It's not too late to complete the PROBE study! Your experiences can make the difference.
CLICK HERE TO DO THE SURVEY ONLINE
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.
WHO CAN PARTICIPATE?
You are invited to complete the PROBE questionnaire if you are an adult (18 years+) who lives in Australia and:
- Have haemophilia or carry the gene
- Do NOT have a bleeding disorder.
HOW TO DO THE SURVEY
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.
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.
Or contact Suzanne at HFA:
T: 1800 807 173