Recruitment well underway for TONiC study

19 June 2020

Perron Institute Sulev Kõks and Carolyn Young TONiC for MSWA

Professor Sulev Kõks with Professor Carolyn Young (who designed and leads the study in the UK). Taken when she visited the Perron Institute last year.

The Perron Institute is continuing its recruitment of people with motor neurone disease (MND) for the pilot TONiC study, a project proudly supported by MSWA.

TONiC (Trajectories of Outcome in Neurological Conditions) is examining factors influencing the quality of life for people living with neurological conditions. It originated in the UK and is the largest study of its kind in the world.

The aim is to improve services for people living with conditions such as MND by identifying quality of life aspects that are important to them, but which may be underestimated by current service provision.

The WA TONiC study is led by Professor Sulev Kõks, head of Genetic Epidemiology Research at the Perron Institute and Murdoch University.

With the help of the Motor Neurone Disease Association of WA and MSWA the researchers are reaching out to potential participants, there has been a good response, with questionnaires sent out and some already completed and returned.

“We are pleased with the initial response from patients in the community so far,” Professor Sulev Kõks said.

“Feedback from participants in the pilot study will be used to tailor the questionnaire for Western Australian patients in the next stage of the project.”

CEO Marcus Stafford AM said he was pleased to be able to support this important research.

“Although this study is initially targeting MND, I know the team have the intention to broaden the research to include people with multiple sclerosis and possibly other neurological conditions,” said Mr Stafford.

“This is fantastic. It’s great to be able to fund research that looks into a debilitating disease such as MND, and the fact the research can be extended to a wider group only makes it that much more exciting. Watch this space.”

For more information on the study, please contact Leanne Jiang: or see the Perron Institute and MSWA Facebook pages.