In Phase 3 of the PROBE study (real-world), the wider haemophilia community is invited to participate in the survey.
The aim is to collect information about the impact of haemophilia and current treatments from the perspective of Australian adults with haemophilia or who carry the gene. This is also compared to experiences of other adults in this community who do not have a bleeding disorder.
This is known as the ‘real-world’ study. This time community members’ questionnaire responses will be analysed and used as data about real-life experiences rather than testing whether the questionnaire works.
WHY BE INVOLVED IN PHASE 3?
For Australians this is an important and exciting opportunity to create our own database of high-quality patient data about individuals’ experience of haemophilia, treatment and quality of life. We need data like this to understand current issues for our community; and also to represent these issues to governments or treatment and service funding bodies in a credible way. Without this data HFA has not had enough strong evidence to use in our advocacy for new treatments.
WHO CAN PARTICIPATE?
All adults (18 years or over) who live in Australia are invited to participate if they
- have haemophilia or carry the gene
- do NOT have a bleeding disorder (eg, partner/wife/husband, extended family, caregiver, friend of someone with a bleeding disorder).
HOW TO PARTICIPATE?
The questionnaire can be completed:
HOW MANY RESPONSES ARE NEEDED?
For meaningful high quality data we will need several hundred responses. This is to show differences between the experiences of people with mild, moderate, and severe haemophilia or who carry the gene.
So it will be important to for as many people as possible to participate!
Please note: In May 2019 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 website for PROBE - 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.
PHASE 3 EXTENSION STUDY
In Phase 3 the international investigators are studying the capacity of the system to continue to collect country data for large numbers of participants worldwide over time.
Another aspect of Phase 3 is to investigate modifying the infrastructure of the database system and data collection process to allow for longitudinal collection of PROBE data. This is so that individuals can complete the questionnaire at regular intervals, eg every 2 years, and to link their responses each time they do the survey to see if anything has changed for them. Some countries including Canada will be testing this during Phase 3. HFA will monitor this work to see how it will affect data collection and whether it would be appropriate to do the same in the future in Australia.
For more information about the PROBE study in Australia
or for print survey packs
, please contact Suzanne O'Callaghan at HFA:
T: 1800 807 173
To find out more about PROBE international
, visit the PROBE study website – www.probestudy.org
More about the PROBE study