A study funded by MSWA is examining factors influencing quality of life for people living with motor neurone disease (MND).
The project, TONiC (Trajectories of Outcome in Neurological Conditions), originated in the UK and is the largest study of its kind in the world.
Professor Sulev Koks, who heads the Genetic Epidemiology Research group at the Perron Institute and Murdoch University, is leading the study in Western Australia. The current research is investigating MND with the intent of expanding to other neurological conditions.
The aim is to improve services and treatment options for people living with neurological conditions including MND. The study uses a self-reported quality of life assessment, in the form of a questionnaire, to better understand lived experiences and translate the findings into practical real-world applications. The WA TONiC team is also gathering genomic data (including DNA) to try and find genetic causes of MND.
“Our collaborative research focus is to understand what causes this disease and ultimately develop potential treatments,” Professor Sulev Koks said.
In collaboration with MSWA and the Motor Neurone Disease Association of WA, the WA TONiC team is seeking new participants who are living with MND.
“We are actively recruiting people with motor neurone disease and looking for as many people as possible to participate in the study,” Professor Koks said.
“The first participants from the pilot study are about to complete their first follow-up questionnaire. This is an exciting milestone that will provide our first set of longitudinal data.
“Initial feedback from participants in the pilot study has helped us adapt the questionnaire for patients in the next phase of the project.
“There is a focus on factors that could potentially inform clinical care and service design.”
For more information on the study or to get involved, please email Lewis: lewis.singleton@perron.uwa.edu.au.
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