In recognition of World Parkinson's Day, we speak to Dr. Arthur Roach, Director of Research at Parkinson’s UK, about the current Parkinson's landscape including misconceptions, latest research, and the future of the disease.
Please can you introduce yourself and tell us about your role at Parkinson’s UK?
I’m Arthur Roach, Director of Research at Parkinson’s UK. My background is in pharma and biotechs. Now I’m bringing that expertise to the charity which is taking a pioneering approach to the search for a cure.
The jewel in the crown of our research strategy is the Parkinson’s Virtual Biotech, the drug development arm of Parkinson’s UK, which was created to find new, better treatments and a cure, faster. It’s a bold approach that we’re taking to plug the gap in the drug development pipeline. We take the most promising research breakthroughs and provide the investment and expertise to see if we can develop them into plausible drug treatments. If we can de-risk the science, we hope we can encourage the big pharmas to come in and take it on.
And to make sure we’re never short of exciting and promising breakthroughs, we provide traditional research grants, bettering our understanding of Parkinson’s, its causes, and possible treatments.
Parkinson’s UK is a charity ‘working together for everyone living with Parkinson’s’. Please can you tell us more about your missions, aims, and the work you are involved with?
Put simply, our mission is to find a cure. We can’t do that alone. We need researchers, fundraisers, partners, and volunteers. Everyone.
People with Parkinson’s desperately need new and better treatments, and that’s why they are the heart of all that we do. There are 145,000 people diagnosed with Parkinson’s in the UK. They shape our research priorities, the symptoms where treatments can make the biggest difference. They review our plans to ensure that they align with those priorities and are partners in research, for instance designing trials that meet the participants’ needs. And they take part in these groundbreaking trials.
Right now, in our Virtual Biotech we have projects on the go at the discovery through to early clinical development stages. We prioritize arrangements that allow us to be agile and responsive. We fund a pipeline of over 40 project grants including nine Virtual Biotech projects, carefully monitoring the progress of each, increasing our investment to fuel progress, or pulling back if a project stops or stalls.
Our current Virtual Biotech projects include:
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Vivifi Biotech is driving forward planning for the further development of glial cell-line derived neurotrophic factor (GDNF), which has the potential to slow, stop or even reverse Parkinson’s. Previous trials were inconclusive, despite positive effects reported by trial participants and seen in brain imaging. We’re designing a trial to finally determine if GDNF could be a viable new therapy. This is something the Parkinson’s community is championing and we are proud to be leading.
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Project Galaxy explores whether therapies to dampen inflammatory responses in the brain could slow or stop Parkinson’s progression. Based on a successful pilot project, we have recently allocated £2.9 million in further funding. It is our first-homegrown project and has grown from an idea into a vibrant initiative that has the potential to run for several years.
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We are funding two trials that could address some of the most disturbing symptoms of Parkinson’s. The first is a world-first phase two clinical trial exploring the potential of cannabidiol (CBD) for treating psychosis in people with Parkinson’s. The trial focuses on understanding what dose of cannabidiol treatment will have the best therapeutic effect for treating hallucinations. The other is a trial looking at whether ondansetron, an anti-sickness drug, can be repurposed to treat visual hallucinations.
What is Parkinson's?
Parkinson’s is the fastest-growing neurological condition in the world. Why is this and can you tell us more about what Parkinson’s is?
In short, Parkinson’s is what happens when the brain cells that make dopamine start to die. To complicate matters, there are over 40 symptoms, from tremors and pain to anxiety. Some are treatable, but the drugs can have serious side effects.
Despite Parkinson's being the fastest growing neurological condition in the world, we still don’t fully understand its causes. Age is the biggest risk factor but there are lifestyle and environmental risk factors as well as genetic factors that all play a role in the development of Parkinson's. There’s research ongoing into all these areas to help us better understand.
We estimate that Parkinson's affects over 1 million people in the UK - either as someone with a diagnosis or as the family member or friend as someone living with the condition. Everyone wants to see a cure – or at least a treatment that will stop or reverse it. However, those living with Parkinson’s for a number of years can see that this is not going to come suddenly – it is something that will come together over some years. The race to find a cure is actually more of an Iron Man triathlon than a sprint.
Despite Parkinson’s being an increasingly common neurological condition, there are over 40 symptoms, and every individual's experience is different. Why does this, therefore, make studying Parkinson’s and developing treatments challenging?
Three main elements make studying the condition difficult - its complexity, the lack of representation in research, and the fact that there is still so much that we do not know about the brain.
While there are more than 40 symptoms, not everyone will have all of them, and they won’t appear in the same order or manifest in the same way for lots of people. This means that the treatment - or more accurately the combination of treatments - that works for one person, won’t work for everyone. And the symptom that is the number one research priority for some people, won’t even be a concern for others living with the same diagnosis.
We also know that there is a lack of diversity amongst those taking part in Parkinson’s research and this holds us back. Parkinson’s affects people of all ethnicities but we struggle to involve people from Black, Asian or mixed heritage in research studies. So we have formed a steering group for this work made up of people with Parkinson’s and research professionals from Black, Asian, and mixed heritage backgrounds. This year, we are creating a clear plan with concrete activities to drive forward racial representation in research.
And finally, perhaps the biggest challenge that we face, is that there is still a great deal that we don’t know about the brain - how it works, or how it declines. We have limited tools to understand what goes on in the brain - sometimes we can study brains donated to research in the The Parkinson's UK Brain Bank,, sometimes in studies in live people. Specifically for Parkinson’s, we don’t know why dopamine-producing cells die. It sounds simple, but we really need to increase our overall understanding of the brain.
