- The Michael J. Fox Foundation’s landmark Parkinson’s Progression Markers Initiative (PPMI) study expands recruitment to Canada to help speed cures and disease prevention
- Canadians recently diagnosed with Parkinson’s or aged 60 or older without Parkinson’s are invited to join the study that is now a cornerstone of Parkinson’s research
- Learn more about the study and get started at michaeljfox.org/ppmi
NEW YORK, (April 10, 2023) – The Michael J. Fox Foundation for Parkinson’s Research (MJFF) today announced the Canadian launch of the Parkinson's Progression Markers Initiative (PPMI) — the Foundation’s landmark study to learn more about how Parkinson’s starts, how it changes over time and how to stop it. Teams in Montreal, Ottawa and Toronto are part of 50 international medical centers recruiting study volunteers to add to this robust Parkinson’s data set and biosample library to better define and measure Parkinson’s disease (PD).
First launched in 2010, PPMI is enrolling 3,000 participants at clinical sites, including 2,000 with risk factors for PD in an effort to profile and intervene in the disease before its cardinal symptoms (i.e., tremor or stiffness) arise. Data analysis — including from PPMI — has shown that enduring smell loss (unlike the temporary smell loss seen with COVID) is an early indicator of Parkinson’s risk. Due to these emerging findings, the study is asking anyone aged 60 or older without PD across Canada to take a free scratch-and-sniff test at home to test for site enrollment eligibility at www.mysmelltest.org/canada.
“I know how a Parkinson’s diagnosis can impact an entire family and the many questions it brings,” said Soania Mathur, MD, of Toronto, Canada, MJFF Patient Council member diagnosed with PD at 28, retired family physician and active research participant. “PPMI addresses the full spectrum of disease and its need for everyone to become an active participant in being part of the solution. Participating in research helps us get closer to our dream of preventing this disease from impacting another family and putting the pieces of the puzzle together.”
PPMI Principal Investigator and MJFF Scientific Advisor Kenneth Marek, MD, said “We’re proud to partner with the Canadian Parkinson’s community, world-class medical centers and other partners in our ambitious endeavor to evolve our understanding and measurement of Parkinson’s disease and to enable the development of new PD therapeutics. PPMI is possible only through collaboration, and the addition of these Canadian partners is critical to its success.”
Expanding Landmark Study in Partnership with Canadian Parkinson’s Community
Parkinson's is the fastest growing neurodegenerative disorder, affecting more than 1 million people in North America with incidence expected to double by 2040. MJFF and partners started PPMI in 2010 to identify and validate measures of Parkinson’s onset and progression, which will speed development and testing of therapies to slow, stop or prevent disease. PPMI — sponsored by MJFF and supported by more than 40 private and public partners — enrolled 1,400 participants at 33 sites. Volunteers complete clinical assessments and imaging scans and contribute biological samples over at least five years.
Expansion to the Montreal Neurological Institute-Hospital (The Neuro), Toronto Western Hospital and The Ottawa Hospital — among other centers — has grown the study to more than 50 sites across 12 countries. PPMI’s expansion in Canada is made possible through support from the Weston Family Foundation.
“Parkinson’s affects the lives of too many Canadian families, and we still have much to learn about the disease,” says Emma Adamo, Chair, Weston Family Foundation. “We know that participation in research is the best way to better understand Parkinson’s disease. That’s why we’re so pleased to support the expansion of the PPMI study in Canada.”
PPMI sites are recruiting people diagnosed with Parkinson’s within the past two years and not yet taking PD medication. Canadian residents can travel to U.S. sites as well. PPMI covers travel cost for potential participants and a loved one. Call 877-525-PPMI to learn more and view a list of sites at www.michaeljfox.org/ppmi.
“The global Parkinson’s field feels an urgency to work toward earlier diagnosis, improved treatments and ultimately better quality of life for everyone living with this disease,” says Karen Lee, PhD, President and CEO of Parkinson Canada. “PPMI holds such promise, and we are proud to partner with The Michael J. Fox Foundation around this initiative which will add to the exceptional body of research already taking place across Canada. Our strong, diverse Canadian community is an asset in this shared pursuit of advancing scientific breakthroughs and treatments for everyone.”
Parkinson Canada is supporter of a complementary study: the Canadian Open Parkinson Network (C-OPN), a research network that is studying Parkinson’s across all stages of the disease.
De-identified PPMI data is available in real-time to qualified scientists. The PPMI dataset is a cornerstone of research, with analysis leading to new discoveries that can predict and track progression rates, disease type and medication response. The study’s methods have been adopted by countless other studies, setting field-wide standards and allowing for cross-study comparison.
Broadly Testing for Smell Loss as Parkinson’s Risk Indicator
Also coming to Canada is the PPMI remote smell test program. Data analysis — including from PPMI — has shown that enduring smell loss (unlike the temporary smell loss seen with COVID) is an early indicator of Parkinson’s risk. PPMI will mail anyone aged 60 or older without Parkinson’s a scientifically validated scratch-and-sniff test of smell ability. Participants will enter results online; the study team may invite volunteers for additional screening at a PPMI clinical site. Interested volunteers can visit www.mysmelltest.org/canada for more. PPMI’s remote smell test program will be available in Canadian French in the coming months.
PPMI is also recruiting people with REM sleep behavior disorder (RBD). This sleep condition, where an individual yells, kicks or even jumps out of bed while acting out dreams, can be a Parkinson’s risk factor. People diagnosed with RBD can call the PPMI study team at 866-525-PPMI.
“I’m so grateful to the millions of patients, families and researchers around the world, including my fellow Canadians, for being part of our shared mission in ending Parkinson’s disease for good,” says Michael J. Fox. “PPMI’s global expansion is about inviting more people to join Parkinson’s research. We have the answers in us — we can help speed science toward a better understanding of the disease and ultimately, a cure. Through your support, we can and we will get this done.”
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About The Michael J. Fox Foundation
As the world's largest nonprofit funder of Parkinson's research, The Michael J. Fox Foundation is dedicated to accelerating a cure for Parkinson's disease and improved therapies for those living with the condition today. The Foundation pursues its goals through an aggressively funded, highly targeted research program coupled with active global engagement of scientists, Parkinson's patients, business leaders, clinical trial participants, donors and volunteers. In addition to funding $1.75 billion in research to date, the Foundation has fundamentally altered the trajectory of progress toward a cure. Operating at the hub of worldwide Parkinson's research, the Foundation forges groundbreaking collaborations with industry leaders, academic scientists and government research funders; creates a robust open-access data set and biosample library to speed scientific breakthroughs and treatment with its landmark clinical study, PPMI; increases the flow of participants into Parkinson's disease clinical trials with its online tool, Fox Trial Finder; promotes Parkinson's awareness through high-profile advocacy, events and outreach; and coordinates the grassroots involvement of thousands of Team Fox members around the world. For more information, visit us at www.michaeljfox.org, Facebook, Twitter, LinkedIn.
Media Contact:
Kristina Magana
The Michael J. Fox Foundation
kmagana@michaeljfox.org
212-509-0995