Parkinson’s disease (PD) is a degenerative brain disorder and movement disorder associated with aging, causing certain parts of the brain to deteriorate gradually, according to the Cleveland Clinic. After diagnosis, common symptoms often include slowed movement, tremors, balance issues, and more.
While there’s currently no cure, ongoing research and clinical trials are crucial for developing better treatments and improving quality of life. Understanding Parkinson’s and the role clinical trials play can empower those affected to make informed decisions about their care and contribution to science.
According to the Cleveland Clinic, Parkinson’s disease usually affects people over 60, but in rare cases, it can show up as early as your 20s, especially if a close relative like a parent or sibling also has it. While some studies report lower rates of Parkinson’s among Black Americans, research from Morehouse School of Medicine suggests that underdiagnosis plays a major role. Black patients are often diagnosed later, are less likely to see specialists, and tend to face worse outcomes, including greater disability, higher dementia rates, and lower quality of life.
What are Clinical Trials?
Clinical trials often provide access to cutting-edge treatments or therapies before they become widely available. These trials study drug safety and effectiveness of new medicines, medical devices, or even lifestyle interventions like diet plans. Many aim to find options that work better or have fewer side effects, potentially offering improved care for those living with diseases like Parkinson’s.
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Benefits of Participating in a Parkinson’s Disease Clinical Trial
When you decide to join a clinical trial, it can feel like a big step, especially if you’re worried about the outcome. But there are real benefits. Participants often get early access to promising treatments and receive close care from top doctors and researchers. More importantly, by taking part, you’re actively contributing to science and helping improve outcomes and treatments for people living with Parkinson’s worldwide.
Alyssa O’Grady, Vice President of Clinical Research at The Michael J. Fox Foundation, told BDO: “Parkinson’s is the fastest growing neurodegenerative disease, affecting over 1 million Americans and 6 million worldwide. With age as the biggest risk factor, these numbers are expected to double by 2040. Many people don’t fully understand the risk factors or what research participation involves. Education is key to helping families see the power research has to lead to better treatments and, ultimately, a cure.”
Given that Parkinson’s disease is often underdiagnosed in Black Patients, Alyssa O’ Grady stressed the importance of care. She shared, “ Parkinson’s disease care is complex and often requires a team of doctors. Unfortunately, getting a clinical PD diagnosis can be delayed, especially for patients who are unaware that specialty care, which can lead to a quicker diagnosis, exists. Delayed diagnoses often waste time and medical resources, delaying how soon patients can get into the right treatment programs. This built-in barrier toward diagnosis is amplified for people of underrepresented communities. This creates a domino effect toward research participation and being introduced to treatment options and research participation.”
Types of Clinical Trials for Parkinson’s Disease
There are two main types of clinical trials for Parkinson’s Disease: interventional and observational. Interventional trials test whether a specific treatment, like a new medication, device, or surgery, can offer more benefits than what’s currently available. These are the kinds of studies that actively try to improve how to treat Parkinson’s disease.
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On the other hand, observational trials don’t introduce new treatments. Instead, they closely monitor aspects of the disease, like tremors, balance, or speech, to better understand how Parkinson’s shows up and progresses over time. These often involve things like surveys or virtual check-ins.
Both types of trials are equally important, whether it’s testing something new or learning more about the disease itself, they each play a key role in helping move us closer to better treatments and, hopefully, a cure.
Finding a Clinical Trial For Parkinson’s Disease
Here are some ways to locate trials that might be right for you:
Option 1: Explore Clinical Trial Platforms
Many websites list trials across diseases, letting you filter by condition, treatment type, study phase, and location. Some trusted sites:
- BlackDoctor.org’s Clinical Trial Resource Center — The largest site dedicated to helping Black Americans find trials.
- ClinicalTrials.gov — A comprehensive database run by the National Library of Medicine.
- National Cancer Institute (NCI) — Offers a cancer-focused clinical trial search tool.
- Center for Information and Study on Clinical Research Participation (CISCRP) — Provides searchable trial info and educational resources.
Option 2: Talk to Your Doctor
Tell your healthcare team you’re interested in trials. They can help identify relevant studies and may contact trial coordinators directly on your behalf to streamline the process.
Option 3: Reach Out to Disease Organizations
Look into groups like the Parkinson’s Foundation, The Michael J. Fox Foundation and The American Parkinson’s Disease Association. These organizations often have the latest info on ongoing studies.
Considerations for Participation
Before enrolling in a clinical trial, it’s important to think through a few key factors. Ask yourself: What’s the time commitment? Will you need to travel? Are there any potential risks or side effects? It’s also worth considering how comfortable you feel with the research team — do they communicate clearly, and do they have experience working with individuals from different backgrounds? These questions can help you feel more informed and empowered in your decision. And keep in mind: participation is completely voluntary. You have the right to ask questions, take your time, and withdraw at any point if it no longer feels right for you.
Final Thoughts
Participating in a clinical trial is a deeply personal decision and one that can lead to access to promising treatments, closer medical attention, and the chance to contribute to something bigger than yourself. Parkinson’s disease research is moving forward every day, and by learning more and staying informed, you’re already playing an important role in that progress. Whether you decide to join a trial now or later, your awareness and advocacy matter.
