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PROGRESS The research magazine of Parkinson's UK | Spring 2021 Recipe for a cure Experts share their recipe for success in Parkinson's research P4 + From trials to treatments: Delivering the life-changing treatments of tomorrow P12 + Research update from Professor David Dexter P18
2 Progress | Spring 2021
CONTENTS
Progress is our free,
twice-yearly magazine
on the latest research
into Parkinson’s.
P4 | ON THE COVER
Recipe for a cure
We speak to Parkinson’s
experts to find out exactly
what’s needed and where
they’re pinning their hopes.
P12 | From trials to new treatments
Investigating the wide range of trials
currently happening in Parkinson’s.
P18 | Our research programme: an update
Professor David Dexter shares just some
of our Parkinson’s UK research highlights.
P22 | Take part in research
The latest opportunities to get involved
in research.
P26 | Ask the experts
Answers to Parkinson’s research questions.
You can find previous issues and
subscribe to Progress on our website
at parkinsons.org.uk/progress. For more
information on Progress or to help us shape
future magazines, contact our Research
team at: research@parkinsons.org.uk
020 7963 3964
Progress | Spring 2021 3
welcome
H
ello and welcome to Progress magazine.
As Director of Research at Parkinson’s UK, it’s
great to introduce this issue and share my reflections
on the current state of play in Parkinson’s research.
There’s no doubt that the past 12 months have been a testing time. The coronavirus
(COVID-19) pandemic has had a major impact, disrupting research right across the
globe and hampering fundraising efforts. But despite these challenges, Parkinson’s
research has delivered important advances in recent months and exciting new
projects have been announced.
At Parkinson’s UK we were able to protect our research budget and spend £8m on
life-changing research projects in 2020, including announcing two new clinical trials
towards the end of the year.
One is testing a vital new treatment for visual hallucinations in Parkinson’s. The
second, with US charity The Michael J. Fox Foundation, is testing a promising new
drug for dyskinesia. Read more about these trials on page 21. And throughout 2020,
the search for treatments that can slow, stop or reverse the progression
of Parkinson’s also continued at pace.
One major trial to report findings was the PASADENA study. This tested a new
therapy called prasinezumab, an intravenous injection targeting alpha-synuclein.
This offers hope of protecting brain cells and slowing the progression of Parkinson’s.
There were also promising signs that the therapy may improve thinking and memory.
There are more details on page 17.
Finally, I’m hugely encouraged by the results of a survey we conducted which asked
people with Parkinson’s how they feel about taking part in research during the
pandemic. We had an overwhelmingly positive response, with lots of great feedback
and learnings. And 91% said they would feel comfortable taking part in research
despite the current challenges and restrictions.
The determination of people living with Parkinson’s We’re
to continue driving research forward is a constant here for you
inspiration. Thank you for everything you do to throughout the
support the search for better treatments coronavirus (COVID-19)
and a cure. crisis. For the latest
information and support,
please visit parkinsons.
org.uk/coronavirus
Arthur
4 Progress | Spring 2021 Recipe for a cure We often talk about a cure for Parkinson’s. But what does this word mean and what do we need to make it a reality?
Progress | Spring 2021 5
A
cure can mean Ben Stecher It’s becoming increasingly evident
different things International that multiple factors are at play.
to different Parkinson’s These factors are possibly why
people. Some people advocate different people experience
might see a cure as differing symptoms, but more
something that can Ben was diagnosed with research is needed to unpick these
prevent Parkinson’s from Parkinson’s seven years ago. complexities. What this suggests
happening, while others He dedicates a lot of time to to Ben, and others, is that there
might see it as something shaping research and advocating is a need for a range of different
that can control every on behalf of people with therapies that can be used in
one of the condition’s Parkinson’s. He’s extremely combination to meet the needs
symptoms. Whatever knowledgeable, is in touch with of the individual and their specific
a cure may mean to you, many researchers, and has just form of the condition.
at Parkinson’s UK we’re written a book, Brain Fables.
driving research forward
“Parkinson’s is like a bottle
to find and deliver these
When we asked Ben what of water with many different
life-changing treatments.
a cure means for him, he strongly holes. Plugging one hole is
We spoke to Ben believes that a cure for Parkinson’s not going to stop the water
Stecher, an international will not be “one single thing that leaking out. We need to
Parkinson’s advocate, solves everything”. His journey embrace complexity if we
and Dr Patrik Brundin, to discover as much as he can are ever going to get to
a leading Parkinson’s about Parkinson’s has made where we want to be.”
researcher based in him realise the complexity and
BEN
the US, to get their variability of the condition.
perspectives. Seven
themes began
to emerge. Dr Patrik Patrik his perspective on finding
Brundin a cure for Parkinson’s, he echoed
Leading Ben’s comments.
Parkinson’s
researcher
“Parkinson’s is a highly
Dr Patrik Brundin is the individualised condition –
Deputy Chief Scientific Officer the factors that give rise
and Director of the Parkinson’s to it vary from person to
Disease Center at the Van Andel person. Because of this,
Institute in Michigan, and is a there likely won’t be a
hugely influential researcher in the single cure.”
