Leader from pioneering UK study shares insights

A pioneering study to identify factors that affect the quality of life for people with degenerative neurological disorders such as motor neurone disease and multiple sclerosis was the subject of a recent presentation at the Perron Institute.

Professor Carolyn Young, a Consultant Neurologist at the Walton Centre in Liverpool, UK is the designer and leader of this expansive study called Trajectories of Outcome in Neurological Conditions (TONiC).

TONiC is one of the largest studies on quality of life in neurological conditions ever undertaken. It is hoped that the size of the study and the fact that it combines biological, psychological and social data will contribute to the development of more targeted treatments for people living with neurological conditions.

“People diagnosed and treated for such diseases experience physical changes in different ways and at different rates,” Professor Young said. “There is variation and complexity also in how individuals cope with disease progression.

“Personal characteristics and social context have a significant influence on quality of the life from a patient’s viewpoint. By collecting and measuring information from patients, health professionals and carers, the aim is to create models for use in providing more personalised care and improving patient forecasting.”

Currently, the TONiC study is being conducted in the UK and Ireland. With the help of $125,000 in funding from MSWA, Perth is set to become a site for this ground-breaking research. This collaborative work examining factors influencing quality of life in conditions such as Motor Neurone Disease, Multiple Sclerosis and Parkinson’s will be led by Murdoch University neuroscientist, Professor Sulev Koks, who is based at the Perron Institute.