Rare Voices Australia (RVA) invited leaders of RVA Partner groups/organisations to attend a webinar in November 2023 about a new flagship research study on preferences for genomic testing.
As the national peak body for Australians living with a rare disease, RVA is working in partnership with researchers, decision-makers, and other consumer representatives on a co-designed research study regarding preferences for genomic testing.
Aim of the research
To explore the priorities and concerns of people impacted by rare diseases when it comes to genomic testing options.
How the results from this research will be used
The results from this study will be used to help develop a policy tool that groups such as the Medical Services Advisory Committee (MSAC) can use when making future public funding decisions about genomic testing (for example, recommending that a new genomic test be added to the Medicare Benefits Schedule).
- Dr Falak Helwani – Rare Voices Australia: Host and Q&A Moderator
- Nicole Millis – Rare Voices Australia
- Dr Simon Fifer – Community and Patient Preference Research (CaPPRe)
- Maya Joshi – Community and Patient Preference Research (CaPPRe)