This content was developed in partnership with the Parkinson’s Foundation.
Research is vital to helping researchers and doctors better understand Parkinson’s disease (PD). Research leads to a better understanding of symptoms and disease progression, new treatments and medications, and will one day lead to a cure.
When it comes to medical research, the Black community is underrepresented in research (including clinical trials) due to several factors. The inclusion of Black and African Americans in PD research is critical because this research advances our understanding of how the disease specifically affects the Black community and how Black people with Parkinson’s respond to PD treatments. With this information, researchers can identify and develop focused therapies, treatments and medications that can improve the quality of life for Black people living with PD.
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What Is a Clinical Trial?
Clinical trials are a type of research study. 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 regime, 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 so that they can solve unanswered questions about PD and develop new or improved treatments. Current medications are only available because of previous clinical trial participants.
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 to protect the safety of participants. It is important to always consult with your doctor before deciding to participate in any clinical trial.
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What Should I Know Before Participating in A Clinical Trial?
It is important to know that 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 the trials that are currently enrolling participants, visit ClinicalTrials.gov, a database developed by the NIH for patients and their family members. 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? How Does It Relate to Clinical Trials?
Identifying genetic differences among people with PD can help researchers understand how and why people have different experiences with the disease. Genetic testing can help people with PD and their clinicians identify whether they carry a genetic mutation and help determine if 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 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 fisease trial participation: Increasing diversity and novel designs for recruitment and retention. Neurotherapeutics,17(4), 1724–1735.
