According to the Parkinson’s Foundation, Parkinson’s disease (PD) affects 1.1 million people in the United States, with 90,000 patients newly diagnosed each year. Studies indicate that Black Patients with PD are underdiagnosed and undertreated compared to white patients, which is further compounded by the underrepresentation of Black patients in clinical trials.
A new study is assessing the benefits of at-home smell tests to advance PD research and improve outcomes for diverse populations.
When I learned that the Cleveland Clinic Brain Study was seeking Black patients to participate in an initiative to determine early biomarkers of neurological disease, I immediately requested information on how to participate. But following a subsequent phone screening, I was deemed ineligible for the trial. Participants are required to live near the Cleveland Clinic’s main campus in Ohio, a clearly unreasonable commute from Charleston, S.C.
So, when I came across a social media advertisement for the Parkinson’s Progression Markers Initiative (PPMI), a landmark study from The Michael J. Fox Foundation for Parkinson’s Research, I jumped at the chance to participate. PPMI is in the process of enrolling participants with risk factors for Parkinson’s and for those over the age of 40 without PD.
Last month, I received my The Smell Identification Test ™ in the mail, consisting of four ten-page booklets with a scratch-and-sniff patch on each page and multiple-choice answers identifying each smell. The smell portion of the test took about 15 minutes, and another 10 minutes to share my results in my dedicated portal on the PPMI website.
Barriers like distance, inflexible schedules, and travel costs often keep underrepresented groups out of clinical trials, leaving research less representative of the people it aims to help. Programs like the Parkinson’s Progression Markers Initiative (PPMI) and other low-barrier strategies change that by allowing participants to contribute from home with simple mailed kits. The kit makes participation practical for anyone, regardless of location, and helps ensure that diverse data are included in Parkinson’s research.
The PPMI Study Team at Indiana University (IU), led by Tatiana Faroud, PhD, manages the online screening and is part of a multi-site research study focused on identifying biomarkers to help develop effective treatments for Parkinson’s disease.
PPMI launched in 2010 to help researchers understand how Parkinson’s disease develops. It is a long-term observational study that tracks participants with Parkinson’s and those without, collecting health data, lifestyle information, and biological samples over time to identify biomarkers or measurable signs of the disease.
Biomarkers can help researchers detect PD earlier by monitoring its progression and developing more effective treatments. Participants are asked to complete surveys online, perform tests at home, such as the Smell Identification Test™, and attend in-person clinical visits upon request from the PPMI team. PPMI notes that if participants are invited to complete additional tests at a study site, they will cover travel costs for volunteers and one study companion.
In 2023, PPMI scientists discovered a biomarker for Parkinson’s by looking for an abnormal protein in the body that is a hallmark of PD. This information will transform future trials and treatments. PPMI gathers data from a diverse group of participants to identify early signs of Parkinson’s and improve care. Its success depends on who participates, and without sufficient representation from underrepresented groups, the findings could miss key disparities and limit the development of treatments that work for everyone.
PPMI credits study volunteer participants with the 2023 breakthrough, and they’re still recruiting participants. If you’d like to help researchers obtain the tools necessary to treat Parkinson’s, you can request a smell test and get started right away.
Researchers are also seeking input from people who act out their dreams during REM sleep, a condition called REM sleep behavior disorder (RBD). This can be an early sign of neurodegenerative risk, and anyone who punches, kicks, yells, or moves physically during dreams can contribute valuable data to the study even without a formal diagnosis. Anyone in the U.S. who is 18 or older can join the PPMI online cohort and share health information through surveys and other remote activities. These options make it easier for more people to take part and help advance Parkinson’s research.
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