PROBE Study update

Some of you participated in the PROBE study phase 2 between September 2016 and February 2017 and we would like to thank you for taking the time to complete the survey.

The multi-national PROBE (Patient Reported Outcomes Burdens and Experiences) Study aims to give HFA and other haemophilia organisations around the world access to good quality data about the treatment and health experiences of people with bleeding disorders.

HFA is working with the global PROBE team of patient and academic investigators, including Mark Skinner, former WFH President, and Assoc Prof Alfonso Iorio from McMaster University, Canada, to test the research methodology in haemophilia and allow people with haemophilia to report their haemophilia severity, treatment history and the impact of haemophilia on their daily life.

PHASE 2

Phase 2 of the PROBE study aimed to test:

• Whether the survey questions capture consistent responses if the survey is repeated twice in the same Australian community
• The stability of the online survey.

Australia joined a number of other countries in the Phase 2 reproducibility test, including Canada, Nigeria, Poland, United States and Vietnam.

Assoc Prof Alfonso Iorio’s research team at McMaster University, Canada is currently analysing the results from Phase 2. We will report the results in National Haemophilia and on the HFA website later this year.

PHASE 3

Phase 3 of the PROBE study is the final stage of rolling out the study to people with haemophilia around the world, country by country. The work on Phase 3 will commence once Phase 2 has been completed and analysed. Watch this space!