Making a Difference
There is a great need for people to participate in clinical research as we try to discover ways to provide better care and treatment for Parkinson’s disease. Research usually occurs in two forms:
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Observational studies
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Interventional studies
Clinical research for Parkinson’s disease can be testing a drug, therapy, or service like genetic counseling. Study aims might be observing whether genetic testing and genetic counseling are useful, whether certain treatments work, or simply tracking health in people with Parkinson’s. Genetic connections are being explored, representing a major effort in Parkinson’s research.
It is a great time to consider receiving genetic testing and counseling to know your genetic status as part of a research study. You can get genetic testing and counseling, sometimes at no cost, by enrolling in a research study.
For a deeper discussion about research in Parkinson’s disease, including clinical trials please refer to Ways to Be Involved @ Michael J Fox.
The following are current studies that may qualify you for free genetic testing and counseling. If you are interested in clinical trials, you can explore Fox Trial Finder and clinical trials.gov searching with your key information and interests.
We encourage you to make a difference and become involved in Parkinson’s disease research efforts!
PPMI Online
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Purpose
Parkinson Progression Marker Initiative Online (PPMI online) is part of the broader Parkinson’s Progression Marker Initiative aimed at better understanding who gets Parkinson’s disease and why. PPMI Online is a study collecting participant reported demographic and health information online from people with and without Parkinson’s disease. Once in the study, you will answer questions related to various aspects of your health that may be related to your risk of developing Parkinson’s. Whether you have Parkinson's or not, you are needed to find better ways to diagnose, treat, and even prevent this brain disease.
Eligibility
People with or without Parkinson's Disease, age 18 years or older living in the United States
Locations
United States
Contact
For more information on PPMI Online, please call (877) 525-PPMI or email joinppmi@michaeljfox.org.
Smell Test Direct
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Purpose
Loss of sense of smell may be one of the most important signals of Parkinson’s risk. The Parkinson's Progression Markers Initiative (PPMI) is a landmark study is exploring this link toward prevention. Help scientists learn more about risk and develop new treatments.
Eligibility
We’re asking everyone age 60 and up, without Parkinson’s disease, and within the U.S. or Canada to take a smell test.
Locations
This study is accessible online by visiting this link https://mysmelltest.org/
Contact
For more information on Smell Test Direct, please call (888) 830-6299 or email ppmi@iu.edu.
PDGENEration
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Purpose
PD GENEration provides genetic testing and genetic counseling at no cost to empower people with Parkinson’s disease and their care team, improve Parkinson’s care and research, and increase enrollment in clinical trials.
Eligibility
PD GENEration is available to people with a confirmed diagnosis of Parkinson’s disease, regardless of age. Enrollment and counseling are available in both English and Spanish.
Locations
Participants can enroll from home through a telemedicine appointment and at-home sample collection kit, or in-person at one of the participating Centers of Excellence and Parkinson Study Group sites.
Contact
For questions about enrollment, email Genetics@Parkinson.org or call 1-800-4PD-INFO (473-4636). Or visit parkinson.org/PDGENEration for more study information and to enroll.
PPMI Pathology Core
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Purpose
The PPMI Pathology Core helps coordinate and plan all aspects of the brain tissue donation. Post-mortem (after-death) analysis of brain tissue allows researchers to compare the data and samples collected in the PPMI study with what they see in the brain. These studies will help Parkinson’s researchers further their understanding of the disease and its progression, which could help develop new treatments. The PPMI Pathology Core will also provide a summary that will be provided to the PPMI participant’s family.
Eligibility
Any former or current PPMI participants qualify to participate. Current PPMI participants should contact their site coordinator to get involved, while former participants should contact the PPMI Pathology Core directly.
Locations
Participation in this study is available nationwide, and through PPMI study sites.
Contact
For more information or self-referrals, please visit the PPMI Pathology Core website, call (844) 280-0036 or email ppmipath@iu.edu.
TOPAZ (Trial of Parkinson’s and Zoledronic Acid)
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Purpose
The TOPAZ study will test if a medicine called zoledronate can reduce fractures and even death in people with Parkinson’s Disease. Zoledronate is an FDA-approved treatment for osteoporosis (weak bones). What we learn could help people with Parkinson’s disease lower their risk of fractures and death.
Eligibility
You can take part if you (1) are at least age 60, (2) have Parkinson’s disease, Multiple system atrophy, Progressive supranuclear palsy, Dementia with Lewy bodies or another form of parkinsonism, and (3) have never fractured your hip. Further eligibility criteria can be found during enrollment through the study website.
Locations
Participants can enroll from home by visiting topazstudy.org. Anyone who lives in the United States can participate. All study activities are completed from the comfort of your own home.
Contact
For more information about the TOPAZ study, visit topazstudy.org.