parkinson's uk research support network

For Parkinson's researchers

If you're a Parkinson's researcher, you can find useful information here about research grants, as well as other support we provide including recruiting participants and requesting brain tissue.

Research funding

Research grants - find a grant that meets your needs, discover our priority areas and read information for applicants and grantholders. Our research grants are available to both clinical and lab-based Parkinson's researchers and support every stage of their careers.
Aligning Science Across Parkinson’s (ASAP) - fostering collaboration and resources to better understand the underlying causes of Parkinson’s.
The Parkinson's Virtual Biotech - our drug development arm aims to invest in projects and companies that are driving towards new treatments with the potential to transform lives. We're looking to become a partner on projects at the drug discovery, preclinical and early clinical stages.

Open funding calls

You can now discover a range of Parkinson's funding opportunities that are currently open for applications and sign up to receive the latest alerts.

Resources and support

We offer a range of support and resources to Parkinson’s researchers. And you don't need a grant from us to benefit.

Support for your research - from participant recruitment to involvement, letters of support to researcher events. Whatever your area of research, we're here to support you.
Request a research speaker - If you're holding an event for people with Parkinson's you can request a member of the Parkinson's UK Research team to speak. Our communications team can talk about the latest research news, the benefits of taking part in research trials and how people with Parkinson's are shaping the future of research. We will also share how to get connected with research through the Research Support Network .

Sign up to our research newsletter

Be the first to find out about funding, events, news and opportunities in the world of research by signing up to Synapse, our newsletter for the Parkinson's research community.

The Parkinson's Virtual Biotech

The Parkinson’s Virtual Biotech is the drug development arm of Parkinson’s UK.

If your project is at the drug discovery or clinical development stage, we could help take it to the next level.

We partner with organisations from around the globe to accelerate progress towards new and better treatments.

Our flexible approach and in-house expertise make us the ideal partner.

Research Support Network

The Parkinson’s Research Support Network is run by Parkinson’s UK and brings together people driven to find better treatments and a cure for Parkinson’s.

Get connected

Our Research Support Network connects you to all the latest Parkinson’s research news and opportunities.

Everyone is welcome, from researchers to people with Parkinson’s – all you need is an email address to get started.

You will receive PUK’s monthly Research Roundup , as well as opportunities to take part and have a say in research in your local area.

The Guildford and South Surrey Branch is affiliated to Parkinson’s UK and is run by volunteers to support those living in the Guildford and South Surrey area who have Parkinson’s and their families and friends.

Parkinson’s UK is the operating name of the Parkinson’s Disease Society of the United Kingdom, a registered charity in England and Wales (258197) and in Scotland (SC037554). Registered office: 215 Vauxhall Bridge Road, London, SW1V 1EJ.

Research for Parkinson’s Disease

Unlike any other Parkinson’s charity in the UK, Parkinson’s Care and Support UK funds non-pharmaceutical research into managing, reversing, reducing and curing Parkinson’s Disease. This involves looking at what we put into the body and how this can affect someone’s lived experience of Parkinson’s.

With little advancement with prescription drugs over the past 50 years coupled with unpleasant side effects, PCSUK believes that our focus should be on tackling Parkinson’s with natural remedies and therapies.

We have entered an era where people are more conscious now more than ever about the effects that natural remedies have on their bodies. From eating well and having a gut-friendly lifestyle to natural supplements, research surrounding this topic has been increasingly popular and hopeful. This is an exciting and ground-breaking area of Parkinson’s research in which we will lead the way.

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What’s in the research pipeline?

Dr Kevin McFarthing is Clinical Trials Highlights editor of the Journal of Parkinson's Disease. That journal’s most-read article of 2022 is Kevin’s regular update on the clinical trials pipeline for promising drug therapies. Unlike many academic articles it’s open-access and so anybody can read it on the journal website at this link .

The importance of this work was highlighted in this recent editorial by Prof Bas Bloem and Dr Lorraine Kalia .

Informative articles by our own members

We are beginning to build a collection of research and information material written by Branch members. We hope you will find it useful.

From dogfish to Gila monsters - Parkinson’s treatments of tomorrow

Our Research Officer, Dr Kevin McFarthing, gave a presentation at our March 2020 branch meeting with an overview of the search for new treatments for Parkinson’s. Branch members also learnt the collective noun for groups of dogfish and lizards. You can find a copy of the slides here .

What goes wrong in Parkinson’s?

This short, easy-to-read article about the mechanisms in our brain cells that are affected by Parkinson’s was written by our Research Officer, Dr Kevin McFarthing, in April 2018. If you're unfamiliar with some of the scientific jargon and ideas that we often hear about when discussing Parkinson’s research and treatments, this will help! Download the article as a PDF document here, or preview it in your web browser using this link .

Regularly updated The Hope List: Parkinson’s Therapies in Development

Kevin also maintains a document listing all the drugs and other therapies that are being developed or in trial, along with some whose development has been abandoned. Download the Excel spreadsheet here, or preview it in your web browser using this link . Some of the information in Kevin's spreadsheet is taken from the PDTrialTracker.info website , which you may also find interesting.

Kevin presented some of his work on The Hope List at our Branch meeting in January 2019. His talk is available as a video screencast at this link .

