Autumn 2022- Patient and public involvement newsletter
In this edition we have PPI contributors’ sharing their experience of shaping research, announcements from the Virtual Biotech, information on how to get digital support and more!
Shaping research to develop biomarkers
Tony Vernon, a researcher at King’s College London, was planning a grant application and wanted to seek the views of people with lived experience of Parkinson’s on the topic of the research.
The aim of the research proposal was to search for brain imaging biomarkers — a change in the brain that can be measured with a specific form of neuroimaging- called positron emission tomography (PET) — which may be linked to the onset and progression of Parkinson’s
Olive and Rod are two of the PPI contributors who joined two focus groups with Tony to discuss his research. They have shared their experience of the focus groups as well as their advice for researchers planning to involve people with Parkinson’s in their work. Read the blog here:
Understanding experiences of early-stage Parkinson’s
Clinical trials require accurate tools to measure if a treatment is having an impact or not. However, current tools are limited and might not fully capture the symptoms that are most meaningful for people with early stages of the condition (for example people who have been recently diagnosed).
Parkinson’s UK has been working with pharmaceutical company UCB, the Parkinson’s Foundation in the US and 6 PPI contributors to investigate and develop more meaningful tools to assess outcomes in clinical trials for people with early-stage Parkinson’s. The PPI contributors have been involved throughout the project, including the study design and interpreting the results.
As part of the study the researchers interviewed people with early-stage Parkinson’s and their loved ones to find out about the experiences and symptoms that have the greatest impact on their everyday life. It is important that these symptoms are measured in future clinical trials testing therapies for people with early-stage Parkinson’s.
Recently the team published their findings from the interviews in the journal of Neurology and Therapy (the article is freely available and has a plain language summary). You can also read more about the research on our website:
We’ll be keeping you updated on more outcomes from this study in future newsletters.
Exciting updates from the Virtual Biotech
A new partnership with the Parkinson’s Foundation
In August we announced that Parkinson’s UK and Parkinson’s Foundation have formed a new partnership to speed up the search for new treatments.
Over the next 3 years, the US-based Parkinson’s Foundation will invest a minimum of $3m (over £2.4m) into the Parkinson’s Virtual Biotech, our international drug discovery and development programme. Find out more here.
Virtual Biotech Project announcements
We’ve invested in two new Virtual Biotech projects and are making progress with the planning for a potential new GDNF trial. We are:
- investing £2m in Enterin’s phase 2 clinical trial of the drug ENT-01, a potential treatment for Parkinson’s Dementia. Read more here.
- investing £2.9m in a phase 2 clinical trial of PXS-4728. This drug reduces inflammation and has the potential to slow the progression of Parkinson’s. Read more here
- moving into the next phase of planning for a potential new GDNF trial. Over the last two years we’ve been working with companies, researchers and members of the Parkinson’s community– including a number of you- to learn from the previous trial and plan a future clinical trial. In the next phase we are seeking investors to make a future trial possible. Read more here.
To learn more about the Virtual Biotech take a look at this blog written by our Research Communications Manager, Katherine Fletcher. She explains what the Virtual Biotech is, the important role it plays in Parkinson’s drug discovery and the projects being funded.
Increasing diversity in research: Ask the Expert
To fully understand how Parkinson’s develops, or impacts upon people’s lives, we need to involve and include people from across the Parkinson’s community. However research often does not include the voices of people from Black, Asian and Minority Ethnic backgrounds. This means that care and new treatments may not be serving everyone in the community.
The East London Parkinson’s Disease project is working with the local Bengali community and other under-represented groups in the region to address this need to include more people in Parkinson’s research.
Becky Jones, our Research Communications Officer, spoke to Tahrina Haque and Dr Alastair Noyce to hear about the parts they play in the project. Find out more:
Free online and digital skills support
Parkinson’s UK has partnered with AbilityNet to help people with Parkinson’s get online and boost their digital skills. This support is available across the UK.
The service is free and available to people with Parkinson’s and their carers.
The support available includes help with:
- setting up and using a new device, such as a tablet
- assistive technology to help make using tech easier with Parkinson’s
- fixing technical issues
For more information, including how to get support, visit our website.
You can also call AbilityNet’s helpline on 0800 048 7642 (freephone and minicom)
We really value your feedback on any aspect of our PPI programme, so please do get in touch anytime! Email us at researchinvolvement@parkinsons.org.uk
