet, Copenhagen, Denmark
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Giangennaro Coppola,
Affiliation Clinic of Child and Adolescent Neuropsychiatry, Department of Medicine and Surgery, University of Salerno, Salerno, Italy
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Carolyn Ellaway,
Affiliations Western Sydney Genetics Program, The Children’s Hospital at Westmead, Sydney, New South Wales, Australia, Disciplines of Paediatrics and Child Health and Genetic Medicine, University of Sydney, Sydney, New South Wales, Australia
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Michael Freilinger,
Affiliation Department of Pediatrics and Adolescent Medicine, Medical University of Vienna, Vienna, Austria
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Suzanne Geerts,
Affiliation Civitan International Research Centre, University of Alabama at Birmingham, Birmingham, Alabama, United States of America
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Peter Humphreys,
Affiliation Division of Neurology, Children’s Hospital of Eastern Ontario, Ottawa, Ontario, Canada
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Mary Jones,
Affiliation Katie’s Clinic for Rett Syndrome and Related Disorders, UCSF Benioff Children’s Hospital, Oakland, California, United States of America
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Jane Lane,
Affiliation Civitan International Research Centre, University of Alabama at Birmingham, Birmingham, Alabama, United States of America
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Gunilla Larsson,
Affiliations Swedish National Rett Centre, Frösön, Sweden, Department of Community Medicine and Rehabilitation, Physiotherapy, Umeå University, Frösön, Sweden
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Meir Lotan,
Affiliation Department of Physiotherapy, Ariel University, Ariel, Israel
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Alan Percy,
Affiliation Department of Pediatrics and Neurology, University of Alabama at Birmingham, Birmingham, Alabama, United States of America
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Mercedes Pineda,
Affiliations Fundació Hospital Sant Joan de Déu, Barcelona, Spain, Centre for Biomedical Research on Rare Diseases, Instituto de Salud Carlos III, Barcelona, Spain
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Steven Skinner,
Affiliation Greenwood Genetic Center, Greenwood, South Carolina, United States of America
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Birgit Syhler,
Affiliations Center for Rett Syndrome, Copenhagen, Denmark, Department of Clinical Genetics, Rigshospitalet, Copenhagen, Denmark
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Sue Thompson,
Affiliation Genetic Metabolic Disorders Service, The Children’s Hospital at Westmead, Sydney, New South Wales, Australia
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Batia Weiss,
Affiliations Division of Pediatric Gastroenterology and Nutrition, Edmond & Lily Safra Children’s Hospital, Tel Hashomer, Israel, Chaim Sheba Medical Center, Tel Hashomer, Israel
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Ingegerd Witt Engerström,
Affiliation Neuropediatrics, Swedish National Rett Center, Frösön, Sweden
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Jenny Downs
* E-mail: Jenny.Downs@telethonkids.org.au
Affiliations Telethon Kids Institute, Centre for Child Health Research, The University of Western Australia, West Perth, Western Australia, Australia, School of Physiotherapy and Exercise Science, Curtin University, Perth, Western Australia, Australia
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Clinical Guidelines for Management of Bone Health in Rett Syndrome Based on Expert Consensus and Available Evidence
- Amanda Jefferson,
- Helen Leonard,
- Aris Siafarikas,
- Helen Woodhead,
- Sue Fyfe,
- Leanne M. Ward,
- Craig Munns,
- Kathleen Motil,
- Daniel Tarquinio,
- Jay R. Shapiro
- Published: February 5, 2016
- https://doi.org/10.1371/journal.pone.0146824