Spring 2021 newsletter
Welcome to the first edition of the Parkinson’s UK patient and public involvement newsletter for 2021. In this edition we have some team changes, new grants and some opportunities to have your say to share with you.
Team changes
The Research Involvement team at Parkinson’s UK is currently made up of myself (Annie Amjad) and Natasha Ratcliffe. We work closely with an Involvement Steering Group, made up of people affected by Parkinson’s and researchers who prioritise all aspects of our PPI programme.
I’m going to be leaving Parkinson’s UK at the end of March to take on a new role managing the public involvement programme at the MS Society. I wanted to thank you all for being such a great bunch of volunteers and making my role so interesting and enjoyable. It has been a pleasure to work with you all!
We have started the process for recruiting someone new for my role, so no doubt you’ll hear from them as soon as they have started in a few months’ time.
In the meantime, Natasha will continue to share PPI opportunities as they come to us and support you in your role.
Share your experience of being a PPI contributor
Every two years, we ask you about your experience of being a PPI contributor with Parkinson’s UK. Your responses help us to improve all aspects of our PPI programme. For example, based on your responses in 2019, we introduced a new refresher training module and changed the format of our emails.
We’d be so grateful if you could fill in this years survey so that we can continue to understand what aspects of the role you enjoy and how we can improve.
It will take about 20 minutes to complete — you can start and save it to come back to later if you’d prefer. The survey will remain open until Friday 30 April 2021.
We will share the findings from this survey and how we are going to act on them with you in the Summer edition of our PPI newsletter (this will be completely anonymous).
Refresher module
I mentioned above that we developed an extra training module based on your feedback. The module is designed to recap the first three home-based training modules that you complete when you first become a PPI contributor.
You can watch the refresher module here:
Once you’ve watched the video, let us know by emailing us at researchinvolvement@parkinsons.org.uk and we’ll send you the activity to complete.
New Parkinson’s UK research
At the beginning of the year, we awarded 10 new grants — 8 to researchers who applied in our ‘project grant’ round and 2 to researchers who applied to our ‘non-drug approaches’ round.
Many of you were involved in helping these researchers to write their plain English summaries for the applications — so thank you for that!
Project grants
- 5 are basic science studies aiming to understand more about the causes of Parkinson’s and how these might be addressed.
- 3 are clinical projects looking to address three different symptoms of Parkinson’s — balance and gait, pain and freezing.
Non-drug approaches grants
- One project is looking to develop a wearable device for the management of drooling and other symptoms.
- The other project will develop and test a new speech and language therapy programme for communication problems in Parkinson’s.
New Virtual Biotech project
We’re investing up to £1.2m into research in partnership with the University of Sheffield, which aims to develop a drug to protect dopamine-producing brain cells by targeting the mitochondria — the energy producers of our cells.
Dr Heather Mortiboys has identified molecules with excellent mitochondrial restoration properties. Over the next 12 months, the team will develop and test these molecules in cells from people with Parkinson’s. If this is successful, the molecules will then move forward into further testing in animal models before moving into clinical trials in people with Parkinson’s.
“We’re delighted to continue our work with Parkinson’s UK to refine these promising molecules to develop a treatment that could stop Parkinson’s in its tracks. The team has identified not only molecules which can restore mitochondrial function in dopaminergic neurons from people with Parkinson’s, but also a novel mechanism by which they do this.”
We’ll have opportunities to get involved in shaping these grants to share with you all soon, so keep an eye out for these.
Adapting clinical trials in the pandemic
When the COVID pandemic began in the UK in March 2020, many non-COVID research studies were put on hold. It quickly became clear that to restart research, adaptations would need to be made so that studies could resume in a way that was safe for all involved.
We know that people affected by Parkinson’s have a vital role to play in designing clinical trials. We’ve been supporting research teams to understand what people affected by Parkinson’s want from research during this time, and how studies can be adapted to make participation safe and convenient.
Natasha has written a blog about how researchers and people affected by Parkinson’s have been working together to adapt clinical trials. You can read the blog here:
Have your say on the government’s disability strategy
The Government wants to understand the barriers disabled people face in their everyday lives, so they know which areas they need to focus on in their new disability strategy, which will be launched later this year.
We want as many people with Parkinson’s and carers to complete the survey and share their views, so that they are considered as the Government plans its future disability strategy.
You can complete the survey here. It closes on 23 April 2021.
You can find more information on the homepage here, or get in touch with Laura Cockram, our Head of Policy and Campaigning if you have any questions.
That’s all from me! Thanks again for being such a wonderful group of volunteers. All of you have contributed to improving Parkinson’s research and making sure it’s focused on what matters most to the Parkinson’s community.
We really value your feedback on any aspect of our PPI programme, so please do get in touch anytime! Reach us at researchinvolvement@parkinsons.org.uk
