Patient-centered outcomes
for meaningful research.
PROBE brings standardized patient-reported outcomes into clinical studies, helping researchers understand how treatments affect health, function, quality of life and everyday experience.
Go beyond clinical outcomes alone.
PROBE was developed with patients to capture outcomes that matter
in their lives and can complement traditional clinical measures.

Show what treatment means in patients’ lives
Demonstrating the value of a treatment requires more than traditional clinical endpoints alone. Patient-reported outcomes help show how treatment affects function, quality of life and day-to-day experience.
Patient-relevant outcomes
Capture health, pain, function, treatment experience and quality of life directly from participants.
Longitudinal follow-up
Follow participants across a study period and into real-world follow-up to understand change over time.
Standardized collection
Collect patient-reported information consistently across study participants and time points.
Comparative analysis
Support comparative effectiveness analysis by combining structured patient-reported outcomes with broader study evidence.
Add patient-reported evidence to your study
The PROBE platform can be used within clinical studies to collect outcomes that reflect participants’ health, function, treatment burden and quality of life.
Standardized patient-reported outcome collection
Repeated measurement across study time points
Longitudinal evaluation of change
Patient-centered evidence alongside clinical outcomes
A broader view of treatment impact
PROBE can complement clinical information by helping investigators examine outcomes that may not be fully visible through traditional clinical measures alone.
Health status
Capture participants’ reported health and quality of life.
Function
Understand the impact of disease and treatment on daily activities.
Pain
Examine acute and chronic pain experiences over time.
Treatment experience
Add patient perspective to assessment of treatment impact.
Patient-reported outcomes can support decisions at multiple stages
Access to meaningful patient-centered outcomes can contribute to evidence generation from clinical development through assessment, coverage and treatment decision-making.
Clinical development
Include patient-reported outcomes as part of the evidence collected during clinical studies.
Regulatory evidence
Add structured patient-centered information to the broader evidence package describing treatment impact.
Market & coverage assessment
Support discussions about value using evidence that reflects patient health and everyday experience.
Healthcare decisions
Help inform treatment and care discussions with evidence about outcomes that matter to patients.
Built for collaboration
PROBE can support academic, investigator-led and collaborative research seeking to integrate patient-centered outcomes into study design and analysis.
The PROBE team can discuss study objectives, use of the questionnaire, data collection approaches and opportunities for research collaboration.
Planning a clinical or academic study?
Contact the PROBE team to discuss whether PROBE is appropriate for your research question and study design.
Independent, investigator-led research
PROBE is an independent investigator-led research project supporting standardized collection and analysis of patient-reported outcomes in bleeding disorders.
Discuss your study with PROBE
Contact the PROBE team to explore how patient-reported outcomes can complement your clinical or academic research.


