What People With Parkinson’s Disease Really Want

What’s Most Important to People With Parkinson’s?

These people’s choice awards for Parkinson’s provide a simple solution to a complex problem — ensuring that research done by scientists focuses on the issues that are of greatest concern to people living with Parkinson’s. The scientists who study Parkinson’s are a dedicated and talented group, but their work can benefit from the insights from the other experts — those living with the disease 24 hours a day, seven days a week. Our solution was simply asking those who live with the disease, “What is most important to you?”

When Ann answered this question in 2014 along with 300 others in the first Community Choice Research Awards survey, it was clear that aspects of the disease viewed by people living with Parkinson’s as most important to solve (in addition to the long sought-after cure) differed from the aspects most researchers are studying, such as tremor and the dyskinesia. In fact, survey respondents often chose non-motor or hidden symptoms, such as fatigue, as those that have the biggest impact on quality of life. Yet these symptoms are under-studied.

The first round of Community Choice Research Awards were so successful that PDF called upon the Parkinson’s community again in 2015 to help us do a better job aligning the scientific goals of researchers with those of people living with disease. Once again, the responses provided a wealth of information.
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