Parkinson’s field. When we asked
PATRIK
6 Progress | Spring 2021
Seven essential ingredients make better treatments for Parkinson’s. which has gathered data over
up our recipe for a cure, inspired Patrik also thinks this is a very five years from 2,600 people
by our conversations with Ben important area of research. There with Parkinson’s.
and Patrik. A recipe is a simple is ongoing work to group people
way of thinking about what goes into subtypes based on their
into making better research and symptoms. For instance, some “We need to study real
trials happen to help find better people may have tremor as people. There is not
treatments for Parkinson’s. one of their main symptoms, enough research looking
while others may experience at people living with
non-motor symptoms such as Parkinson’s over time or
trouble with their memory, aging studies in general.”
sleep or smell. So how can we
BEN
study this? One answer is
to track a group of people with
Parkinson’s over time. More work is needed to continue
to build a more complete picture
of the subgroups, and to discover
“Understanding how how these impact on the rate
patients differ is critically of progression and how people
important. It is highly respond to different treatments.
likely that some degree
1. Subtyping of personalised medicine
will be the way forward.
Parkinson’s One can envision a future
where there are several
For Ben, the most important
identified subtypes, each
ingredient is to move away from
with their own specialised
the idea of Parkinson’s being
treatments. Certainly,
a singular condition. And with
understanding the stage
this, trying to understand why
of a person’s Parkinson’s
Parkinson’s affects people
will also be important.”
differently in terms of causes,
symptoms, progression, and Patrik
response to different treatments.
Ben describes Parkinson’s 2. Designing better
as a spectrum, where people Parkinson’s UK has helped clinical trials
living with the condition are to fund such studies, like the
spread along a scale rather ongoing Discovery Project at Understanding the subtypes
than existing in a singular group. the Oxford Parkinson’s Disease of Parkinson’s will help ensure
Centre. It’s following and new treatments are designed
Many believe that grouping monitoring over 1,400 people and tested with specific groups
people into subtypes of the with and without Parkinson’s of people in mind, making clinical
condition would help improve to build a picture of the different trials more efficient and likely
care and treatment options at an subtypes of the condition. to succeed. As well as changing
individual level. It could also help Another UK-wide initiative is the landscape of future trials,
accelerate the hunt for new and called Tracking Parkinson’s, looking back at existing clinical
Progress | Spring 2021 7
trial data may identify certain
subgroups of people within
a trial who responded better to
a specific experimental
treatment. Ben goes as far as
saying there may be cures that
already exist for individuals but
we need to match them together.
Such treatments include
“If we look at past trials, Ambroxol, which is being
for example the GDNF trial, investigated for its potential Research supported by
some people responded to boost brain cells in those Parkinson’s UK continues to
remarkably and others with differences in the GBA uncover why cells are lost in
didn’t. What can we learn gene. And a potential drug, Parkinson’s, so we can develop
to understand why some called DNL151, has been new potential treatments that
people responded better developed by Denali target the specific cause of
than others?” Therapeutics to target the the condition. While each one
BEN problems caused by the of these treatments may only
LRRK2 gene. It’s currently work for a subset of people
moving into phase 2 trials. with the condition, the hope is
Today, there are trials already that developing trials that take
under way aiming to target Ben believes this is a promising our individual differences into
a specific group of people with line of research that may even account will be the path to a cure.
Parkinson’s. For instance, by bear fruit in the next five
identifying people who have to 10 years.
specific genetic differences
that are linked to Parkinson’s.
“I think we will have some
While genetics isn’t the main better answers about
cause of Parkinson’s in the subtypes of Parkinson’s.
vast majority of people, we By that point some of
are learning more about how the phase 3 trials will be
differences in our DNA may be complete for LRRK2/GBA
linked to types of Parkinson’s. targeting treatments.
Hopefully we will have
In some people, small differences at least one therapy that
in certain areas of our DNA, will slow progression and 3. Improving the
such as the LRRK2 or GBA this will be a real proof of
genes, can contribute to an concept that clinical trials way we measure the
increased risk of Parkinson’s. designed for subtypes success of potential
This group of people, if identified, of Parkinson’s are the treatments
could make good candidates for way forward.”
therapies that are designed to Both Ben and Patrik believe
BEN
target the problems that these one of the main hurdles to real
genes are causing. progress is the lack of a reliable
8 Progress | Spring 2021
way to track the course of the This could lead to earlier
condition. A challenge that intervention, which could pave the
could be overcome by finding way for treatments that prevent
biomarkers for Parkinson’s. symptoms from ever appearing.
A biomarker is a measurable This is an area that Patrik is
change in the body that could particularly interested in and
help diagnose a condition and/ believes is vital in getting us closer
or measure whether it is getting to a cure for Parkinson’s.
worse or better. For example,
an increase in body temperature These targets include those
can be a sign of infection and looking to stop the build-up of
monitoring blood sugar levels 4. Enabling earlier harmful proteins that cause trouble
can help people with diabetes diagnosis and in brain cells and other damaging
manage their condition. agents that contribute to the
intervention causes of the condition.