Keeping up with Parkinson’s research

Anyone who's tried to stay up-to-date with research in the Parkinson’s field will know that there is a huge amount of information appearing every week, and unless you're an active researcher it's difficult to follow it all. There are many blogs, digests and other resources available on the web, but their quality is hard to assess and some have a very limited focus. We would like to suggest some resources that we know to be trustworthy and broad in scope:

Science of Parkinson’s blog (open in new tab)

Dr Simon Stott, a former Cambridge University Parkinson’s researcher who is now Deputy Director of Research at Cure Parkinson’s Trust , maintains a fascinating, wide-ranging and brilliantly written blog. He updates it two or three times a week. Some of the articles are quite technical, but they're always explained clearly and with humour. Highly recommended.

You can go straight to Simon's blog at this link . However, if you're new to it, his review of 2019 research may be a good starting point.

To receive regular updates on Simon's blog, you will need to have a Wordpress account so that you can "follow" it. If you don't want to sign up with Wordpress, you can simply check back and look at the blog every week or so – or, if you're a Twitter user, you can follow his account @ScienceofPD where he highlights new articles.

Parkinson’s UK Research Support Network

The "Parky RSN" provides regular email updates on research and how you can get involved. You can find out more by following this link .

The research blog of Parkinson’s UK (open in new tab)

Our parent charity Parkinson’s UK always takes huge care to provide accurate, up-to-date and clear information. Claire Bale, Beckie Port and other research staff at the charity maintain an interesting collection of material, with new items added every few days or so, at their research blog which you can find at this link . It covers current developments in research, but also includes material on patient experiences, living well with Parkinson’s, and background articles of general interest.

If you sign up for an account with the Medium.com website, you can "follow" Parkinson’s UK to get regular updates on new content.

The Oxford Parkinson’s Disease Centre

We are very lucky to have a world-renowned centre for Parkinson’s research on our doorstep in Oxford, the OPDC. Led by Professors Michele Hu and Richard Wade-Martins, it conducts basic research into the causes of Parkinson’s and carries out clinical studies, both to learn more about the condition and to test potential new therapies. You can find out more here on OPDC’s website .

Taking part in a clinical trial

If you’re interested in taking part in a clinical trial, first you will need to find out which trials are recruiting people with Parkinson’s. There are several good sites that provide information on such studies:

Parkinson’s UK
UK NHS Clinical Trials Gateway
Cure Parkinson’s Trust
Fox Trial Finder
European Parkinson’s Disease Association

Parkinson's UK is the operating name of the Parkinson's Disease Society of the United Kingdom.

A registered charity in England and Wales (258197) and in Scotland (SC037554). Registered office: 215 Vauxhall Bridge Road, London SW1V 1EJ.

Research Blog
Ask the expert

What’s going on with research into Parkinson’s?

We chat to Dr Kevin McFarthing who helps to summarise all of the active research into Parkinson’s in a way that everyone can understand. He tells us, of the 147 ongoing registered clinical studies, what treatments he thinks are the most promising and how best to stay up to date.

We frequently get asked, "so, what’s going on with research into Parkinson’s?" And the answer is a lot! This is promising and reassuring, but it can also be overwhelming for people to stay up to date with research in a way that’s understandable and manageable.

To help cover some of the ways you can stay up to date and to gather some insights into ongoing Parkinson’s research, we chatted with Dr Kevin McFarthing, who was diagnosed with Parkinson’s in 2012.

He is involved in mapping the research landscape, including all the registered clinical studies that are ongoing for Parkinson’s. Not an easy feat! He uses his expertise as a biochemist as well as his motivations of being someone who has Parkinson’s to rise to the challenge.

How are you involved in helping people to stay up to date with research?

I collate what I call the Parkinson’s Hope List (Excel, 104KB) and have been keeping this up to date since 2016. This is a database of all of the drug research and development projects across the globe that are currently underway for Parkinson’s, not only clinical studies but also those that are in the scientific discovery phase in the lab.

After I was diagnosed with Parkinson’s back in 2012, I spent time doing lots of Google searches trying to find out what research was going on. I needed a more organised way of capturing the ongoing research, and to see what might be close to the clinic. I also wanted to understand how this knowledge could help me, and others, to better manage the condition. So, I collected all of this to form the Hope List.

The list has roughly 370 research studies that are ongoing for Parkinson’s and also lists the 200 or so projects that have been stopped or have been completed.

The Hope List also helps as part of my work as the joint editor of the Clinical Trials Highlights section of the Journal of Parkinson’s Disease , working alongside my co-editor Professor Tanya Simuni from Northwestern University in the US.

Tell us more about these Clinical Trials Highlights articles

I help to publish regular articles that give short summaries and overviews of some of the key areas of clinical research. That means research that is already trialling potential treatments and therapies in people with and without Parkinson’s. The articles are for anyone that is interested in Parkinson’s research. Readers don’t need to have in-depth scientific knowledge to be able to take something away from these articles.

I started this in 2019. These articles range from summarising the research into therapies for thinking and memory problems in Parkinson’s, to focusing on a specific drug class, or sometimes giving an overview of the whole clinical trials landscape for the condition. We are also hoping to focus on more non-drug related areas soon, for example, research into exercise.

