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OHSU study looks for people with reduced sense of smell for Parkinson’s disease research

Michael J. Fox Foundation-sponsored study hopes to discover biomarkers for Parkinson’s disease

Many people with Parkinson’s disease report a loss of sense of smell (called “hyposmia”), often beginning years before the onset of the motor symptoms of Parkinson’s.

A new study at Oregon Health & Science University is looking to explore that potentially important issue further. Investigators are looking for people over the age of 60 who do not have Parkinson’s disease to take a brief smell survey as part of a new phase of a landmark study called the Parkinson’s Progression Markers Initiative.

OHSU is one of 24 sites around the world that are part of the $55 million Parkinson’s study sponsored by The Michael J. Fox Foundation for Parkinson’s Research. During the last three years, the study has been working to identify biological markers of Parkinson’s disease progression. Now, this new phase of the study will seek to better understand potential risk factors of Parkinson’s and to develop tools to detect the disease before the motor symptoms of Parkinson’s – tremors, slowness of movement and rigidity – begin.

Researchers will explore whether testing for a reduced sense of smell might be combined with other measures to identify people who may be at risk for developing the disease. Other potential risk factors being studied include rapid eye movement sleep behavior disorder (diagnosed through a sleep study) and a mutation in a gene called LRRK2 (found by genetic testing). Validating these risk factors could not only enable earlier detection of the disease, but might also open new avenues in the quest for therapies that could slow or stop disease progression.

“Understanding risk factors for Parkinson’s disease may allow us to develop therapies to prevent the onset of motor symptoms in future generations of Parkinson’s disease patients,” said Penelope Hogarth, M.D., an associate professor of neurology and genetics at OHSU. “We are proud to be a part of this innovative research and are looking to the local community for volunteers over the age of 60 to join us in the effort.”

Portland-area residents who are interested in the research can become one of the 10,000 individuals needed to complete a brief online or paper survey about their sense of smell. People over the age of 60 who do not have Parkinson’s disease are needed to participate. Most survey respondents will be sent a scratch-and-sniff smell test and brief questionnaire in the mail to be completed at home. Some individuals may also be asked if they are willing to undergo more extensive testing at OHSU.

OHSU has been part of the PPMI study for three years and is now enrolling study participants in the new pre-motor phase of the study.

“In the third year of PPMI, it is evident that a large-scale biomarker study is not only possible in Parkinson’s disease, but is already yielding scientific insights that could help transform the field of Parkinson’s research,” said Todd Sherer, Ph.D., chief executive officer of The Michael J. Fox Foundation for Parkinson’s Research. “None of this progress would be possible without the willing volunteers who donate their time and energy to the pursuit of a cure.”

If you are interested in taking the smell survey, please visit, call 1-877-525-PPMI (7764), or contact OHSU study coordinators Alicia Portillo or Art Lenahan at 503-494-1382.

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