PPMI Screening Survey

PPMI Study

PPMI seeks to transform how we diagnose, track, treat and potentially prevent Parkinson’s disease. Since The Michael J. Fox Foundation launched PPMI in 2010, more than 1,400 participants around the world have contributed data and biological samples.

Now PPMI aims to bring together a larger and more diverse group — people with and without Parkinson’s — who can help contribute to more detailed understanding of how the disease develops and changes over time. These insights could lead to critical advancements across the spectrum of care: from earlier diagnosis to innovative new treatments that could improve quality of life and slow disease progression.

Learn more about PPMI.

Check Your Eligibility

PPMI is looking for participants who meet a wide range of eligibility criteria as outlined below. Select individuals, including individuals of Ashkenazi Jewish heritage, may be eligible to receive genetic testing and counseling at no cost as part of participation.

PPMI is currently recruiting:

• People with Parkinson’s who have been diagnosed within the last two years
• First-degree family members (parent, child, sibling) of a person with Parkinson’s
• People who have risk factors for the development of Parkinson’s, such as a known genetic mutation (e.g., GBA, LRRK2, SNCA)
• People without Parkinson’s and no known risk to act as a comparison group

Currently PPMI is remotely screening only people who live in the United States and Canada, but the study plans to open its doors more globally in 2021.

Frequently Asked Questions

Why is PPMI only recruiting people with Parkinson’s diagnosed in the past two years?

Enrolling people early in their disease course allows volunteers to contribute valuable data over time to help plot disease biology and experience, from the earliest signs of Parkinson’s through its later stages. It is also important that we gather information before individuals start medication, which may change test results.

Why is PPMI recruiting people with a first-degree relative with Parkinson’s disease?

People with a first-degree relative with Parkinson’s are at higher risk of developing the disease themselves. PPMI is enrolling people with risk factors to better understand the biology that may lead to Parkinson’s in some people or that may protect from the disease in others. This information could lead to new therapies to prevent Parkinson’s disease.

Why is PPMI offering genetic testing for people of Ashkenazi Jewish descent? 

People of Ashkenazi Jewish descent — who have Jewish relatives from Eastern Europe — are more likely to carry mutations linked to Parkinson’s disease in the GBA and LRRK2 genes. (Read more about Parkinson’s genetics.) PPMI is providing genetic testing and counseling for people of Ashkenazi Jewish descent with a first-degree relative with Parkinson’s disease to test for these mutations. Therapies against the GBA and LRRK2 pathways are already in human testing, and more information on these targets can help accelerate those trials and encourage new approaches.

What is the PPMI genetic testing process?

If your survey responses indicate you are eligible for PPMI, we will connect you with our research partner Indiana University. Some eligible volunteers will be mailed a genetic testing kit requiring a saliva sample to determine if there is a mutation in your LRRK2 or GBA gene. Your saliva sample is sent to a central laboratory for testing, and you will be contacted by a genetic counselor to review your test results and what they mean.

Will the results impact my insurance coverage?

The Genetic Information Nondiscrimination Act (GINA) provides some protection against genetic discrimination in health insurance and employment, but this law does not apply to long-term, life or disability insurance. However, the results of your PPMI genetic testing will only be disclosed to you directly. This information does not go into your medical records, so would not be shown if an insurance company requests your medical records.