People living with Parkinson’s, and their loved ones, are being urged by Parkinson’s UK to come forward and take part in vital research, the results of which could transform the lives of thousands with the condition.
Parkinson’s is the fastest growing neurological condition in the world and affects around 145,000 people in the UK alone. Ahead of International Clinical Trials Day, Saturday 20 May, Parkinson’s UK is launching a new campaign, Parkinson’s Research Needs You. The ambition is to show the impact people can have on research and boost sign-ups to groundbreaking studies.
Parkinson’s research studies are varied and are accessible to many people. The findings could discover if a new treatment works, if it is safe, or how it interacts with other treatments and health conditions. Parkinson’s affects people of all ethnicities, and the charity particularly hopes to recruit people from underrepresented minority ethnic groups. According to 2021 Census data, over 18% of people in England and Wales belong to a Black, Asian, mixed or other ethnic group, but research studies often do not include them. Their experiences are vital in the global search for a cure.
Parkinson’s UK is looking to recruit people of all ethnicities for its range of studies. These are just four of those for people with Parkinson’s, currently looking for new participants:
● Cue Band – for people who experience drooling, the study involves a wrist-worn device that sends vibration prompts for swallowing and helps to monitor symptoms.
● Neuro Digital – a postal survey for people with Parkinson’s looking at their use of digital health technology.
● CAN-PDP – a 12-week study examining whether cannabidiol is safe for people with Parkinson’s-related psychosis. Carried out at selected hospitals in England.
● ASPro-PD – a home-based clinical trial investigating the potential of ambroxol, a component of some cough medicines, in slowing down the progression of Parkinson’s.
Kuhan was diagnosed with Parkinson’s over ten years ago, on his 38th birthday. He lives in south-west London. He recently spoke on his podcast about taking part in research.
“There’s a lot of great stuff happening in Parkinson’s research but it can only come to fruition if people come forward and get involved in trials. Not all research is about clinical trials, and not all clinical trials are about drugs. Most of my involvement these days, since Covid especially, is done online. So it might just be a Zoom call, filling out a survey, or taking part in a focus group. You’re just more informed at the end of it.”
Kuhan has also been involved in the Parkinson’s UK Race Equality in Research initiative, the aim of which is to understand barriers and drive up participation from under-represented communities, particularly from Black, Asian and mixed heritage communities. He has hosted and been a panellist at several events, sharing his story and encouraging people to consider taking part in research. “When the community comes together, cutting through those barriers, we can achieve so much more.”
Naveena Kapur, Research Communications Manager at Parkinson’s UK, said:
“We would love to empower more people to come forward so we can all move towards better treatments and, ultimately, find a cure for Parkinson’s. Research unlocks so much potential in our search, and people with Parkinson’s and their loved ones are a vital part of the team. Our studies are often simple, local and even home-based, and every single participant will take us even closer to finding the answers.”
To find out more about the range of Parkinson’s UK research studies, and to sign up, please go to the Take Part Hub www.parkinsons.org.uk/research/take-part-research.