The articles are not too in depth. For instance, we published an article on infusion therapies and it summarises the science and what’s currently being investigated. We also include links to places to find out more, such as the list of active clinical studies registered on the clinicaltrials.gov website .

These articles are open access — meaning everyone can read them as they are not behind a paywall like some other research publications.

Can you explain the different stages a therapy has to go through before it is approved?

The process of taking an idea from the lab and turning it into an approved treatment in the clinic is long and costly. There are inevitably going to be avenues that are explored that reach a dead end but we are always gaining knowledge and getting closer to the end goal. There is a huge amount of research going on and global collaborations, such as the Parkinson’s Virtual Biotech , aim to speed up drug development for Parkinson’s.

You recently summarised the clinical trials landscape. What are the key takeaway points?

The most recent summary looked at clinical trials that were active as of January 2022.

There are 147 active clinical trials registered for Parkinson’s on clinicaltrials.gov. This is similar to the number of projects pre-covid, and this is very reassuring. It shows, despite the pandemic, investment and momentum seem to have been maintained. It also shows the wide range and quantity of research that is ongoing for Parkinson’s across the globe.

Breakdown of the number of clinical studies in the pipeline for Parkinson’s:

91 trials are focused on short-term symptomatic relief
56 trials aim to modify the course of Parkinson’s progression.

Of these trials:

51 are in phase 1 clinical trials (early safety)
74 are in phase 2 clinical trials (safety and early efficacy)
22 are in phase 3 clinical trials (large scale efficacy and safety).

Read more about the clinical trial pipeline on the IOS Press website . This includes a diagram that lists the specific names of the treatments and therapies being investigated.

Are there any particular areas of research or clinical trials on the Hope List that you are excited about?

March 2022 saw the publication of results from a phase 2 trial looking at whether a drug called ANAVEX 2-73 could improve cognitive symptoms in Parkinson’s. After 14 weeks of treatment, they found a significant improvement in thinking and memory assessments as well as other motor and non-motor symptoms. This is very promising considering this is a relatively short treatment period. We are awaiting news of a phase 3 trial to further investigate these benefits in a larger number of people.

Clumps of a protein called alpha-synuclein are thought to be contributing to brain cell death in Parkinson’s. It’s a busy area of research for Parkinson’s, although the theory has yet to be proven in the clinic.

There have been some recent results from trials looking at using antibodies, weapons from the immune system, to target and remove the protein, however, I don’t think this is the way forward. Read more about the results from trials of vaccines for Parkinson's.

However, those treatments that aim to make a helpful form of alpha-synuclein more readily available to the cell I think are particularly interesting. For instance, the drug being looked at by Enterin ENT-01. A recent phase 2 trial tested this for constipation in Parkinson’s, over a 13-week treatment period. It showed benefits not only for constipation but other symptoms of Parkinson’s and these benefits persisted for 6 weeks after treatment. The Parkinson's Virtual Biotech has also recently announced investment to take this drug forward to clinical trials for Parkinson's dementia. Read more about the Parkinson's dementia research project .

I think these are probably the closest to the patient in terms of being in later stages of research. This is helped by the fact that the drugs have already been shown to be safe for use in people with diabetes. The drugs work by targeting a receptor in the pancreas that binds GLP-1 and then triggers insulin release. Crucially these receptors are also present inside the brain. Research in the lab has suggested they play some role in protecting or supporting the brain cells which are affected in Parkinson’s. There have also been clinical studies that have shown benefit.

The one people are most familiar with is called exenatide and there is a phase 3 trial ongoing in the UK. Recruitment is now closed, meaning that the study looking at 200 participants over 2 years is well underway. Stay up to date on the Exenatide trial on UCL's website .

Are you involved in other activities to help influence and share Parkinson’s research?

I am on the research committee for Cure Parkinson’s where I play a role in helping to decide which research the charity funds. I am also a Research Champion for the Parkinson’s UK Oxford Branch, helping to spread the latest news and opportunities for people in my area.

Find out more about becoming a Research Champion .

Have you taken part in any research yourself? And, if so, why?

I have taken part in 17 observational studies. These are studies that are contributing to building a more complete picture of Parkinson’s, its symptoms and how it progresses.

They have been very interesting to be a part of. I have found out a lot about myself and the research itself. Some have also been good fun!

Also, a bonus is that I have definitely had more contact with Parkinson’s researchers and clinicians than I would have had otherwise.

What would you encourage people to do after reading this article?

Read the Clinical Trial Highlights in the Journal of Parkinson’s Disease .
Look at the Take Part Hub to find studies looking for people to take part today .
Look to see if there is a local Research Interest Group near you . It is a great place to start if you want to get more involved with research.
Join the Research Support Network to stay up to date with news and opportunities by email .
I would also encourage people to read further articles on the Parkinson’s UK blog and Simon Stott’s blog "The Science of Parkinson’s" . Both cover a range of topics and hold a tremendous amount of information.

Thanks to Kevin for chatting to us and helping to edit this blog.

Find opportunities to take part in research

By taking part you can help accelerate breakthroughs.

Research Support Network Newsletters

Written by Julie Neale

0 comment(s), published: may 19, 2023.

