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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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Sonraí Bibleagrafaíochta
Main Authors: Forsythe, Laura P., Szydlowski, Victoria, Murad, Mohammad Hassan, Ip, Stanley, Wang, Zhen, Elraiyah, Tarig A., Fleurence, Rachael, Hickam, David H.
Formáid: Artigo
Teanga:Inglês
Foilsithe: Springer US 2014
Ábhair:
Rochtain Ar Líne: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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