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Khodyakov D, Kinnett K, Grant S, Lucas A, Martin A, Denger B, Peay H, Coulter I, Fink A. Engaging Patients and Caregivers Managing Rare Diseases to Improve the Methods of Clinical Guideline Development: A Research Protocol. JMIR Res Protoc. 2017 Apr 28;6(4):e57. doi: 10.2196/resprot.6902. PubMed PMID: 28455279; PubMed Central PMCID: PMC5429434.


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