Earlier this year we launched a campaign to highlight the importance of taking part in Parkinson’s research. Thanks to your support we’ve seen an encouraging boost in recruitment to vital clinical studies.
Parkinson’s is the fastest growing neurological condition in the world. Currently, there is no treatment that can slow or stop the progression of symptoms. We desperately need new and better treatments.
In 2022 we launched a campaign to help increase recruitment to 5 clinical trials that were struggling to find people to take part. Thanks to the amazing support of the Parkinson’s community, all 5 of the featured trials saw a boost in people registering interest and getting involved.
With your help, we wanted to build on this so we can continue to speed up the search for new treatments and breakthroughs.
That’s why, on International Clinical Trials Day this year in May, we called upon the Parkinson’s community to get involved in one of 4 featured opportunities across the UK.
Clinical trials are simply research studies that involve people. In Parkinson’s research, this might involve trialling a new drug treatment or trying out a new device that helps manage your symptoms. Whilst some clinical trials require travel to a research site, many can be completed at home.
Drug and device trials are necessary steps towards new treatments, but there are still plenty of other ways you can make a valuable contribution to research. You can help research efforts by sharing your experiences in a survey or interview. Importantly, all participation is valuable, and moves us closer to new treatments and breakthroughs.
At Parkinson’s UK, we want everyone to feel empowered to take part in Parkinson’s research. Without a diverse and representative group of participants, our understanding of Parkinson’s is limited and we can’t find treatments for all.
Your impact on clincial trials
Thanks to you, all 4 trials we featured have seen a boost to their recruitment. Here are the latest updates from the featured studies.
Your opinion on digital health tools (filling in a survey)
Neuro Digital want to understand how people feel about digital health technology to support the care of people living with Parkinson’s. The team needed 200 people with Parkinson’s to complete a 30-minute survey, and with your help, they reached this target in just two months. In total, 250 people with Parkinson’s took part.
Early results from the study provide an in-depth overview of how people with neurological conditions, including Parkinson’s, currently use digital healthcare. These valuable insights into the challenges that people face when using digital tools, such as difficulties focusing and thinking, problems with dexterity and even a worsening of symptoms, will pave the way to produce new, accessible strategies tailored to people with neurological conditions.
In early 2024, Neuro Digital aims to further analyse the results to understand more specifically how people with Parkinson’s experience using digital health technology.
Device to help control drooling (testing a device)
Cue Band was an 8-week study to reduce drooling, a common experience of people with Parkinson’s. It involves wearing a device on your wrist which sends vibration prompts to help with swallowing. The device is linked to a mobile app which also helps to monitor symptoms.
Thanks to you, over 200 people with Parkinson’s successfully trialled Cue Band, and recruitment for this study has now ended.
Parkinson’s related psychosis (trialling a new medication)
CAN-PDP is a phase 2 clinical trial across England and Wales. The trial is investigating whether cannabidiol (CBD), the non-addictive and non-psychoactive part of the cannabis plant, can reduce hallucinations and delusions experienced by many people with Parkinson’s. The study needs 120 people with Parkinson’s who experience these symptoms to trial the drug.
Since our campaign, the study has made good progress. 31 people have been screened and 20 people have been recruited to take part. Unfortunately this study can’t be done from home, so we’re pleased to share that there are now 4 sites in Wales and 7 in England. Two more sites, one of which will be in Scotland, are due to open at the beginning of 2024.
This trial still needs people to take part. Learn more about the CAN-PDP trial.
Genetic testing (take part from home)
This year we asked you to take part in a genetic screening study, known as PD Frontline. Taking part in the PD Frontline study involves giving a saliva swab sample which is then used to look for changes in genes associated with Parkinson’s.
Thanks to your amazing response, over 1,000 people took part by providing a sample. Understanding more about who has these genes and how they might link to Parkinson’s will help inform future studies about who might be most appropriate to take part.
One of the reasons that we featured PD Frontline was due to its links with another upcoming trial, called ASPro-PD, which is being led by University College London and funded by Cure Parkinson’s, Parkinson’s UK and other partners. ASPro-PD involves testing a part of a cough medicine, called ambroxol, which could have the potential to slow down the progression of Parkinson’s. But in order to qualify to take part, individuals must undergo genetic testing with PD Frontline.
The ASPro-PD phase 3 trial has experienced delays in 2023. This is due to the need to reformulate the drug to ensure that participants can take fewer pills of ambroxol per day, whilst still receiving the correct dose. Once the drug reformulation process is complete, Cure Parkinson’s are committed to pushing this vital research forward in 2024. If you have any questions, please contact us at [email protected].
We can’t stop now.
By taking part in research, you are helping us speed up the search for new treatments. With your continued involvement, we can improve the lives of people affected by Parkinson’s and together, we can make a difference. Find out how to get involved on our Take Part Hub.