For Larson Rose, the symptoms started in 2017. First his arm would shake; then his body stiffened, and his leg involuntarily tensed up. A neurologist told him he might have Parkinson’s disease, a diagnosis confirmed three years later by a movement disorder specialist.
Rose, 63, is among the nearly 60,000 people in the United States who get a Parkinson’s disease diagnosis each year. He is also participating in a new research program at NYU Langone Health, in partnership with The Michael J. Fox Foundation for Parkinson’s Research. The Parkinson’s Progression Markers Initiative (PPMI) seeks to better understand the degenerative neurologic condition to help diagnose and treat the disease at symptom onset—and before.
“I wanted to do something that would make me feel like less of a victim and give me some sense of power,” says Rose, for whom contributing to the research is a way of giving back. “I decided to join the research study and try to become an active participant to find out how to help people like myself.”
Participants contribute information and biological samples periodically over a course of five years. Comprehensive physical examinations, cognitive skills evaluations, imaging scans, and cellular analyses are building the most robust data set in Parkinson’s disease research. De-identified data is shared with the broad research community to speed breakthroughs.
“There is much to understand about how Parkinson’s disease develops and progresses,” says Giulietta M. Riboldi, MD, PhD, research assistant professor in the Department of Neurology at NYU Grossman School of Medicine and site investigator for PPMI at NYU Langone. “Each PPMI volunteer contributes to the effort toward finding markers that are unique to people with Parkinson’s disease or who are at risk of Parkinson’s disease. These markers could lead to earlier, faster diagnosis, and the development of therapies to slow, stop, or prevent the disease.”
NYU Langone joins a PPMI network of nearly 50 clinical sites in 12 countries. Dr. Riboldi and her team are actively recruiting people with a recent Parkinson’s disease diagnosis and people aged 60 or over who do not have Parkinson’s disease but are living with certain risk factors: smell loss or a sleep disorder where you act out your dreams.
The study is also looking for people with no known connection to Parkinson’s disease who wish to participate as control volunteers. The robust PPMI study, first established in 2010, seeks to accelerate the development of treatments, cures, and ultimately the prevention of Parkinson’s disease. NYU Langone is one of only two sites in the greater New York City area actively enrolling participants in the initiative’s study. To learn how to participate in the study, call 646-501-4367.