PROBE (Patient Reported Outcomes Burdens and Experiences) is a multinational short questionnaire prepared by and for hemophilia patients, collecting information about the impact of hemophilia on daily life. This questionnaire looks at factors related to the patients’ health including demographics, lifestyle, health concerns and quality of life. National hemophilia patient organizations, including the Canadian Hemophilia Society (CHS), use this data to improve care for people with hemophilia.
As of September 2020, the scope of the questionnaire has extended to 90 countries and has been delivered in over 30 languages; more than 400 Canadians have completed the questionnaire amongst thousands of participants worldwide. The data collected from the Canadian population is being used by the CHS to advocate for easier and faster access to quality innovative therapies for hemophilia treatments.
Also, with PROBE 2.0, a newer, more user-friendly version of the PROBE website, patients are now able to print/send their results directly to their treatment centre, caregivers and/or other individuals. In addition, they can track their own PROBE and health related quality of life scores over time.
Goals for 2020
By the end of 2020, efforts will be consolidated to achieve the following participation goals for Canada:
- Have completed surveys from 30% of all Canadian patients with severe FVIII and IX: this means 100 additional patients with severe FVIII and seven more with severe FIX. Thirty-percent is considered as a very representative sample.
- Have completed surveys from 20 additional patients with moderate FVIII and 20 more with mild FVIII.
- Have completed surveys from 10 additional patients with moderate FIX and 10 more with mild IX.
- Have completed surveys from 20 additional carriers of hemophilia A or B.
How to participate?
If you use MyCBDR, you can login to PROBE using your MyCBDR user/password, and your data will be automatically connected to your CBDR file. Also, a mobile app of the PROBE questionnaire is now available for Canadians and is accessible for people with or without hemophilia.
- You can complete the questionnaire from your laptop, mobile or other devices.
- Fill out the PROBE questionnaire anytime in the next few weeks, and in about six months PROBE will send you a reminder to complete it again.
- Ask a friend or family member WITHOUT hemophilia to download the myPROBE app, register (they won’t have MyCBDR!!) and fill out the questionnaire. This will generate benchmark data.
The PROBE study group is a global team of investigators with administrative support from the U.S. National Hemophilia Foundation. Should you have any questions about the survey, you may contact the study team at firstname.lastname@example.org or you can go to the website: probestudy.org. If you have any issues related to MyCBDR, feel free to contact the MyCBDR help desk at email@example.com.
PROBE moves to intensive data collection phase (March 2018)