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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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Détails bibliographiques
Auteurs principaux: Forsythe, Laura P., Szydlowski, Victoria, Murad, Mohammad Hassan, Ip, Stanley, Wang, Zhen, Elraiyah, Tarig A., Fleurence, Rachael, Hickam, David H.
Format: Artigo
Langue:Inglês
Publié: Springer US 2014
Sujets:
Accès en ligne: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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