How smell loss is connected to brain health
As we get older, our sense of smell wanes. However, smell loss may be a red flag, indicating neurological disorders such as Parkinson’s disease.
The Michael J. Fox Foundation has been conducting a study for the past 15 years to determine possible markers for the disease, which has no cure.
“We’re trying to understand how the disease starts and progresses over time,” said Maggie McGuire Kuhl, vice president of research engagement at the Michael J. Fox Foundation.
Now the foundation is asking people over 40 to take a smell test that one day may be the first step in detecting the disease.
A 15-minute test
Anyone age 40 or over without Parkinson’s disease can take the smell test.
Once you sign up on the website, the foundation will mail you the University of Pennsylvania’s Smell Identification Test. The smell test consists of 40 pages of scratch-and-sniff scents, one per page, such as lemon, pizza, gasoline, onion and cinnamon. You enter your answers on the website, and in 15 minutes, you’re done.
Longitudinal study
If your results show a poor sense of smell, researchers may invite you to participate in the foundation’s longitudinal study, known as Parkinson’s Progression Markers Initiative (PPMI).
So far, Kuhl said, 90,000 people have taken the smell test, and around 13,000 have been eligible for additional testing at one of the longitudinal study’s 32 U.S. sites, including one at Johns Hopkins in Baltimore, or sites in 12 other countries.
Now the foundation needs another 400 people with Parkinson’s and 1,000 people without it to participate in the clinic portion of the trial.
“We’ve had a lot of folks join us in this effort, but we still need many more,” Kuhl said.
Participants in the PPMI study will receive travel expenses for them and a companion, plus compensation for their time. In addition, they will receive some of their test results.
Researchers are searching for ways to detect Parkinson’s disease before it strikes, much like monitoring cholesterol or blood pressure to prevent heart attacks.
“We really need more markers and tests to understand someone’s specific disease and then know how to treat them,” Kuhl said. “Our main goal is to prevent Parkinson’s — that’s why we’re looking at so many people without Parkinson’s who perhaps have some of the risk factors,” she said. “Early detection is key.”
Results of the study so far
The foundation’s landmark PPMI study has been underway for 15 years, and so far it has discovered at least one reliable marker for the disease.
About 10 years ago, researchers developed a new way to detect looming Parkinson’s in spinal fluid.
“Through this study we have had a breakthrough in detecting the biology of the disease,” Kuhl said. “We still have a lot of questions to answer, but we’re on the right track — and this study is a partnership to bring us to more answers.”
To find out more about the longitudinal study, call 1-877-525-PPMI. To request a smell test, visit mysmelltest.org/beacon or call 1-888-830-6299.