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PPMI: The Study that Could Change Everything

The Parkinson's Progression Markers Initiative (PPMI) is changing how patients, families, doctors and scientists think about brain disease. Now it needs you.

About PPMI 

The Michael J. Fox Foundation launched PPMI in 2010 to better understand Parkinson's and advance new treatments. Since then, the study has changed how research is done and what scientists know about the brain. It is a cornerstone of our understanding of disease and has heavily influenced clinical trials.

PPMI follows people — with and without Parkinson's — over time to learn more about how disease starts and changes. That information may lead to insights and tools that can help better diagnose, treat and even prevent brain disease. The study shares its data set — the most robust in Parkinson's research — with scientists to speed breakthroughs. 

This landmark initiative is only possible through partnerships. Leaders across the field and nearly 40 funding partners have helped shape PPMI. Most importantly, more than 1,400 participants enrolled in PPMI over its first decade. Many of those people continue in the study. 

Today, with more therapies in testing, PPMI is expanding. The study has added an online platform to gather data from more than 100,000 people. It is following volunteers at more sites in more countries. More data can help advance us closer to better treatments and prevention. 

Join the study that could change everything.

FAQs

Find answers to common questions here.

  • What is PPMI?

    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 and a mobile app that collect data over time. Some people will be invited to complete screening tests through the mail. Others can join PPMI at one of the nearly 50 sites in 12 countries. The study team can help decide the best path for you based on your relationship to Parkinson’s disease. 

  • Who is leading this study?

    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, and Caroline Tanner, MD, PhD.  

Who Is PPMI Recruiting

  • Who can be part of PPMI?

    Anyone over age 18 in the United States can join the online part of PPMI. Get started 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) 

    • Parents, sisters, brothers and children of people with Parkinson’s 

    • 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 especially 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.) 

  • I don’t have Parkinson’s disease. Why is my data needed?

    PPMI is working toward a day when doctors can predict 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. 

  • Can I be part of PPMI if I live outside the U.S.?

    ​​​​Yes! Medical centers in 12 other countries are or will soon begin 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 parent, brother or sister, or child diagnosed with Parkinson’s disease   

    • Ashkenazi Jewish descent or mutations in Parkinson's linked genes (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.

  • Why are males especially needed for PPMI?

    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.

  • Why is PPMI recruiting people who act out their dreams?

    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

  • Why is PPMI recruiting people of Ashkenazi Jewish descent?

    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. PPMI is also testing people diagnosed with Parkinson’s within the past two years. 

    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. 

  • I don’t have any of the factors you listed that are related to Parkinson’s risk. Why is my data needed?

    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 men age 60 and up. We are grateful for your participation! 

What Does It Mean to Join PPMI

  • What will I be asked to do if I join PPMI? 

    Most people will contribute data to PPMI online and through a mobile app. Others may complete remote screening tests. Some will be invited to 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). 

    If you are invited for remote screening or clinic enrollment, the study team will discuss each part of the study with you. 

  • What will happen to my data and biological samples?

    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, genetics, biology 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.

  • How will my privacy be protected? 

    We understand that you may have concerns about sharing personal information. You may also be asked to share biological samples with the study. 

    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.

  • Will I be told my personal results from PPMI tests? 

    If you have genetic testing as part of PPMI screening, the study will share some results. PPMI will report on some gene changes linked to Parkinson’s. A genetic counselor will discuss what the results mean for you and your family. 

    PPMI is not set up to return other study results. We will share updates and results from the study overall. We will report back on new findings and impact of your contribution.

  • Will my health insurance, employer or others find out my health information? 

    No. The information in this study will have no impact on your job or health insurance. No one will be told you have participated. Your personal study information will not be shared publicly. 
     

  • Do I need to pay to join PPMI?

    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. 

  • How long will I be in PPMI?

    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.  

    Depending on the information you provide, PPMI may invite you to contribute more to the study. We may ask you to complete tests through the mail. PPMI may invite you to a medical site for additional testing. 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.

  • Who can I contact with questions about PPMI? 

    Email info@ppmi.org with questions about the study.  

How Can I Work with PPMI

  • How can I spread the word about PPMI? 

    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/ppmitoolkit for our toolkit to share PPMI with your community. 

  • How can I share my PPMI story?

    We are always looking to feature PPMI participants in our communications. If you're interested, email us today at shareyourstory@michaeljfox.org

  • I’m a scientist. How do I access PPMI data and samples? 

    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.

  • How can my organization partner with PPMI?

    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. 

"I felt good contributing to something bigger than myself, hoping that I can play a small part in finding a cure for Parkinson's."
Jon Gilman PPMI Participant
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