At the moment, the success
Changes in the brain that
of clinical trials in Parkinson’s It is vital to understand these
are contributing to Parkinson’s
is measured using various underlying mechanisms but it’s
can occur many years before
motor and non-motor scores also important to understand what
someone experiences
that are determined after a makes someone more at risk
movement symptoms and
participant undergoes a series of developing Parkinon’s.
ultimately receives a diagnosis.
of questionnaires and tests.
Some people believe this is too Understanding more about the
Understanding the causes
subjective to accurately measure risk factors and earliest signs of
and early signs of the
the condition and inform whether the condition could lead to a way
condition is something that
a potential treatment is working to delay or even stop the onset of
is still being pieced together.
or not. Therefore, a lot of research the condition.
Increasing this understanding
is focusing on understanding
is vital to earlier and more Research, such as the Parkinson’s
more about Parkinson’s to
accurate diagnosis. UK-funded Predict PD study,
hopefully find a biomarker.
aims to understand more about
the earliest signs of the condition
“Focusing on developing
“The development of to potentially predict an
ways to slow or stop
a biomarker that reflects individual’s risk.
progression by targeting
the progression of the
the underlying mechanisms
condition in a rigorous There’s also a global study run
of the condition is a very
and reliable manner would by The Michael J. Fox Foundation
promising avenue. There
be a game-changer. called Fox Insight. It aims to collect
are many promising drugs
This marker could take a a range of information from people
that are currently being
number of forms, including with and without Parkinson’s to
tested against a variety
possibly a brain imaging understand what genetic and
of targets.”
marker or, even better, environmental factors might
a simple blood test.” PATRIK increase someone’s risk of
the condition.
PATRIK
Progress | Spring 2021 9
condition, ways to improve Research into DBS
“While genetics play an managing symptoms could help is continually evolving, with
important role, we know move us closer to a day when newer, more adaptable forms
that it is only a minor part people’s symptoms no longer of treatment being developed.
of the total risk landscape. get in the way of their day to
Being exposed to certain day activities. Another area of research
environmental factors that Ben singles out is cell
early on in life might replacement therapies – where
contribute to a series of “There’s a lot of exciting researchers are looking to find
changes in the body that research happening in a way to replace the dopamine-
lead to Parkinson’s later the area of symptomatic producing brain cells that have
down the line. Targeting control. DBS is an amazing died in Parkinson’s. If successful,
these changes, especially miracle for a lot of people, this could help increase
early on, has the potential and adaptive DBS dopamine levels in the brain
to give people more years systems could make this to in turn reduce symptoms
with fewer or even no an even better tool than of Parkinson’s.
symptoms, perhaps for the it already is.”
remainder of their lives. Ben acknowledges this research
BEN
This approach isn’t a ‘cure’ will take some time to come to
in the traditional sense, but light, as ongoing clinical trials will
the result could be much require time to ensure the safety
Ben believes these treatments
the same.” and possible long term benefits
will have the most impact in the
coming years and specifically and side effects of this type
PATRIK
highlighted the potential of deep of therapy.
brain stimulation (DBS).
“The new generation [of
DBS is the most common
cell replacement therapies]
type of surgery for Parkinson’s.
is much more advanced
It involves placing very fine
so we should see a much
wires into the brain to electrically
higher success rate.”
stimulate particular groups
of brain cells involved in BEN
controlling movement.
5. Managing the
symptoms of
Parkinson’s
As well as ongoing
research to find
ways to slow, stop
or reverse the
10 Progress | Spring 2021
Ben believes this needs to be
“The preliminary evidence
“tapped into more”.
that one can slow
progression through People living with Parkinson’s are
exercise, and possibly our driving force at Parkinson’s
even diet, is accumulating. UK and have a vital role in
It would be great if there shaping, steering and taking part
were large studies that in research. It’s essential that all
clearly could demonstrate research reflects this approach
benefit in a rigorous to ensure we are united in the
way. It is quite possible search for a cure.
that exercise and diet
have different effects
6. Lifestyle changes between people given the “Unlike researchers we
individualised nature can’t go to sleep and
While research into cell forget about Parkinson’s.
of Parkinson’s.”
replacement therapies continues, In a variety of different
one area of research that has PATRIK ways we understand
already been shown to help it better than anyone
with the management of else ever could. Patients
symptoms, and maybe even have a critical role to play
impact on the progression of for researchers to be
the condition, revolves around confronted with the
lifestyle changes. reality of what they are
working on.”
Exercise, diets and supplements
need to be better investigated BEN
to understand what role these
accessible and existing factors
could play in the search for a way What’s next for our
to live better with Parkinson’s.
recipe for success?
