Insights from Our Latest Community Survey
In January 2025, the Parkinson’s Foundation asked people living with Parkinson’s disease (PD) and those impacted by it: “What matters most to you?”
The results of our 2025 State of the Community Survey provide valuable feedback to guide Parkinson’s Foundation initiatives, goals and priorities. These results will help us focus on the most important issues for people with PD, their families and anyone impacted by PD.
The survey, available in English and Spanish, was shaped with input from four people living with PD to help ensure the questions reflected the community’s voices.
View our 2025 State of the Community survey findings in Spanish.
Below, we highlight your top concerns based on survey responses:
1. Top concerns about PD include symptoms, planning for the future and medications.
Survey participants shared their top concerns about Parkinson’s: movement symptoms, non-movement symptoms, planning for the future and medications. These topics will guide us as we develop educational materials and resources that are meaningful and relevant to the PD community.
Key Takeaway: Nearly half (42%) of participants reported movement and non-movement symptoms as top concerns.
We recognize that the PD community’s priorities may change over time, so we will continue to create and update our educational materials and resources to meet their evolving needs. Learn how to recognize common movement and non-movement symptoms of Parkinson’s, and manage them using different treatment options.
2. Most participants spent 15-30 minutes talking directly with their PD doctor.
On average, survey participants said they spent 15-30 minutes talking directly with their doctor during an appointment. Bringing a list of questions and concerns can help optimize your time during the visit.
Key Takeaways:
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57% spend 15-30 minutes directly talking to their PD doctor during a visit.
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74% bring a list of topics to discuss.
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23% reported receiving emergency care or being hospitalized in 2024.
We understand that medical appointments can feel overwhelming, so we want to equip our PD community with tools to feel empowered to advocate for themselves and their loved ones during a visit. Check out our Hospital Safety Guide to help prepare for and navigate a hospital stay, and learn how to make the most of your Parkinson’s care.
3. Participation in PD research and PD GENEration: Mapping the Future of Parkinson’s Disease.
Research plays an essential role in understanding the causes of PD, developing new treatments, improving care, and ultimately finding a cure. However, many survey participants shared that they have not yet taken part in a PD clinical trial or research study.
Key Takeaway: 72% have not participated in a PD clinical trial or research study.
“The only path to new drugs for Parkinson’s is through clinical trials — and the crucial element needed to power those trials is the person with Parkinson’s. The more people with PD who are willing to engage in clinical trials, the faster we can move towards new treatments.” - James Beck, PhD, Parkinson’s Foundation Chief Scientific Officer
PD GENEration: Mapping the Future of Parkinson’s Disease, is our global research study that offers genetic testing and counseling for people with Parkinson’s. Although many survey participants said they have not taken part in a PD research study, almost half have heard about PD GENEration. Of those, 44% reported participating in the study.
Key Takeaways:
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49% have heard about PD GENEration.
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44% have participated in the study.
We know there is still work to do in educating the community about recognizing research studies, including PD GENEration, and understanding the benefits of participating in research.
These survey findings will guide our efforts to offer more education and create opportunities for people to learn about and take part in research. Get involved in Parkinson’s research today. Visit our Join A Study page or enroll in PD GENEration today.
Next Steps
The Parkinson’s Foundation remains committed to listening and responding to the needs and priorities of the Parkinson’s community. We will continue our mission to make life better for anyone affected by PD.
We acknowledge that survey responses may not reflect the opinions or experiences of everyone in the PD community. We are building on our commitment to making resources and information accessible to all people living with PD by gathering feedback across multiple platforms. Explore more Parkinson’s Foundation survey findings on our Survey Data page.
Resources Designed to Help
Explore the Parkinson’s Foundation most popular resources:
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Join an online education program
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Listen to a podcast episode