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Stakeholder perspectives on clinical research related to therapies for rare diseases: therapeutic misconception and the value of research

BACKGROUND: For many rare diseases, few treatments are supported by strong evidence. Patients, family members, health care providers, and policy-makers thus have to consider whether to accept, recommend, or fund treatments with uncertain clinical effectiveness. They must also consider whether and ho...

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Dades bibliogràfiques
Publicat a:Orphanet J Rare Dis
Autors principals: Tingley, Kylie, Coyle, Doug, Graham, Ian D., Chakraborty, Pranesh, Wilson, Kumanan, Potter, Beth K.
Format: Artigo
Idioma:Inglês
Publicat: BioMed Central 2021
Matèries:
Accés en línia:https://ncbi.nlm.nih.gov/pmc/articles/PMC7805116/
https://ncbi.nlm.nih.gov/pubmed/33436030
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/s13023-020-01624-0
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