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Risk Management and Healthcare Policy Volume 13, 2020 - Issue
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Original Research

Ethical Questions Linked to Rare Diseases and Orphan Drugs – A Systematic Review

Jaroslav Kacetl1 Department of Linguistics, Faculty of Informatics and Management, University of Hradec Kralove, Hradec Kralove, Czech RepublicORCID Iconhttps://orcid.org/0000-0002-9327-8268
ORCID Icon,
Petra Marešová2 Department of Economics, Faculty of Informatics and Management, University of Hradec Kralove, Hradec Kralove, Czech RepublicCorrespondence[email protected]
ORCID Iconhttps://orcid.org/0000-0002-1218-501X
ORCID Icon,
Raihan Maskuriy3 Malaysia Japan International Institute of Technology (MJIIT), Universiti Teknologi Malaysia Kuala Lumpur, Kuala Lumpur, Malaysia;4 Department of Architecture, Faculty of Design and Architecture, Universiti Putra Malaysia (UPM), Serdang, Malaysia
&
Ali Selamat5 Media and Games Center of Excellence (MagicX), Universiti Teknologi Malaysia, Skudai, Malaysia;6 School of Computing, Faculty of Engineering, Universiti Teknologi Malaysia (UTM), Skudai, MalaysiaORCID Iconhttps://orcid.org/0000-0001-9746-8459
ORCID Icon
Pages 2125-2148 | Published online: 13 Oct 2020

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Monika Wagner, Mireille M Goetghebeur, Isabelle Ganache, Olivier Demers-Payette, Yannick Auclair, Catherine Olivier, Sylvie Arbour & Michèle de Guise. (2023) HTA challenges for appraising rare disease interventions viewed through the lens of an institutional multidimensional value framework. Expert Review of Pharmacoeconomics & Outcomes Research 23:2, pages 143-152.
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Jong Hyuk Lee & Seung-Lai Yoo. (2022) Pricing and reimbursement policy for new orphan drugs in South Korea: focused on patient accessibility and budget impact. Expert Opinion on Orphan Drugs 10:1, pages 22-27.
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Joon Seok Bang & Jong Hyuk Lee. (2021) The national drug formulary listing process for orphan drugs in South Korea: narrative review focused on pricing and reimbursement pathways. Expert Opinion on Orphan Drugs 9:4, pages 105-112.
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Articles from other publishers (10)

M. Zampoli, B. M Morrow & G Paul. (2023) Real-world disparities and ethical considerations with access to CFTR modulator drugs: Mind the gap!. Frontiers in Pharmacology 14.
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Maarten J. Postma, Declan Noone, Mark H. Rozenbaum, John A. Carter, Marc F. Botteman, Elisabeth Fenwick & Louis P. Garrison. (2022) Assessing the value of orphan drugs using conventional cost-effectiveness analysis: Is it fit for purpose?. Orphanet Journal of Rare Diseases 17:1.
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Tianjiao Wang, Paul Scuffham, Joshua Byrnes & Martin Downes. (2022) Cost-effectiveness analysis of gene-based therapies for patients with spinal muscular atrophy type I in Australia. Journal of Neurology 269:12, pages 6544-6554.
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Andreas Albertsen. (2022) Rare diseases in healthcare priority setting: should rarity matter?. Journal of Medical Ethics 48:9, pages 624-628.
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Denis Horgan, Jasmina Koeva-Balabanova, Ettore Capoluongo, Beata Jagielska, Ivana Cattaneo, Marta Kozaric, Birute Tumiene, Jean-Paul El Ahl, Jonathan A. Lal, Dipak Kalra & Núria Malats. (2022) Making Sure That Orphan Incentives Tip the Right Way in Europe. Healthcare 10:9, pages 1600.
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Inmaculada De Melo‐Martín. (2022) Reproductive Embryo Editing: Attending to Justice. Hastings Center Report 52:4, pages 26-33.
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Sujan Ravendran, Sabina Sánchez Hernández, Saskia König & Rasmus O. Bak. (2022) CRISPR/Cas-Based Gene Editing Strategies for DOCK8 Immunodeficiency Syndrome. Frontiers in Genome Editing 4.
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Maria Koromina, Vasileios Fanaras, Gareth Baynam, Christina Mitropoulou & George P Patrinos. (2021) Ethics and equity in rare disease research and healthcare. Personalized Medicine 18:4, pages 407-416.
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Alfried Kohlschütter. (2021) Ethical Issues in Care and Treatment of Neuronal Ceroid Lipofuscinoses (NCL)–A Personal View. Frontiers in Neurology 12.
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Stefan K. Plontke. (2021) Seltene Erkrankungen und Hals-Nasen-Ohren-Heilkunde, Kopf und Halschirurgie. Laryngo-Rhino-Otologie 100:S 01, pages S1-S11.
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