Parkinson’s disease: mapping the research and funding landscape
This project will map Parkinson’s research and funding across key themes, highlighting gaps to inform priorities and guide future research commissioning decisions
What are we trying to find out?
- What research evidence, has been published in the last five years in relation to prevention, diagnosis, treatment and care (including end-of-life care)?
- What research on these topics has been funded in the UK in the last 10 years?
- How well does this reflect the priorities of people living with the condition and those who support or advocate for them?
Why is this important?
The prevalence of Parkinson’s is rapidly increasing and while symptomatic treatments are available there is no cure. People living with Parkinson’s and related conditions need appropriate services, support and information, and better treatments to help manage their symptoms.
It is also vital to understand more about the possibilities for preventing or delaying onset. Research should be targeted in ways that address these needs. DHSC want to understand strengths and gaps in evidence and resource allocation so they can optimally target research funding opportunities.
How are we going to do it?
1. Understanding priorities. Consultation and priority-setting workshops with stakeholders and people with lived experience will initially explore perceived priorities for research. At each stage of the project, we will share what we have learned and explore how this relates to the priorities identified by stakeholders and people with lived experience.
2. Mapping the research evidence. We will search for studies and reviews published in the last five years in the areas of prevention, diagnosis, treatment and care, and map them to identify themes and topics. We will demonstrate where research effort is being directed and where gaps exist that could be addressed through targeted funding calls.
3. Mapping research funding. We will identify grants awarded for UK-based research during the past 10 years and any ongoing studies that have not yet reported. We will map the research topics and funds awarded against the same set of themes and priority topics used for the research evidence.
Who is involved?
Professor Linda Clare (University of Exeter) is leading the project with colleagues Dr Anthony Martyr (University of Exeter), Professor Matthew Prina (Newcastle University), Professor Jan Oyebode, Dr Catherine Quinn and Dr Maria Caulfield (University of Bradford), Professor Karen Windle (Ulster University) and Dr Catherine Charlwood (University of Exeter).
Professor Murna Downs and Dr John Hindle will be supporting the project.
How will we share our findings?
We will
• prepare visual maps of the evidence accompanied by descriptive reports.
• make recommendations to inform decisions about future allocation of funding for Parkinson’s research.
• Inform the wider Parkinson’s community about the research landscape and the efforts being made to address gaps in the research evidence.
Publications
Interim policy report on ‘Parkinson’s disease: mapping the current research funding landscape’
This is the first interim report from our project which focuses specifically on Parkinson’s disease and related conditions. This report details the first stage of the project: identifying all UK-based grants from the past 10 years and the respective amounts of funding allocated to our four themes of interest: prevention, diagnosis, treatment and care (including end-of-life care).
Interim policy report on ‘Parkinson’s disease: mapping the current research evidence landscape’
This is the second interim report from our project which focuses specifically on Parkinson's disease and other related conditions. This report identifies applied research literature in four themes: prevention, diagnosis, treatment, and care (including end-of-life) and evidence from published surveys about the research priorities of people living with the condition, their families and healthcare professionals.
Infographic outlining our 'Parkinson's disease: mapping the research landscape' project
This infographic provides an overview of the aims, methodology, and proposed outputs for our project 'Parkinson's disease: mapping the research landscape.'
Webinar 5: Research in palliative and end-of-life care for people with neurodegenerative conditions
In collaboration with the NIHR Palliative and End-of-life Care Policy Research Unit and NIHR ARC Palliative and End-of-Life Care National Leadership Forum, we co-hosted an online webinar discussing the topic of palliative and end-of-life care for people with neurodegenerative conditions.