Inherited cardiomyopathy and arrhythmia research

About the Project and the Involvement Opportunity

Our research aims to predict disease onset, prevent cardiac events through a deeper understanding of arrhythmia, and identify new targets for therapies that change the trajectory of disease. This work spans pre-clinical laboratory research alongside the Australian-first clinical HCM Biomarker Study.

Community partners are people with lived experience who work alongside our researchers to ensure our work is grounded in the needs of patients and families. By registering your interest, you join a pool that we draw on for a range of involvement opportunities as they arise.

We welcome people who:

Live with hypertrophic cardiomyopathy (HCM), a different inherited cardiomyopathy, or arrhythmia, or care for or are related to someone who does
Want to help shape research so it better serves the community it aims to support
Are open to hearing perspectives different from their own in a respectful and supportive environment
Are comfortable sharing their own experiences in group discussions
Are able to join online video meetings with their camera turned on

About the Position

During the 5 years of this research project there will be various ways to be involved:

Micro Community Conversations: Small group discussions (4–6 people, ~2 hours) on a specific topic
Consumer Advisory Group: Ongoing input through quarterly meetings
Surveys and short consultations: Sharing perspectives on specific questions

Other activities may emerge as the community partnership develops. You choose which opportunities to take part in. Registering your interest is not a commitment to any single activity.

What Am I Expected to Do?

Review documents (e.g., grant applications, consent forms, surveys)
Share your lived experience and insights
Optional: Participate in public presentations or forums
Help design participant recruitment strategies

What Skills or Experience Do I Need?

Lived experience is the only skill required, no research experience required.

How Long Am I Expected to Be Involved?

The project is for 5 years, the amount of your involvement is up to you, you can attend one off event or be involved on a regular basis.

Where Will Meetings Be Held?

A mix of in-person and online, depending on consumer preference

What Support Is Offered?

An honorarium of $50.00 per hour is available for consumer involvement activities in line with CCIProgram guidelines
Training and support provided by the CCIProgram or relevant support body.

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