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The Study that Keeps Changing Everything: Dispatch from the PPMI Annual Meeting

PPMI AIM Conference 2024

“You can take one victory lap and then back to work.” – PPMI Investigator Tanya Simuni, MD

The Parkinson’s Progression Markers Initiative (PPMI) acknowledged a year of significant milestones in Parkinson’s disease (PD) research at its annual meeting in early May. Following the validation of a biomarker for Parkinson’s pathology and the publication of a biological staging framework, PPMI study leaders and participants convened in New York City to discuss the year of breakthroughs and chart next steps toward cures and better treatments in the “biological era of Parkinson’s.”

The PPMI study gathers information from participants over time to learn how Parkinson’s starts and changes and how to stop it. [Not in PPMI? Join through]

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The meeting started with introductions for more than 300 people. Most knew each other; some were new. It took 38 minutes out of a day packed from 8 a.m. to 6 p.m. with programming. The room applauded certain individuals: participants who had given of themselves for a future with no need for such a meeting.

The 300+ were the architects and builders of PPMI, and the introductions were relevant because PPMI is built of people — 50 site teams from 12 countries, many staff who centrally drive the study forward, and most importantly participants.

Building New Findings

More than 40,000 people (about twice the seating capacity of Madison Square Garden) have added data in the PPMI online platform. Over 3,000 have shared data and biosamples at one of 50 PPMI clinical sites. Your contributions are changing how scientists view Parkinson’s and how, together, we will reach cures.

At the PPMI meeting, scientists discussed some notable observations:

  • PPMI has more to learn about SAA- PD. Not everyone with a Parkinson’s diagnosis tests positive for misfolded alpha-synuclein (the hallmark protein associated with PD) with the new biomarker test, called SAA. PPMI studied people with a LRRK2 genetic mutation and PD in both groups: SAA- (30-40% of LRRK2 PD) and SAA+. They saw slightly faster progression and younger age of onset in SAA+. PPMI aims to enroll more SAA- individuals to learn more about this disease path.


  • Smell loss and acting out dreams linked to Parkinson’s pathology. PPMI enrolls people with clinical risk factors of disease: smell loss, acting out dreams. About 60-70% of people with significant smell loss (<10% of expected smell ability) were SAA+. The percentage was around 80-90% in people who act out dreams and have smell loss. The study continues to enroll these individuals to learn more about how and when Parkinson’s disease begins.
  • Some people with bipolar disorder may be at higher risk of developing Parkinson’s disease. People who self-reported bipolar without Parkinson’s were 1.6 times more likely to have a positive alpha-synuclein SAA test (though the overall risk remains relatively low). This may highlight another population for prevention strategies and point scientists to look at the biological overlap for new therapeutic strategies.

To build on these discoveries and more, PPMI aims to invite more people to share data and samples at a PPMI clinical site. The study likely will invite younger people (aged 40 or older) to take a smell test for risk screening. It also may enroll more people with a Parkinson’s disease diagnosis. Join the online platform to be invited for additional screening when the study is ready.

Sharing Research Data

The topic of much discussion at the meeting — especially from participants in attendance — was the study’s new effort to return some research data back to participants. PPMI has begun sharing back some individual information (such as DAT scan data) through the study’s participant portal ( The study is rolling out availability of this information to clinic participants over the next few months and may add more data types over time. Learning one’s information is completely voluntary and counseling is available at any point.

This effort is another example of PPMI paving the way in research. Sharing back this type of research data through a web portal and to people with clinical risk factors but not a Parkinson’s diagnosis are new approaches. The study is undertaking this process thoughtfully to understand its impact on individuals and on PPMI scientific aims. Participant partners have given feedback on this process at every step.

Personal research information may also help some participants enroll in a planned prevention trial. PPMI is working with industry partners toward a therapeutic trial in people with early-stage Parkinson’s, without movement symptoms or functional impairment. The study will leverage PPMI sites and participants for this milestone study. We will share more as the team marches toward study launch late next year.

Moving Ahead

The PPMI annual meeting underscored the remarkable progress made and the dedication of its participants and researchers. As PPMI continues to move forward, the collective effort of this community remains crucial in the quest to understand, better treat and ultimately prevent Parkinson’s disease.

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