A diagnosis of Parkinson's disease (PD) is a life-changing event, but for Joann, the uncertainty of the unknown was far more stressful. In order to protect her privacy, Joann has asked that we omit her last name and any other identifying details.
"It's hard to believe that doctors may not know what's wrong," shares Joann, who went through multiple doctor visits and tests before discovering she has Parkinson's. When invited to help find a way to diagnose and track PD by participating in a clinical research study, she wholeheartedly agreed.
Currently, there is no identified biomarker of Parkinson's. A biomarker -- such as cholesterol level for heart disease -- is a substance or characteristic in the body that helps track the presence or progression of a disease. If we were to discover one, it would allow doctors to diagnose PD more easily and intervene earlier.
The Systemic Synuclein Sampling Study (S4), sponsored by The Michael J. Fox Foundation, aims to determine if and how alpha-synuclein, a promising PD biomarker, can be used to diagnose the disease, track progression and evaluate the impact of therapies. The study measures alpha-synuclein levels in spinal fluid, blood and saliva, as well as skin, colon and salivary gland tissues. S4 will analyze these tissues and fluids to form a holistic picture of how alpha-synuclein around the body relates to Parkinson's disease.
Shortly after her diagnosis and before starting treatment, Joann enrolled in S4. She describes her experience so far as "pretty simple." First, she discussed the pros and cons of participation with her doctor. Then she underwent a series of tests to confirm she was eligible. Since joining the study, Joann has given various tissue and fluid samples over the course of several doctor's visits. She found these procedures to be relatively "routine" and much like ones that can be regularly performed in a doctor's clinic.
When discussing her participation, Joann says, "When something so simple can have such a profound impact, it should definitely be done."
Joann's entire participation in the study shouldn't take more than a few months. She's using this time to educate herself about Parkinson's and the available treatment options. This way, she feels she'll be prepared to talk to her doctor about the best plan for her when she finishes the study. "I have found inspiration in learning about the disease and knowing that so many people -- including physicians, researchers and study participants -- are dedicated to curing it together," she says.
Joining the search for a cure was the initial reason why Joann agreed to participate, but once she learned that genetic factors can play a role in causing PD, her participation gained new meaning. "It makes me feel that my children, if they get diagnosed decades later, would benefit from my participation today. Whatever I can do now to help them, I will do," promises Joann, adding that she hopes to hear about and participate in other studies in the future.
S4 is seeking individuals who are newly diagnosed with Parkinson's disease and are not taking medication. To learn more visit Fox Trial Finder.
Don't think you're eligible for S4 but want to get involved with Parkinson's studies? Browse Fox Trial Finder to find other recruiting studies online and in your area.
This blog was written by Anna Boyum, PhD, a biomedical scientist by training who writes extensively on neuroscience.