Enhancing the Direct Patient Voice

The mission of the Patient Reported Outcomes, Burdens, and Experiences (PROBE) study is to investigate and directly probe patient perspectives on outcomes they deem relevant to their life and care. PROBE aims to develop a new global tool to enhance the direct patient-voice in health care decision-making.


Patient Reported Outcomes, Burdens, and Experiences

PROBE aims to implement a structured data collection framework for patient reported outcomes across a wide spectrum of countries and health economic environments, and to build a robust evidence base for comparative effectiveness, outcome research, evidence based decision making, and advocacy. PROBE has been developed with direct patient involvement in the design, conduct, analysis and reporting of patient-centered outcomes in the field of hemophilia.


Global Community

In 2020, 80+ countries, 30+ languages.





Stay in touch with PROBE!

By submitting this form, you are granting the Patient Outcomes Research Group permission to email you about the PROBE Study. You can revoke permission to mail to your email address at any time by contacting info@probestudy.org.


Point of Interest

October 2020


Mark Skinner, President/CEO of the Institute for Policy Advancement, USA, and David Page, National Director of Health Policy at the Canadian Hemophilia Society, Canada, talk about the importance of data collection and patient-reported outcomes for enhancing the patient voice in healthcare decision-making. They discuss one data collection project in particular, called PROBE, and highlight how it can be used as an evidence-based tool by advocacy groups.




September 2020

NEW* Available languages are added on "Participating organization" page!

July 2020

Visit PROBE at virtual NHF's Bleeding Disorders Conference 2020! Virtual Conference will be held August 1 - August 8, 2020.

March 2019

New article has been published in Haemophilia Journal: Exploring regional variations in the cross‐cultural, international implementation of the Patient Reported Outcomes Burdens and Experience (PROBE) study



Recent Publications

September 2020

Non-severe haemophilia:  Is it benign? - Insights from PROBE study.

July 2020

New Abstracts and Posters are now available for view!



PROBE Participation Events

Virtual Conference:

NHF's Bleeding Disorders Conference 2020: 1-8 August, 2020

The European Haemophilia Consortium (EHC) Conference 2020: 5-9 October 2020


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PROBE is developing a new global research tool to:

  • Increase the role and value of the direct patient voice in healthcare decision making
  • Move advocacy arguments beyond emotion and anecdote to evidence-based arguments grounded on real-world patient experiences
  • Provide a validated foundation for patient reported outcomes when used in assessments of new health care services, procedures and medical technology
  • Allow measurement and comparison of the impact of disease and treatment interventions on the life experiences of patients