PROBE Australia Study Update

We are building evidence about the needs of men and women affected by haemophilia in Australia and I would really appreciate your help.

You may remember our earlier posts about participating in the PROBE Australia Study.

PROBE - Patient Reported Outcomes Burdens and Experiences Study

What is the PROBE Study?

This study is co-ordinated by Haemophilia Foundation Australia and is an internationally recognised and validated questionnaire. It collects data on the impact of haemophilia on the quality of life of both men and women who are affected, either because they have haemophilia or carry the gene. It compares their experience to people who do not have a bleeding disorder.

So far we have only had around 40 men and 25 women affected by haemophilia complete the PROBE survey – we need at least 200 for good data.

We also need a similar number of people without a bleeding disorder as a comparison group.

Why is PROBE important?

PROBE data is high quality and credible and we use it in many ways. You may have seen some of the data from the 2019 PROBE Australia Study in reports and conference presentations. Some examples include:

  • In the HFA Getting Older report, to underline the issues for physical function and pain, and for people with mild haemophilia, women, hepatitis C
  • In discussions and submissions to government, to advocate for people with bleeding disorders about new treatments and services.
  • At the 2023 Australian Conference on Haemophilia, VWD and Rare Bleeding Disorders conference in the plenary on mild haemophilia
  • International meetings to discuss the issues for people with mild haemophilia
  • We have had a poster on 2019 PROBE data accepted for publication at the 2024 WFH Congress in Madrid – this is a peer-reviewed publication.

How can you help?

Please consider completing the current PROBE Australia survey as soon as possible – and you don’t need to have a bleeding disorder to contribute!

If you don’t have a bleeding disorder, you can be a health professional, someone interested in haemophilia, or any adult Australian really. We just need a slice of the Australian general community.

It is voluntary and anonymous, so it is up to you – but we would really value your support.

Who can complete the survey?

Adult (18 yrs+) men and women living in Australia

  • Who have haemophilia/carry the gene
  • OR who do NOT have a bleeding disorder (comparison group)

How to do the survey

It’s very easy! Go to:

  • myprobe.org for the web version
  • Or download the myPROBE app from Apple Store or Google Play (Android)
  • Or ask HFA for a print survey pack

If you have already done the survey, perhaps you could share it with family and friends and encourage them to complete it too. For good results we need hundreds of participants!

Questions?

If you have any questions, I encourage you to:

Visit www.haemophilia.org.au/probe-study

Or contact Suzanne at HFA:
E: socallaghan@haemophilia.org.au  T: 1800 807 173

Thank you for helping us with this important study.

Latest stories

Rare Disease Day 2024

Rare Disease Day 2024

Today is Rare Disease Day – a rare leap year day and very fitting for a worldwide event to raise awareness and generate change for people with rare diseases.

Read More

Welcome to our new website

HFA has a new website! You’ll find all of the same great content and information, but in brand new packaging. Over the past 12 months we’ve been working hard with the team at Heartburst to modernise the HFA website. We have great plans for new features to be added in 2024, so please be patient with us while we’re in the process of developing them.

Read More

Join the HFA community

Sign up for the latest news, events and our free National Haemophilia magazine

Skip to content