This paper is in the following e-collection/theme issue:

Grant Proposals (eHealth, funded) (80) Non-randomized Protocols and Methods (ehealth) (568)

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

Authors of this article:

Dmitry Khodyakov1 Author Orcid Image ;   Kathi Kinnett2 Author Orcid Image ;   Sean Grant1 Author Orcid Image ;   Ann Lucas2 Author Orcid Image ;   Ann Martin2 Author Orcid Image ;   Brian Denger2 Author Orcid Image ;   Holly Peay3 Author Orcid Image ;   Ian Coulter4 Author Orcid Image ;   Arlene Fink5 Author Orcid Image
Article Authors Cited by (13) Tweetations (21) Metrics

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;50:553 View
  10. Dammann P, Abla A, Al-Shahi Salman R, Andrade-Barazarte H, Benes V, Cenzato M, Connolly E, Cornelius J, Couldwell W, Sola R, Gomez-Paz S, Hauck E, Hernesniemi J, Kivelev J, Lanzino G, Macdonald R, Morcos J, Ogilvy C, Steiger H, Steinberg G, Santos A, Rauschenbach L, Darkwah Oppong M, Schmidt B, Spetzler R, Schaller K, Lawton M, Sure U. Surgical treatment of brainstem cavernous malformations: an international Delphi consensus. Journal of Neurosurgery 2022;136(5):1220 View
  11. Lowe D, Ryan R, Schonfeld L, Merner B, Walsh L, Graham-Wisener L, Hill S. Effects of consumers and health providers working in partnership on health services planning, delivery and evaluation. Cochrane Database of Systematic Reviews 2021;2021(9) View
  12. Vyas K, Luedke H, Ruban‐Fell B. Nordic treatment guidelines for rare epileptic conditions: A literature review. Brain and Behavior 2022;12(7) View
  13. Crossnohere N, Fischer R, Vroom E, Furlong P, Bridges J. A Comparison of Caregiver and Patient Preferences for Treating Duchenne Muscular Dystrophy. The Patient - Patient-Centered Outcomes Research 2022;15(5):577 View