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RECRUITINGOBSERVATIONAL

Patient Reported Outcomes Burdens and Experiences - Phase 3

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

Important: This information is not medical advice. Talk to your doctor about whether a clinical trial is right for you.

About This Trial

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.

Who May Be Eligible (Plain English)

Who May Qualify: - 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. Who Should NOT Join This Trial: - Disease severity and Age bands or age limits (e.g. ≥ Age 18) may be utilized to narrow the study population. Always talk to your doctor about whether this trial is right for you.

Original Eligibility Criteria

View original clinical language
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.

Treatments Being Tested

OTHER

Quality of life measure (survey)

The QoL tool is a questionnaire

Locations (1)

McMaster University
Hamilton, Ontario, Canada