Please see below the latest Research Roundup letters from Parkinson’s UK

Research Roundup Thank you for your continued support of Parkinson’s research, and a warm welcome if you are new to the Research Support Network. Study reveals benefits of physical activity for Parkinson’s symptoms Researchers compared results from over 150 studies to understand how different types of physical activity can be used to manage Parkinson’s symptoms. Being physically active can have a positive impact on Parkinson’s symptoms, both physically and mentally. Research has shown that aiming for 2.5 hours of physical activity a week can help people with Parkinson’s take control of their condition. Read more about the benefits of physical activity on our website. While there are many different types of physical activity, some will naturally suit some people better than others. However, it’s unknown whether some specific activities might be useful to target particular symptoms. Or whether exercises should be advised at different stages of the progression of the condition. What did the researchers do? The research team conducted a form of study called a Cochrane review. They analysed results from 156 different studies involving different types of physical activity including dance, aqua-based training and weight training. They looked at feedback from participants in these studies to assess for changes in quality of life, and other common tests to monitor progression of the condition. Overall, the researchers found that taking part in physical activity had benefits for people with Parkinson’s in terms of movement or improved quality of life, when compared with people who had not been active. It was not clear whether specific forms of physical activity were better than others for people with Parkinson’s. The team did find some evidence that linked taking part in dance classes with an improvement in balance and other symptoms associated with movement. They also found that aqua-based training was linked to improvements in quality of life, although whether this was due to physical activity or social interaction at exercise classes was unclear. What does this mean? This study, combining results collected from over 7,000 people with Parkinson’s, offers great evidence that taking part in most types of physical activity can be beneficial for people with Parkinson’s. Importantly, there was very little evidence that physical activity resulted in harm, or worsening of symptoms, for any participants. Dr Becky Jones, Research Communications Officer at Parkinson’s UK, said: “Reviews like this are a great example of how looking across results from many different studies can provide us with a clearer picture of whether a treatment or an activity could be beneficial for people with Parkinson’s. The study adds to our existing knowledge that physical activity can be an important way for people with Parkinson’s to take control of the condition. “The Cochrane review highlights exciting areas that need further study. More research into the particular benefits of dance or aqua-based training could help guide people with Parkinson’s to try out activities that could have the most impact on symptoms. “As always, we recommend that anyone wishing to make a change to their lifestyle speak with their healthcare provider for advice before starting.” Early results offer new hope for dyskinesia treatment We’re excited to announce the positive results of a trial for a potential new treatment for people with Parkinson’s with levodopa-induced dyskinesia. This is the first completed clinical trial funded by the Parkinson’s Virtual Biotech. Dyskinesia is a debilitating side effect of current Parkinson’s medication, with around half (40 to 50%) of all people with Parkinson’s experiencing it after 5 years of taking levodopa, the main drug used to treat the condition. Up to 80% experience it after 10 years. With dyskinesia everyday tasks, such as eating, writing and walking, can become extremely difficult. In fact, uncontrolled movement was voted the third most important issue to be addressed by research in a recent Parkinson’s UK survey on quality of life. The main medication available to manage dyskinesia is amantadine, which can have side effects and does not work for everyone. The study tested whether a drug called NLX-112 is safe to use in people with Parkinson’s. It also looked at how effective it may be at reducing dyskinesia in people who take levodopa to manage their Parkinson’s. Its safety has previously been confirmed in people with other conditions. Serotonin cells in the brain have the ability to convert levodopa into dopamine. These cells are thought to contribute to the development of dyskinesia when they start to release dopamine erratically. NLX-112 works by targeting serotonin cells inside the brain, and decreasing the amount of dopamine the cells release. Supported by the Parkinson’s Virtual Biotech The clinical trial was co-funded by The Parkinson’s Virtual Biotech, the drug discovery arm of Parkinson’s UK, and The Michael J Fox Foundation for Parkinson’s Research. The projects the Parkinson’s Virtual Biotech funds are entirely driven by the Parkinson’s community and their priorities. This is the first completed clinical trial funded by the Parkinson’s Virtual Biotech, a global partnership with the Parkinson’s Foundation. The promising results show that this innovative way of working to fast-track the most promising breakthroughs through the drug development pipeline is bringing us closer to new treatments. What did the research set out to do? The phase 2a clinical trial investigated how safe and well tolerated the drug was on a small number of people with Parkinson’s. The trial also took a first look at the drug’s efficacy, which is how well it does its job. What did the clinical trial involve? 22 participants with Parkinson’s with levodopa-induced dyskinesia completed the 8-week trial in Sweden. 15 participants received NLX-112 and 7 participants received a dummy drug. Participants either received NLX-112 or the dummy drug in increasing doses during the initial 4 weeks, to minimise the potential side effects. They stayed on the maximum dose for 2 weeks, and then were weaned off the drug over 2 weeks. What were the results? The results achieved the first objective to suggest that NLX-112 was safe and well tolerated in people with Parkinson’s. The second aim of the study was to show that NLX-112 was effective in treating dyskinesia. The results suggest participants who received NLX-112 showed a significant reduction in their scores for dyskinesia, whereas those who received the dummy drug did not show a significant reduction in their scores. The side effects of participants who received NLX-112 were mild, which confirmed previous results. What’s next? Now that the phase 2a clinical trial has been completed, the researchers will complete a full analysis of the results. They will then progress to a phase 2b clinical trial where they will investigate the safety and efficacy of the drug in a larger group. Dr Arthur Roach, Director of Research at Parkinson’s UK, said: “We’re incredibly proud and excited by these early results from Neurolixis. They were one of the first companies that the Parkinson’s Virtual Biotech invested in, in partnership with The Michael J Fox Foundation, so to see it making positive progress just reiterates why this brave and innovative approach is right for the Parkinson’s community. It really is bringing us closer to new treatments that address the symptoms that the Parkinson’s community have told us are the most urgent and levodopa-induced dyskinesias is one of those. “Further studies will be necessary for regulatory approval and routine clinical use of NLX-112. But now people with Parkinson’s can have hope that a much-needed new treatment for levodopa-induced dyskinesias may be coming to them soon, and know that their support of the Parkinson’s Virtual Biotech has made this possible.” Best wishes, Becky Jones Research Communications Officer

