An important clinical research project, co-led by Dr Alison Keogh in the School of Medicine, Trinity College Dublin, has recently won an award. The award is funded through the Michael J Fox Foundation For Parkinson’s Research. The following collaborators will also be involved with the research: Newcastle University; University of Leuven; University of Kiel; University of Erlangen; and Tel Aviv Sourasky Medical Center.
This award will enable the generation of new knowledge relating to under-served groups in PD with this specific project, with the longer term impact of generating meaningful results also for future work in this area.
Michael J Fox Foundation Project details:
Title of Research Project
Measuring what matters – in whom it matters – ensuring diversity and equity in Parkinson’s disease research and care
Name, Title of Lead PI
- Dr Alison Keogh, Assistant Professor (Clinical Medicine Tallaght) (Co-PI)
- Prof Katie Brittain, Prof (Applied Health Research & Ageing in the Population Health Science, Newcastle University)
- Prof Lynn Rochester Prof (Human Movement Science, Newcastle University)
Parkinson’s disease (PD) is one of the most common neurodegenerative disorders across the world. People living with PD significantly impacts a person’s mobility and their ability to carry out everyday activities. There is however a notable lack of walking outcome measures that are being adopted consistently in research and healthcare practice. One way of capturing mobility is through digital tools, specifically digital mobility outcomes (DMOs) which allow a person with PD to be monitored in real-world contexts. The development and validation of DMOs need to consider the perspective of the person living with PD to ensure that these outcomes fit their everyday context. The aim of this project is to explore DMOs from the perspective of the person living with PD to make sure that they are meaningful in what they measure, and are developed taking into account a diverse range of views to ensure they are inclusive.
This research will add important evidence to strengthen ongoing work to qualify DMOs for use within clinical trials. Findings will add additional supportive qualitative data to inform the FDA letter of intent for the development of DMOs in PD. Importantly, this work will support diverse and inclusive PD research and healthcare. It will further provide guidance on methods that aid robust implementation in trials which, in turn, will facilitate more generalizable findings. Our patient and public consultant also felt that developing a toll that is meaningful to people with PD could have the potential to increase a person’s activity levels by encouraging them to self-monitor and engage in physical activities. This would have a positive impact on a person’s overall health and wellbeing.
Speaking about the award, Dr Keogh said:
“I’m most excited about the focus on diversity in this project. We want to ensure that we reach under-served groups in PD. Understanding this, and how to engage them in research, may be very meaningful for future work as well as the results of this specific project”.