People powered research: our impact

Explore some key insights, reflections and impacts that have come as a result of researchers working closely with the Parkinson’s community.

When people with Parkinson's and their loved ones help shape research, it leads to research that’s more accessible and focused on the needs and priorities of those it is ultimately for.

We’ve supported researchers to work with the Parkinson’s community on a number of projects, resulting in real impact. Take a look at these examples.

To help us focus on what matters most, we've worked on 2 surveys for members of the Parkinson's community. They helped us come up with a list of priority research areas for improving everyday life in the short term.

These priority areas will help direct research efforts in improving everyday life with Parkinson’s.

In 2019 we surveyed over 700 people with Parkinson's and held a workshop to understand their views on the idea of offering a genetic test to people newly diagnosed with the condition. 

Read the report on genetic testing.

We hosted a workshop with biopharmaceutical company UCB to understand what people with Parkinson's, and those that support them, think about the design and packaging of potential Parkinson's medication.

Read the blog to find out what people said about Parkinson's medication

Together with biotech company Clexio Biosciences Ltd, we surveyed nearly 400 people with Parkinson's to understand their experiences of sleep problems and how they impact their daily lives.

Read the blog to understand more about sleep problems in Parkinson's.

Neurosurgical trials ask a lot from participants, so it's important that they're designed to meet their needs and expectations.

We worked with our PPI group to co-create reflections and recommendations on PPI in the GDNF neurosurgical trial. We then ran 2 online workshops to co-design a support package for participants in neurosurgical trials

Read the paper on PPI in a neurosurgical trial.

In a partnership sponsored by pharmaceutical companies UCB and Novartis, we worked with people with Parkinson's and the Parkinson Foundation to develop a booklet designed to support someone recently diagnosed with Parkinson's. 

The booklet talks through what to expect after diagnosis, tips on living well, and then discusses research opportunities that are available to people who have been recently diagnosed with Parkinson's. 

Read the booklet for those newly diagnosed with Parkinson's.

Patient and public involvement in research

We can support you to involve people with Parkinson's in a meaningful and timely way, whether you're applying for funding or conducting your research

Apply for support