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Real-world (Phase 3)

IN PHASE 3 OF THE PROBE STUDY (REAL-WORLD), THE WIDER HAEMOPHILIA COMMUNITY IS INVITED TO PARTICIPATE IN THE SURVEY.
Phase 3 or the REAL WORLD rollout of the PROBE (Australia) Study has now commenced.

Click here to complete the 2023 PROBE survey – select AUSTRALIA

Please complete the survey by 31 January 2024.

Read about results from the 2019 PROBE (Australia) Study in the Getting Older report

The aim is to collect information about the impact of haemophilia and current treatments from the perspective of Australian adults with haemophilia or who carry the gene. This is also compared to experiences of other adults in this community who do not have a bleeding disorder.
REAL-WORLD IMPLEMENTATION
This is known as the ‚Äėreal-world‚Äô study. This time community members‚Äô questionnaire responses are analysed and used as data about real-life experiences rather than testing whether the questionnaire works.
WHY BE INVOLVED IN THE REAL WORLD STUDY?
For Australians this is an important and exciting opportunity to create our own database of high-quality patient data about individuals’ experience of haemophilia, treatment and quality of life. We need data like this to understand current issues for our community; and also to represent these issues to governments or treatment and service funding bodies in a credible way. Without this data HFA has not had enough strong evidence to use in our advocacy for new treatments.

Findings from the 2019 round of the PROBE (Australia) Study are now being used as evidence in HFA strategic work, for example the HFA Getting Older report.

In 2023 we have now commenced a new round of data collection to compare with these results.
WHO CAN PARTICIPATE?
In the Phase 3/Real World PROBE Australia Study
All adults (18 years or over) who live in Australia were invited to participate if they
  • have¬†haemophilia or carry the gene
OR
  • do NOT have a bleeding disorder¬†(eg, partner/wife/husband, extended family, caregiver, friend of someone with a bleeding disorder).
HOW TO PARTICIPATE?
Participants were invited to complete an anonymous and confidential questionnaire online, in a web app or in print.
PHASE 3 EXTENSION STUDY
In Phase 3 the international investigators are studying the capacity of the system to continue to collect country data for large numbers of participants worldwide over time.
Another aspect of Phase 3 is to investigate modifying the infrastructure of the database system and data collection process to allow for longitudinal collection of PROBE data. This is so that individuals can complete the questionnaire at regular intervals, eg every 2 years, and to link their responses each time they do the survey to see if anything has changed for them.  Some countries including Canada have been testing this during Phase 3. HFA is looking into the feasibility of doing the same in the future in Australia.
For more information about the Phase 3 Extension study, visit the trial information on NCT03549858 at ClinicalTrials.gov.
MORE INFORMATION
For more information about the¬†PROBE Australia Study,¬†¬†please contact Suzanne O’Callaghan at HFA:
T: 1800 807 173
To find out more about¬†PROBE international, visit the PROBE study website ‚Ästwww.probestudy.org¬†

MORE ABOUT THE PROBE STUDY

Date last reviewed: 14 March 2019

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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