But there is hope. Those involved in Parkinson’s research have a real conviction that transformative therapies, in the shape of disease-modifying drugs, gene therapy, growth factors, and repurposed drugs, along with potential biomarkers, offer a beacon of hope in the race to a cure. The job of decoding Parkinson’s, which may have at least five subtypes, remains an intellectual and logistical challenge but the passion to provide a better future for ten million people worldwide remains intense.
Image Credit: Kotcha K/Shutterstock.com
Every year, the world recognizes World Parkinson’s Day on the 11th of April, aiming to help raise awareness surrounding this condition. Why is it important to highlight this condition and increase the public’s awareness?
Not enough people understand what it’s like to live with Parkinson’s. They don’t know it’s a serious condition and they don’t realize that treatments are limited. People with Parkinson’s want to be treated better by society, they want people to stand beside them as they fight for better healthcare and rights, and to help fund the search for a cure. But if no one understands Parkinson’s, that can’t happen.
It’s time we start open conversations to demystify and humanize Parkinson’s. And if we can get more people interested in neurological research, that’s another bonus!
Currently, not enough people worldwide understand Parkinson’s. What do you believe to be some of the biggest misconceptions surrounding Parkinson’s and why is it important to challenge them and share accurate information?
Given that even researchers and scientists don’t fully understand Parkinson’s, I can see how the general public are confused. The main misconceptions that we hear about from the community are around symptoms. Too many people think that it’s ‘just’ a tremor because this is the most commonly recognized symptom, but it’s so much more than that, and not everyone will have a tremor. Accusations of being drunk or uninterested due to facial masking are also common for people living with the condition.
Then there are misconceptions about who is affected by Parkinson’s - it’s often seen as an older person’s condition and statistically, they do make up the majority of people with a diagnosis. But Parkinson’s doesn’t discriminate, it can affect anyone regardless of age, gender, race, or ethnicity. As a charity, we work to challenge these misconceptions and increase understanding of the condition.
How can people get involved and help to raise awareness this World Parkinson’s Day?
This World Parkinson’s Day we’re aiming to raise awareness of the condition by talking about Parkinson’s. By having open and honest conversations about the reality of the condition and where we are in terms of research and support, hopefully through speaking about Parkinson’s more people will come to understand this is a serious condition that cannot currently be cured.
Driven by the Parkinson’s community, buildings across the UK will be lighting up blue on Monday 11 April to start conversations about Parkinson’s. Additionally, there will be a selection of poems on our website written by people affected by the condition. These are ideas that the community have developed to help them start these really important conversations. And as Parkinson’s affects everyone differently, there will be millions of unique conversations to have - from people with the condition and their loved ones to the researchers finding a cure.
What advice would you give to a family member, friend, or partner of someone diagnosed with suffering from Parkinson’s? How can they educate themselves to better understand the condition?
Knowledge is power and you’re not alone. In the UK, visit our website (parkinsons.org.uk) or call our helpline - 0808 800 0303 to speak with an adviser who can answer your questions or point you in the right direction. We have a variety of local groups where people can go and meet other people affected by the condition and ask them their questions, or just find new friends.
Are there any upcoming projects that Parkinson’s UK is involved in?
I have already mentioned some of our cutting-edge research projects, such as the planning for a GDNF trial, CBD, and ondansetron. And we are constantly evaluating candidates for our next Virtual Biotech project. At the moment we are looking at possible projects on three continents, which aim to slow, prevent or delay Parkinson’s by completely novel mechanisms.
What do you hope the future of Parkinson’s will look like? Are you hopeful that with continued innovation we will see new treatments available for those with Parkinson’s?
Yes, I certainly am hopeful.
There is a group of novel mechanisms being tested now in Phase 2 clinical trials of a number of small molecules and antibodies. Many of these are based on recent genetic discoveries. Moreover, we are getting better at testing new treatments in clinical trials for Parkinson’s, so I believe that some of these will show their worth sooner rather than later. At first, their effectiveness may be clear but modest, however, work will immediately follow on how to optimize these treatments, and how to combine them in the best way, tailored to individuals.
This is an exciting time, and if we and other stakeholders keep our foot on the accelerator there will be new treatments. And, some of these maycome directly out of Parkinson’s UK’s Virtual Biotech!
Where can readers find more information?
All the latest from the Parkinson’s Virtual Biotech can be seen on its website: https://www.parkinsonsvirtualbiotech.co.uk/. Whilst information about our research grants and our quarterly research magazine Progress can be found on the main Parkinson’s UK website.
About Dr. Arthur Roach
Dr. Arthur Roach oversees Parkinson’s UK’s growing research programme. Dr. Roach has over 25 years’ experience directing research in Parkinson’s and other neurodegenerative conditions at universities, hospitals, and pharmaceutical and biotechnology companies.
With more than two decades of experience in the pharmaceutical industry, Dr. Roach leads on the pioneering Parkinson’s Virtual Biotech, led by the charity, which is plugging the funding gap in drug development and fast-tracking the projects with the greatest scientific potential to transform the lives of people with Parkinson's.
He is Founder and President of the Geneva Pharma Network, and before taking up the position of Parkinson’s UK Research Director was Founder and Program Leader at CHORD Therapeutics in Geneva. Prior to this he was Senior Director of Neurodegenerative Disease Research and Disease Area Team Leader for Parkinson’s disease at Merck Serono, where his work led to a patent filing for use of safinamide in Parkinson’s. Previously, he held positions at DuPont Pharmaceuticals Company and Bristol-Meyers Squibb Pharma in the US, and Allelix Biopharmaceuticals in Canada.
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