7. Working together We believe the recipe for a cure
has come a long way in the past
Finally, an ingredient that
few decades and we continue to
Research underpins research as a whole –
drive research forward in these
needs you and is vital to getting us closer
vital areas.
If you’re interested in to a cure – is for more researchers
taking part in research to work in partnership with
Alongside this, we are
looking for genetic people with Parkinson’s, their
accelerating the chances of
differences linked to carers and loved ones. This is
success by fast tracking the
Parkinson’s, read more vital to understanding research
projects with the greatest
about the PD Frontline needs and priorities.
potential to transform life for
study on page 23. people with Parkinson’s.
People affected by the condition
have an understanding that
researchers don’t have, andJOIN OUR RESEARCH NETWORK Ready to take the next step on your research journey? Join our growing online Research Support Network. Join today at parkinsons.org.uk/RSN • Join our community • Attend online and • Get involved in of over 5,000 people local Q&A events with shaping future affected by Parkinson's experts. And learn research by sharing helping us find a cure. about work in the lab. your Parkinson’s • Recieve our monthly • Take part in research. experience. Research Roundup From surveys to trials, • Connect with our email. Get the latest whether or not you local research interest news and opinions on have Parkinson’s. groups, or set up the science. a group in your area. “The next decade will herald a breakthrough in Parkinson's research. The RSN epitomises the true sense of working together for the good of the Parkinson's community.” Carroll Siu, Research Volunteer
12 Progress | Spring 2021 FROM TRIALS TO NEW TREATMENTS Researchers use clinical trials to test whether a new treatment works and is safe for people to take. These trials are the most costly and lengthy part of the whole research process. They represent years, if not decades, of scientific advancement.
Progress | Spring 2021 13
O
ne of the biggest The clinical trial Type of trial
landscape
88
myths in Parkinson’s
trials are
is that no new
focused on
treatments have been If you could see all the active
short-term
developed in the last 50 Parkinson’s clinical trials across
symptomatic relief
years. One of the biggest the world right now, how many
57
advances in the treatment would you count? A handful, trials aim to
of Parkinson’s came about 20, more? Would it surprise you modify the
in the 1960s with the that a paper written by a team course of
discovery of levodopa – a of scientists and Parkinson’s Parkinson’s progression
drug that remains the gold advocates found 145 active
standard in Parkinson’s trials last year?
medication. However, since Stage of trial
That’s a lot! But to really
51
then there have been lots
of other advances. Today, understand what this means we
these improve the quality need to know a little more about
of life for between seven the treatments being tested
and 14 million people with in these trials and what stage are in phase 1
Parkinson’s worldwide. they’re at in the pipeline. After all, (early safety)
66
clinical trials start small and focus
From surgical interventions on safety. It’s not until we get to
like deep brain stimulation, the larger, later stage trials that
to drugs that manage we really find out if a treatment
a myriad of symptoms, are in phase 2 (safety and
is effective.
Parkinson’s research is early efficacy)
28
delivering on its promise
of a brighter tomorrow. Testing drugs that
But this is a story that is just improve symptoms
beginning to get exciting. are in phase 3 (large scale
Inside labs around the Some of the Parkinson’s trials efficacy and safety)
world, scientists have bigger active today aim to improve
plans. They’re building on treatments that are already
foundations laid through available. They can improve our There are also trials into drugs
decades of discovery and knowledge about when best that might work better than the
delivering more drugs and to use different treatments, drugs currently available today,
therapies into clinical trials or deliver drugs in new ways. aiming to give better symptom
than ever before. relief, over longer periods, and
For instance, instead of being with fewer side effects.
Here, we take a look at the packaged into tablets, levodopa
remarkable breadth of these might be delivered as an Lots of new treatments are being
studies and the promise intestinal gel. Other drugs might developed to tackle the aspects
they hold to deliver the life- be administered as a patch worn of Parkinson’s that current
changing treatments on the skin that delivers a slow treatments don’t manage so
of tomorrow. consistent dose of medication well. These trials are focusing on
throughout the day. tackling both motor and14 Progress | Spring 2021
Scientific Clinical
discoveries trials
Drug discovery
non-motor symptoms. They
hope to manage some of the
most troublesome aspects of the Basic science Preclinical
condition, such as hallucinations
and uncontrollable movements Decades of
known as dyskinesia. The many discovery have
Developing
routes to a cure treatments provided important
insights into what’s
Testing drugs Trials into treatments that going wrong inside
which may slow slow the course of Parkinson’s the brain, as well as the
show how much genetic and environmental
the progression our understanding of the causes that increase risk. From
of Parkinson’s condition has progressed over treatments that stop the build
the last 50 years, and how far up of toxic proteins, to those
On the other side of the coin, science has come in this time. that rescue the miniature power
trials are developing treatments stations that keep our cells
that aim to slow, stop or even Researchers have now identified running, lots of areas of research
protective molecules, like funded by Parkinson’s UK are
reverse Parkinson’s.
antioxidants and growth factors now beginning to bear fruit.
