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

Electronic/Mobile Data Capture, Internet-based Survey & Research Methodology (832) Recruitment of Research Participants (296)

Published on in Vol 19, No 2 (2017): February

Experience With Direct-to-Patient Recruitment for Enrollment Into a Clinical Trial in a Rare Disease: A Web-Based Study

Experience With Direct-to-Patient Recruitment for Enrollment Into a Clinical Trial in a Rare Disease: A Web-Based Study

Experience With Direct-to-Patient Recruitment for Enrollment Into a Clinical Trial in a Rare Disease: A Web-Based Study

Authors of this article:

Jeffrey Krischer1 Author Orcid Image ;   Peter F Cronholm2 Author Orcid Image ;   Cristina Burroughs1 Author Orcid Image ;   Carol A McAlear2 Author Orcid Image ;   Renee Borchin1 Author Orcid Image ;   Ebony Easley2 Author Orcid Image ;   Trocon Davis2 Author Orcid Image ;   Joyce Kullman3 Author Orcid Image ;   Simon Carette4 Author Orcid Image ;   Nader Khalidi5 Author Orcid Image ;   Curry Koening6 Author Orcid Image ;   Carol A Langford7 Author Orcid Image ;   Paul Monach8 Author Orcid Image ;   Larry Moreland9 Author Orcid Image ;   Christian Pagnoux4 Author Orcid Image ;   Ulrich Specks10 Author Orcid Image ;   Antoine G Sreih2 Author Orcid Image ;   Steven Ytterberg10 Author Orcid Image ;   Peter A Merkel2 Author Orcid Image ;   Vasculitis Clinical Research Consortium11
Article Authors Cited by (22) Tweetations (23) Metrics

