About the project and the involvement opportunity
Edavarone is a medication known to slow the progression of Motor Neurone Disease (MND) but can only be given via IV Infusion, or as a liquid which is swallowed or fed through a feeding tube. This project aims to simplify Edaravone administration for MND patients by creating a table that is designed to disintegrate in the mouth, the research team would like to understand the difficulties MND patients face with current administration methods. Your input will guide the team towards creating a tablet that will ensure a pleasant patient experience during medication administration.
About the position
The research team would like to meet, preferably face to face, with people with a lived experience of MND or their carers to talk about their experiences living with MND and the administration of their medications taken, this will assist with the development and manufacture of an oral tablet for Edaravone, a commonly used medication. Researchers want to ensure the final product is a pleasant experience for patients by having consumer involved throughout the process.
What am I expected to do?
Share your lived experience of MND or caring for someone with MND to give the research team insight into current medication therapies and hopes for future therapies.
What skills or experience do I need?
Have a lived experience of MND or caring for someone with MND.
How long am I expected to be involved?
The project is for 1 year, we would meet approximately 4 times in this period of time.
Where will meetings be held?
Wherever is most comfortable within the Perth metro area.
What support is offered?
$37.50 per hour honorarium. Training and support is offered by the Consumer and Community Involvement Program.
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