Research Roundup Thank you for your continued support of Parkinson’s research, and a warm welcome if you are new to the Research Support Network. Brain Awareness Week — studying the power of the brain’s self-cleaning system In March we marked Brain Awareness Week, a celebration of research being undertaken to understand how the brain works, and crucially ways to help when things go wrong. At Parkinson’s UK, almost all of the research we fund relates to the brain in some way. We know the symptoms of Parkinson’s are caused by a loss of a brain chemical called dopamine. This is linked to the death of brain cells which produce it. So whether the research is studying the brain more closely to look at what causes this, studying the impact of certain drugs for treating symptoms. Or even studying the effects of certain activities such as physical activity on mental health, it would be tricky to study Parkinson’s without considering the brain along the way. Some of the projects we fund look a bit more closely at how the condition develops in the brain. One such project is being led by Dr Ian Harrison and Professor Mark Lythgoe at University College London. Ian and Mark are interested in how our brains normally get rid of waste products which build up throughout the day. Failed clearance of these waste products can lead to them building up in the brain, which can stop the cells from being able to carry out their job as usual. Many different neurodegenerative conditions are associated with a build up of brain waste, normally in the form of clumps of sticky protein. In Parkinson’s, the troublesome protein is called alpha-synuclein. Strands of the protein start to tangle together and clog up brain cells, causing damage which ultimately results in cell death. Flushing away the waste In our brains, we need a way to clear away the waste protein which builds up throughout the day. Luckily, we have a built-in self-cleaning system, called the glymphatic system, which kicks in while we sleep. The glymphatic system is a network of fluid-filled spaces and water channels that can carry this accumulated waste out of the brain. It uses cerebrospinal fluid, a clear liquid which surrounds the brain, to wash away the toxic proteins and dead cells that have built up during the day. But in Parkinson’s and other neurodegenerative conditions such as Alzheimer’s, the system is not able to clear away the toxic clumps of alpha-synuclein effectively. So in 2019, alongside Alzheimer’s UK, we co-funded a project led by Ian to try and understand whether there are ways to boost this system. The project involves studying mice that have been injected with alpha-synuclein. This injection triggers the alpha-synuclein already in the brain to start clumping together, which then starts to accumulate in the brain. As alpha-synuclein clumps form, they cause damage, and the clumps start to spread around other cells. This means that the mice start to develop some of the symptoms associated with Parkinson’s, such as movement problems. To understand how the glymphatic system might be involved in the development of Parkinson’s symptoms, Ian has been using a drug which stops the system working. The drug targets a protein called aquaporin-4, which previous research has shown is important in making sure the glymphatic system works correctly. Ian’s results so far show that when the mice are given this drug, they experience more problems with movement, and develop more clumps of alpha-synuclein in areas of the brain. This suggests that the glymphatic system is important in Parkinson’s — when it’s not working at all, the symptoms appear worse. So is there a way to boost the glymphatic system? Using the same mice, Ian is looking to address this question. This time, he’s using a different drug, which can speed up the glymphatic system. It does this by increasing the function of aquaporin-4. If it works, then he should see that the mice given this drug have fewer issues with movement and fewer clumps of alpha-synuclein in their brain cells. This work is still ongoing, but Ian is excited to see where this will lead. From mice to humans and back again While using mice in research can be a really helpful tool to study what’s going on in the brain during Parkinson’s, it doesn’t quite tell us the whole story of what’s happening in humans. We need studies of human brains to understand the whole picture. Which is why Ian is working with Mark Lythgoe, Professor of Biomedical Imaging at University College London, to find out more about what’s happening in the brains of people with Parkinson’s. Using tissue provided by the Parkinson’s UK Brain Bank, Ian and Mark are comparing areas of the brain in people who had early and late stage Parkinson’s, alongside people who didn’t have Parkinson’s. They are looking for aquaporin-4, and for any clues that it might be linked to increases in alpha-synuclein build up. When it’s working properly, aquaporin-4 should be found concentrated in one area of a particular type of brain cell. This helps it perform its main function — moving cerebrospinal fluid into the brain, so that the fluid can power the glymphatic system and clear away waste proteins. But when it’s not working properly, aquaporin-4 can be found spread throughout the cell, rather than concentrated to the one area. Looking at the brain tissue has helped Ian and Mark piece together more of the story that began by looking at the mice. In brain samples from people with late stages of Parkinson’s, there is less aquaporin-4 when compared to samples from people without Parkinson’s. And the aquaporin-4 that is there, isn’t where it should be. All this suggests the glymphatic system might not be working properly. However in people with early stages of Parkinson’s, there seems to be more aquaporin-4 than in people without Parkinson’s. This seems counterintuitive, but it could just mean that the body is trying harder to clear away the clumps of alpha-synuclein that have already started to form. By increasing aquaporin-4, the brain is trying to encourage the glymphatic system to work overtime, but unfortunately this is not enough to clear away all the clumps of protein. What’s the next stage? Working with the Brain Bank tissue has helped Ian and Mark confirm some of what they are seeing in their experiments with mice. Studying brain tissue donated by people who have lived with Parkinson’s is invaluable to furthering our understanding of Parkinson’s. And finding potential new treatments. As well as looking for aquaporin-4, Ian and Mark have also been able to take samples of alpha-synuclein from the Brain Bank tissue. This means that they have real protein from people with Parkinson’s, which can be used for further studies. One of the ways they hope to use this is to further their work in mice. Using this alpha-synuclein, donated from people who had Parkinson’s, might help make the study more representative of what’s going on in humans, instead of relying on an artificial form of alpha-synuclein. They also hope to use these mice to work out the best time to give a treatment which would boost the glymphatic system, making it the most useful for people with Parkinson’s. The work so far has shed light on how the glymphatic system might be involved in Parkinson’s, and ways that we might be able to harness its power to pave the way for new treatments to slow, or even stop, the progression of Parkinson’s. Study reveals benefits of physical activity for Parkinson’s symptoms Researchers compared results from over 150 studies to understand how different types of physical activity can be used to manage