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.
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 firstname.lastname@example.org to express your interest in applying.
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 to explore 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 Rallying to the Challenge in 2021.
This NIHR guidance summarises what an under-served group is, a roadmap suggesting intervention points to improve inclusion, examples of under-served groups and example barriers to inclusion. It then provides a suggested framework of questions to guide the deliberations of funders, researchers and delivery teams as they design and assess clinical research proposals, and ends with examples of good practice and other resources to guide teams seeking to engage with, and improve inclusion of, under-served groups in clinical research.
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:
The research committee of PD Avengers needs your help to develop Sparks of Experience. They want to collect all sorts of Parkinson’s thoughts and experiences from around the globe and highlight them to researchers and funders. Your experiences could provide the inspiration for a new direction for research and that so far elusive key to unlocking the mystery of Parkinson’s.
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 science 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. This has been the case recently, where a group of Parkinson’s researchers and people affected by Parkinson’s together with funders have been developing a new type of clinical trial called Multi Arm, Multi Stage, or MAMS for short. In the video below, Dr Camille Carroll explains how MAMS can enable several Parkinson’s therapies to be assessed simultaneously, and those that are promising can be taken seamlessly and quickly in to phase 3 trials and therapeutic use.
Other ways to get involved:
Drs. John and Sue Whipps are members of the Peninsula Parkinson’s Research Interest Group (PenPRIG). Their journey from John’s Parkinson’s diagnosis, to their involvement in clinical trials, is also available to watch below.
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, Late President and Co-founder, Cure Parkinson’s