(a family of naturally produced
We now know that a cure
proteins), that may have a role Tackling the underlying problems
is probably not going to be
to play in slowing progression. that cause the loss of brain
the same for everyone. But
Trials are currently underway to cells could stop the condition
ultimately, treatments that test the effect of delivering high in its tracks. But there are even
protect or replace precious brain doses of growth factors to the treatments in the clinical trials
cells and slow the spread of the areas of the brain affected by pipeline that could prevent
condition will be part of this cure. Parkinson’s. This could prevent Parkinson’s from even reaching
So how do researchers hope to further harm and even repair the brain, such as targeting
make this possible? damaged cells. early changes in the gut.Progress | Spring 2021 15
What’s next?
The research pipeline
From understanding what’s going wrong inside our Improvements in our
brain cells, to developing and testing new treatments to understanding of the condition
fix those problems. The research trial pipeline involves mean that we can now manage
hundreds of experts, scientists, healthcare and clinical its complexity better than ever
professionals, and people with Parkinson’s. before. But we know this isn’t
good enough. We know that
people with Parkinson’s
deserve better.
Clinical trials are tricky, and trials
New in Parkinson’s can be even more
medicine so. To deliver the next generation
of treatments as quickly as
Phase 1 Phase 3 Launch
possible, we need the whole
Parkinson’s community to come
together and help drive
Phase 2 Licensing research forward.
Not all trials will be successful.
And it’s impossible to know
Regulatory how long it will take for any
for Parkinson’s. Researchers
approval one treatment to complete the
are investigating the hidden
clinical trial process and be made
potential of drugs that have been
available to people. But we’re
developed for other conditions
incredibly optimistic about the
But it’s not just our like diabetes and Alzheimer’s.
vast array of possible avenues
understanding of Parkinson’s that Drugs with potential could be
leading to a cure.
has progressed. Achievements fast tracked through the clinical
in stem cell research have trial pipeline. And should be
allowed researchers to start the cheaper than developing
first cell transplantation trials a new treatment
in people with Parkinson’s. from scratch.
And developments in our
understanding of how our bodies
fight infections is leading to new
ways to use vaccines to activate
our own immune system and
help protect precious brain cells.
Finally there is a library of tens
of thousands of drugs that
have been developed for other
conditions, some of which could
be life-changing treatments16 Progress | Spring 2021
Three examples of cure based clinical trials
1 Transplanting
new cells into 2 Delivering naturally protective
proteins
the brain Growth factors are a family of remarkable molecules.
Today, there are several Research has shown that a number of these factors
early-stage trials in progress seem to be crucial for the growth, development
that are investigating stem and survival of the brain cells that are affected
cells for Parkinson’s. These by Parkinson’s.
include the trial in Kyoto, One of the major challenges is delivering these molecules
Japan that made the news deep into the brain where they’re needed. A recent
back in 2018. pioneering study, supported by Parkinson’s UK, tested
In this trial, the team aims a novel delivery system to achieve this. It involved
to transplant new brain cells, surgically implanting tubes in the brain to deliver GDNF
which have been made from (glial cell line-derived neurotrophic factor) directly to the
stem cells. And other trials affected brain areas with pinpoint accuracy, and this
are investigating how stem approach showed some promise.
cells can be used in different Today, there are a range of further studies under way
ways to benefit people around the world that are exploring growth factors,
with Parkinson’s. including trials using new and less invasive approaches
While these trials are at to deliver these important molecules to the brain.
an early stage, and mainly
focus on investigating the
safety of these approaches
in a small number of people,
3 Vaccines that combat Parkinson’s
Research has shown that there is a build-up
of a toxic protein called alpha-synuclein in the brain cells
positive results could mark a
that are lost in Parkinson’s.
significant milestone in efforts
to reverse Parkinson’s. There are multiple vaccines that have been developed
to target alpha-synuclein at various stages
of clinical trials.
Examples of these trials include two
phase 2 studies that, combined,
will test these potential therapies
in over 600 people with
Parkinson’s.Tell us what you think
of Progress magazine?
PASADENA trial
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progression of Parkinson’s also
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This major clinical trial tested a new therapy Other (please specify):
called prasinezumab, which is given via
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of many in development that aim to target 3. How could we improve Progress magazine
alpha-synuclein – a protein that forms sticky and what would you like to read about in
tangles and clumps inside the brain cells the future?
affected in Parkinson’s.
