Engaging Patients and Caregivers Managing Rare Diseases to Improve the Methods of Clinical Guideline Development: A Research Protocol
Engaging Patients and Caregivers Managing Rare Diseases to Improve the Methods of Clinical Guideline Development: A Research Protocol
Dmitry Khodyakov 1, PhD; Kathi Kinnett 2, MSN, CNP; Sean Grant 1, DPhil; Ann Lucas 2, MS; Ann Martin 2, MS; Brian Denger 2; Holly Peay 3, PhD; Ian Coulter 4, PhD; Arlene Fink 5, PhD 1 RAND Health , Santa Monica, CA,
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2 Parent Project Muscular Dystrophy , Hackensack, NJ,
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3 RTI International , Research Triangle Park, NC,
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4 RAND , Santa Monica, CA,
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5 University of California Los Angeles , Los Angeles, CA,
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