PPMI: The Study that's Changing Everything

PPMI is our landmark initiative to better understand and measure Parkinson’s disease. More information on how disease starts and changes can point to new ways to stop it. Better tools to predict, diagnose and track Parkinson’s can speed new therapies and improve care. 

The PPMI study has an online platform that collects data over time. Some people can complete screening tests through the mail. Others can join PPMI at one of 50 sites in 12 countries.

PPMI is sponsored by The Michael J. Fox Foundation. It is supported by more than 40 public, private and non-profit partners. A team of academic and industry scientists direct the study protocol. 

The lead investigator is Ken Marek, MD. Other leaders of PPMI are Tanya Simuni, MD; Caroline Tanner, MD, PhD; Andrew Siderowf, MD; and Thomas Tropea, DO.

PPMI is a natural history study. It collects data on health and disease. It does not test a new treatment. 

Some people in PPMI with Parkinson’s risk factors may be invited to enroll in an upcoming interventional study called Path to Prevention (P2P). P2P is a clinical trial that is designed to explore multiple Parkinson’s therapies in at-risk individuals at the same time.

When the study launched in 2010, it was called the Parkinson’s Progression Markers Initiative. In 2026, the name was updated to the Parkinson’s Precision Medicine Initiative to reflect scientific progress over 15+ years.

Precision medicine refers to treatments that are tailored for a person’s unique biology (informed by genetics, environment and lifestyle) rather than the current “one size fits all” approach. The ultimate goal of precision medicine is to find the right treatment for the right person at the right time. The new PPMI name represents scientific momentum toward this future.

PPMI is calling on anybody with and without Parkinson’s disease to take a simple scratch-and-sniff smell test. Your results may mean you are eligible for other parts of PPMI. Request a smell test today. 

Anyone aged 18 and older — with or without Parkinson's disease — in the U.S. can join the online part of PPMI. Get started today.

PPMI is working toward a day when doctors can prevent Parkinson’s disease. Then they could prescribe medicines before the disease can damage the brain. To achieve this, we need to study people not diagnosed with Parkinson’s.  

Today doctors can assess risk for many diseases through simple tests. One example is heart disease. Doctors can predict your risk of developing heart disease by testing your blood pressure or your cholesterol levels. They can prescribe medicine to help prevent heart disease. We do not have simple medical tests like this for Parkinson’s disease.  

PPMI is studying people with and without Parkinson’s. That could help researchers understand how different factors affect disease risk. We hope to gain information that may help us understand who gets Parkinson’s disease, and why. This in turn could help us treat Parkinson’s earlier and better. 

​​​​Yes! Contact a recruiting site in your area to learn more. (PPMI covers travel for potential volunteers and a study companion.) 

People with REM sleep behavior disorder or RBD (acting out dreams) have a higher risk of developing Parkinson’s and other brain diseases. (Not everyone with RBD will develop disease.) 

Learn more about RBD and PPMI’s interest in this disorder. 

People of Ashkenazi Jewish descent are more likely to carry variants in the GBA and LRRK2 genes. These variants can cause Parkinson’s disease. (Not everyone with these variants will develop disease.) 

PPMI is providing genetic screening and counseling for Ashkenazi Jewish people with Parkinson’s disease. Therapies against the GBA and LRRK2 pathways are already in human testing. Information on your genetics can help match you to these trials and help scientists work toward new treatments. 

Learn more about Ashkenazi Jewish heritage and Parkinson's risk.

In recent years, Parkinson’s research has learned more about certain factors important to Parkinson’s risk. However, we don’t know all of the factors linked to Parkinson’s disease. If we could more fully understand who is at risk for Parkinson’s, it could change everything. This is why PPMI studies a large and diverse population of people with and without Parkinson’s disease. By joining PPMI, you could help researchers uncover new factors important to Parkinson’s risk. PPMI needs you and is open to every U.S. adult age 18 and up, with a special need for people age 40 and up. We are grateful for your participation! 

Most people will contribute data to PPMI online and complete remote screening tests like a scratch-and-sniff test. Some will join PPMI at a clinical site. 

The online and clinic parts of PPMI collect data over time to learn how health and disease can change. The remote screening and clinic parts of PPMI may also collect biological samples (e.g., saliva, blood). The study team can discuss each part of the study with you. 

PPMI will study your data and samples to learn more about Parkinson’s and other brain diseases. PPMI shares de-identified data and samples with scientists to speed breakthroughs. Your data may be used for a range of studies around, for example, Parkinson’s risk, onset and progression. Those studies could lead to new tests and treatments for disease. 

PPMI follows practices to keep your identity private and your data secure.

The research team will remove data that would identify you. This includes your name, contact information, and address. That identifying information is kept separate and secure. Your data and samples will have a unique ID number. 

Any request by scientists to see or use your secured information must be approved by the study team. The scientists must sign forms that say they will protect the privacy of the information. They must also respect the laws of scientific research. This does not guarantee there will be no loss of privacy. But we will do everything we can to prevent that.

Participants will have the option to receive some personal research information. Volunteers who complete tests through the mail or at a clinic have the option to view some of their research information. The study provides education and counseling around these data.

PPMI will not share your health information. The study will not tell anyone you are enrolled. 

Some insurers may ask you specific information about your health. Your answer may be impacted by the research information you learn. If you have questions, you may want to speak with a PPMI counselor before choosing to learn that information. They can be contacted at ppmiresults@iu.edu. 


 

There is no cost to you to join this study. All tests are paid for by the research team. Your health insurance will not be charged. 

The study also pays for travel and meals for a participant and study companion to visit a clinic site. Site visits also include compensation for time and effort.

If you join PPMI at a medical site, we ask you to participate for at least five years. Many people have been in PPMI for more than a decade. That said, joining a research study is your choice. You can leave the study at any time.

The online part of PPMI captures your data securely over time and is expected to continue for several years. The longer you continue to contribute data, the more value you may be able to add. You may stop completing the surveys or skip some as your choice.

Email joinppmi@michaeljfox.org with questions about the study.  

PPMI’s dedicated study volunteers are critical to the study’s success. Visit michaeljfox.org/smelltoolkit for resources to share PPMI with your community. 

We are always looking to feature PPMI participants in our communications. If you're interested, please fill out a form at michaeljfox.org/shareyourstory.

PPMI makes its data available to qualified researchers. Scientists also may apply for samples for biomarker validation projects. Learn more on the PPMI researcher-facing website.

More than 40 private, public and non-profit partners support PPMI. Thank you for your interest in joining us. Contact researchpartnerships@michaeljfox.org to start a conversation.