2021 research highlights

Compared to the hiatus of 2020, for many of us, in 2021 life started moving again. We have adapted and are learning to live in a world that feels a little different than before. And perhaps in doing so have regained a focus for the things that matter most in life.

Along with the world around it, the cogs of research also started to pick up speed. Parkinson’s research was able to weather the storm through the worst of the pandemic. And it has also adapted, making some major steps towards being more united and focused on what matters most to the Parkinson’s community.

So, in a year that saw so much change, what are our stand out moments?

Uniting to accelerate the research that matters most

We started 2021 by publishing work highlighting the symptoms that matter most to the Parkinson’s community. Almost 800 of you took part in the survey that the publication was based on. The major findings of this work were:

• Tremor was the most reported symptom that impacted people’s lives.
• Non–motor symptoms, including problems with psychological health, fatigue, cognitive function and pain were common even in the very early stages of Parkinson’s.
• People who’d lived with the condition for 10 years or longer reported problems with walking, balance and falls, speech problems, freezing and dyskinesia.

Publishing this work is just one way we’re making sure that what matters to patients is communicated and at the heart of research to develop better treatments, management strategies and care.

This set the theme for the rest of the year, where our achievements were made possible alongside the dedicated work of our volunteers to ensure research is shaped by people affected by Parkinson’s every step of the way. One standout moment was our online event for the Parkinson’s Community which focused on improving lives through research: Par-Con 2021.

The event saw over 2,300 people register to watch the talks with special guests spanning the breadth of the research field.

Catch up on the conference on the Parkinson’s UK YouTube channel.

Another triumph was the launch of our Staying Connected Toolkit that aims to improve communication between researchers and study participants. Something you told us was important. 

With your help, in 2021 we have also worked with a variety of researchers to shape the planning and design of their studies. And we collaborated with other charities and biopharmaceutical companies to ensure their work is representative of the needs and wants of people living with Parkinson’s.

Here are just a couple of partnerships where the voice of those with Parkinson’s has taken centre stage:

• UK-based pharmaceutical company 4D pharma is working with Parkinson’s UK to guide their upcoming trial looking at targeting the gut.
• Biotech Clexio teamed up with us to better understand sleep problems in Parkinson’s ahead of their upcoming trial.

Funding the most promising research

By the end of the year, we plan to have spent £8.3m towards research this year.

We continue to accelerate research towards new treatments through our pioneering drug development arm of the charity called the Parkinson’s Virtual Biotech, with 8 active projects from drug development to clinical studies. Here were the announcements from this year:

• February: We committed £800,000 and launched a new company, Vivifi Biotech, to plan a possible new trial of GDNF.
• March: A pioneering partnership with the University of Sheffield received a £1.2m investment to develop a drug to protect dopamine-producing brain cells.
• August: We invested an additional £1m in NRG Therapeutics Ltd's mitochondrial drug development programme.
• December: With a £3m investment, we launched a new programme to find ways to target inflammation in the brain to slow or stop the progression of Parkinson's.

As well as this vital work looking to find better treatments and a cure, we are also investing in research into non-drug approaches that have the potential to transform lives.

Some of the projects that have started this year focus on:

• A weight–shifting strategy that may help overcome freezing.
• A speech therapy designed to aid communication.
• A wrist worn device to prompt swallowing.

Progress towards new treatments

Many different clinical trials for Parkinson’s edged forward this year. Including a number of trials we’re supporting through our Virtual Biotech. They will continue into 2022 moving us closer to our ambitious aim to deliver a life changing new treatment by the end of 2024.

Updates:

• Investigating cannabidiol (CBD) for people with Parkinson’s associated psychosis. The first stage is almost complete and the researchers hope to take the best dose of CBD forward into the second stage of the study early next year. You can read more and watch a clip from a short BBC documentary on our blog.
• A trial to understand the potential benefits of ondansetron for people with Parkinson’s or Lewy Body Dementia who experience hallucinations started recruitment this year and is still looking for people. Find out more about the trial and take part.
• Just this month the study to assess the drug NLX-112 for dyskinesia started recruitment in Sweden. Read the news story about Neurolixis phase 2a clinical trial.

Taking steps towards race equality in research

Earlier this year we launched a collaborative project to work with people from underrepresented communities and research professionals to drive real and lasting change to take steps towards making research more representative of the whole Parkinson’s population.

Key aims were set out for this project:

• What steps can we take to make research more accessible, engaging and relevant to people from Black, Asian and Mixed race backgrounds?
• What steps can we take to ensure studies and trials we support proactively reach out to people from these backgrounds?
• How can we set clear and measurable objectives to ensure continued focus and resources for this work?

Powered by people

We have now set up a steering group to power this work made up of people affected by Parkinson’s and research professionals from Black, Asian and Mixed race backgrounds, as well as colleagues from Parkinson’s UK.

We’ve also teamed up with leading patient engagement organisations COUCH Health and Egality Health, to help ensure we reach and involve as many people as possible from these underrepresented groups. Click the story below to read more.

It has been quite a year, and I hope these highlights give you a flavour of the progress we’re making. Our network of people dedicated to Parkinson’s research is continually growing and we look forward to carrying this momentum into 2022, because together, we can find better treatments and a cure.

Thank you for supporting research!

Wishing you happy holidays and a great new year!

From the Parkinson’s UK Research team.