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2023 PROBE Australia Study

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

The PROBE Australia Study is the Australian contribution to the multinational PROBE (Patient Reported Outcomes Burdens and Experiences) Study.

You may have done the PROBE survey in 2019. This is a new round of the survey. 

The 2023-24 round will compare results now to 2019, which was before new treatments were widely available in Australia.

Click here to complete the PROBE questionnaire – select AUSTRALIA

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

HOW CAN YOU BE INVOLVED?

You are invited to complete the questionnaire if you are an adult (18 years+) who lives in Australia and:

  • have haemophilia or carry the gene

OR

  • do NOT have a bleeding disorder.

Consider passing the survey on to your partner/wife/husband or other members of your family or interested friends or colleagues. The answers of people without a bleeding disorder are also important – they will be compared to people with haemophilia. We need several hundred Australian participants for good quality results.

HOW TO DO THE SURVEY

The questionnaire is available in different formats:

Choose Country-Australia and Language-English and CONTINUE

FAQS

Q. What if I don’t have time to do the survey all at once?

A. The web and app survey automatically saves your responses as you go. You can come back later and keep going from where you left off.

Q. Can multiple people use the same device to complete the survey?

A. Yes. When one person has completed the survey and submitted, the next person can start. You may need to logout of the survey to start again on some devices.

Q. Can I do the survey if I don’t have a bleeding disorder?

A. Yes. Your survey response will be very important as a comparison to people with haemophilia. We need several hundred people without a bleeding disorder to complete PROBE as well as people with haemophilia, so consider encouraging other people you know to do the survey.

Q. My doctor just gave me a PROBE questionnaire to complete. Is this the same survey?

A. It is the same questions but not the same study. PROBE is a well-respected and validated questionnaire so Australian HTCs are also using it for some of their research studies. If you want to participate in both the HTC research study and the HFA PROBE Australia Study, you will need to complete both questionnaires.

WHAT HAPPENS TO YOUR DATA?

All responses are anonymous and confidential. They are combined for statistical data and will not identify individuals. The survey is voluntary – completely up to you – and no one will know if you have completed the questionnaire or not.

Statistics from Australians survey responses are provided to HFA by the international PROBE team to use in our advocacy and planning for the future.

WHY IS THE PROBE AUSTRALIA STUDY IMPORTANT?

What is the impact of haemophilia on Australians? What has changed since new treatments became available? How can we provide high quality evidence about this?

With more new treatments becoming available, HFA’s advocacy will rely on strong and credible data – like the data from PROBE.

We also need good evidence to understand the different experiences of living with haemophilia – for example, women, people with mild haemophilia or inhibitors, getting older with haemophilia. PROBE data is helping to point out important issues in all of these areas.

You may have seen the 2019 PROBE data in the HFA Getting Older report. Detailed findings from PROBE can be found in Appendix 2.

MORE INFORMATION

Find out more about the international PROBE Study

For more information about the PROBE Australia Study,  contact Suzanne at HFA:
E: socallaghan@haemophilia.org.au
T: 1800 807 173

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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