The development of new Parkinson’s treatments is only possible if everyone is part of the research process. We need your help to push promising research forward.
At Parkinson’s UK, we’re committed to getting the Parkinson’s community new treatments, faster. But we can only do that with your support.
If research studies can’t find the people they need, research can’t progress. The more people who get involved, the sooner we’ll be able to find better treatments and a cure.
That’s why this International Clinical Trials Day on 20 May, we’re highlighting the importance of taking part in research studies.
Parkinson's research doesn’t always involve taking a new drug treatment. Clinical research simply means any study that involves people.
Why is it so important for everyone to be part of research?
To learn more about Parkinson’s and to find new Parkinson’s treatments, we need everyone. People with Parkinson’s, people without Parkinson’s. People with different symptoms. People of different ages, ethnicities and genders. If research doesn’t represent everyone, we can’t create treatments for all.
Tincy is a nurse and lives with Parkinson’s. She said:
"I take part in research to help the whole Parkinson’s community and give hope for future generations. People from all communities need to get involved, so researchers can solve the puzzle and find a cure. Taking part in research is not always easy, it might make you feel anxious but with support from the research team, friends and family, you will be able to move forward and make a difference. If you aren't in it, you can’t win it."
Being part of a research study can also help connect you to others in the Parkinson's community. You may be invited to visit a research centre and have dedicated time with a research or healthcare team. Or have the opportunity to ask questions about the condition.
Kuhan has taken part in a number of research projects. He said:
"My reason to take part in research is a selfish one. I want to help find ways to live well with 'my' condition. Along the way I’m learning more, connecting with others and engaging with research and specialists in the field. It’s quite satisfying, I feel like I’m contributing, and making a difference in my own way."
What does taking part in research look like?
Research studies come in different forms, so you can take part in research that is best suited to you. It can vary from filling in a questionnaire, sharing your experiences, testing an app or trialling a drug. Some research can be done from home, while other opportunities will involve visiting a hospital or research centre. Read more about taking part in research on our Take Part Hub.
What trials could you take part in?
Research comes in lots of different shapes and sizes and different studies need different people to take part. Some might be looking for people who are recently diagnosed or with a family history of Parkinson’s, others might be looking for people who’ve had Parkinson’s for a while and are experiencing more complex symptoms.
The key is finding research that suits your stage of the condition, the symptoms you experience and that will fit in with your life.
We’re featuring 4 research studies with a range of criteria. Click on the study links for full details of what’s involved in taking part, and how to register your interest directly with the research teams.
If none of these trials are suitable, you can find more opportunities on the Take Part Hub. Enter your postcode to find trials near you or those you can take part in from home.
1) Slowing down the progression of Parkinson’s
ASPro-PD is a phase 3 clinical study investigating the potential of ambroxol for slowing down the progression of Parkinson’s. The study is recruiting people with Parkinson’s between the ages of 35 and 75 who have been diagnosed in the last 7 years. In order to qualify to take part, you will need to undergo genetic testing with PD Frontline. Learn more about PD Frontline and the ASPro-PD trial.
2) Parkinson’s-related psychosis (trialling a new medication)
CAN-PDP is a phase 2 clinical trial across England and Wales, investigating whether cannabidiol (CBD), the non-addictive and non-psychoactive part of cannabis, can reduce Parkinson’s-related psychosis such as hallucinations or delusions. The study needs 120 people with Parkinson’s who experience symptoms of psychosis over 40 years old. Learn more about the CAN-PDP study.
3) Device to help control drooling (testing a device)
Cue Band is an 8-week study for drooling looking for 100 people with Parkinson’s. It involves wearing a device on your wrist which sends vibration prompts to help with swallowing. The associated smartphone app also helps to monitor symptoms. You will be able to keep the wrist-worn device. Learn more about the Cue Band study.
4) Your opinion on digital health tools (filling in a survey)
Please note that this study has reached its recruitment target and has now closed. Neuro Digital want to understand what might encourage or discourage people from using digital health technology to support the care of people living with Parkinson’s. They are looking for 200 more people with Parkinson’s to complete a 30-minute survey, online or by post.
Hear from those who have taken part before
Barry and Brenda, who took part in the first part of the CAN-PDP trial, said:
"The trial gave us hope. Barry’s hallucinations almost completely left throughout the trial. They did not return until at least a month after the trial ended. We are now eagerly awaiting the second stage and are on the lookout for any other clinical trials that may help Barry and others.
"Drug development cannot happen without people like Barry putting themselves out there and getting involved."
Phil, who is taking part in Cue Band, and his wife, Mary, said:
"We didn’t know it was possible to take part in research from home, we’d never really thought about it. We wouldn’t be able to travel to a research centre now, so Cue Band was an easy and accessible way to take part and lend our support to Parkinson's research. Phil has found the device helpful, and it’s nice to get involved in something that doesn’t mean taking another pill."
Joe, who took part in PD Frontline, said:
"PD Frontline was very easy to take part in. It was a very simple, painless test, and the instructions were easy to follow. I also learnt a lot about my condition and genetics. The team handled questions about genetics very delicately, answering in a clear way so that I always knew what was happening, and didn’t need to worry unnecessarily.
"Taking part in research, it’s like a team sport. It’s like I matter again, I’m getting involved in something that doesn’t just benefit me."
Ron took part in a clinical trial in January 2023. He said:
"I was diagnosed in 2008, but thanks to medication, my symptoms have been kept at bay. This would not have been possible without people in the past taking part in research studies to test the drug that helps me today. As a thank you to the past and a contribution to the future, I decided to take part in a clinical trial."