World Parkinson’s Day set to spark Scottish awareness of clinical research journey
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Share your spark this #WorldParkinsonsDay
11th April 2022
A new international symbol of awareness is set to inspire Scots on World Parkinson’s Day – in the shape of a simple spark.
With the fastest-growing neurological disease on the planet in the spotlight, the spark is intended to electrify a powerful movement, transforming how we think about the disease.
NHS Research Scotland’s Neuroprogressive and Dementia Research Network (NRS NDN) is encouraging you to ‘share your spark’ on Monday 11 April to help end Parkinson’s and spread global awareness using the hashtags #WorldParkinsonsDay and #TheSpark.
On the World Parkinson’s Day website you are invited to download and share images and messages with friends, family or via social media accounts like Twitter, Instagram, Facebook, and TikTok.
On Monday 11 April, NRS NDN – which supports clinical research into neuroprogressive diseases across Scotland – is further keen to communicate the message that it wants to increasingly involve Scots in all aspects of Parkinson’s research.
Through their ‘Partners in Research’ Patient and Public Involvement (PPI) group – a term coined by a Parkinson’s-diagnosed member of the group – NRS NDN enables those with Parkinson’s disease (and other neuroprogressive conditions) to have a say in which research is prioritised, and how this research in Scotland is conducted.
Alongside this, and in line with the Network’s 2022 – 2027 strategy, NRS NDN are working to ensure that everyone has equity of access to clinical research opportunities, regardless of whether they live in remote or rural communities, or what their social class, gender, religion or ethnicity is.
Yet to find a cure
Parkinson’s is a progressive degenerative neurological disease and researchers are yet to find a cure.
While advancements in treatment can improve the quality of life of those with the disease, they must navigate its ongoing impact on their health and well-being, and the risk for many is high.
The World Health Organization (WHO) reports, “Neurological conditions are the leading cause of disability and the second leading cause of death globally, accounting for nine million deaths per year.”
Parkinson’s is expected to surpass Alzheimer’s disease as the dominant neurological condition in the world within 20 years.
It is indiscriminate of gender, ethnicity, geography and age – indeed, up to 10% of people with Parkinson’s are diagnosed in their 40s or younger.
Marc, a member of the Network’s ‘Partner’s in Research’ group, said: “I think it is important to participate in research because a cure for Parkinson's disease will only be found by those means. People with Parkinson's are best qualified to describe and share experiencing progression and effects of Parkinson's disease with scientists. I look at it like teamwork: working as a team gives us a little more sense of control over our illness and it is of course very encouraging to experience the commitment of researchers who are working day and night.
“Look at the teamwork and commitment by scientists and willingness of people to take participate in clinical trials which led to finding a Covid 19 vaccine. This could not have happened without involvement of those affected.”
An outreach event will also be taking place at the Royal College of Physicians of Edinburgh on Saturday 11 June, organised by the Scottish Parkinson’s research interest groups and supported by NRS NDN.
Furthermore, Nobel Laureate Randy Shekman from the University of Berkley will visit Scotland and deliver a public lecture organised by the Parkinson’s UK Research Interest Groups at the Royal College of Physicians in Edinburgh (RCPE) on Saturday 11 June, 2022.
His talk ‘Parkinson’s disease: Up close and personal’ can be attended in person and will also be streamed. More information of how to sign up and attend will be published soon, including by the Dundee Research Interest Group and the Royal College of Physicians of Edinburgh (RCPE).
Randy Shekman is chief executive of Aligning Science across Parkinson’s (ASAP) – a funding stream that gave $9million to Professor Dario Allesi and his colleagues in the MRC Protein Phosphorylation Unit at the University of Dundee.
The Neuroprogressive and Dementia Network believes that to advance understanding of Parkinson’s and potential new treatments, inter-disciplinary research is crucial.
Backed by NRS NDN, a wide range of research studies are conducted across Scotland within the NHS and care home settings including research into the underlying mechanisms and causes; prevention; new symptoms; disease-modifying treatments; and better care.
NRS NDN supports researchers from across a range of disciplines and delivers this research across Scotland in a wide range of healthcare settings, including primary and community care, mental health services and acute hospitals.
- Follow #WorldParkinsonsDay and #TheSpark on social media
- Visit the World Parkinson’s Day website
- Find out more about NRS NDN, including their 2022 – 2027 strategy
- Find out more about Partners in Research, the NRS NDN PPI group
- More information for patients, carers and the public on clinical research