PROBE study

 

 

 

Are you keen to help with advocacy on the impact of haemophilia and new treatments?

 

The PROBE (Patient Reported Outcomes Burdens and Experiences) study is a great opportunity for Australians to give high-quality evidence about what it’s like to have haemophilia and the impact of different types of treatments.

 

 

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

 

OR

 

 

 

Or contact HFA or your local Foundation for a print copy.

 

 

WHAT IS PROBE?

PROBE is a multi-national validated research study (www.probestudy.org) which allows people with haemophilia to report their haemophilia severity, treatment history and the impact of haemophilia on their daily life. It compares their answers to other people in their community who do not have a bleeding disorder.

WHY IS IT IMPORTANT? 

With new treatments becoming available high-quality evidence is particularly important. HFA’s advocacy relies on credible data.  Without this data we have not had enough strong evidence to use in our advocacy for new treatments.

We also need good evidence to understand the different experiences of living with haemophilia – for example, women with haemophilia or who carry the gene, people with mild, moderate or severe haemophilia or inhibitors, getting older with haemophilia. 

Statistics from Australians who complete the questionnaire will be provided to HFA by the international PROBE team for us to use in our advocacy and planning for the future.

HAVEN’T I ALREADY DONE THE PROBE SURVEY?

Previous versions were testing the questionnaire to see if it worked. This time the survey is collecting your experiences as real-world data.

HOW CAN YOU HELP?

• If you fit the criteria you can complete the questionnaire.
• You may also like to pass the survey on to your partner/wife/husband or other members of your family or interested friends. If they don’t have a bleeding disorder, their answers are also very valuable – we need equal numbers of people affected by haemophilia and people without a bleeding disorder.

We need a few hundred Australian participants for good quality results, so the more people who complete the survey, the better!

WHAT HAPPENS TO YOUR DATA?

All responses are anonymous and confidential. They are combined as statistics and will not identify individuals. The survey is voluntary – it is up to you if you want to complete it and no one will know if you have or haven’t.

Please note: In May Australia was accidentally sent the test website to distribute for the PROBE real-world survey – https://stage.mcmaster.plus/PROBE/. This was corrected almost immediately and links on this website are all now to the final real-world PROBE website – https://plus.mcmaster.ca/PROBE/. If you completed the survey on the test website, the international team has transferred your data to the real-world website. Those visiting the test website now will receive a pop-up directing them to the real-world survey website. The data security is the same – it's just a different database.

MORE INFORMATION

Click here for more information about the PROBE study in Australia. 

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