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Making orphan drugs and services available and accessible for people who live with rare diseases : what has been done? A systematic scoping review
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Ghiasvand, Hesam, Barnish, Maxwell S., Moradi, Tayebeh, Nikram, Elham and Naghdi, Seyran (2022) Making orphan drugs and services available and accessible for people who live with rare diseases : what has been done? A systematic scoping review. Expert Opinion on Orphan Drugs, 10 (1). pp. 55-64. doi:10.1080/21678707.2022.2153671 ISSN 2167-8707.
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Official URL: https://doi.org/10.1080/21678707.2022.2153671
Abstract
Objectives:
Rare diseases are recognized as non-prevalent health disorders. Availability, accessibility, and affordability of Orphan Drugs (ODs), alongside genetic testing, are the major contributors to ensuring no patient is excluded by the health system. Therefore, making ODs available and accessible has been a challenge even for high-income nations. This review aims to summarize the evidence on the availability and accessibility of orphan drugs and other required resources for managing rare diseases.
Methods:
The Joanna Briggs Institute scoping review method was used as the analytical framework. We searched Medline, and Embase through Ovid, and Web of Science. We used Guilford et al. definition and classification of accessibility and its dimensions to synthesize the evidence.
Results:
The majority of the final included evidence is about the financial, and then availability and physical accessibility to ODs. Furthermore, almost all the evidence comes from high-income countries.
Conclusion:
The principal hurdles to the availability and accessibility of ODs and other related services are very high prices, lack of a legal framework, and budgetary impact on public funding. A lack of reimbursement mechanisms and lower availability of other resources are among other problems.
| Item Type: | Journal Article | ||||||||
|---|---|---|---|---|---|---|---|---|---|
| Divisions: | Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Clinical Trials Unit Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School |
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| SWORD Depositor: | Library Publications Router | ||||||||
| Journal or Publication Title: | Expert Opinion on Orphan Drugs | ||||||||
| Publisher: | Taylor and Francis Group | ||||||||
| ISSN: | 2167-8707 | ||||||||
| Official Date: | 2022 | ||||||||
| Dates: |
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| Volume: | 10 | ||||||||
| Number: | 1 | ||||||||
| Page Range: | pp. 55-64 | ||||||||
| DOI: | 10.1080/21678707.2022.2153671 | ||||||||
| Status: | Peer Reviewed | ||||||||
| Publication Status: | Published | ||||||||
| Access rights to Published version: | Restricted or Subscription Access |
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