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

Design and Usability of Clinical Software and EHRs (356) Usability of Apps and User Perceptions of mHealth (1203) Patient-Reported Outcome Measures (PROMs) (376) User-Centered Design Case Studies (719) Mobile Health (mhealth) (3516) Design and Formative Evaluation of Mobile Apps (813) Telehealth and Telemonitoring (2114) Electronic/Mobile Data Capture, Internet-based Survey & Research Methodology (1003) mHealth for Symptom and Disease Monitoring, Chronic Disease Management (1765)

Published on in Vol 9, No 1 (2022): Jan-Mar

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/30797, first published .
User-Centered Development and Testing of the Online Patient-Reported Outcomes, Burdens, and Experiences (PROBE) Survey and the myPROBE App and Integration With the Canadian Bleeding Disorder Registry: Mixed Methods Study

User-Centered Development and Testing of the Online Patient-Reported Outcomes, Burdens, and Experiences (PROBE) Survey and the myPROBE App and Integration With the Canadian Bleeding Disorder Registry: Mixed Methods Study

User-Centered Development and Testing of the Online Patient-Reported Outcomes, Burdens, and Experiences (PROBE) Survey and the myPROBE App and Integration With the Canadian Bleeding Disorder Registry: Mixed Methods Study

Authors of this article:

Federico Germini1, 2 Author Orcid Image ;   Victoria Borg Debono1 Author Orcid Image ;   David Page3 Author Orcid Image ;   Victoria Zuk1 Author Orcid Image ;   Alexandra Kucher4 Author Orcid Image ;   Chris Cotoi1 Author Orcid Image ;   Nicholas Hobson1 Author Orcid Image ;   Michael Sevestre5 Author Orcid Image ;   Mark W Skinner1, 6 Author Orcid Image ;   Alfonso Iorio1, 2 Author Orcid Image ;   PROBE Investigators7
Article Authors Cited by (11) Tweetations (2) Metrics

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  1. Byams V, Baker J, Bailey C, Connell N, Creary M, Curtis R, Dinno A, Guelcher C, Kim M, Kulkarni R, Lattimore S, Norris K, Ramirez L, Skinner M, Symington S, Tobase P, Vázquez E, Warren B, Wheat E, Buckner T. Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities in health services; diversity, equity, and inclusion; and implementation science. Expert Review of Hematology 2023;16(sup1):87 View
  2. Curtis R, Wu J, Iorio A, Frick N, Nichol M, Noone D, O'Mahony B, Page D, Stonebraker J, Kucher A, Clearfield E, Skinner M, Germini F. Test–retest reliability of a mobile application of the patient reported outcomes burdens and experiences (PROBE) study. Haemophilia 2024;30(3):702 View
  3. Benemei S, Boni L, Castaman G. Outcome measures in hemophilia: current and future perspectives. Expert Review of Hematology 2024;17(7):329 View
  4. Ferdous Z, Beegam S, Zaaba N, Nemmar A. Exposure to Waterpipe Smoke Disrupts Erythrocyte Homeostasis of BALB/c Mice. Biology 2024;13(6):453 View
  5. Taneja S, Heddle N, Hillis C, Lane S, Karunakaran M, Maze D, Modi D, Khalaf D, Arnold D, Zahreddine H, Webert K, Hess L, Cook R, Stanworth S, Gernsheimer T, Vanstone M. Healthcare provider's perceptions of bleeding in patients with acute leukaemia undergoing induction chemotherapy: A qualitative study. Transfusion Medicine 2024;34(4):268 View
  6. Kahl F, Kapsecker M, Nissen L, Bresser L, Heinemann M, Reimer L, Jonas S. Digital Technologies in Hereditary Coagulation Disorders: A Systematic Review. Hämostaseologie 2024;44(06):446 View
  7. Giordano L, Pagana A, Minciullo P, Fazio M, Stagno F, Gangemi S, Genovese S, Allegra A. Artificial Intelligence in the Management of Hereditary and Acquired Hemophilia: From Genomics to Treatment Optimization. International Journal of Molecular Sciences 2025;26(13):6100 View
  8. Nemes L, Hartmann H, Kostelac H, Roblek T. Patient Preference and Mobile Application Use in Hemophilia A: A Cross-Sectional Survey from Eastern Europe. Journal of Patient Experience 2025;12 View
  9. Germini F, Cossa C, Trinari E, Iserman E, Ibrahim Q, Pete D, Keepanasseril A, Page D, Skinner M, Iorio A. Feasibility of Administering the Patient Reported Outcomes, Burdens and Experiences (PROBE) Questionnaire Through the Canadian Bleeding Disorders Registry (CBDR) and Comparison of Data From the Two Sources. Haemophilia 2025;31(6):1183 View
  10. Hua J, Sun D, Wang H, Chang J, Fei G, Zhou Q, Hui N, Gu D, Zhu L. Development of a nurse-led mHealth intervention framework for patients with chronic diseases: A systematic review and Delphi study. DIGITAL HEALTH 2025;11 View
  11. Huberts A, Long P, Porth A, Fierens L, Carney N, Koppert L, Kautzky-Willer A, de Rooij B, Stamm T. Tracking Chronic Diseases via Mobile Health Applications: Which User Experience Aspects Are Key?. Healthcare 2025;13(24):3272 View