Spring 2024 — patient and public involvement newsletter
In this edition, we share updates from the Involvement Steering Group, opportunities for further training, information about new grants, and more!
An update from the Involvement Steering Group
The Involvement Steering Group (ISG) shapes the PPI programme at Parkinson’s UK. It is made up of people affected by Parkinson’s, researchers and Parkinson’s UK staff.
In March, the ISG met online and at the London office.
We reflected on 2023 and the learnings we could take from the year. We talked about the support we offer researchers with involving the Parkinson’s community.
One of the priorities of the ISG is to embed PPI early in the research career, and we kicked off work on this priority in the meeting. We’ll update you on what we’re doing in a future newsletter.
Find out more about The Involvement Steering Group, its current priorities and what we have achieved together in the blog below
New Parkinson’s UK funded research
We’re pleased to share that we have awarded funding of nearly £450,000 for research exploring new ways to manage Parkinson’s symptoms.
- Professor Stephen Jackson from the University of Nottingham is investigating a wrist-worn device to help control tremor
- Dr Paul Shotbolt from King’s College London is exploring the effect of Deep Brain Stimulation on impulsive behaviours in Parkinson’s
- Dr Julie Jones from Robert Gordon University, Glasgow is using augmented reality to improve mobility in Parkinson’s
- Dr Fiona French from London Metropolitan University is managing facial masking using a virtual reality device
To find out more about these projects, follow the link to the Parkinson’s UK website below.
We’ve also awarded funding of nearly £600,000 to support the next leaders in Parkinson’s research.
- Dr Sophie Farrow from the University of Oxford is exploring how and why some changes in certain genes can increase a person’s risk of Parkinson’s
- Dr Eduardo de Pablo-Fernandez from Queen Mary, University of London is looking to help find a way to detect Parkinson’s earlier
To find out more about these projects we have funded, follow the links to the Parkinson’s UK website below
The researchers worked with members of the Parkinson’s community (including some of you) to shape their applications. We’ll keep you updated on any future opportunities to be involved.
Training on medicines research and development
EUPATI is a training programme that aims to help PPI contributors understand and meaningfully contribute to medicines research and development, and to improve the availability of medical information for patients and other stakeholders.
Marc, a PPI contributor, patient advocate and member of the Dundee Research Interest Group, went through the Patient Expert Training Programme during the pandemic. He explains that:
EUPATI has opened a totally new world for me. Hundreds, no thousands of people working day and night in patient engagement, involvement, advocacy, expert witness etc. EUPATI training gave me the basic tools to enter the conversations about medicine development, trials, research etc etc. I have met and continue to meet wonderful people affected by or living with an illness. Some of them now being good friends even though we might only very occasionally be able to meet. Becoming a EUPATI Fellow has been empowering, intense, sometimes hard work but always hugely rewarding.
He shares his story and talks about his experience of the training programme on the EUPATI website.
You can take part in the individual modules which are free, or cost 8€ (approximately £6.84) if you would like to receive a certificate at the end.
If you’d like to do some further training, take a look at the courses available in the EUPATI course catalogue below.
An update on GDNF
The research team at Parkinson’s UK would like to say a massive thank you to all the volunteers who have supported the charity to pursue a new trial studying the effects of a growth factor called GDNF.
Since 2021, we’ve been working with the GDNF Involvement Advisory Board (IAB), which includes people with Parkinson’s (some of whom took part in the original GDNF study over 10 years ago) to try and make a new trial of GDNF happen.
The GDNF IAB have been committed champions for the need for further investigation of the potential of this treatment. Unfortunately, we have been unable to find a partner to help us take this therapy forward. As a result, the charity has decided to stop its active pursuit of a new trial.
While this project on device-delivering GDNF may have reached the end of the road, there are new approaches to delivering GDNF coming through being led by companies that can take this research forward.
We’ll continue to do everything we can to share the knowledge and collective insights that the GDNF IAB have brought to the table over the last 3 years. We have plans to publish the group’s work in scientific journals to help support future neurosurgical trials.
To read more about the work on GDNF and the recent decision to stop our active pursuit of a new trial, you can read more on the Parkinson’s UK website below.
PPI Contributor survey
Thank you to everyone who completed the PPI contributor survey at the start of the year!
We received 58 responses and we really appreciate the time you took to share your experiences and to help us improve how we support you to be involved in research.
We have just finished analysing the results and will be sharing them with the Involvement Steering Group in order to identify potential actions at our next meeting. We’ll share an update in the summer newsletter on the findings and what we will be doing next.
If you’d like to share some PPI that you’ve been involved with, or if you’d like to give feedback on any aspect of our PPI programme, please get in touch anytime!
Email us at researchinvolvement@parkinsons.org.uk