Prasinezumab has been designed to
recognise alpha-synuclein and help the brain’s
immune system to eliminate this damaging
4. After reading our magazine how likely are
protein. The hope is that removing excess
you to want to get involved in research?
alpha-synuclein could help to protect brain
cells and slow or stop Parkinson’s. Please circle 1 2 3 4 5
The results were not clearcut but
5. Are you already a member of the Research
encouragingly, people who received
Support Network (RSN)? If you are, you'll
prasinezumab did significantly better on receive regular Research Roundup emails
assessments of movement symptoms than from the Parkinson's UK Research team.
people who received a placebo (dummy
treatment) after one year. This offers hope Yes No I don’t know
that the therapy was protecting brain cells and
slowing the progression of Parkinson’s. There
were also promising signs that the therapy
Send us your answers
may improve thinking and memory. BY POST: Tear out this page and send it to:
Research team, Parkinson’s UK, 215 Vauxhall
Based on these encouraging findings, Bridge Road, London, SW1V 1EJ
pharmaceutical company Roche is now
exploring next steps for prasinezumab ONLINE: Fill out our quick questionnaire online
which will hopefully be further, larger trials. at parkinsons.org.uk/progress-2021
We’ll be keeping a close eye on this and other
disease-modifying approaches being tested
around the world and will report on any
important advances.18 Progress | Spring 2021
Our research
programme:
an update
Professor David Dexter, Associate Research
Director at Parkinson’s UK, shares updates from
the last few months.
S
ince joining Parkinson’s International global Parkinson’s research. By
investing in basic research and
UK four years ago,
investment to fostering global collaboration
I’ve had the pleasure
of shaping a research strategy accelerate research and multidisciplinary working,
that puts people with they aim to uncover the roots
At any time, day or night, of Parkinson’s and clear a more
Parkinson’s at the centre
somewhere in the world, direct pathway to a cure.
of everything we do.
researchers are working on the
With a growing number of next big discovery in Parkinson’s. Of the 21 new ASAP projects,
people getting involved, there’s One of the ways we can four teams are being led by
a real sense of collaboration. accelerate research is by working researchers who have benefited
The Parkinson’s community together. And technological from Parkinson’s UK funding.
is taking a leading role advances mean that it has never We’re proud that their new
spearheading the initiatives that been easier to collaborate on projects build upon early work
will change the future of living ideas, share data and results, supported by the charity.
with this condition. and bring together world
leading experts. Today we continue to
This, alongside an ever support research that lays
increasing understanding This mindset is at the heart of the foundations for future
of the causes of Parkinson’s, the Aligning Science Across developments in Parkinson’s. In
means a real momentum Parkinson’s (ASAP) initiative. fact we support over 30 different
is building in the research In 2020, ASAP injected a projects investigating every
community and beyond. massive $161m investment in aspect of the condition.Progress | Spring 2021 19
These projects will unlock
the treatments of tomorrow.
From the launch of more clinical
trials, to the delivery of new
treatments, we’re excited to
continue to see the impact of
research supported
by Parkinson’s UK.
in 2017. It’s an international
initiative that aims to fill a critical
Driving drug gap in drug development and
development turn our understanding about
forward Parkinson’s into new treatments.
If you’ve been following our Through the Virtual Biotech, THE PARKINSON'S
research for a while, you’ll know we’ve developed a powerful COMMUNITY IS
that, in addition to investing in global movement of scientists SPEARHEADING
world leading research projects, and supporters, investors and INITIATIVES TO
innovators. All driven by people
our aim is to take the bold risks
with Parkinson’s every step
CHANGE THE
needed to accelerate research.
of the way. We’re on track to FUTURE OF
That’s why we launched the invest at least a further £20m LIVING WITH
Parkinson’s Virtual Biotech in our Virtual Biotech and are THE CONDITION.20 Progress | Spring 2021
pushing to deliver a life-changing Our Research team has worked develop non-drug approaches
new treatment to people with hard to help clinical researchers for Parkinson’s. The idea behind
Parkinson’s by the end of adapt their studies so they this scheme is simple: we know
2024. Today, despite the global can continue in the face of that developing drugs that may
pandemic, the Virtual Biotech all the challenges caused by slow Parkinson’s takes time,
continues to go from strength to the coronavirus (COVID-19) but research into other ways
strength. You can see three of pandemic. This has ensured that of managing Parkinson’s might
the latest developments on the vital research isn’t put at risk. deliver treatments quicker.
next page.
We’ve also been busy adapting These other approaches may
our research programmes. include living aids, exercise, and
Supporting life- Last year we launched a brand physio, speech and occupational
changing research new grant scheme to support therapy, which already play a
and accelerate research to vital part in helping people
In 2020, Parkinson’s UK was able manage daily life and take
to invest £8m in life-changing control of Parkinson’s.
research, our largest yearly
investment in research yet. We’re getting ready to announce
the first successful projects from
But perhaps more importantly, DESPITE COVID, this new grant round in the near
we have continued to work in
partnership with people affected
WE'VE BEEN ABLE future. We’ll continue to take the
by Parkinson’s to identify where
TO ENSURE VITAL bold steps needed to improve life
our investment and support can RESEARCH ISN'T in the short term as well as looking
make the most difference. PUT AT RISK. for a cure in the longer term.Progress | Spring 2021 21
Our Virtual Biotech: three highlights from 2020
AUGUST OCTOBER NOVEMBER
In August, we announced In October, we launched In November, we
a further £1m investment our second clinical trial announced that we’re
in our partnership with to investigate if a drug joining forces with The
NRG Therapeutics. used to treat sickness Michael J. Fox Foundation
in chemotherapy to fund a third,
This research aims to patients could alleviate groundbreaking trial.
