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المؤلفون: N Appelman-Dijkstra, M. Boarini, Luca Sangiorgi, Muhammad Javaid, I Alves, Ernbondwg., R. Skarberg, M Mordenti, I Westerheim, C Graasemann
المصدر: Orphanet Journal of Rare Diseases, Vol 16, Iss 1, Pp 1-9 (2021)
Leiden University Erasmus MC 2021, ' Patients’ priorities and expectations on an EU registry for rare bone and mineral conditions ', Orphanet Journal of Rare Diseases, vol. 16, no. 1, 463 . https://doi.org/10.1186/s13023-021-02069-9Test
Orphanet Journal of Rare Diseases, 16(1). BMC
Orphanet Journal of Rare Diseasesمصطلحات موضوعية: Adult, medicine.medical_specialty, Patient advocacy, Rare Diseases, Humans, Medicine, Pharmacology (medical), Registries, Patient group, Child, User needs, Survey, Genetics (clinical), Minerals, Motivation, Data collection, Descriptive statistics, business.industry, Research, General Medicine, Rare disease registries, Natural history, Family medicine, Rare bone and mineral conditions, Anxiety, Osteogenesis imperfecta, medicine.symptom, business, Psychosocial, Natural History
وصف الملف: application/pdf
الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::fc9a1e81b9d508f97a3c3adbd0da76deTest
https://doaj.org/article/164bf1ebabe745438f86281f9fc1a1cdTest -
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المؤلفون: M. Boarini, Agnès Linglart, L. DeSanctis, E. van den Akker, A. S. Faisal, Marco Roos, A. L. P. Zurita, Ondrej Soucek, R. S. Auriemma, Marina Mordenti, Adalbert Raimann, Klaus Mohnike, Luca Sangiorgi, A. Vicente, Wolfgang Högler, Diana-Alexandra Ertl, J. Bryce, Corinna Grasemann, Inês Alves, Muhammad Javaid, R. Skarberg, Natasha M. Appelman-Dijkstra, Hoong-Wei Gan, J. Toke
المصدر: Bone Reports, Vol 14, Iss, Pp 100849-(2021)
مصطلحات موضوعية: medicine.medical_specialty, 2019-20 coronavirus outbreak, Coronavirus disease 2019 (COVID-19), business.industry, Endocrinology, Diabetes and Metabolism, Fibrous dysplasia, Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), Light touch, Diseases of the musculoskeletal system, Newly diagnosed, medicine.disease, RC925-935, Osteogenesis imperfecta, Family medicine, medicine, Orthopedics and Sports Medicine, business
الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::17c9b06c0d2e34e5f7400b4d3d80704cTest
https://doi.org/10.1016/j.bonr.2021.100849Test