For a number of years, the United Kingdom has been conducting one of the largest studies into the quality of life of patients suffering from neurological conditions ever undertaken. The study is called TONiC: Trajectories of Outcomes in Neurological Conditions. It was envisioned by Professor Carolyn Young from the Walton Centre in Liverpool.
Motor neurone disease (MND) 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. Genetics likely also play a part in why disease progression can be different between patients, but more research into this is needed.
With the assistance of funding from MSWA, Western Australia will be the first international site to implement TONiC in the hope of improving care for patients, and identifying genetic contributors to disease. Professor Sulev Koks – Murdoch University and the Perron Institute – is leading TONiC WA. The TONiC WA study will collaborate with the UK team.
Collecting and measuring information about what it is like for patients living with neurological conditions, and identifying factors that influence patient quality of life (some of which may be underestimated), we can improve the expand and improve health services and support, as well as work towards more personalised care.
By investigating genetic factors that influence and contribute to MND, it is possible to eventually create targeted treatments and predict disease progression. An individual’s genetic makeup can also influence social, psychological and biological function, in turn affecting how MND may affect them. We would like to investigate this for the purpose of early intervention with care plans and treatments.