If you are living with Parkinson’s and are interested in research, you have the key skills needed to contribute to shaping research. 

Cure Parkinson’s was founded by four people living with Parkinson’s and the experiences and insights of people living with the condition continue to inform our work.

We involve people with Parkinson’s in reviewing and evaluating grants, in shaping studies, in evaluation of drug and research questions. We have worked with individual research teams to recruit patients to their advisory committees, and we have run patient public involvement workshops for specific studies.

Being able to share your knowledge of living with Parkinson’s, the individuality of your disease and explaining the impact of symptoms on quality of life is a valuable resource. If you have taken part in a study (online or in person) you may also have additional insights and be able to provide researchers with practical Parkinson’s friendly solutions. If you have a scientific or medical background, there can be opportunities to contribute with regulators or individual research centres.

By sharing your experiences, you can help shape the course of Parkinson’s research. 

Drs. John and Sue Whipps are members of the Peninsula Parkinson’s Research Interest Group (PenPRIG). They recorded a presentation about their journey from John’s diagnosis to their involvement in clinical trials, explaining the issues they dealt with along the way. They gave the presentation to their local Parkinson’s support group and answered questions from the audience. Their video is available to watch:

Other ways to get involved:

ACT PD – the next generation of clinical trials for Parkinson’s

We are looking for 10 patients and carers to join the Patient and Public Involvement and Engagement (PPIE) working group. By joining, you would ensure strong patient and carer input by becoming a representative in one of five working groups

Find out more

Cure Parkinson’s Council

In 2021 we intend to create the Cure Parkinson’s Council to help shape our research work. If you are living with Parkinson’s, or living with someone living with Parkinson’s and would be interested in joining this group which we anticipate will meet around four times a year, please email helen@cureparkinsons.org.uk to express your interest in applying.

‘Rallying to the Challenge’ – led by people with Parkinson’s

Our annual Rallying to the Challenge meeting, hosted in association with Van Andel Institute, is designed for and by people with Parkinson’s, advocates and care partners and explores how the Parkinson’s community can impact and accelerate research. The agenda for this meeting is set by people living with Parkinson’s who lead the meeting and host key interviews with researchers. Find out more about attending Rallying to the Challenge in 2021 and how you can get involved.

Attend a Cure Parkinson’s research meeting

Cure Parkinson’s hosts regular Research Update Meetings to keep you informed about the latest Parkinson’s Research. Find out more here.

PD Avengers – a global alliance of Parkinson’s advocates

The PD Avengers is a global alliance of people with Parkinson’s, partners and friends who are standing together to demand change in how Parkinson’s is seen and treated; and using their combined influence and skills to build a sense of real urgency to end the disease.

In partnership with the authors of the book “Ending Parkinson’s Disease”, find out more about joining this proactive group: pdavengers.com

If everyone with Parkinson’s were to communicate their experiences of living with Parkinson’s; if everyone participated in clinical trials; if everyone took the time to become more knowledgeable and was more committed to partnering the scientific community in the search for new treatments, then there is no doubt in my mind that progress can be accelerated in Parkinson’s research.

Tom Isaacs presented his views on patient involvement in research at the ‘Rallying to the Challenge’ meeting in 2015