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.


Participating Organizations

In 2017, 21 countries have been involved in the study.




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

November 2018

"Test-retest properties of the Patient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire and its constituent domains and questions" manuscript was accepted for publication in Haemophilia.

January 2018

PROBE Investigator Team welcomes new member of the team Chatree Chai-Adisaksopha, MD.

Recent Publications

October 24th, 2018

New poster available: Impact of hemophilia on employment - Insights from the PROBE Study

September 26th, 2018

"Impact of hemophilia on employment - Insights from the PROBE Study" abstract has been publish by National Hemophilia Foundations.

September 22nd, 2018

"Psychometric properties of the Patient Reported Outcomes, Burdens and Experiences (PROVE) questionnaire" article has been published by BMJ Open. Follow the link for more details - Click Other Publications

July 16th, 2018

Looking for PROBE posters or abstracts from ISTH, 2018? Follow the link for more information - Click POSTERS or ABSTRACTS



PROBE Participation Events



   Bleding Disorder Conference (NHF) - Orlando, USA

   PROBE Session / Poster Presentation

   NHF’s 70th Bleeding Disorders Conference will be held October 11 - October 13, 2018  in Orlando, Florida at the beautiful Orlando World Center Marriott. Join us for three days full of educational sessions, networking opportunities, and access to our exhibit hall.

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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