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1دورية أكاديمية
المؤلفون: L. Sangiorgi, M. Boarini, I. Westerheim, R. T. Skarberg, J. Clancy, V. Wang, M. Mordenti
المصدر: Orphanet Journal of Rare Diseases, Vol 19, Iss 1, Pp 1-6 (2024)
مصطلحات موضوعية: rare diseases, osteogenesis imperfecta, real-world data, health technology assessment, regulators, healthcare systems, Medicine
وصف الملف: electronic resource
العلاقة: https://doaj.org/toc/1750-1172Test
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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: MB Bober, LL Wekre, C Raggio, O Semler, I Westerheim, T Hart, T van Welzenis, M Rapoport, C Leiras, F Rauch
المصدر: Value in Health. 25:S396
مصطلحات موضوعية: Health Policy, Public Health, Environmental and Occupational Health
الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_________::d1fe5d1fe18814fd396c49224017bbeaTest
https://doi.org/10.1016/j.jval.2022.09.1967Test -
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المؤلفون: C Raggio, LL Wekre, MB Bober, O Semler, I Westerheim, T Hart, T van Welzenis, R Hawthorne, S Prince, F Rauch
المصدر: Value in Health. 25:S401
مصطلحات موضوعية: Health Policy, Public Health, Environmental and Occupational Health
الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_________::d2b6a30cdba2843a0a17d4f25383ac72Test
https://doi.org/10.1016/j.jval.2022.09.1995Test