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, US

2 Parent Project Muscular Dystrophy , Hackensack, NJ, US

3 RTI International , Research Triangle Park, NC, US

4 RAND , Santa Monica, CA, US

5 University of California Los Angeles , Los Angeles, CA, US

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