When Nature Reviews Bioengineering recently cited The Michael J. Fox Foundation (MJFF) as an example of meaningful patient involvement, it underscored something core to our DNA: better science starts with the people who live with Parkinson’s every day.
At MJFF, improving the lives of people with Parkinson’s disease (PD) is at the heart of what we do. Our strategic research agenda centers around what will provide the most material improvement for people with PD. Driven by this commitment, the Foundation aims to integrate the perspective of people with Parkinson’s, and the loved ones who support them, into every aspect of our activities. In doing so, we aim to ensure that their lived expertise steers the course of future research and therapy development.
Our in-depth knowledge of the patient experience allows us to guide research efforts, both internal and external, in ways that integrate and value the contributions of people with PD.
Patient-Centricity: A Core Principle
From defining what Parkinson’s disease means day-to-day to surfacing unmet needs, we treat inclusivity, diversity and accessibility in Parkinson’s research as scientific essentials.
This includes engaging with a broad spectrum of patients. Those at varied stages of PD, from diverse backgrounds and geographies, as well as their loved ones who support them, are integral partners, as Parkinson’s has a ripple effect that extends beyond the individual diagnosed.
“We take that connection with our community seriously,” said Maggie Kuhl, head of patient engagement at MJFF. “By truly listening and collaborating, we ensure that their insights not only guide our strategies but also inspire a broader, more inclusive approach to how Parkinson’s research is conducted worldwide.”
How MJFF Incorporates Patient Insights into Research
Our strategic research agenda orbits around four pillars, each developed with the patient experience in mind.
“Our research agenda encompasses all corners of the Parkinson’s experience,” said Kuhl, “We know, because we ask the Parkinson’s community about it. Their input can be seen in every aspect.”
The Michael J. Fox Foundation works to:
- Understand Parkinson’s disease through efforts such as our landmark Parkinson’s Progression Markers Initiative (PPMI), which collects and analyzes data from a global cohort to identify early biological indicators of the disease. By assembling real-world clinical and biological data together, we’re uncovering early biological signals of PD and sharing them openly with scientists, academic teams, biotech start-ups, and pharmaceutical companies daily.
- Improve treatments by prioritizing symptoms that our community identifies disrupt life most like gait, balance and non-motor challenges. Our target advancement and therapeutics portfolios focus on addressing these challenges. Furthermore, this research includes the patient experience by collecting inputs on aspects like how people with Parkinson’s prefer treatments be administered and feed this back to therapy developers
- Accelerate clinical trials through efforts like recruitment consulting, where we help drug developers understand how to best recruit people for their trials, building an informed base of potential volunteers, open science initiatives, which share data across efforts and creating study practices that aim to reduce the burden on participants while enabling faster, more inclusive trials.
- Catalyze community by bringing together scientists, clinicians, people with Parkinson’s and advocates helps us to serve the community while bringing its full power to bear.
To keep perspectives front-and-center, we maintain a diverse lived experience partners network. Our research benefits from varied perspectives, and to ensure that our network includes and expands to more people from underrepresented populations such as people of color, LGBTQ+ individuals, and residents in rural areas.
“We want to hear from everyone, so we ask everyone. A catalyzed community, by definition, demands inclusion,” Kuhl added.
Our lived experience partners lend their expertise to research through:
- Pre-study advising: Participants provide feedback on research designs, such as modifications to survey instruments or trial protocols.
- Focus groups and interviews: MJFF leverages qualitative insights from patients to better understand their experiences, hopes, and fears.
- Panels and advisory boards: Patients serve as key opinion leaders, sharing their perspectives at conferences and with research teams.
By matching diverse individuals with specific research needs, we ensure that Parkinson’s research reflects the lived realities of those most affected.
Turning Know-How into Industry How-To
What we learn does not stay in-house, we publish, present and partner with industry groups to drive patient-focused research. These collaborations include increasing visibility for clinical trials, offering recruitment and retention consultancy, sharing best practices on how to make trials more inviting and more representative, and gathering patient-focused advisory insights. Drawing on learnings from our flagship PPMI study, and insights generated through our work with people with lived experience, our team advises industry partners on everything from how to write plain-language consent forms to culturally sensitive outreach, site selection for clinical trials to designing study protocols that reduce travel burdens—steps that make trials faster and more inclusive.
MJFF runs a number of platforms that have direct benefits for people with PD but also aid industry partners to accelerate trials in search of cures.
- Fox Trial Finder: A platform that lists actively recruiting trials, customizable for patient-friendly language that connects volunteers to studies that fit their lives.
- Buddy Network: An online community for people with Parkinson's disease, their loved ones and caregivers. Spotlights the active trials and resources to a community of over 21,000 users who gets peer-to-peer support and information exchange through this platform
- These resources not only accelerate progress in Parkinson’s research but also ensure that industry partners prioritize patient needs. We share lessons learned well beyond Parkinson’s. Through disease-agnostic engagement consortia such as Clinical Trials Transformative Initiative (CTTI), Patients Focused Medicines Development (PFMD) and PALADIN, MJFF supports creating common practical standards for patient engagement, use of patient experience data, meaningful outcome measures, inclusive research methodologies and best practice tools of industry collaborations.
Looking Ahead
The journey toward a cure for Parkinson’s is a collaborative effort, and MJFF continues to evolve its patient-centric approach. For PD community, the work of The Michael J. Fox Foundation inspires hope—hope for better treatments, faster trials, and ultimately, a cure. At MJFF we recognize, when lived experience contributes to science, the results land closer to everyday needs. Parkinson’s still presents tough questions, yet the clearest answers emerge when the people facing those questions help ask them. That’s why we will keep listening, sharing, and ensuring progress carries patients’ imprint.