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Patients' priorities and expectations on an EU registry for rare bone and mineral conditions.
Javaid, Muhammad Kassim; Mordenti, Marina; Boarini, Manila; Sangiorgi, Luca; Westerheim, Ingunn; Alves, Inês; Skarberg, Rebecca Tvedt; Appelman-Dijkstra, Natasha M; Grasemann, Corinna.
Afiliación
  • Javaid MK; Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford, OX3 7LD, UK. kassim.javaid@ndorms.ox.ac.uk.
  • Mordenti M; Department of Rare Skeletal Disorders, IRCCS Istituto Ortopedico Rizzoli, Bologna, Italy.
  • Boarini M; Department of Rare Skeletal Disorders, IRCCS Istituto Ortopedico Rizzoli, Bologna, Italy.
  • Sangiorgi L; Department of Rare Skeletal Disorders, IRCCS Istituto Ortopedico Rizzoli, Bologna, Italy.
  • Westerheim I; Osteogenesis Imperfecta Federation Europe (OIFE), Eindhoven, The Netherlands.
  • Alves I; Associação Nacional de Displasias Ósseas (ANDO), Evora, Portugal.
  • Skarberg RT; Osteogenesis Imperfecta Federation Europe (OIFE), Eindhoven, The Netherlands.
  • Appelman-Dijkstra NM; Department of Internal Medicine, Division of Endocrinology, Leiden University Medical Centre, Leiden, Netherlands.
  • Grasemann C; Department of Pediatrics, Division of Rare Diseases, Ruhr-University Bochum, Bochum, Germany.
Orphanet J Rare Dis ; 16(1): 463, 2021 11 03.
Article en En | MEDLINE | ID: mdl-34732217
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Texto completo: 1 Colección: 01-internacional Banco de datos: MEDLINE Asunto principal: Osteogénesis Imperfecta / Motivación Límite: Adult / Child / Humans Idioma: En Revista: Orphanet J Rare Dis Asunto de la revista: MEDICINA Año: 2021 Tipo del documento: Article País de afiliación: Reino Unido
Texto completo
Imprimir
XML
PubMed Links
Buscar en Google

Texto completo: 1 Colección: 01-internacional Banco de datos: MEDLINE Asunto principal: Osteogénesis Imperfecta / Motivación Límite: Adult / Child / Humans Idioma: En Revista: Orphanet J Rare Dis Asunto de la revista: MEDICINA Año: 2021 Tipo del documento: Article País de afiliación: Reino Unido