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Phase 1

HFA participated in Phase 1 of the PROBE study.

Some of you were involved in distributing and completing the surveys for Phase 1. Thank you for your support! We needed 35-50 completed surveys by the end of 2015 to have enough data to be analysed, and by Christmas had received 39 surveys, which was an amazing effort in a very short few weeks!

  • Seeking ethics approval via Monash University, Melbourne
  • Testing how clear the questions are
  • Testing the methodology and the statistics that could be gained from the results.

Our thanks to Dr Liz Bishop from the Michael Kirby Centre for Public Health and Human Rights at Monash University for her support of the ethics process.

Phase 1 tested a print survey on haemophilia only. Some Australian community members with haemophilia and carers or parents of children with haemophilia completed the draft questionnaire and gave feedback on the questions and instructions. The completed surveys and question feedback sheets were then scanned and transferred electronically to the PROBE research team at McMaster University for analysis.


HFA received a report on the Australian results in January 2016 and was invited to participate in an international meeting where the worldwide results were discussed:

  • More than 700 surveys were completed by 15 countries
  • Results demonstrated validity and that the research methodology was robust
  • Phase 1 data is useful for understanding how to use the potential results but cannot be used for representation on health issues at this point – we need to wait for phase 3
  • Australian feedback on questions was put in a spreadsheet and each comment was addressed by the research team leaders
  • As a result of global feedback, new questions will be added in Phase 2 for women who carry the gene
  • Some other small changes were made to the Australian version of the survey
  • For good comparable data, in future Australia needs to recruit more people with moderate haemophilia to complete the survey.

A poster about Phase 1 was presented at the European Association for Haemophilia and Allied Disorders (EAHAD) Congress in Sweden in February 2016 and very well received.

An article on Phase 1 was also published in the journal Pilot and Feasibility Studies in 2018. Visit the PROBE study website to read more.

If you have any questions about the PROBE survey, please contact Suzanne at HFA on 1800 807 173 or socallaghan@haemophilia.org.au


Date last reviewed: 9 November 2018

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