Published on in Vol 6, No 4 (2017): April

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

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, United States

2 Parent Project Muscular Dystrophy, Hackensack, NJ, United States

3 RTI International, Research Triangle Park, NC, United States

4 RAND, Santa Monica, CA, United States

5 University of California Los Angeles, Los Angeles, CA, United States

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