Formerly known as Complementary and Alternative Medicine in Parkinson's Disease
There is a tremendous amount of diversity among people with Parkinsonism (PwP); some people seem to progress quickly and others barely at all. Our goal is to collect information that will make it possible to identify relationships between your daily choices and therapies associated with different rates of progression.
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.
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.
We invite you to participate regardless of your health status. Participation requires online access, and email address, and basic computer literacy.
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:
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.
Individuals that report being lonely rate their symptoms twice as severely as people who say they are not lonely.
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.
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