Patient Reported Outcomes Burdens and Experiences - Phase 3

Recruiting now

Conditions studied: Hemophilia, Chronic Disease

In brief

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.

Key facts

Study ID

NCT03549858

Run by

McMaster University

People needed

1000

Starts

2018-01-01

Expected to finish

2027-12-31

Last updated by the study team

2025-08-22

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• 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.

You may not qualify if…

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

Where it is running

• McMaster University — Hamilton, Ontario, Canada (enrolling)

Full record on ClinicalTrials.gov

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