PPMI, Effort to Better Understand Parkinson’s, Enrolling Adults

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by Marisa Wexler |

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The Parkinson’s Progression Markers Initiative (PPMI) is expanding to enroll up to 100,000 people with and without Parkinson’s disease through an online portal.

This expanded PPMI study (NCT04477785) is particularly seeking to enroll people who were diagnosed with Parkinson’s in the past two years and are not yet on treatment, as well as adults age 60 and older who don’t have Parkinson’s but have a risk factor for it — including a close relative with Parkinson’s, a known Parkinson’s-associated mutation, and/or acting out dreams in their sleep (REM sleep behavior disorder).

The observational study is also enrolling people with no known connection to Parkinson’s to serve as a control group.

Any adult in the U.S. can sign up to share data online and through a smartphone app; some participants may also be asked to make in-person visits at nearly 50 clinical sites around the world.

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“The large-scale expansion of PPMI promises to change our understanding of Parkinson’s disease diagnosis and enable the development of new PD [Parkinson’s disease] therapeutics,” Ken Marek, MD, the principal investigator of PPMI, said in a press release.

“PPMI data will provide researchers globally the tools to uncover key biological and clinical changes that occur both once PD has begun and more importantly even before symptoms arise with the ultimate goal of disease prevention,” Marek added.

The original PPMI study (NCT01141023) was launched in 2010 by The Michael J. Fox Foundation for Parkinson’s Research (MJFF). The aim of this observational study is to better understand how Parkinson’s develops and progresses by collecting data on people at every stage of disease, with healthy volunteers serving as a comparative control group.

The expanded study is also sponsored by the MJFF, in collaboration with the Institute for Neurodegenerative Disorders, a nonprofit research center based in Connecticut.

According to the foundation, PPMI has generated “the most robust Parkinson’s data set and biosample library in the world” in its first decade. These data are freely available to researchers worldwide; multiple safeguards are in place to remove any identifying information and ensure participants’ privacy. Up to date, PPMI has enrolled and followed more than 1,400 participants.

“By amplifying the patient voice and empowering members of the broader community to contribute to a cure, PPMI promises to fundamentally alter how scientists understand Parkinson’s and conduct brain research,” said Deborah W. Brooks, CEO and co-founder of the MJFF.

Researchers are currently using data from PPMI to design more efficient clinical trials and search for markers of Parkinson’s progression. According to the MJFF, scientists around the globe download data from PPMI on an average of 2,000 times each day.

“Tapping the power of community to expand our knowledge of Parkinson’s biology and the patient experience is how MJFF works to deliver practical results patients can feel in their everyday lives,” Brooks said.

“When the Foundation started in 2000, we set out to change the game on how Parkinson’s research gets done,” said Michael J. Fox. “Two decades later, I’m proud that we have continued to meet this challenge and have become more than just a research organization, but a space where patients bring their wisdom and energy.

“PPMI’s expansion is about getting this done, curing Parkinson’s, boiling down to a biomarker that we can identify early on and prevent the disease from ever impacting another family,” Fox added.

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