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Ensuring Diversity and Equity in Parkinson’s Disease Research and Care

Study Rationale: Parkinson’s disease (PD) is one of the most common neurodegenerative disorders across the world. PD has a negative impact on a person’s mobility and their ability to carry out everyday activities, including walking. Walking allows people with PD to take part in social activities and remain independent. However, there is a lack of measures that can be used to assess walking ability in research and healthcare. In this project, we will assess which digital mobility outcome (DMO) measures provide a reliable method for monitoring walking in people with PD.

Hypothesis: We hypothesize that identifying DMO measures that can be used to monitor walking during everyday activities will improve healthcare and quality of life for people with PD.

Study Design: Digital tools and DMO measures offer a new approach to accurately tracking an individuals’ walking activity. These assessments allow a person with PD to be monitored in their home and community. However, we don’t know which DMOs would be useful for PD research. In this project, we will work alongside the large, ongoing European-funded project, Mobilise-D. The aim of this qualitative project is to explore DMO measures from the perspective of people with PD. Listening to people with PD will ensure that digital measures and outcomes are relevant to their everyday lives and provide a meaningful measure of their experiences.

Impact on Diagnosis/Treatment of Parkinson’s disease: Taking into account the views of people with PD, we will ensure that digital measures are meaningful for people with PD and improve their treatment outcomes and quality of life.

Next Steps for Development: We will continue to explore ways to ensure that DMO measures are developed taking into account a diverse range of views so that they will serve, equitably, all of those in the PD community.


Researchers

  • Katie Brittain, PhD, MA, BSc

    Newcastle upon Tyne United Kingdom


  • Tova Gur Arich

    Israel Israel


  • Riona McArdle

    Newcastle upon Tyne United Kingdom


  • Lynn Rochester

    Newcastle upon Tyne United Kingdom


  • Alison Keogh, PhD, MSc, BSc

    Dublin Ireland


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