Western Australia’s Perron Institute is contributing to an in-depth international study of factors influencing the quality of life for people with Parkinson’s disease.
With funding support from MSWA, people diagnosed with this neurodegenerative disorder are currently being recruited for the TONiC study (Trajectories of Outcome in Neurological Conditions).
TONiC, initiated in the UK, is one of the largest studies on quality of life in neurological conditions ever undertaken.
With the overall aim of improving patient-centred care and therapies, it is building a detailed picture of physical, psychological and social factors such as fatigue, pain, anxiety, self-esteem, social withdrawal and depression.
Professor Sulev Koks, who heads the Genetic Epidemiology Research group at the Perron Institute and Murdoch University, is leading the TONiC study in WA.
“Clinical symptoms and progression of neurological disorders such as Parkinson’s vary, and we know that variation in personal characteristics and social context can also have a significant influence,” Professor Koks said.
“Via a questionnaire, participants will be asked about the impact Parkinson’s disease has had on them, how they are dealing with the changes brought about by their illness and what they see as important in maintaining good quality of life,” he said.
“The study will also involve collecting and measuring clinical information by conducting in-person assessments.
“DNA studies via saliva sampling to contribute to understanding of genetic links to Parkinson’s disease is another element of the study.
“Overall, the aim is to translate the findings into practical applications, such as the development of models for improved patient forecasting and more personalised patient care.”
The WA TONiC team is also targeting other severe neurological disorders such as motor neurone disease.
For more information on the study or to get involved visit our website or email the TONiC Co-ordinator Lewis Singleton: lewis.singleton@perron.uwa.edu.au.