Survey study on patient experiences and burdens in people with hemophilia
Collects patient-reported experiences and burdens in people living with hemophilia over time.
Plain-language title generated from the registry record
Registry title: Patient Reported Outcomes Burdens and Experiences - Phase 3
Key facts
- Where
- Hamilton, CanadaSee the site
AI summary: who the study is looking for
From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.
The trial is looking for people living with hemophilia. They are recruited through national hemophilia patient organizations and answer surveys about their outcomes, burdens and experiences.
- Sex
- All sexes can join.
Main reasons for not taking part
- Disease severity and age limits may be used to narrow the group, but the record gives no specific values.
Read by machine on 12 November 2026.
Where in Canada
- McMaster UniversityHamilton, CanadaContact: Alfonso Iorio, MDTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Contact the study team: see the registry record → Contacts and Locations
Print a page for my doctorTrial details
- Who runs it
- McMaster University
- Trial code
- NCT03549858
- Record updated
- 22 August 2025
- Original description
The PROBE Phase-3 study will collect data on patient reported outcomes, burdens, and experiences in patients living with hemophilia. The investigators will perform comparisons among countries, within country over time, within country against national normative data.Read full original descriptionShow less
Patient Reported Outcomes Burdens and Experiences (PROBE) - Phase 3 - Longitudinal Data Collection
The PROBE Phase-3 study will collect data on patient reported outcomes, burdens, and experiences in patients living with hemophilia. The investigators will perform comparisons among countries, within country over time, within country against national normative data.
Inclusion: PWH will be recruited through national hemophilia patient organizations utilizing their existing membership rosters, social media outlets and meetings / events. The investigators are not proposing a pre-determined method of PWH recruitment. They will utilize the information acquired in the workshop and take-home project to inform best practice in recruitment methodology for the study. The investigators may consider requesting different countries test different PWH recruitment strategies to test reproducibility; In the future, the questionnaire might also be administered to patients with other chronic conditions.
Exclusion: Disease severity and Age bands or age limits (e.g. ≥ Age 18) may be utilized to narrow the study population.