State of the Community Survey

💡 Quick Summary

  • The Parkinson’s Foundation State of the Community survey is an annual survey that collects real-world experiences, concerns and priorities from the Parkinson’s disease (PD) community.
  • Findings from the survey help inform the Foundation’s programs, initiatives and resources.
Group of people filling out a form

The Parkinson’s Foundation State of the Community survey is an annual survey that is launched to our Parkinson’s disease (PD) community to better understand experiences, concerns and priorities of people affected by Parkinson’s disease.

The survey series began in 2025 and is launched in English and Spanish. Insights help guide the Foundation’s mission to make life better for people living with Parkinson’s disease. Survey findings inform our programs, initiatives and priorities and may be a valuable source of lived-experience data for researchers, industry and healthcare professionals.

What types of questions are included in the survey?

The survey asks our community members about the following:

  • Top Concerns about PD
  • Learning Interests
  • Experiences with navigating care
  • Engaging in research, including PD GENEration: Powered by the Parkinson’s Foundation
  • Use and satisfaction with Parkinson’s Foundation resources
  • Policy Priorities and underrepresented community programs

Who does the survey reach?

Our annual survey includes responses from people with Parkinson’s, care partners, family or friends that have loved ones with PD and healthcare professionals.

To date, about 15,000 people have taken our survey in 2025 and 2026, across all states in the U.S. and internationally.

We capture diverse perspectives, including:

  • Newly diagnosed
  • Women with PD
  • Veterans
  • People with PD from populations of focus that have been adversely affected by health disparities

Our reach is growing, and not all perspectives are captured in our annual surveys. We are committed to partnering with these communities to ensure they are represented in our surveys.

Annual Survey Findings

2026 State of the Community Survey

More than 9,000 people shared their experiences through the 2026 State of the Community Survey and about 75% of respondents identified as a person living with PD.

2026 State of the Community Survey Findings

Key Findings included:

  • Movement and non-movement symptoms remain top concerns and what the community wants to learn more about. Spanish speaking respondents have a strong interest in wanting to learn more about research.
  • Many people feel uncertain about what symptoms or questions to discuss with their PD doctor.
  • Research awareness, including awareness of PD GENEration, is slightly growing but participation in clinical research remains low with only 20-30% of individuals reported having participated in a clinical research study.
  • People are seeking trusted education and support with gaps in the community being noted as exercise and emotional well-being programs.

Learn more:

2025 State of the Community Survey

Approximately 6,100 respondents completed the 2025 State of the Community Survey. About 74% identified as a person living with PD and most reported having lived with Parkinson’s disease for 4 or more years.

2025 Community Survey Findings
Top concerns about PD chart
Survey results map

Key Findings included:

  • Top concerns about PD include symptoms, planning for the future and medications.
  • Many (57%) people spend 15-13 minutes with their PD doctor at appointments.
  • About 49% of people are aware of PD GENEration, but fewer have participated (44%). Even fewer have participated in a clinical trial – 72% reported not participating in a PD clinical trial.

Read the 2025 survey findings blog article.

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