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PROBE study

PROBE - Patient Reported Outcomes Burdens and Experiences Study

The 2023-24 round of the PROBE Australia Study has  now commenced.

Click here to complete the web survey – select AUSTRALIA

You can also download the myPROBE app version from

  • Apple Store (iOS)
  • Google Play (Android)

Or ask HFA to send you a print copy.

Closing date extended. Please complete the survey by 31 March 2024.

The PROBE (Patient Reported Outcomes Burdens and Experiences) Study 

How can HFA and haemophilia organisations around the world have access to good quality data about the health and treatment experiences of people with bleeding disorders?

The multi-national PROBE (Patient Reported Outcomes Burdens and Experiences) Study aims to do precisely that.

Haemophilia Foundation Australia has joined the PROBE investigation team to be part of this important international study on the impact of living with a bleeding disorder.

WHAT IS THE PROBE STUDY?

PROBE is a patient-focused research project led by a global team of patient and academic investigators, including Mark Skinner, former WFH President, and Assoc Prof Alfonso Iorio from McMaster University, Canada, who have worked closely with HFA on the Australian arm of the study. The research will support efforts to improve treatment and comprehensive care programs in Australia and other countries around the world.

In the future the PROBE study will cover the range of bleeding disorders. The initial stages of the survey (Phases 1, 2 and 3) have been testing and implementing the research methodology in haemophilia. They allow people with haemophilia to report their haemophilia severity, treatment history and the impact of haemophilia on their daily life.

This data is being used to analyse the perspectives of people with haemophilia on outcomes that affect their own life and care. It is particularly important data to have when HFA tries to understand what the issues are for our community, and enables us to quantify and represent these issues in a robust and credible way to our Council and others, such as governments or treatment and service funding bodies.

For more information about PROBE international, visit the PROBE study website.

Date last reviewed: 4 December 2023

Important Note: This information was developed by Haemophilia Foundation Australia for education and information purposes only and does not replace advice from a treating health professional. Always see your health care provider for assessment and advice about your individual health before taking action or relying on published information. This information may be printed or photocopied for educational purposes.

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