Parkinson’s Disease Research and Clinical Trials: What You Need to Know

This content was developed in partnership with the Parkinson’s Foundation.

Clinical trials are vital to helping researchers and healthcare providers better understand Parkinson’s disease (PD). Research leads to a better understanding of symptoms and disease progression, new treatments and medications, and hopefully, a cure one day.  

When it comes to medical research, the Black community is underrepresented due to several factors, including medical distrust of the healthcare system and a lack of awareness of clinical trials. The inclusion of our community in PD research is critical because it can advance our understanding of how the disease affects the Black community and how we respond to treatments. With this information, researchers can identify and develop therapies and medications that can improve the quality of life for Black people living with Parkinson’s disease. 

What is a Clinical Trial? 

Clinical trials are research studies that involve human participants to evaluate the effectiveness and safety of a new drug or treatment. After developing a new treatment, scientists will conduct a clinical trial to test it. These trials could test a new medication, surgical procedure, or type of therapy. Clinical trial participation can include completing surveys, testing an exercise regimen, or following new diet guidelines.

Why are Clinical Trials Important? 

Clinical trials are the only way we can reach safe, regulated, and approved breakthroughs in treatment and care. Researchers need volunteers to participate in clinical trials to address unanswered questions about PD and to develop new or improved treatments. In fact, the current medications we use today are only available because of participants in previous clinical trials, so they are critical to the evolution of medicine.   

Are Clinical Trials Safe? 

It is understandable to have hesitations about participating in a clinical trial. Every clinical trial is reviewed by regulatory bodies such as the U.S. Food and Drug Administration, the National Institutes of Health (NIH), or an institution’s ethics board (i.e., the Institutional Review Board) to protect participants’ safety. It is important to always consult with your doctor before deciding to participate in any clinical trial to ensure it’s the right choice for your health needs and goals. 

What Should I Know Before Participating in a Clinical Trial? 

The research team is legally required to clearly explain the risks of participating. You have the right to ask questions and withdraw from participation at any time. Participation in studies is always voluntary. 

If you are considering participating in a PD clinical trial and want up-to-date information on trials currently enrolling participants, visit ClinicalTrials.gov, a database developed by the NIH for patients and their family members, or BlackDoctor’s Clinical Trial Resource Center.

From our partner

People 16+ years old struggling with lupus: Find out if the PHOENYCS FLY Study may be for you. Study-related care provided at no cost.

Visit Parkinson.org to learn more about the benefits and risks of participating in clinical trials and remember that you can discuss questions or concerns with your doctor. 

Why is Genetic Testing Important, and How Does it Relate to Clinical Trials? 

Identifying genetic differences among people with PD can help researchers understand how and why people experience the disease differently. Genetic testing can help people with Parkinson’s disease and their clinicians determine whether they carry a genetic mutation and whether they are eligible to enroll in certain clinical trials. Several ongoing clinical trials are already testing treatments for people who carry certain PD gene mutations.

For people with Parkinson’s, genetic tests and counseling are not always available or covered by health insurance. To address these barriers, the Parkinson’s Foundation launched PD GENEration: Mapping the Future of Parkinson’s Disease, a study that offers genetic testing and genetic counseling at no cost to all people with PD in the U.S. and some Caribbean Islands.

Learn more about clinical trials, genetic testing, and their impact on PD on the Parkinson’s Foundation website:

• Neuro Talk: Top PD GENEration FAQ, James Beck, PhD, Parkinson’s Foundation Chief Scientific Officer, answers questions about the national genetics study, PD GENEration, and genetic testing. 
• The Skinny on Clinical Trials in PD, Hubert Fernandez, MD, describes the process of bringing a drug to market, why people need to participate in clinical trials, and what they can expect.
• Become a Research Advocate and learn how people with PD and care partners can make research more efficient and effective by partnering with scientists, industry, and government to represent their community’s voice.

This content was developed in partnership with the Parkinson’s Foundation. To learn more about Parkinson’s disease and find resources to help you live better with Parkinson’s, visit Parkinson.org or call the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636). 

References 

• Parkinson’s Foundation, Parkinson.org
• Mainous, A. G. III, Smith, D. W., Geesey, M. E., & Tilley, B. C. (2008). Factors influencing physician referrals of patients to clinical trials. Journal of the National Medical Association, 100(11), 1298–1303.  
• Vaswani, P. A., Tropea, T. F., Dahodwala, N. (2020). Overcoming barriers to Parkinson’s disease trial participation: Increasing diversity and novel designs for recruitment and retention. Neurotherapeutics,17(4), 1724–1735.