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

Journals

  1. Young A, Menon D, Street J, Al-Hertani W, Stafinski T. Exploring patient and family involvement in the lifecycle of an orphan drug: a scoping review. Orphanet Journal of Rare Diseases 2017;12(1) View
  2. Grant S, Hazlewood G, Peay H, Lucas A, Coulter I, Fink A, Khodyakov D. Practical Considerations for Using Online Methods to Engage Patients in Guideline Development. The Patient - Patient-Centered Outcomes Research 2018;11(2):155 View
  3. Khodyakov D, Grant S, Denger B, Kinnett K, Martin A, Booth M, Armstrong C, Dao E, Chen C, Coulter I, Peay H, Hazlewood G, Street N. Using an Online, Modified Delphi Approach to Engage Patients and Caregivers in Determining the Patient-Centeredness of Duchenne Muscular Dystrophy Care Considerations. Medical Decision Making 2019;39(8):1019 View
  4. Khodyakov D, Grant S, Denger B, Kinnett K, Martin A, Peay H, Coulter I. Practical Considerations in Using Online Modified-Delphi Approaches to Engage Patients and Other Stakeholders in Clinical Practice Guideline Development. The Patient - Patient-Centered Outcomes Research 2020;13(1):11 View
  5. Denger B, Kinnett K, Martin A, Grant S, Armstrong C, Khodyakov D. Patient and caregiver perspectives on guideline adherence: the case of endocrine and bone health recommendations for Duchenne muscular dystrophy. Orphanet Journal of Rare Diseases 2019;14(1) View
  6. Zia A, Kouides P, Khodyakov D, Dao E, Lavin M, Kadir R, Othman M, Bauman D, Halimeh S, Winikoff R, Revel‐Vilk S. Standardizing care to manage bleeding disorders in adolescents with heavy menses—A joint project from the ISTH pediatric/neonatal and women's health SSCs. Journal of Thrombosis and Haemostasis 2020;18(10):2759 View
  7. Smith J, Damm K, Hover G, Chien J. Lessons from an Experiential Approach to Patient Community Engagement in Rare Disease. Clinical Therapeutics 2021;43(2):421 View
  8. Grant S, Armstrong C, Khodyakov D. Online Modified-Delphi: a Potential Method for Continuous Patient Engagement Across Stages of Clinical Practice Guideline Development. Journal of General Internal Medicine 2021;36(6):1746 View
  9. Wilson M, Kaur J, Blake L, Oliveto A, Thompson R, Pyne J, Wolf L, Walker A, Waliski A, Nordstrom K. Adherence to guideline creation recommendations for suicide prevention in the emergency department: A systematic review. The American Journal of Emergency Medicine 2021 View