Your Parkinson’s experience is unique. Gain insights through free at-home screening for genetic factors and smell ability. Your results may connect you to future research opportunities, including studies testing new treatments.
This program is part of a research study. Genetic screening is currently open to people with Parkinson’s disease (PD) who have a family history of PD or Ashkenazi Jewish ancestry. Additional groups may be included over time. Smell testing is open to all people with PD.
How It Works
Participation is free and can be completed from home.
- Sign Up Online - Answer a few questions to see if you qualify.
- Get Your Free Kit - A screening kit is mailed directly to you with step-by-step instructions.
- Complete Your Tests at Home - Provide a saliva sample and complete a scratch-and-sniff smell test. Return your sample with the prepaid label and submit your smell test answers online.
- Receive Results and Next Steps - View your smell test and genetic screening results and connect with research opportunities in the online portal.
Benefits for You. Progress for Everyone.
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Connect with studies exploring personalized treatments.
Your results may help match you to studies exploring new treatments tailored to your Parkinson’s biology.
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Play an active role in your Parkinson’s journey.
Joining a study is a way to take action and be part of something bigger.
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Help shape a better future for families affected by Parkinson’s.
Many people participate in research to help reduce the impact of Parkinson’s for future generations.
Be Part of One of the Largest Parkinson’s Studies
This program is part of The Michael J. Fox Foundation’s Parkinson’s Precision Medicine Initiative (PPMI) — a landmark global study transforming how Parkinson’s is understood and treated. More than 100,000 people have joined.
- PPMI is one of the most comprehensive Parkinson’s datasets in the world.
- The study helped enable tools to detect Parkinson’s in living people.
PPMI has become one of the most important resources for researchers around the world. Its goal? Accelerate earlier diagnosis, personalized treatments and disease prevention.
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"People can be hesitant to learn more about their health, but if you have children or grandchildren, or others you care about, taking part in research like PPMI can help reduce the impact of Parkinson’s on their lives."
- Sherry, Study Participant
Why Genetics and Smell Matter
Parkinson’s is not the same for everyone, and understanding those differences is key to improving treatment.
This screening looks at two genetic variants associated with Parkinson’s disease that are found on the LRRK2 and GBA genes. These changes are rare in the general PD population but more common in people of Ashkenazi Jewish ancestry and people with a family history of PD. Researchers are partnering with people with these variants to better understand disease biology. Some clinical trials are testing targeted treatments for people with these gene changes. Learn more about Parkinson’s genetics.
Changes in sense of smell are an early and common symptom of Parkinson’s — but not everyone with PD loses their sense of smell. Differences in symptoms may reflect underlying biological factors.
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What This Means:
Studying genetics and sense of smell helps researchers identify patterns and better understand differences in the disease. This work is driving a shift toward precision medicine: developing screening tests, care plans and treatments tailored to your Parkinson’s.
Frequently Asked Questions
Participation
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Who can participate?
At this time, genetic screening is currently open to people with Parkinson’s disease (PD) who have PD family history or Ashkenazi Jewish ancestry. Smell screening is open to anyone with PD and to people without PD age 40 or older.
Anyone age 18 or older with or without Parkinson’s disease in the U.S. and Canada can join other parts of PPMI.
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Do I need to visit a clinic to complete the testing?
No. This screening is completed entirely from home. You’ll receive a kit by mail, return your saliva sample using prepaid packaging and submit your smell test results online.
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Do I need to pay to participate?
No. There is no cost for you to join this study. All tests are paid for by the research team. The study also provides prepaid packaging for you to return your saliva sample.
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Do I need to change my Parkinson’s medications to participate?
No. Medication changes are not required for screening. Participation is designed to fit into your everyday life.
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What happens after this screening?
All participants can keep adding data to the study in the myPPMI.org online portal. Some participants may be invited to other studies or clinical trials testing new treatments. Participation in any study is always your choice.
Results and Genetics
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What results will I receive?
The study will tell you if you carry two Parkinson’s-related genetic variants: the G2019S LRRK2 variant and the N370S GBA variant.
You’ll also receive your smell test results, including how your sense of smell compares to others of a similar age and sex.
The study will provide information and counseling to help you understand what your results mean.
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When and how will I get my results?
You will be notified when your results are available in the myPPMI.org online portal. If you have questions, please email [email protected].
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If I have a Parkinson’s-related variant, does this mean my family members will develop Parkinson’s too?
Not necessarily. Some genetic changes can increase the risk of Parkinson’s, but they do not guarantee that someone will develop the disease. Parkinson’s risk is complex and impacted by a combination of genetics, age and environmental factors.
Genetic counseling is available to help study participants understand family risk.
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Will I have access to genetic counseling?
People who are eligible for genetic screening can talk to a genetic counselor at any time. Information and resources will be available to help you understand your results.
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I already took a LRRK2 or GBA gene variant test. Do I need to take another test to participate?
You may not need to repeat genetic screening. In most cases, you can upload your existing results through our secure platform and just receive a smell test. Additional details and eligibility will be confirmed during sign-up.
Privacy and Security
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Will my insurance company or employer have access to my results?
No. Your personal health information and study participation will not be shared with insurance companies, employers or outside organizations. Participation in this research is confidential.
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 [email protected].
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Who has access to my information?
This study is led by our partners at Indiana University and the Institute for Neurodegenerative Disorders in Connecticut. They are the only ones who will have your identifiable information (name, address, contact information). This is so they can send you your screening kit and contact you about your results.
The rest of your data will be de-identified. This means they remove your name, address, etc.
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How is my data protected?
Protecting your privacy is a top priority. The study removes identifying information, such as your name and contact details, from research data and samples. Instead, information is labeled with a secure study 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.
A simple step that can make a real difference
By requesting your free screening kit, you’re not only learning more about your own health — you’re helping shape the future of Parkinson’s research and care.