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A Systematic Review of Approaches for Engaging Patients for Research on Rare Diseases
BACKGROUND: Patients with rare diseases have limited access to useful information to guide treatment decisions. Engagement of patients and other stakeholders in clinical research may help to ensure that research efforts in rare diseases address relevant clinical questions and patient-centered health...
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| Autores principales: | , , , , , , , |
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| Formato: | Artigo |
| Lenguaje: | Inglês |
| Publicado: |
Springer US
2014
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| Materias: | |
| Acceso en línea: | https://ncbi.nlm.nih.gov/pmc/articles/PMC4124116/ https://ncbi.nlm.nih.gov/pubmed/25047393 https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1007/s11606-014-2895-9 |
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