Based in our Liverpool centre, the TONiC study recruits people nationally to complete questionnaires, and has already had an impact on MND research. For example, a very commonly used assessment in clinic and in trials is the ALS Functional Rating Scale (ALSFRS-R). While this is useful for understanding how MND is impacting someone in clinic, it is less useful in clinical trials because of the way it is built. The score is out of 48, and points are lost with loss of abilities, but a single point can mean different things, depending on what function was affected. That means two people with scores of say 38, can be very different. Recently, the TONiC team have used mathematical and statistical tools to fix that problem, which will help clinical trials in MND worldwide.
What we gain from this:
There are many assessments used in MND, and knowing which are the best is crucial if we want to develop new treatments that target the problems people face.