Quality of life measure (survey): The QoL tool is a questionnaire
Study 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
Sex
ALL
Min age
—
Max age
—
Healthy volunteers
No
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.
Primary outcome measure(s)
Between-countries variability of the PROBE score — 2 years Mean difference and standard deviation of the PROBE score between countries.
This page summarises publicly available registry data for informational purposes — not medical advice. Eligibility is determined by each study team; patients should discuss participation with their clinician.
We use cookies to analyse site traffic and improve your experience. With your consent, we may also use cookies for advertising. You can change your choice at any time.