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Patient treatment preferences survey: Phase-2 starting: Act today if you are metastatic


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Jim Marshall (not a doctor) said ...

Last year, Wendy Winnall and Miranda Xhilaga (both of the Prostate Cancer Foundation of Australia (PCFA)) called for volunteers to help design a patient preference interview for men with metastatic prostate cancer. The idea is to understand what men consider important when choosing treatments.

Quite a few of our members volunteered to help with the pilot, and now the project is ready for the larger phase-2 study.

All men with metastatic prostate cancer are invited to take part in this next stage (including those who were part of the pilot).

Contact details are in the message from Miranda below, or you can go straight to the 20-minute online survey at:

http://bit.do/PC-research

... end Jim

 

Dear members,

 

Please find below the details of a study that is currently recruiting participants. Participation in this study is entirely voluntary. Prostate Cancer Foundation of Australia are part of the team that are conducting this study.

Study title

Advanced Prostate Cancer Patient Value Mapping Study

Lead investigator

Dr Simon Fifer, from Community and Patient Preference Research Pty Ltd, Sydney, NSW, and Dr Wendy Winnall, Prostate Cancer Foundation of Australia. 

Summary of project

Community and Patient Preference Research (CaPPRe) is working with Prostate Cancer Foundation of Australia to conduct research with men who have metastatic prostate cancer. This study is sponsored by CaPPRe with funding support from Janssen-Cilag Australia Pty Ltd. Janssen will not participate in, or influence the outcomes of, this study.

CaPPRe are specialists in conducting research to determine people’s preferences. We are looking at ways to gather a large number of views from people on the benefits and risks of various treatment options. This type of research is called ‘Patient Preference Research’. It may help those who assess new treatment options to understand how people value certain benefits and risks of drugs. CaPPRe are specialists in conducting patient preference research, in this case what people value, need and expect in the treatment of metastatic prostate cancer.

We invite you to participate in the research, which will involve a 20-minute online survey.

Your participation will be valuable in improving the understanding of what is important to you in the care of your prostate cancer and helping make better treatments available in Australia for prostate cancer patients. We also intend to publish the results so that others can learn from them.

Ethics approval

Ethics approval has been granted through Bellberry Human Research Ethics Committee.

Who is this study for?

You may be eligible for this study if you are:

  • 18 years old or over, and
  • Have been diagnosed with metastatic prostate cancer, and
  • Have access to the internet

If you are interested in this study:

There is no obligation for you to be involved in this research. If you decide to participate in the research you may withdraw at any time.

If you are interested in participating in the 20-minute online survey, please click on the link below:

http://bit.do/PC-research

 

If you have a specific question about the research or require any additional information:

Please email your query to info@cappre.com.au and enter “query about prostate cancer research” in the email subject heading. You can also contact CaPPRe on 02 8315 2148 or PCFA at wendy.winnall@pcfa.org.au or on 03 9948 2073.

CaPPRe respects your privacy. Your details will not be forwarded to any other parties; nor will you be contacted by CaPPRe for anything other than this research project unless you choose to be. All responses are treated with the strictest confidentiality and any identifiable data will be accessed only by CaPPRe staff and stored in a highly encrypted, secure server in professional data security offices located in Brisbane. The report of the research findings that will be provided to PCFA will not identify any individual person. CaPPRe complies with the Privacy Act 1988 (Cth) and the Australian Privacy Principles in relation to the collection and disclosure of information.

 

Miranda Xhilaga
  |  
Director ‑ Research Programs
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