RecruitingNCT03549858

Patient Reported Outcomes Burdens and Experiences - Phase 3

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

Sponsor

McMaster University

Enrollment

1,000 participants

Start Date

Jan 1, 2018

Study Type

OBSERVATIONAL

Conditions

Hemophilia Chronic Disease

Summary

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.

Eligibility

Inclusion Criteria2

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.