Patient Reported Outcomes Burdens and Experiences - Phase 3
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorMcMaster University
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.
Eligibility criteria
Qualifiers
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.
Disqualifiers
Disease severity and Age bands or age limits (e.g. ≥ Age 18) may be utilized to narrow the study population.
Trial design
Treatments tested in this trial
- Quality of life measure (survey)
Treatment groups
No treatment groups listed
Sponsors and collaborators
McMaster University
Lead sponsor
Patient Outcomes Research Group (PORG)
Collaborator
National Hemophilia Foundation
Collaborator
Source ClinicalTrials.gov