develop drugs that hallucinations for people
can protect and boost with Parkinson’s. The trial will investigate the
mitochondria. Mitochondria effects of a new drug for
are the tiny, energy- Ondansetron influences dyskinesia – a common side
producing batteries that visual processing in the effect of current Parkinson’s
power our cells, but in brain and its potential for medications. The drug,
Parkinson’s they don’t treating visual hallucinations called NLX-112, was
work properly. This may in Parkinson’s was first originally developed for pain
be central to why brain identified in the early 1990s. relief but biopharmaceutical
cells die. company Neurolixis spotted
This major new study will its potential for treating
Our partnership with NRG test the promising treatment dyskinesia for people
Therapeutics has already in over 200 people who with Parkinson’s.
made important progress in experience hallucinations.
identifying new molecules If successful, the positive We previously invested
which look very promising. results from the trial could to support Neurolixis to
This new investment open doors and see this conduct the final lab-stage
will enable us to develop repurposed drug – which testing of NLX-112. We
them further. The ultimate is already widely used in were then able to help them
ambition is to create a new the NHS – quickly progress secure approval to take it
drug, with the potential to to become an available forward into clinical trials.
slow or stop the progression treatment for Parkinson’s. It’s fantastic for Parkinson’s
of Parkinson’s, that we can UK to be able to support this
take forward into crucial next step. The trial
clinical trials. will take place in Sweden
and we hope to have results
within two years.22 Progress | Spring 2021 Take part in research Did you know you can contribute to important research studies? From sending off saliva samples to using an app on your phone, there are lots of research opportunities you can do from the comfort of your own home.
Progress | Spring 2021 23
GENETIC
RESEARCH
OBJECTIVE: To identify Parkinson’s
associated genetic changes in
people with Parkinson's – PD Frontline Who do the
researchers need?
The design of research trials is changing. We’ve found that 1,000 people diagnosed
people’s genetic sequencing has the potential to help personalise with Parkinson’s who
and improve research. live in the UK. Research is
conducted at home.
Professor Anthony Schapira and his research team at Queen Square
Institute of Neurology, UCL, are hoping to test potential therapies
that target genetic changes associated with Parkinson’s. What does the
research involve?
The team will identify people with Parkinson’s who have small You’ll need to register on the
alterations in their genes, such as LRRK2 or GBA, who can be PD Frontline website.
invited to take part in future research trials. There, you’ll be asked to
complete an online consent
form and a short 10-minute
“There is a lot of research at present focused on survey. Once you’ve
people with GBA and LRRK2 gene alterations, completed these steps,
with new treatments being designed specifically you’ll be sent a saliva sample
collection kit, which will be
for them, such as in our recent Ambroxol
posted to you with return
phase 2 trial. pre-paid packaging.
“Knowing whether or not someone with
Parkinson’s has one of these gene alterations may
enable them and their family to participate in clinical Interested?
Visit the study
trials of new treatments for Parkinson’s.”
website at
Professor Anthony Schapira, Head of Department www.pdfrontline.com
of Clinical and Movement Neurosciences, UCL or find out more at
Queen Square Institute of Neurology. parkinsons.org.uk/
PD-Frontline24 Progress | Spring 2021
CORONAVIRUS Who do the
ATTITUDES RESEARCH
researchers need?
2,000 people with and
without a diagnosis of
Parkinson’s over the age of
OBJECTIVE: To understand attitudes 16. Research is conducted
at home. Participants need
about coronavirus (COVID-19) and to have a smartphone and
health – ATTACH live in the UK.
Dr Anna Hood is a research fellow at University College London.
She’s investigating what people’s attitudes and behaviours What’s involved?
are towards the coronavirus pandemic, and the public health You’ll be asked to download
strategies that have been put in place to tackle it. the Air My Opinion app onto
your smartphone. Twice
The research aims to see if it is possible to monitor people’s feelings
a day, you’ll receive
using smartphone technology. The researchers also want to see
a notification to answer
how this potentially impacts mental health outcomes, particularly for
a 1-minute question about
older adults and those with medical conditions such as Parkinson’s.
how coronavirus is affecting
you. Once a month, you’ll be
asked to complete a short
“The ATTACH study seeks to understand
10-minute survey. If you
attitudes about COVID-19. have a monthly plan or pay-
as-you-go bundle there is
“By participating in this study, people will
no additional cost to you. If
significantly increase our understanding during your phone plan is traditional
this unprecedented time and help us see how pay-as-you-go, you’ll pay
to target future mental health interventions.” per SMS message.
Dr Anna Hood, Research Fellow,
University College London
Interested?
Download the Air My
Opinion app or find out
more at parkinsons.org.
uk/covid-attitudesProgress | Spring 2021 25
VISUAL PERCEPTION Who do the
RESEARCH
researchers need?
30 people diagnosed with
Parkinson's who can walk
independently.
