What are we recruiting for?
The Kids Research Institute Australia and Rare Voices Australia (RVA), the national peak body for Australians living with a rare disease, are conducting a Rare Disease Research Priority Setting Partnership project. This project aims to identify and prioritise the Top 10 Most Important Unanswered Research Questions for the Future of Rare Disease Research in Australia.
Who are we recruiting?
- People living with a rare disease
- Parents or carers of people living with a rare disease
- Health professionals working with people living with rare diseases
What does the project involve?
The project is taking place over the next twelve months and involves three stages:
Stage One: Online survey that asks you about your most important research questions or concerns about rare disease – live now!
Stage Two: Follow-up online survey based on responses to previous survey
Stage Three: Online consensus workshop where participants will discuss and prioritise the Top 10 Most Important Unanswered Research Questions for the Future of Rare Disease Research in Australia.
How do I get involved?
Stage One has commenced! This involves a 5-10 minute anonymous online survey that asks you about your most important research questions or concerns about rare disease.
Please click here to complete the survey.
This project is funded by Rare Voices Australia.
If you have any questions about the survey or project, please get in touch with us at RareDiseaseResearchPriorities@thekids.org.au