Parkinson’s symptoms. Being physically active can have a positive impact on Parkinson’s symptoms, both physically and mentally. Research has shown that aiming for 2.5 hours of physical activity a week can help people with Parkinson’s take control of their condition. Read more about the benefits of physical activity on our website. While there are many different types of physical activity, some will naturally suit some people better than others. However, it’s unknown whether some specific activities might be useful to target particular symptoms. Or whether exercises should be advised at different stages of the progression of the condition. What did the researchers do? The research team conducted a form of study called a Cochrane review. They analysed results from 156 different studies involving different types of physical activity including dance, aqua-based training and weight training. They looked at feedback from participants in these studies to assess for changes in quality of life, and other common tests to monitor progression of the condition. Overall, the researchers found that taking part in physical activity had benefits for people with Parkinson’s in terms of movement or improved quality of life, when compared with people who had not been active. It was not clear whether specific forms of physical activity were better than others for people with Parkinson’s. The team did find some evidence that linked taking part in dance classes with an improvement in balance and other symptoms associated with movement. They also found that aqua-based training was linked to improvements in quality of life, although whether this was due to physical activity or social interaction at exercise classes was unclear. What does this mean? This study, combining results collected from over 7,000 people with Parkinson’s, offers great evidence that taking part in most types of physical activity can be beneficial for people with Parkinson’s. Importantly, there was very little evidence that physical activity resulted in harm, or worsening of symptoms, for any participants. Dr Becky Jones, Research Communications Officer at Parkinson’s UK, said: “Reviews like this are a great example of how looking across results from many different studies can provide us with a clearer picture of whether a treatment or an activity could be beneficial for people with Parkinson’s. The study adds to our existing knowledge that physical activity can be an important way for people with Parkinson’s to take control of the condition. “The Cochrane review highlights exciting areas that need further study. More research into the particular benefits of dance or aqua-based training could help guide people with Parkinson’s to try out activities that could have the most impact on symptoms. “As always, we recommend that anyone wishing to make a change to their lifestyle speak with their healthcare provider for advice before starting.” Early results offer new hope for dyskinesia treatment We’re excited to announce the positive results of a trial for a potential new treatment for people with Parkinson’s with levodopa-induced dyskinesia. This is the first completed clinical trial funded by the Parkinson’s Virtual Biotech. Dyskinesia is a debilitating side effect of current Parkinson’s medication, with around half (40 to 50%) of all people with Parkinson’s experiencing it after 5 years of taking levodopa, the main drug used to treat the condition. Up to 80% experience it after 10 years. With dyskinesia everyday tasks, such as eating, writing and walking, can become extremely difficult. In fact, uncontrolled movement was voted the third most important issue to be addressed by research in a recent Parkinson’s UK survey on quality of life. The main medication available to manage dyskinesia is amantadine, which can have side effects and does not work for everyone. The study tested whether a drug called NLX-112 is safe to use in people with Parkinson’s. It also looked at how effective it may be at reducing dyskinesia in people who take levodopa to manage their Parkinson’s. Its safety has previously been confirmed in people with other conditions. Serotonin cells in the brain have the ability to convert levodopa into dopamine. These cells are thought to contribute to the development of dyskinesia when they start to release dopamine erratically. NLX-112 works by targeting serotonin cells inside the brain, and decreasing the amount of dopamine the cells release. Supported by the Parkinson’s Virtual Biotech The clinical trial was co-funded by The Parkinson’s Virtual Biotech, the drug discovery arm of Parkinson’s UK, and The Michael J Fox Foundation for Parkinson’s Research. The projects the Parkinson’s Virtual Biotech funds are entirely driven by the Parkinson’s community and their priorities. This is the first completed clinical trial funded by the Parkinson’s Virtual Biotech, a global partnership with the Parkinson’s Foundation. The promising results show that this innovative way of working to fast-track the most promising breakthroughs through the drug development pipeline is bringing us closer to new treatments. What did the research set out to do? The phase 2a clinical trial investigated how safe and well tolerated the drug was on a small number of people with Parkinson’s. The trial also took a first look at the drug’s efficacy, which is how well it does its job. What did the clinical trial involve? 22 participants with Parkinson’s with levodopa-induced dyskinesia completed the 8-week trial in Sweden. 15 participants received NLX-112 and 7 participants received a dummy drug. Participants either received NLX-112 or the dummy drug in increasing doses during the initial 4 weeks, to minimise the potential side effects. They stayed on the maximum dose for 2 weeks, and then were weaned off the drug over 2 weeks. What were the results? The results achieved the first objective to suggest that NLX-112 was safe and well tolerated in people with Parkinson’s. The second aim of the study was to show that NLX-112 was effective in treating dyskinesia. The results suggest participants who received NLX-112 showed a significant reduction in their scores for dyskinesia, whereas those who received the dummy drug did not show a significant reduction in their scores. The side effects of participants who received NLX-112 were mild, which confirmed previous results. What’s next? Now that the phase 2a clinical trial has been completed, the researchers will complete a full analysis of the results. They will then progress to a phase 2b clinical trial where they will investigate the safety and efficacy of the drug in a larger group. Dr Arthur Roach, Director of Research at Parkinson’s UK, said: “We’re incredibly proud and excited by these early results from Neurolixis. They were one of the first companies that the Parkinson’s Virtual Biotech invested in, in partnership with The Michael J Fox Foundation, so to see it making positive progress just reiterates why this brave and innovative approach is right for the Parkinson’s community. It really is bringing us closer to new treatments that address the symptoms that the Parkinson’s community have told us are the most urgent and levodopa-induced dyskinesias is one of those. “Further studies will be necessary for regulatory approval and routine clinical use of NLX-112. But now people with Parkinson’s can have hope that a much-needed new treatment for levodopa-induced dyskinesias may be coming to them soon, and know that their support of the Parkinson’s Virtual Biotech has made this possible.” Best wishes, Becky Jones Research Communications Officer

