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Patient Reported Outcomes Burdens and Experiences - Phase 3

Chronic Disease | Hemophilia

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.

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Participation Requirements

  • Sex:

    ALL

  • Eligible Ages:

    0 and up

Participation Criteria

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.

Study Location

McMaster University
McMaster University
Hamilton, Ontario
Canada

Contact Study Team

Primary Contact

Alfonso Iorio, MD

[email protected]
9055259140
Study Sponsored By
McMaster University
Participants Required
More Information
Study ID: NCT03549858