The Study that’s Changing Everything: Landmark Michael J. Fox Foundation Brain Health Study Announces Expansion
Earlier this year The Michael J. Fox Foundation’s (MJFF) landmark research study, the Parkinson’s Progression Marker Initiative (PPMI), took the stage at the PPMI Annual Investigator’s Meeting in New York City to share the ambitious future of the study.
Originally launched by the Foundation in 2010, PPMI is heralded as “the study that’s changing everything” about how Parkinson’s is diagnosed, managed and treated. Today, PPMI is made possible by the nearly 4,000 volunteers at more than 50 clinics around the world and 45,000 participating online — including both people living with and without Parkinson's disease (PD) — as well as those living with risk factors.
PPMI has changed the state of Parkinson’s research and what scientists know about the brain. Over the last decade, PPMI has followed people — with and without Parkinson’s — over time to learn more how the disease starts and changes. That information can help doctors and scientists better diagnose, treat, and even prevent brain disease.
In 2023, an international coalition of scientists led by MJFF used PPMI data to validate a biomarker test for Parkinson’s, a tool that can detect the earliest biological signs of the disease in living people. Researchers discovered this new tool by looking for abnormal alpha-synuclein, the protein that is a hallmark of Parkinson’s disease, in spinal fluid. This monumental breakthrough is already opening the door to more effective clinical trials and improved understanding of PD, which will lead to the possibility of personalized care for each Parkinson’s patient.
Now, PPMI has expanded the study to include additional cohorts and updated technologies to further explore the intricacies and etiology of Parkinson’s disease. The expansion builds on PPMI’s longstanding commitment to drive and deepen understanding of the biological fingerprint and clinical footprint of PD. PPMI is now offering multiple ways to get started, including looking for volunteers who:
· Have been diagnosed with Parkinson’s in the last seven years and are aged 30 or older
· Are aged 40 or older without Parkinson’s
· Act out dreams while asleep (This condition is called REM sleep behavior disorder or RBD)
Participants during a presentation at the 2025 PPMI annual investigator's meeting.
Interested volunteers can take the first step and request a free scratch-and-sniff test at michaeljfox.org/expansion. (Smell loss can be one of the earliest signals of PD, revealing changes in the brain long before motor symptoms begin. Researchers are studying this link to learn more about the connection.)
Looking for another entry point? Anyone aged 18 or older in the United States can contribute data on health and wellbeing online through surveys with the newly relaunched myPPMI study participant platform here.
“Since PPMI began, the study has risen to meet current scientific needs while looking forward to anticipate the infrastructure and novel data required for future research. Partnering with more participants, in the clinics and online, offers new opportunities to develop more tools and learnings to speed therapies while also engaging a broader audience of potential volunteers for the clinical trials to come,” said PPMI’s principal investigator and distinguished scientist at the Institute for Neurodegenerative Disorders, Kenneth Marek, MD.
People living with Parkinson’s, their loved ones and supporters often feel empowered by participating in research. Everyone has a role on the road to disease discoveries and treatments.
“I know my bigger purpose of this diagnosis is to use my voice to help others, spread awareness and do my part to help find a cure. Getting involved can be the most freeing and purpose-filled thing you do. It changes the narrative from fear to action,” said PPMI participant and person living with PD Diana Rodriguez, 40, of Toronto, Canada. (Read more of Diana’s story here.)
“PPMI’s goal is to develop the tools required to enable precision medicine for Parkinson’s disease,” said Kenneth Marek, MD, president and senior scientist at the Institute for Neurodegenerative Disorders (IND), principal investigator of PPMI and special scientific
Visit michaeljfox.org/ppmi, call 877-525-PPMI or email joinppmi@michaeljfox.org to learn more and get started today.
PPMI is a $750-million public-private partnership. Major funding for PPMI comes from the Aligning Science Across Parkinson’s Initiative (ASAP), a global research initiative focused on accelerating the pace of discovery for Parkinson’s disease. ASAP support is enabling expanded PPMI recruitment efforts and remote testing as well as assay development efforts to enable breakthroughs such as the 2023 biomarker discovery. This infrastructure provides a ready platform for future discoveries.
In addition to ASAP, PPMI is supported by the Edmond J. Safra Foundation, the Farmer Family Foundation, Connie and Steven Ballmer, and Susan and Riley Bechtel. The study is additionally funded by a consortium of more than 40 biotech and pharmaceutical firms providing financial and in-kind support, and by tens of thousands of individual donors to The Michael J. Fox Foundation.
The Michael J. Fox Foundation is a Champion Partner of the World Parkinson Coalition®. They have been supporting the Coalition since inception in 2004. Follow them to learn more about their work on policy and research on Instagram, Facebook and LinkedIn. For questions about advocating for Parkinson’s policies, please email policy@michaeljfox.org.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not reflect the opinions or positions of the World Parkinson Coalition®