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Engaging the Parkinson’s Community at our Race Equality in Research events

In 2021, we launched our Race Equality in Research project to address the lack of diversity in Parkinson’s research. Find out how we’ve been working on our first priority, collaborating with community groups to build connections and share information.

We know that Parkinson’s research doesn’t currently include representation from all people affected by Parkinson’s. And we can’t stop until it does.

Through our Race Equality in Research project, we’re putting together a plan to address the lack of ethnic diversity in research. We know that around 13% of people with Parkinson’s are from Black, Asian, or minority ethnic backgrounds. But they are not accurately represented in Parkinson’s research as a whole, or in our Research Support Network.

This lack of representation has an impact on all aspects of Parkinson’s research, support and care. If research does not include everyone from the beginning, it’s likely that our current understanding of Parkinson’s is not the full picture. This means that potential treatments and services might not be appropriate for everyone.

Last year, we published a list of priorities, identified by our Race Equality in Research Steering Group. One of the first priorities was for the Parkinson’s UK research team to establish and build networks with underrepresented communities, in a way that benefits everyone.

Read our list of actions and priorities in a previous blog.

Our steering group had emphasised to us the importance of understanding the needs of different ethnic groups. Barriers to taking part in research might look different for people from different communities. So we needed to have an approach that allowed us to understand what specific barriers might be, to work together to address them and encourage more people to engage with research.

We decided we would work towards this by partnering with local groups to hold community information events. In April 2022, we were invited to join an event held at the Peepul Centre in Leicestershire, with members of the South Asian Parkinson’s Community Cafe . Organised by local volunteer, Hema, and Parkinson’s UK Area Development Manager Katie Smith, the Parkinson’s UK Research team came along to share information and resources about getting involved in research.

The event was a great success, thanks to the way that the event was organised. Hema and Katie worked closely with the South Asian Parkinson’s community cafe members to ensure the event was tailored to their needs. There was some great feedback from attendees on the day, with some good conversations between attendees, speakers and the Research team about what taking part in research might involve.

Having identified this as a successful format for events, the Race Equality in Research Steering Group used this to begin planning 3 further events using this structure. The group identified the need for a relaxed atmosphere that would encourage questions and the importance of centring the day around the personal stories and experiences of people with Parkinson’s. It was also key that events were specifically designed to meet the needs of the community, including leaflets in different languages, good food, and accessibility.

The ultimate goal was for the events to normalise talking about Parkinson’s, providing a space for people to meet with others with the condition, and changing the narrative about Parkinson’s to show how people live well with Parkinson’s.

See an example of an event agenda (PDF, 597KB).

