Haemophilia Foundation Australia leads the PROBE Australia Study. This is the Australian subset of the international PROBE (Patient Reported Outcomes Burdens and Experiences) Study.
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 supports efforts to improve treatment and comprehensive care programs in Australia and other countries around the world.
The PROBE study is being developed to cover the range of bleeding disorders. The initial PROBE Australia Study has been testing and implementing the research methodology in haemophilia. It allows people with haemophilia to report their haemophilia severity, treatment history and the impact of haemophilia on their daily life.
Other PROBE research studies in development include questionnaires on von Willebrand disease (CoreVWD) and women, girls and people with the potential to menstruate (WGPPM).
This data is being used to analyse the perspectives of people with bleeding disorders 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.