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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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Detalhes bibliográficos
Main Authors: Forsythe, Laura P., Szydlowski, Victoria, Murad, Mohammad Hassan, Ip, Stanley, Wang, Zhen, Elraiyah, Tarig A., Fleurence, Rachael, Hickam, David H.
Formato: Artigo
Idioma:Inglês
Publicado em: Springer US 2014
Assuntos:
Acesso em linha: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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