Patients

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People with Hemophilia

Understanding the outcomes measured by PROBE is an effective way to learn more about current treatments and how they are affecting patients' daily lives. This can help patients better advocate with their health care providers, and can help the industry better serve patients and healthcare systems.

General Populations

In order to have a comprehensive study, we need a control group consisting of people who do not have a bleeding disorder. The more participants we get, the more valuable our data becomes in understanding how to measure and benchmark wellness and livability.

Other Bleeding Disorders

PROBE does not currently conduct research on other bleeding disorder patient groups, but it is a goal for future work. If you have a specialty area and are interested in the PROBE model, contact us and we can discuss the opportunity.

Participate using the web platform or download myPROBE App

We are seeking input from both individuals living with hemophilia as well as those who do not personally have a bleeding disorder.  For comparison purposes, the responses of individuals without a bleeding disorder (e.g., parents, brothers and sisters of someone living with hemophilia) are very important to our research analysis. If you are a parent or caregiver of a child with a bleeding disorder, please answer the questions for yourself. Do not answer for your child.

The survey will take approximately 15 minutes to complete. You will be asked personal questions about your health, your age, your medical history and its impact on your daily living. There are many ways to take the survey: use your myWBDR registration information to participate; use you log-in with a local bleeding registry (myCBDR as example); register with myPROBE; or continue as guest. If you choose to continue as guest, you won't be able to track your progress over time and the personal dashboard will not be available. All responses will have identifying information removed and will be combined with those from other respondents. A summary report will be provided to participating patient organizations.

Got questions about participating?

Contact us today. Or visit our FAQ.