A Parkinson’s diagnosis affects everyone differently. For those inspired to take action, volunteering for research can become a critical part of the Parkinson's experience.
Be Part of the Solution
Many people don’t think about clinical research prior to a diagnosis; it may even seem frightening. But participating in research doesn’t have to be scary, unpleasant or time-consuming. It can be an empowering and impactful opportunity for people with and without Parkinson’s disease (PD) to help accelerate breakthroughs in treatment.
With more than six million people living with Parkinson’s worldwide, and the number growing, now is the time to get involved. Want to make a difference and help advance the search for a cure? Consider taking part in research.
You have the power to help researchers understand how Parkinson’s starts and progresses. This can transform the way new treatments are developed and tested. Together, we can change the future of Parkinson’s.
Navigating Clinical Trials
The Michael J. Fox Foundation developed a guidebook to help you learn the basics of clinical research and the importance of study participants.
"Research participation motivates us, inspires us, empowers us and gives us purpose as we navigate daily life with the disease," say members of the Foundation's Patient Council, quoted in the guidebook. "We hope our experiences may help you find your own path with Parkinson’s and, more importantly, remind you that you are not alone in the journey."
"Navigating Clinical Trials" in Other Languages
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Clinical Studies Need You
Each medicine or treatment prescribed by doctors today went through the clinical trial process. Trials play a critical role in the development of new and better treatments by testing how safe they are and how well they work. But clinical trials and new treatments can’t move forward without the support of participants.
Across all research, 85 percent of trials face delays and 30 percent never get started because of the chronic shortage of volunteers. This means people with Parkinson’s wait longer for better solutions to manage the disease.
Participating in research can provide access to Parkinson’s experts and the latest treatments, but it does have some risks, such as medication side effects. Thinking about volunteering for a clinical study means weighing the potential benefits and risks, just as you would when starting a new medication or considering a surgical procedure to manage your symptoms. Your doctor can help you decide which research is right for your individual situation. It also can be helpful to discuss your thoughts on research with your family and care partner.
Introduction to Clinical Research in Parkinson's Disease
Karen and Marc Jaffe and Steven and Kae Spencer talk about their experiences in research as couples, individuals with Parkinson's and control volunteers. Susan Bressman, MD, discusses how every contribution leads to better understanding of Parkinson's and new treatments.
Everyone Can Participate
No matter where you are in your journey, your participation in research is invaluable to scientists working on groundbreaking solutions to make life better for people with Parkinson’s.
Different opportunities will exist at different stages of your journey. For example:
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Recently Diagnosed
There is a limited window of eligibility for studies that require recently diagnosed participants who have not yet started taking medication. (For this reason, many patients report wishing, in hindsight, that they had been more informed about research early in their disease course.)
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Specific Symptoms
Some studies require those who have been living with the disease for a few or several years, and who have specific symptoms or complications such as dystonia or dyskinesia.
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DBS Participants
Some studies require individuals who have or have not undergone DBS (deep brain stimulation), a surgical intervention.
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Gender & Age Range
Parkinson's research requires individuals of both genders and varying ages, ethnic and environmental backgrounds, because PD touches all of these groups.
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Atypical Parkinsonism Participants
Many studies seek individuals with atypical parkinsonism, which includes corticobasal degeneration, Lewy body dementia, multiple system atrophy and progressive supranuclear palsy.
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People Who Don't Have Parkinson's
Families, spouses and care partners have an important role to play, too. Most studies require control participants — individuals living without Parkinson's disease. Genetic studies frequently seek close relatives of people who have Parkinson's and carry a PD-implicated genetic mutation. Even simply supporting your loved one in his or her research participation — organizing schedules or arranging transit to accommodate clinic visits, for example — is a valuable contribution.
The Diversity of Parkinson's Clinical Research
Read more about clinical trials in our guidebook or frequently asked questions.
“The answer is in all of us.” – Michael J. Fox
Fox Trial Finder
It has never been easier to find relevant clinical studies. Our revamped user-friendly online tool matches participants like you to specific studies on Parkinson's disease and related conditions. Join a study.
