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.

PROBE Participation Events



     EAHAD - Madrid, Spain

     PROBE Posters Presentations

     The European Association for Haemophilia and Allied Disorders (EAHAD) is a multi-disciplinary association of healthcare professionals who provide care for individuals with haemophilia and other bleeding disorders. Its members include hematologists, internists, pediatricians, nurses, physiotherapists, laboratory scientists and researchers from across Europe.


wfh2018     WFH Congress - Glasgow, Scotland

     PROBE Posters Presentations

    The WFH World Congress brings together all members of our patient community, along with a wide range of professional backgrounds including hematologists, pediatricians, orthopedic surgeons, physiatrists, physiotherapists, dentists, nurses, social workers, psychologists, geneticists, laboratory technicians, researchers, scientists, policy makers, and advocates.  


 isth2018   ISTH SSC - Dublin, Ireland

    PROBE Posters Presentations

   The International Society on Thrombosis and Haemostasis (ISTH) is a global not-for-profit membership organization advancing the understanding, prevention, diagnosis and treatment of thrombotic and bleeding disorders.

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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