HFA has commenced an important research study called the HaemPref (Haemophilia Treatment Preferences) Survey.
If you or your child have haemophilia, we invite you to participate in the survey.
The survey asks you about what you would like haemophilia treatment to achieve for you or your child. What do you think would result in a better quality of life? And what types of treatment would you prefer – or see as acceptable?
It’s exciting to see that several new and innovative haemophilia treatments are in the pipeline, but it’s important for HFA to know your preferences. This helps us to represent and support you.
HFA has commissioned the well-respected research group Community and Patient Preference Research (CaPPRe) to conduct the HaemPref (Haemophilia Treatment Preferences) Survey on our behalf to understand what you value from treatment. This is an independent study, fully funded by the Haemophilia Foundation Research Fund.
What’s involved?
If you decide to participate you will be asked to:
• Complete an anonymous online questionnaire (taking approx 30 mins)
• Give your opinion of different treatment options
• Answer questions about your treatment experience
• Consider answering other optional questions about you, e.g. the state/territory you live in.
You will need to do the survey on a computer not a phone as it includes several tables.
The survey is voluntary and all data will be kept confidential.
You will be reimbursed $50 for your time.
Who can do the survey?
• Australian residents only
• Adults (18 yrs +) with haemophilia
• Parents of children (under 18 yrs) with haemophilia
Any other questions?
There is more information on the Treatment Preferences Study page and in the introduction to the survey.
Please don’t hesitate to contact us if you have other questions.
Thank you for your interest in this important project.
