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.


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

January 2020

PROBE Poster has been accepted for 8th Annual Global Hemophilia Advocacy Leadership Summit meeting in Lisbon. 

October 2019

PROBE will hold first regional workshop for LATAM in Panama Summit.

Most of the LATAM is currently involved in data collection.

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

January 2019

Publication of 2018 has been archived on our website. Visit our publications for new and future releases!


Recent Publications

July 2019

New Abstracts and Posters are now available for view!

January 2019

EAHAD 2019 Abstracts are now available for view, please visit our PUBLICATIONS for more information.

July 16th, 2018

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



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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