10 Years of working together towards a cure

A central objective of Parkinson’s UK is to communicate, collaborate and involve people affected by Parkinson’s in everything we do. That promise includes research. Our mission to find a cure and better treatments has to mean putting people affected by Parkinson’s at the centre of our research.

That’s why the Parkinson’s UK Research Support Network was born nearly 10 years ago. Designed and created in partnership with a passionate group of people affected by the condition, its aim is: to bring together people who are driven to help find a cure and better treatments for Parkinson’s.

And have we brought people together? We started out with a couple of hundred members with a clear vision of what we could achieve together. Today, the Research Support Network has 6,000 members. So we must be doing something right! The Network is growing and succeeding because what started as simply aspirations have been transformed into a focused programme that supports people to get involved in research in 3 main ways.

Get connected to Parkinson’s research and the scientists carrying it out

All too often, research can feel distant and inaccessible. People may not know what’s happening near them and how they can contribute. The Research Support Network connects people to information, scientists and opportunities to support research locally.

Members get all the latest Parkinson’s news and opportunities to get involved delivered straight to their inbox by email. A vibrant programme of events, lectures and talks up and down the UK, and streamed online, is giving more people than ever the chance to hear first-hand from researchers about their work.

What’s more, a growing movement of volunteers is working to bring research to people at a local level. Research Champions are spreading the word and supporting others to get involved in Parkinson’s UK groups. Meanwhile, Research Interest Groups have sprung up around the country, run by volunteers and researchers to raise the profile of, and engagement in, research regionally.

Marc van Grieken, Chair of the Dundee Research Interest Group, said:

"I believe that as people living with Parkinson’s we must do everything we can to influence and support the research being done to develop better treatments in the short term and ultimately a cure.

"Our Group connects Parkinson’s researchers at the University of Dundee with people living with the condition. We work together with some fantastic researchers to share information about their work with the community, and to bring the opinions of people with the condition to their research.

"The relationship we’ve developed with the researchers is absolutely invaluable and goes beyond science. It is inspiring and gives us hope. When I signed up to do the Great Scottish Run in Glasgow, 8 researchers from the university joined to support me in raising funds and awareness. The more we’re able to work together and break down any remaining barriers between research and people with Parkinson’s, the faster we’ll find the solutions we need."

Take part in clinical trials and studies

Although many people affected by Parkinson’s are keen to take part in research, many studies still struggle to find the participants they need. Recruitment issues slow down research and can even mean that studies fail altogether.

It’s a problem the Research Support Network is working to solve. A dedicated team made up of volunteers, researchers and staff is driving forward work to raise awareness of the importance of participation. They are developing tools and resources to make taking part in Parkinson’s research relevant and accessible to everyone.

One of the major barriers they identified to people taking part was simply being able to find opportunities in their area. So in 2017, Parkinson’s UK launched the Take Part Hub: a simple, searchable list of UK studies. The hub is designed to be as user-friendly as possible. All people need to do is enter their postcode or town to start browsing research opportunities near them.

The Take Part Hub has been a huge step forward. In our most recent survey, almost half of the Research Support Network told us they had taken part in research. But not everyone with Parkinson’s is online. So we’re now working to raise awareness with healthcare professionals, encouraging them to use the hub to highlight opportunities to their patients.

Dr Penny Foulds, University of Lancaster and MAC Clinical Research, said:

"We recently worked with Parkinson’s UK to help find participants for a phase 1 clinical trial that is being carried out in hospitals across Europe. The study is testing an experimental new drug, which aims to reduce the activity of a key protein called LRRK2 that is hyperactive in Parkinson’s. The drug has the potential to slow the progression of the condition.

"Phase 1 studies can be challenging to find participants for because they often require a major commitment. In our case, participants need to stay in hospital for several days at the beginning and end of the study to allow us to closely monitor their response to the drug.

"Initially we were quite concerned that we might not be able to find the 12 participants we needed within the required timeframe. If that had happened, we might have had to cancel the study at our hospital and lose the opportunity to be involved in developing this cutting-edge new therapy.

"We reached out to Parkinson’s UK who were able to share information about the study with the community. As a result, we actually ended up recruiting all the participants we needed well before our deadline, which was absolutely fantastic.

"Our success in recruiting to this study means we’ll be an attractive partner for future Parkinson’s trials of new treatments. We need to make the UK a great place to do these groundbreaking studies otherwise people with the condition will miss out."

Have your say on what research is needed and how it is done

People with Parkinson’s and their loved ones are the experts on living with the condition. Through the Research Support Network, your voices are heard in research both at Parkinson’s UK and beyond.

Since the 1980s, people living with Parkinson’s have been involved in deciding on the research that the charity funds. Our volunteer lay grant reviewers assess every application for funding and their scores and comments are given equal weight to those of the scientific reviewers.

In 2014, we partnered with the James Lind Alliance to carry out a Priority Setting Partnership with people affected by Parkinson’s, their families and health care professionals. The result was a list of urgent priorities for improving everyday life that has resulted in research into areas of unmet need, including mental health, balance problems and continence issues.

More recently, the Research Support Network has been enabling researchers to work with people affected by Parkinson’s to develop, inform and shape their work. This has now developed into a world-leading Patient and Public Involvement programme. The programme has over 100 trained volunteers using their insights and experiences to make research more relevant, focused and practical for people with Parkinson’s.

We’re leading people-powered research, including bringing companies together with people affected by Parkinson’s to find better treatments and a cure. Alongside the Parkinson’s Foundation, a charity in the United States, we’re enabling people living with Parkinson’s to work with the global pharmaceutical company UCB, helping to guide and shape their research and development in Parkinson’s.

Kate Trenam, UCB’s Patient Advocacy Group Lead for the UK, said:

"Our collaboration with Parkinson’s UK and engagement with people affected by Parkinson’s is invaluable. Our scientists work hard in finding innovative treatments, and by working with people who live with and understand Parkinson’s, we’re able to develop medicines that may really make a difference to their lives."

What next?

Huge progress has been made in the last decade to inspire more people than ever to get involved in the search for better treatments and a cure for Parkinson’s. But to accelerate progress we need to continue to do more and expand our reach further.

The Research Support Network Development Team, made up of volunteers and staff, helps provide thoughtful leadership on opportunities and priorities and has been helping to shape the Network from the start. But what the Network can achieve in the coming years will be down to your energy and enthusiasm as members. Together, we will find better treatments and a cure, faster. Join the Network and help us get there.

"As co-chair of the Research Support Network Development Team, I personally believe that 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