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Clinical trial Recruiting at 1 site Observational

Collecting patient experiences and outcomes in hemophilia

Official title: Patient Reported Outcomes Burdens and Experiences (PROBE) - Phase 3 - Longitudinal Data Collection

Run by McMaster University · NCT03549858 · Data updated 2026-11-12

This study is trying to collect and compare experiences and outcomes from people with hemophilia across different countries to better understand their needs and challenges over time.

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Quick facts

Study typeObservational
SexAll
Enrollment1000 (estimated)
SponsorMcMaster University
Academic / other
Locations1 site (Hamilton, Ontario)
StatusRecruiting
StartedJanuary 1, 2018
Main results expectedDecember 31, 2027
Study endsDecember 31, 2027
Registry record updatedAugust 22, 2025
Trial IDNCT03549858 on ClinicalTrials.gov

Is this trial a fit for you?

Likely a good fit

Ideal candidates for this study are individuals living with hemophilia, particularly those aged 18 and older.

Probably not a fit

Patients with severe disease conditions unrelated to hemophilia or those under the age of 18 may not benefit from this study.

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

The PROBE Phase-3 study aims to gather data on patient-reported outcomes, burdens, and experiences from individuals living with hemophilia. This observational study will compare data across different countries and within countries over time, utilizing a validated questionnaire developed in previous phases. The study will also adapt its infrastructure to allow for longitudinal data collection, enhancing the understanding of patient experiences. Reports will be generated every two years to track changes and trends in patient-reported outcomes.

Why it matters

Potential benefit: If successful, this study could provide valuable insights into the quality of life and challenges faced by patients with hemophilia, potentially guiding better treatment and support strategies.

How similar studies have gone: Previous phases of the PROBE study have shown success in validating the questionnaire across multiple countries, indicating a strong foundation for this phase.

Who can join: the full rules

Show full inclusion / exclusion criteria 
Inclusion Criteria:

* 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 Criteria:

* Disease severity and Age bands or age limits (e.g. ≥ Age 18) may be utilized to narrow the study population.

Where it's running

  • McMaster University
    Hamilton, Ontario, Canada     Recruiting

Study contacts

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

How to take part

  1. Review the eligibility criteria above with your treating physician.
  2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
  3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.
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Hemophilia 59Chronic Disease 91McMaster University 75
Last reviewed 2026-11-14 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.