In early May, over 325 representatives from the Parkinson’s Progression Markers Initiative (PPMI) gathered in New York City for the study’s annual meeting.
Study leaders — researchers, coordinators, industry partners and volunteers — from 14 countries came together to discuss challenges, opportunities and scientific findings. They also discussed next steps for future research, with a focus on entering the biological era of Parkinson’s research.
PPMI is our landmark study to learn more about how Parkinson’s starts and changes over time. Learn more about PPMI and how you can join at michaeljfox.org/ppmi.
The Michael J. Fox Foundation Chief Program Officer Sohini Chowdhury kicked off opening remarks of the 13th Annual Meeting. She acknowledged the recent groundbreaking biomarker news. “PPMI is changing everything. And it’s having more of an impact than we ever expected,” said Chowdhury.
Ken Marek, MD, PPMI principal investigator, homed in on defining Parkinson’s at a biological level and not based on clinical symptoms. Validated by PPMI, the alpha-synuclein seed amplification assay test can objectively detect disease activity of the Parkinson’s protein alpha-synuclein. “It allows us to move from ‘game changing’ to a ‘paradigm shift,’” said Dr. Marek.
This “paradigm shift” was a key theme of the meeting as we enter a biological era of Parkinson’s research. More information on the biology underpinning disease risk, onset and progression will enable the development of new, varied treatments for people at every stage of disease: recently diagnosed, living with Parkinson’s disease (PD) for years, or even at risk without any visible symptoms.
Here we share highlights, progress and scientific findings coming out of PPMI.
Annual Meeting Highlights Study Progress and Renews Energy in Study Leaders
The conversation around the new biomarker test was among many at the meeting. Study enrollment was also heavily discussed. PPMI is recruiting varied groups. People recently diagnosed or with risk factors and control volunteers without Parkinson’s can join at one of 50 international sites. Anyone aged 18 or older in the U.S. — with or without Parkinson’s — can join online.
Meeting attendees discussed what they are learning about how to meet volunteers and what they are teaching scientists about disease. For example, a mailed postcard campaign was highly successful for engaging people aged 50+ in Germany for smell testing. (Smell loss can be an early signal of Parkinson’s.) From new tests, PPMI researchers are learning some people who enrolled in the study with Parkinson’s may have a related disease (multiple system atrophy) instead. These learnings can help engage more people in research and develop new methods for diagnosing and differentiating diseases. They also can help get the right treatments to the right people.
"Seeing and listening to scientists and researchers from around the world was empowering,” said Marty Acevedo, a PPMI participant with PD who attended the meeting as part of the PPMI Participant Advisory Board.
To date, more than 1,800 volunteers have joined PPMI at a study site, with an ambitious goal of enrolling 4,000. More than 36,000 are participating online. PPMI also offers a smell test to anyone aged 60 and older without PD in the U.S. and Canada; more than 20,000 have consented.
Papers Outline Recent Scientific Findings Out of PPMI
As study leaders shared progress, PPMI data — downloaded more than 13 million times by researchers — continues to fuel discovery. Here we share some of the latest insights from PPMI data analysis.
Predictors of Cognitive Impairment in People with Parkinson’s: Some people with Parkinson’s experience thinking and memory (cognitive) issues. When these issues interfere with everyday life, this is called cognitive impairment. In a paper published in Frontiers in Aging Neuroscience, researchers from Peking University in Beijing, China used PPMI data to evaluate cognitive function. They looked at data from participants with Parkinson’s at enrollment and after five years.
Ninety-four participants (out of 232) developed cognitive impairment in those five years. The scientists looked at factors that could have contributed to developing cognitive impairment. Age and hypertension were both linked to this change. Not everyone with hypertension and PD will develop cognitive impairment. But these findings could help make people aware of their risk. They also could help scientists select participants for clinical trials.
Progression of Autonomic Symptoms: The autonomic nervous system controls “automatic” muscle movements — like heartbeat and breathing — that keep us alive. Many people with Parkinson’s experience autonomic symptoms, such as low blood pressure, bladder problems, constipation and sweating. In a study published in Frontiers in Neurology, researchers from Newcastle University in the United Kingdom used PPMI data to explore autonomic symptoms in people with PD and control volunteers. They found that autonomic symptoms are common in early PD and progressively worsen over the first seven years of disease. This indicates that these symptoms should be treated early in the disease. These findings could help doctors provide better care.
PPMI leaders are working urgently to iterate on new ideas and chart the future of Parkinson’s research. From the United States to Spain to Nigeria, PPMI is partnering with volunteers to speed new treatments and cures. Learn more about PPMI today and help build a new base of disease understanding before our 14th Annual Meeting.
Read an authored opinion piece from Michael J. Fox, in which he mentions this meeting of the study minds and thanks participants for their contributions to research.