Living Well with Parkinson’s, Hounslow, West London

Led by our Race Equality in Research steering group member Kuhan Pushparatnam, we kicked off with an event developed for South Asian communities in West London. Kuhan used his connections with local support organisation Integrated Neurological Services (INS) to invite local people to join a day of information and experience sharing.

The day included talks from INS and Parkinson’s UK Adviser, Ruhul Ebadi, with information about support available for people with Parkinson’s and their loved ones. There was also a group panel discussion where people shared their experiences of living well with Parkinson’s.

One repeated theme that came across from the discussions on the day was anxiety about sharing a diagnosis with friends and family.

Kuhan said:

"I remember when I told my parents, one of their first reactions was, 'Don't worry, we won't tell anybody', in the hope it would protect me. I feel that a lot of the problems stem from a lack of culturally appropriate information.

"Increasing awareness and understanding of Parkinson's in ethnic communities is an important first step, and then it becomes easier to explain the benefits of becoming involved in research."

Overall, the day had a real positive feel. Attendees were able to have conversations with healthcare providers, research teams and support groups and find out more about what was available for them. As well as having the opportunity to connect with other people with Parkinson’s and their loved ones, sometimes for the first time.

"The event was a gamechanger and opened up my eyes. I’m keen to attend other activities and find community with people with Parkinson’s. This is the first time I have been around other people with Parkinson’s." Feedback from a West London event attendee.

Having a good mix of stallholders, alongside talks about lived experiences from people living with Parkinson’s, helped bring together a well-considered, informative and inspiring day of community building.

Read more about the event in Kuhan’s blog, Living Well With Parkinson's Day .

Living well with MS, Parkinson’s and Alzheimer’s, Brixton, South London

Following the success of the event in Hounslow, Parkinson’s UK teamed up with the MS Society and Alzheimer’s Society to run a similar event in Brixton. This was aimed at people from Black African and Caribbean backgrounds, and discussed living well with all 3 conditions: Parkinson’s, multiple sclerosis (MS) and dementia.

The event was held at Lambeth Town Hall on a Saturday in March 2023, attracting passers-by and those who had seen advertisements in the area into the hall for information. Stallholders included support groups, neuro physiotherapists, researchers and people from the Parkinson’s, MS and dementia communities.

At the event, Dr Dayne Beccano-Kelly, a Parkinson’s UK funded researcher from Cardiff University, gave a talk about his experience as a Black scientist working in Parkinson’s research. Dayne spoke about his motivations for becoming a researcher, some of the challenges he has experienced, and why he wants to inspire a new generation of Black scientists to enter the field.

Read more about Dayne’s work on our research blog: A researcher's view: Parkinson's research and diversity .

There was clear appreciation that the speakers represented the audience. One audience member commented that it made them proud to see Dayne presenting and representing them.

The topic of trust came up a few times over the course of the day, with attendees commenting how a lack of trust in healthcare services due to previous problems had left them feeling unable to connect or seek advice. Hearing real-life experiences from people from Black African and Caribbean backgrounds, such as Race Equality in Research Steering Group member Linda E’s stories about her dad, were really helpful. Linda was able to share stories that people could relate to, and feel seen.

The day was a great opportunity to connect with others, and many attendees left asking for more similar events in the future to help build a sense of community. Others said the event had given them confidence, and that they were leaving with the intention of getting involved in physical activity sessions, or finding new ways to live well with the condition.

Toussaint, who was diagnosed with young-onset Parkinson’s, attended the event in Brixton to find out more about Parkinson’s. He said:

"I found it a fantastic event and something that I look forward to attending again. The amount of information and support available to people like myself living with Parkinson's was truly amazing.

"I met Laura from Neuro Heroes who informed me about the Parkinson's specific exercise programme available. I've since signed up and partake in this on a weekly basis. There are a lot of amazing people working with the Parkinson's community and Parkinson's UK."

Toussaint, event attendee

Looking forward

Feedback from both events so far shows that people have enjoyed having a space to chat with other people from their local community. Creating a relaxed and friendly atmosphere helped people open up and ask questions. It also empowered people to share their own experiences with other members of the Parkinson’s community, sometimes for the first time.

"Thanks for a most informative and fantastic event. I learned and connected so much today. I appreciate it so much." Feedback from Brixton event attendee.

Our next Race Equality in Research event is already in the works for June 2023 and will take place in Bradford, West Yorkshire. This event will be developed for South Asian communities in the area, and planning is being led by another member of our Race Equality in Research Steering Group, Shafaq Hussain-Ali.

Liz Nash, Research Support Network Manager at Parkinson’s UK, said:

"Our Bradford event planning team has been busy over the past few months, taking learnings from these events to plan something really informative and fun.

Short taster sessions of dance and seated physical activity will be included, as well as the opportunity to chat to local Parkinson's nurses and activity groups. We're all looking forward to the curries on offer at lunch, too!

Overall, we want everyone to feel informed and supported, connected to local activities and research opportunities, so as to be able to live life with Parkinson's to the full. "

Join our Race Equality in Research steering group

We're looking for people with Parkinson's and their family, friends and carers from Black, Asian or Mixed Race background to join this project steering group. Your input and lived experience is key to shaping and guiding this important work.