Patient Organizations

Powered by the Voice of Patients.

Increasing the value of the patient voice.

Patients have a unique perspective and consider issues differently than regulators, manufacturers, scientists, clinicians, and payers. Our goal is to move advocacy beyond emotion and anecdote to evidence-based arguments grounded in real-world patient outcomes.

 

PROBE collects outcomes deemed relevant to a patient’s life:

  • Pain – chronic, acute, interference, when occurs
  • Independence – impact on daily living, activities of daily living
  • Education – attainment, attendance
  • Employment – duration, underemployment, attendance
  • Family life – marriage, children
  • Mobility – assistance required, impairment
  • Current health status (EQ-5D-5L – VAS)

 

PROBE also collects explanatory variables:

  • Demographic and personal characteristics
  • Hemophilia related questions e.g., disease severity, treatment and bleeding history, target joints, and impairment

We look forward to collaborating with your local NMO, HTC, or Bleeding Disorder Registry.

What will you get out of the collaboration with PROBE:
Personalized dashboard (local and global PROBE data)
Technical support (upon special request)
Research support if needed
and more...

By elevating the patient voice, we can understand a patient’s experience both from a clinical perspective and a functional status perspective.

Visual representation of PROBE Study availability. Contact us to find out if it is available in your country.