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 the nearly 51 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 investigators are Ken Marek, MD, Tanya Simuni, MD, and Caroline Tanner, MD, PhD.  

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 a treatment study in the future. PPMI is planning a study testing therapies in people with some signs of disease but without a diagnosis yet. The study will test if these therapies slow disease at its earliest stages.
 

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.

Anyone aged 60 and older without Parkinson's in the U.S. or Canada can take a smell test. Smell loss may be an early sign of Parkinson's risk. Request a smell test today.

Sites in the U.S. and other countries are enrolling other groups: 

• People recently diagnosed with Parkinson’s and not yet taking medication 

• People who act out dreams while asleep (REM sleep behavior disorder) 

• People with a known genetic mutation linked to Parkinson’s (GBA, LRRK2, SNCA, PRKN, PINK1) 

• Control volunteers with no known connection to disease 

People of Ashkenazi Jewish descent are also needed. This population may carry gene changes linked to Parkinson’s. 

View a list of recruiting sites. (PPMI covers travel for potential volunteers and a study companion.) 

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! Medical centers in 11 other countries are recruiting PPMI volunteers. These sites are enrolling people with: 

• A Parkinson's diagnosis within the past two years who are not yet taking Parkinson's medication 

• A known genetic mutation linked to Parkinson's (GBA, LRRK2, SNCA, PRKN, PINK1)  

• A pattern of acting out dreams while asleep (REM sleep behavior disorder) 

• People with no known connection to Parkinson's to act as control volunteers 

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

The PPMI study team is also exploring ways for international volunteers to participate online.

PPMI is studying the factors that could lead to Parkinson's disease. One of those factors is being male. Some research shows that males are more likely to develop Parkinson's disease. It may be that as many as two-thirds of people with Parkinson's are male. Scientists are exploring this understanding and the reasons behind it.  

That said, PPMI needs and welcomes volunteers of both sexes.

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 have Jewish relatives from Eastern Europe. This population is more likely to carry mutations in the GBA and LRRK2 genes. These mutations can cause Parkinson’s disease. (Not everyone with these mutations will develop disease.) 

PPMI is providing genetic testing and counseling for some people of Ashkenazi Jewish descent. This includes people with a parent, sister or brother, or child with Parkinson’s disease.

Therapies against the GBA and LRRK2 pathways are already in human testing. More information on these targets can help accelerate those trials and encourage new approaches. 

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

Certain military exposures increase risk for Parkinson’s disease. In those who get Parkinson’s, the disease could show up years or even decades after military service.

Veterans — regardless of health status or location of military service — have valuable experiences to contribute to research. PPMI welcomes veterans both with and without Parkinson’s.

Learn more about military service 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 60 and up. We are grateful for your participation! 

Most people will contribute data to PPMI online. Others may complete remote screening tests. 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.

Some people will have the option to receive some personal research information. Volunteers enrolled in PPMI 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. 

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. 

Please know that 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, using the internet. The study is expected to continue for several years. The longer you continue to contribute data, the more value you may be able to add.

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

PPMI’s dedicated study volunteers are critical to the success of PPMI. We have put together resources to spread the word about PPMI. Visit michaeljfox.org/smelltoolkit for our toolkit 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.