Do Your Decisions Impact Rate of Progression?

How to Participate

Join the Community

To date, over 2600 PwP have enrolled in this ongoing natural history study. The more people that enroll, the more likely these results accurately reflect the community we are trying to serve. We are actively working to increase enrollment of underserved and minority populations.

Surveys Twice a Year

Participants will be emailed a survey every six months for the next 10 years. Each survey takes approximately 90 min, for a total of 3 hours per year. You may stop participating at any time.

Participation Requirements

We invite you to participate regardless of your health status. Participation requires online access, and email address, and basic computer literacy.

What We’re Already Learning

Is there a recipe for success?

When we look at baseline surveys only, we can see that diet, exercise, social health, food scarcity, stress, nutritional supplements, pharmaceuticals, and brain surgery are all associated with PD severity. The summary of the 2020 data can be found here:

Variables Associated with PD Severity

Diet & Nutritional Supplements

Foods associated with the reduced rate of PD progression included fresh vegetables, fresh fruit, nuts and seeds, nonfried fish, olive oil, wine, coconut oil, fresh herbs, and spices. Foods associated with more rapid PD progression include canned fruits and vegetables, diet and nondiet soda, fried foods, beef, ice cream, yogurt, and cheese. Nutritional supplements coenzyme Q10 and fish oil were associated with reduced PD progression and iron supplementation was associated with faster progression.

Diet & Supplements

Social Health

Individuals that report being lonely rate their symptoms twice as severely as people who say they are not lonely.

Loneliness & PD Severity

Can Patient-Reported Outcomes be Trusted?

The PRO-PD was most highly correlated with the Parkinson’s Disease Questionaire-39 (r = 0.763, P < 0.000) and Patient-Reported Outcome Measurement Information System Global quality of life (r = −0.7293, P < 0.000), other patient-reported quality of life measures. The PRO-PDnon-motor subset was highly correlated with the Non-Motor Symptom Score (r = 0.7533, P < 0.000). There was a moderate correlation seen with Hoehn & Yahr (r = 0.5922, P < 0.000), total Unified Parkinson’s disease Rating Scale (r = 0.4724, P < 0.000), and the Timed-Up-&-Go (r = 0.4709, P < 0.000). The PRO-PD may have utility for patients, providers, and researchers as a patient-centered measure of Parkinson’s disease symptom severity.

PRO-PD and Quality of Life

2021 Movement Disorders Poster Presentations

Exercise Frequency and PD Severity Over Time

Symptoms Change following Initiation of Dopaminergic Therapies and Deep Brain Stimulation

Determinants of Loneliness among People with Parkinson’s Disease

Modifiable Variables in Parkinsonism (MVP) Study