OBJECTIVE: To investigate the influence
of Parkinson's on visual perception What does the
research involve?
Megan Readman, a PhD scholar at Lancaster University,
A one-off 30-minute virtual
is investigating how Parkinson’s may alter visual perception.
session via Zoom, Microsoft
This is the way someone processes information about their
Teams or Skype. In this
surrounding environment based on what they see.
session you’ll be asked
about your Parkinson's
The aim of the research is to understand how visual perception
history and you’ll complete
may alter the physical abilities of people with Parkinson’s and
a questionnaire about your
affect their daily life.
physical ability. You’ll also
be asked to estimate the
sizes of a number of different
“Parkinson’s is an incredibly diverse experience
household items.
to the extent that no two people’s journey with
Parkinson’s is the same. We as researchers know
a great deal about the motor effects of Parkinson’s, Interested?
however, the influence of Parkinson’s on non-motor Please contact
cognitive processes is not as well documented. Megan via email on
“This is what my research focuses on, the influence m.readman1@
lancaster.ac.uk or
of Parkinson’s on a host of cognitively based
phone 01524 592 947
processes including visual perception.” before 7 July 2021
Megan Readman, PhD Student, if you’d like to take
University of Lancaster part. Find out more at
parkinsons.org.uk/
perception
Find an approved research study you can join
Enter your postcode on our guidance. Our Take Part parkinsons.org.uk/
Take Part Hub. Studies can be Hub is regularly updated so takepartresearch
done from home, or safely on- please keep checking for new
020 7963 3964
site in line with coronavirus opportunities.26 Progress | Spring 2021
ask the
experts
Got a question about Parkinson’s research?
Want to know about the latest treatments,
trials or tips? Our Research team has the answers!
Q
Could the coronavirus
(COVID-19) pandemic lead
to a rise in Parkinson’s?
A
COVID-19 is a new disease and we’re still
in the very earliest stages of understanding
its full impact. However, there is no evidence
that the virus causes Parkinson’s directly.
To date, there have only been a handful of reports of
people being diagnosed with Parkinson’s following
COVID-19, and this could simply be a coincidence.
Previous research has suggested that some viral
infections may increase the risk of developing
Parkinson’s in the longer term. In the years following
the last major global pandemic, the Spanish Flu
in 1918, there was a significant increase in
Parkinson’s-like disorders.
It’s too soon to know whether COVID-19 could
lead to an increase in Parkinson’s in years to come.
But as the pandemic continues, it’s vital that the long Got a question about research?
term effects of the virus on the brain are a priority Email research@parkinsons.org.uk with
for research. the word “Progress” in the subject line.Progress | Spring 2021 27
With Parkinson’s, the best
Q Q
I know exercise to do depends on I came across
exercise is how the condition affects a non-invasive
meant to be you. But the message is the light therapy
good if you have same for everyone – go for it! treatment online. Is it
Parkinson’s. What At the moment we’re all worth it?
suggestions do you spending more time indoors,
have for what types which means our daily
A
routines have had to change.
of exercise to do? There are different types
This makes staying active of light therapy that have
and exercising all the more been proposed for people
A
important for our physical with Parkinson’s. Although light
Exercise is good and mental wellbeing.
for you. And it’s therapy is thought to be safe
especially good for Visit our website to find out with minimal side effects, we
you if you have Parkinson’s. more about different types don’t advise people seek out this
of exercise for people with therapy as a treatment. Overall
Whether you have Parkinson’s, including how the evidence so far shows that the
Parkinson’s or live with to stay active at home: effects can be variable and more
someone who does, there’s large scale trials are needed to
no one-size-fits-all approach. parkinsons.org.uk/exercise assess the long term benefits.
Q
Have the recent small scale trials,
carried out by Parkinson’s UK,
come to any final conclusions on
the benefits of Symprove for people like
myself with Parkinson’s?
A
The clinical trial of a drinkable probiotic called
Symprove is still underway and so we don’t yet
know if it is scientifically beneficial to people with
Parkinson’s. There is some early evidence that Symprove
may improve gut health in people with the condition,
and we eagerly await the results from the full clinical
trial to understand if this may impact on motor and
non-motor symptoms.
We don’t have an exact date for when the full results will
be available, but we’ll continue to keep you up to date with
news stories on our website and in Progress, and through
the Research Support Network.We are Parkinson’s UK. Powered by people. Funded by you. Improving life for everyone affected by Parkinson’s. Together we’ll find a cure. Parkinson’s UK 215 Vauxhall Bridge Road London SW1V 1EJ Free confidential helpline 0808 800 0303 Monday to Friday 9am-7pm, Saturday 10am-2pm (interpreting available) NGT relay 18001 0808 800 0303 (for textphone users only) hello@parkinsons.org.uk parkinsons.org.uk Parkinson’s UK is the operating name of the Parkinson’s Disease Society of the United Kingdom. A charity registered in England and Wales (258197) and in Scotland (SC037554). © Parkinson’s UK 02/21 (CS3508)
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