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Improving personalised healthcare for people with Parkinson’s Disease

About the project and the involvement opportunity

Parkinson’s disease (PD) isn’t the same for every patient. Patients will progress at different rates, or experience certain symptoms that affect their day-to-day life more than others. These differences can change the way people cope with disease progression, as can a patient’s personal characteristics or social context. It is also likely that genetics play a part in disease progression, which can again differ between patients. More research is needed in this area.

Researchers involved with the TONiC (Trajectories of Outcomes in Neurological Conditions) project are investigating the quality of life of individuals with a lived experience of Parkinson’s disease (PD) and possible genetic factors that contribute to the disease. The collection of this information will hopefully serve to expand and improve health services for individuals with PD, ultimately promoting the need for personal and individualised care for people living with PD.

About the position

The TONiC project would like to form a Consumer Reference Group consisting of people with a lived experience of Parkinson’s disease, and/or carers of individuals with a lived experience of Parkinson’s disease. The purpose of this group would be to inform the project, ensuring that the consumer’s voice is heard and represented throughout the project.

What am I expected to do?

Members of the TONiC Consumer Reference Group would help guide and support the research team with reviewing project documents, informing plain language summaries, providing ideas and feedback around future research priorities and assist in the sharing of findings across the wider community.

What skills or experience do I need?

  • Experience living with Parkinson’s disease
  • Carer or family member of a person with Parkinson’s disease

How long am I expected to be involved?

Consumer Reference Group members are typically appointed for 1 year, and/or the duration of the project (no longer than 2 years).

Where will meetings be held?

Online via Microsoft Teams and/or Zoom

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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