Consumer and Patient Preferences Research partnership project (CaPPRe)

Consumer and Patient Preferences Research partnership project (CaPPRe)

Australian Families 4 Genomics are passionate about improving treatment options and accelerating research for children and young people with cancer. We are advocates for offering all children and young people with cancer upfront genome sequencing with the option to donate their genome and health information to a research library that serves the greater good. The library is called the Australian Omics Library and makes it easy for young people and families and cancer clinicians to access this important information when they need it. It will also accelerate research by making donated data more widely available for research than individual projects or trials.

The Australian Omics Library will be the first of its kind in Australia and it is important that the preferences of young people and families for the storage and management of donated data are understood. Working with the Consumer and Patient Preference Research group we have designed a survey to capture what matters to young people and families to inform how the Australian Omics Library stores and manages donated information.

The survey is open to anyone diagnosed with cancer before 25 years and their parents/guardians.

If you would like to tell us what matters to you by participating in the survey, email countusin@australianfamilies4genomics.org

The survey takes around 15 minutes and completed surveys will go into a draw to win one of five, $100 Prezee e-gift vouchers.