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: