Recommendations from the IRDiRC Working Group on methodologies to assess the impact of diagnoses and therapies on rare disease patients
Abstract Rare disease patients face many challenges including diagnostic delay, misdiagnosis and lack of therapies. However, early access to diagnosis and therapies can modify the management and the progression of diseases, which in return positively impacts patients, families and health care system...
Main Authors: | Galliano Zanello, Chun-Hung Chan, David A. Pearce, IRDiRC Working Group |
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Format: | Article |
Language: | English |
Published: |
BMC
2022-05-01
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Series: | Orphanet Journal of Rare Diseases |
Subjects: | |
Online Access: | https://doi.org/10.1186/s13023-022-02337-2 |
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