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Orphanet Journal Of Rare Diseases

Publication date: 2018-09-10
Volume: 13
Publisher: Springer Nature

Author:

Mueller, Brigitte
Engelbert, Raoul ; Baratta-Ziska, Frances ; Bartels, Bart ; Blanc, Nicole ; Brizola, Evelise ; Fraschini, Paolo ; Hill, Claire ; Marr, Caroline ; Mills, Lisa ; Montpetit, Kathleen ; Pacey, Verity ; Molina, Miguel Rodriguez ; Schuuring, Marleen ; Verhille, Chantal ; de Vries, Olga ; Yeung, Eric Hiu Kwong ; Semler, Oliver

Keywords:

Science & Technology, Life Sciences & Biomedicine, Genetics & Heredity, Medicine, Research & Experimental, Research & Experimental Medicine, Osteogenesis imperfecta, Physiotherapy, Occupational therapy, Mobility, Rehabilitation, GENOTYPE-PHENOTYPE CORRELATIONS, FOLLOW-UP, PERCEIVED COMPETENCE, MUSCLE STRENGTH, CHILDHOOD, SCOLIOSIS, IMPAIRMENT, DISABILITY, BONE, SPONDYLODESIS, Adolescent, Child, Child, Preschool, Humans, Occupational Therapists, Occupational Therapy, Osteogenesis Imperfecta, Physical Therapists, Quality of Life, Surveys and Questionnaires, 1199 Other Medical and Health Sciences, 3105 Genetics, 3202 Clinical sciences

Abstract:

On the occasion of the 13th International Conference on Osteogenesis imperfecta in August 2017 an expert panel was convened to develop an international consensus paper regarding physical rehabilitation in children and adolescents with Osteogenesis imperfecta. The experts were chosen based on their clinical experience with children with osteogenesis imperfecta and were identified by sending out questionnaires to specialized centers and patient organizations in 26 different countries. The final expert-group included 16 representatives (12 physiotherapists, two occupational therapists and two medical doctors) from 14 countries. Within the framework of a collation of personal experiences and the results of a literature search, the participating physiotherapists, occupational therapists and medical doctors formulated 17 expert-statements on physical rehabilitation in patients aged 0-18 years with osteogenesis imperfecta.