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
The integration of PROBE with CBDR is feasible and PROBE is a reliable tool for routine PRO data collection. Its use in clinical practice may improve data quality and personalized and patient-centred care.
Authors
- David Page (ORCID: https://orcid.org/0000-0001-5009-260X)
- Emma Iserman (ORCID: https://orcid.org/0000-0001-7539-6490)
- Drashti Pete (ORCID: https://orcid.org/0000-0002-4754-5046)
- Alfonso Iorio (ORCID: https://orcid.org/0000-0002-3331-8766)
- Federico Germini (ORCID: https://orcid.org/0000-0002-0802-3616)
- Quazi Ibrahim (ORCID: https://orcid.org/0000-0001-9302-0884)
- Elisabetta Trinari (ORCID: https://orcid.org/0000-0001-5859-652X)
- Arun Keepanasseril (ORCID: https://orcid.org/0000-0003-0733-9616)
- Mark W. Skinner (ORCID: https://orcid.org/0000-0002-0934-0680)
- Carlo Cossa (ORCID: https://orcid.org/0009-0003-6114-1034)
Institutions
- American Association For The Advancement of Science (US)
- Humanitas University (IT)
- Canadian Hemophilia Society (CA)
- IRCCS Humanitas Research Hospital (IT)
- Hamilton Health Sciences (CA)
- McMaster University (CA)
Publication Details
- Journal
- Haemophilia
- Published
- 2025-08-28
- DOI
- https://doi.org/10.1111/hae.70117
- Primary Topic
- Hemophilia Treatment and Research
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- Roche