Parkinson’s disease is the fastest-growing, neurodegenerative condition in the world. In Parkinson’s, a lack of a chemical called dopamine in the brain causes progressive problems, both of movement (slowness, tremor, stiffness) and of other functions (thinking, mood, bowel, bladder).
There are currently no treatments to slow or stop this condition, and this may be in part due to the fact that symptomatic treatments interfere with clinician assessments (i.e. the condition varies within and between days depending on the medications), so better ways of measuring disease progression are needed.
Current clinical measures of Parkinson’s progression may be masked by symptomatic treatments, and do not always address the priorities of people with Parkinson’s.
In trials which test agents that could potentially slow or stop the progression of the condition, it is crucial to use clinical measurement tools that are resistant to the effects of existing symptomatic treatments to decide whether the trialled agents are genuinely helpful or not.
In regards to the above, milestone-based outcome measures are events that occur in the condition which emerge despite symptomatic treatments and therefore mark a clear change in the severity of the disease.
Furthermore, measures which assess whether a clinical trial treatment is helpful or not must be relevant to people with Parkinson’s and reflect an impact on their function and quality of life.
This study aims to find out the actual milestones of disease progression in Parkinson’s, to help inform the development of a clinical tool which captures those milestones, for use in future clinical trials of treatments which may potentially slow or stop the progression of the disease.
This project is part of a PhD thesis, which will also distribute a survey to people with Parkinson’s to identify those features of Parkinson’s which are most relevant to people with the condition, to ensure that the designed clinical measures are not only robust, but also relevant to people with Parkinson’s.
The study will run for 3 years or until all research questions are answered (whichever happens first). The potential benefit of this study is that, if it succeeds to identify a robust, relevant clinical outcome measure of Parkinson’s, this will improve the quality of all studies which include it, potentially speeding up the discovery of treatments which could potentially slow or stop the progression of Parkinson’s.
