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.

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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.

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Participating Organizations

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

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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.

NEWS FEED

Point of Interest

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Publication of 2018 has been archived on our website.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!

December 2018

Test-retest properties of the Patient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire and its constituent domain paper has been published in Haemophilia Journal!

 

Recent Publications

January 2019

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

October 24th, 2018

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

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

 

htai19

     

   Health Technology Assessment international (HTAi)

      

Oral Poster Presentation: ID # 365: COMPARISON OF THE MEASUREMENT PROPERTIES OF PROBE AND EQ5D ON PAIN ASSESSMENT

 

ISTH19

 

   International Society on Thrombosis and Haemostasis (ISTH)

 

Posters: 

PATIENT REPORTED OUTCOME DATA ON SWITCH FROM STANDARD TO EXTENDED HALF LIFE IN IRISH ADULTS WITH HAEMOPHILIA

VALIDATION OF THE PATIENT REPORTED OUTCOMES BURDENS AND EXPERIENCES (PROBE) STUDY QUESTIONNAIRE

HEALTH STATUS OF PEOPLE LIVING WITH NON-SEVERE HEMOPHILIA - INSIGHTS FROM THE PATIENT REPORTED OUTCOMES, BURDENS AND EXPERIENCES (PROBE) STUDY

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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