Global Patient-Reported Research
Patient voice.
Evidence that matters.
PROBE captures the outcomes, burdens and experiences that matter to people living with bleeding disorders, transforming patient voice into evidence for research, care and advocacy.
Turning lived experience into meaningful evidence
PROBE provides a standardized way to understand how bleeding disorders affect health, function, pain, treatment experience and everyday life.
Capture
Collect patient-reported outcomes reflecting health, treatment, pain, function and everyday experience.
Understand
Transform standardized patient-reported data into meaningful evidence for analysis and comparison.
Advocate
Use evidence to support patient organizations, researchers and decision-makers seeking better outcomes and access to care.
Built for the bleeding disorders community
Patients
Share lived experiences and contribute to patient-centered evidence.
Patient Organizations
Use patient-reported evidence to support advocacy, planning and community priorities.
Researchers & Academics
Use standardized PROBE outcomes in research and collaboration.
Registries
Complement clinical data with patient-reported outcomes and experiences.
Healthcare & Policy Stakeholders
Understand the real-world burden and impact of bleeding disorders.
Research Partners
Collaborate on global, regional and disease-specific research.
Interactive evidence at your fingertips
Explore PROBE patient-reported outcomes through interactive data visualizations designed to support interpretation, research and advocacy.
PROBE at a glance
Participants • Countries • Languages
Participants
Countries
Languages
Explore the PROBE Dashboard
Watch a short demonstration of how the PROBE Dashboard transforms patient-reported data into interactive visualizations for research, interpretation and advocacy.
Current PROBE initiatives
Hemophilia
Core PROBE research examining patient-reported outcomes, burdens and experiences among people living with hemophilia.
Women with Bleeding Disorders
Expanding patient-reported evidence to better represent the experiences of women and girls with bleeding disorders.
von Willebrand Disease
Research and adaptation work extending PROBE methods to people living with von Willebrand disease.
Research & News
Explore the newest PROBE research, publications, conference materials, projects and updates.
Help strengthen the patient voice
Whether you are living with a bleeding disorder, representing a patient organization or conducting research, PROBE provides a way to turn lived experience into meaningful evidence.
