The Canadian Hemophilia Society (CHS) is reminding MyCBDR users to take part in the PROBE survey, a short, patient‑designed questionnaire that helps capture the real‑world experiences of people living with hemophilia. If you received an email invitation recently, it’s because you haven’t completed the survey since September 2025—or have never completed it.
CHS is encouraging community members to take 15–20 minutes to participate. Completing the survey not only provides insight into your own health and quality of life, but also contributes anonymous data that strengthens national advocacy for access to new and emerging therapies.
What Is the PROBE Survey?
PROBE (Patient Reported Outcomes, Burdens and Experiences) is a global questionnaire created by patients, for patients. It gathers information on how hemophilia affects:
- Daily activities
- Education and employment
- Pain and mobility
- Overall quality of life
Data from PROBE has played a meaningful role in CHS advocacy efforts, including improved access to therapies such as emicizumab (Hemlibra), extended half‑life factor VIII and IX products (including Altuviiio), and gene therapy for hemophilia B (Hemgenix).
To learn more about the PROBE study, see https://probestudy.org/.
