Data collection, screening expanded in Parkinson’s disease study
MJFF's PPMI will now provide tests to people, 40 years and older
The Michael J. Fox Foundation (MJFF) is expanding its Parkinson’s Progression Markers Initiative (PPMI) to provide free Parkinson’s disease risk screening to people 40 years and older.
The move will allow PPMI to screen more people using blood testing and tests of smell loss, a possible early symptom of Parkinson’s. The screenings were available to people ages 60 and older, but now those over 40 without Parkinson’s or over 30 and diagnosed with the disease in the past seven years can request a smell test online.
An expanded online platform, called myPPMI, will also let anyone in the U.S. ages 18 and older contribute data to the long-term study, which seeks to understand the biological and clinical markers of Parkinson’s.
“Since PPMI began, the study has risen to meet current scientific needs while looking forward to anticipate the infrastructure and novel data required for future research,” Kenneth Marek, MD, PPMI’s principal investigator, said in an MJFF press release. “Partnering with more participants, in the clinics and online, offers new opportunities to develop more tools and learnings to speed therapies while also engaging a broader audience of potential volunteers for the clinical trials to come.”
Parkinson’s is a complex disorder caused by the degeneration of brain cells that produce the neurotransmitter dopamine, a chemical messenger essential for motor control. Diagnosing the disease is complex and is particularly challenging early in the disease when symptoms may be less pronounced.
Improving Parkinson’s diagnosis, research
To address this, PPMI collects data on symptoms and biological markers associated with Parkinson’s. The study led to the development of a biomarker test in 2023 for the protein alpha-synuclein, which forms toxic clumps in the nervous system of those with Parkinson’s. The test, known as the alpha-synuclein seed amplification assay (a-syn SAA), became the first to detect these clumps in living people.
In a cross-sectional study involving more than 1,000 participants, the test correctly identified about 88% of people who actually had signs of Parkinson’s. Some of those aged 60 and older who hadn’t yet been diagnosed also tested positive for alpha-synuclein clumps, suggesting they could be at risk for the disease. Severe smell loss was correlated with positive a-syn SAA results and the test was most accurate among those with this symptom.
Expanding a-syn SAA and smell testing will allow PPMI to continue innovating, said MJFF chief program officer Sohini Chowdhury. “In science, each answer begets more questions. PPMI is iterating to build on past success and drive to the next breakthrough,” Chowdhury said.
PPMI has also collected health and wellbeing data from more than 46,000 online volunteers, which researchers will use to identify more predictive features of the disease. Now, volunteers in the U.S. ages 18 and older will be able to participate through the study’s online platform, myPPMI, possibly widening the pool of contributors. With myPPMI, researchers are also sharing personal data with study participants, including the results of their a-syn SAA tests, brain scans, and movement assessments.
“Joining PPMI has been an empowering step in my Parkinson’s journey and I’m glad that the new platform will make it easy to contribute more to the study,” said PPMI community advisory board member Marty Acevedo. “Furthermore, I’m glad that the study is now returning some personal research information back to us participant partners. This knowledge on our own disease can help navigate care and research decisions.”
The PPMI dataset is open access, allowing researchers outside the study to draw on its results.
“We are grateful for the efforts and contributions of the study team, the scientists, the sites and most importantly the study’s generous volunteers who have helped change what we know about this disease and how research is moving to stop it,” Chowdhury said.
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