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PPMI Dispatch: Meeting of the Study Minds and Clues on Cognitive Change

Scientist in lab holding up blood sample

As our landmark Parkinson’s Progression Markers Initiative (PPMI) marches forward in its massive expansion, study leaders brought updates and ideas to the PPMI annual meeting to continue building this cornerstone of Parkinson’s research. The study is broadening its data set —the most robust in the field — while nimbly responding to emerging priorities and technology.

And PPMI is looking for new volunteer partners to help achieve its goals toward breakthroughs and new treatments. Take a short survey to see if you may be eligible for PPMI.

In this quarterly dispatch from the study, we share topics from the annual PPMI conference as well as new findings from study data.

Annual Meeting Spotlights Study Progress and Future Plans

In mid-May, more than 300 study coordinators, investigators, industry partners and PPMI volunteers met virtually to discuss challenges, opportunities and future plans. Teams from San Francisco to Tel Aviv showcased the study’s global reach and impact built since it began in 2010.

“In the 11 years since PPMI launched, Parkinson’s research and drug development has really undergone significant changes: new therapies into clinical testing; more investment and activity in developing therapeutics; and, most importantly, new therapeutics into patient hands. PPMI has played a significant role in many of these areas,” said MJFF Deputy CEO, Head of Research Sohini Chowdhury in her welcoming remarks.

PPMI follows participants over time to better understand how Parkinson’s disease (PD) starts and changes. Deeper understanding of disease and better ways to predict and track disease could help design and test new treatments to slow, stop or even prevent PD.

At the annual meeting, attendees discussed some standards of the study. PPMI enrolls many people with Parkinson’s risk factors. Some symptoms or brain changes may appear before others. When does Parkinson’s “start”? And what new tests, like assessments of memory and thinking changes or varied brain imaging scans, should PPMI add to make sure they’re getting the clearest picture of disease?

They also reviewed new enrollment. PPMI is growing from around 1,400 volunteers to more than 4,000 participants. Over 40,000 potential volunteers have taken an online screening form. Take a short survey to get started and stay tuned for a broader expansion online later this year.

More sites are joining PPMI, too — growing to 49 sites in 12 countries. See what sites are recruiting now

The meeting featured a panel of PPMI volunteers sharing their motivations for joining the study. Jen Gaudio, 50, from New London, Connecticut, was among the first to join PPMI in 2010 soon after her diagnosis. “PPMI makes me feel like I can do something constructive and leave something good behind me,” she said.

Papers Outline Predictors of Memory and Thinking Issues

The expansion of PPMI is built on a strong infrastructure with a robust set of data already seeding new findings around disease. Just this year, study data has contributed to findings detailed in nearly 40 published scientific papers. Published papers are how scientists share results and detail their methods so that others can learn from them and advance toward more breakthroughs.

Some recent papers resulting from PPMI data analysis focus on predictors of cognitive decline: memory and thinking problems that can come with Parkinson’s disease. These symptoms are some of the hardest to treat and most worrisome for patients and families. 

One study reviewed a connection between a protein called neurofilament light (NfL) and cognitive decline. This protein is released when brain cells are damaged and may help track disease progression.

A group of scientists led by Qingdao Municipal Hospital in China divided PPMI participants with PD into three groups based on their levels of NfL in blood serum when they first joined the study (called baseline). People in the group with the highest levels of NfL at baseline had a greater risk of developing dementia with Parkinson’s. [Read more.]

A test for risk of cognitive decline could help patients know what to expect in their disease — which could guide treatment and lifestyle decisions — and help scientists develop new treatments. Researchers could look deeper at higher-risk participants to see what changes may be leading to memory and thinking issues. And when new therapies are in trials, studies could use tests like one of NfL levels to choose volunteers most likely to develop those symptoms and to show a therapeutic effect.

Another team at the University of Pennsylvania connected modifiable factors to cognitive decline. Reviewing PPMI data, they found that being overweight or having depression, excessive day time sleepiness or REM sleep behavior disorder (acting out dreams while asleep) were all associated with faster rate of cognitive decline. [Read more.]

This information presents opportunities for interventions (e.g., medication, lifestyle changes) that could influence future cognition skills. It also helps scientists look for associations in underlying biology between these symptoms, which could help point to new places for therapeutic intervention.

“PPMI continues to grow and develop in ways we could not have imagined when we began this project 11 years ago,” said PPMI principal investigator Ken Marek, MD, at the annual meeting. “The theme for the upcoming year is opportunity.”

PPMI is seizing the opportunity that technology presents. The study will soon launch an online platform for people with and without PD to contribute data on health and disease. Make sure you’re signed up for MJFF emails to learn how you can get involved.

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