Journals

  1. Frampton G, Shepherd J, Pickett K, Griffiths G, Wyatt J. Digital tools for the recruitment and retention of participants in randomised controlled trials: a systematic map. Trials 2020;21(1) View
  2. Applequist J, Burroughs C, Ramirez A, Merkel P, Rothenberg M, Trapnell B, Desnick R, Sahin M, Krischer J. A novel approach to conducting clinical trials in the community setting: utilizing patient-driven platforms and social media to drive web-based patient recruitment. BMC Medical Research Methodology 2020;20(1) View
  3. Glover C, Creel-Bulos C, Patel L, During S, Graham K, Montoya Y, Frick S, Phillips J, Shah R. Facilitators of research registry enrollment and potential variation by race and gender. Journal of Clinical and Translational Science 2018;2(4):234 View
  4. Kogushi K, LoPresti M, Ikeda S. Systematic Literature Review of Clinical Outcomes in Adults with Metastatic or Advanced Synovial Sarcoma. Future Oncology 2020;16(35):2997 View
  5. Lamberti M, Smith Z, Henry R, Howe D, Goodwin M, Williams A, Getz K. Benchmarking Patient Recruitment and Retention Practices. Therapeutic Innovation & Regulatory Science 2021;55(1):19 View
  6. Jongen P, Kremer I, Hristodorova E, Evers S, Kool A, van Noort E, Hiligsmann M. Adherence to Web-Based Self-Assessments in Long-Term Direct-to-Patient Research: Two-Year Study of Multiple Sclerosis Patients. Journal of Medical Internet Research 2017;19(7):e249 View
  7. Clarke J, Proudfoot J, Vatiliotis V, Verge C, Holmes‐Walker D, Campbell L, Wilhelm K, Moravac C, Indu P, Bridgett M. Attitudes towards mental health, mental health research and digital interventions by young adults with type 1 diabetes: A qualitative analysis. Health Expectations 2018;21(3):668 View
  8. Reuter K, Angyan P, Le N, MacLennan A, Cole S, Bluthenthal R, Lane C, El-Khoueiry A, Buchanan T. Monitoring Twitter Conversations for Targeted Recruitment in Cancer Trials in Los Angeles County: Protocol for a Mixed-Methods Pilot Study. JMIR Research Protocols 2018;7(9):e177 View
  9. Stergiopoulos S. #PatientVoiceMatters: How Social Media Is Bringing Patients and Biopharmaceutical Companies Together to Improve Drug Development. Clinical Therapeutics 2017;39(11):2170 View
  10. Lamarca A, Frizziero M, McNamara M, Valle J. Clinical and Translational Research Challenges in Biliary Tract Cancers. Current Medicinal Chemistry 2020;27(29):4756 View
  11. Samman K, Ross C, Pagnoux C, Makhzoum J, Rothschild B. Update in the Management of ANCA-Associated Vasculitis: Recent Developments and Future Perspectives. International Journal of Rheumatology 2021;2021:1 View
  12. Nowell W, Merkel P, McBurney R, Young K, Venkatachalam S, Shaw D, Dobes A, Cerciello E, Kolaczkowski L, Curtis J, Kappelman M. Patient-Powered Research Networks of the Autoimmune Research Collaborative: Rationale, Capacity, and Future Directions. The Patient - Patient-Centered Outcomes Research 2021;14(6):699 View
  13. Pagnoux C, Fifi-Mah A. Update on Maintenance Therapies for ANCA-Associated Vasculitis. Current Treatment Options in Rheumatology 2021;7(2):112 View
  14. Dwyer A, Zeng Z, Lee C. Validating online approaches for rare disease research using latent class mixture modeling. Orphanet Journal of Rare Diseases 2021;16(1) View
  15. Miller E, Woodward A, Flinchum G, Young J, Tabor H, Halley M. Opportunities and pitfalls of social media research in rare genetic diseases: a systematic review. Genetics in Medicine 2021 View
  16. Applequist J, Burroughs C, Merkel P, Rothenberg M, Trapnell B, Desnick R, Sahin M, Krischer J. Direct-to-Consumer Recruitment Methods via Traditional and Social Media to Aid in Research Accrual for Clinical Trials for Rare Diseases: Comparative Analysis Study. Journal of Medical Internet Research 2023;25:e39262 View
  17. Dwyer A, Uveges M, Dockray S, Smith N. Advancing qualitative rare disease research methodology: a comparison of virtual and in-person focus group formats. Orphanet Journal of Rare Diseases 2022;17(1) View
  18. Rogers A, De Paoli G, Subbarayan S, Copland R, Harwood K, Coyle J, Mitchell L, MacDonald T, Mackenzie I. A systematic review of methods used to conduct decentralised clinical trials. British Journal of Clinical Pharmacology 2022;88(6):2843 View
  19. Zhang T. Ethics of ‘Counting Me In’: framing the implications of direct-to-patient genomics research. Journal of Medical Ethics 2024;50(1):45 View
  20. Kolls B, Muir K, Savitz S, Wechsler L, Pilitsis J, Rahimi S, Beckman R, Holmes V, Chen P, Albers D, Laskowitz D. Experience with a hybrid recruitment approach of patient-facing web portal screening and subsequent phone and medical record review for a neurosurgical intervention trial for chronic ischemic stroke disability (PISCES III). Trials 2024;25(1) View
  21. Cronholm P, Applequist J, Krischer J, Fontenot E, Davis T, Burroughs C, McAlear C, Borchin R, Kullman J, Carette S, Khalidi N, Koening C, Langford C, Monach P, Moreland L, Pagnoux C, Specks U, Sreih A, Ytterberg S, Merkel P, Martin J, Madden L, Rice B, Thomas J, Farquharson J, Jagadeesh S, Messier S, Robins D, Finco M, Godina J, Gonzalez J, Nielsen J, Crook S, Gartner K, Kisela E, Strozniak L, Hope L, McBride D, Beinhorn C, Kim Y, Mieras K. A study of implementation factors for a novel approach to clinical trials: constructs for consideration in the coordination of direct-to-patient online-based medical research. BMC Medical Research Methodology 2024;24(1) View

Books/Policy Documents

  1. Knoll M, Ifrah S. Translational Radiation Oncology. View