Research is stronger when it’s shaped with patient partners. We build learnings and resources to recruit and retain study participants, gather patient experience data, and connect researchers with the Parkinson’s community.
Leveraging the Foundation’s 1M+ lived experience audience and knowledge gleaned from our sponsored and funded studies, our partnerships with pharma, biotech and academia help integrate patient perspectives in study design and delivery. These efforts make R&D more efficient and successful with fewer amendments, faster recruitment, and more meaningful evidence for investors, regulators, and payers.
On this page, read more on our services and reach out to start a conversation. Scroll to the bottom for a list of resources to enable your patient-centered research practices.
MJFF Patient Engagement Portfolio
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Patient Experience Data
We generate and share evidence to inform R&D and communication with key stakeholders. Our vast portfolio includes findings on unmet needs, patient preferences and priorities, and meaningful impact.
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Patient Advisors
We connect industry partners with people with lived experience. These advisors work with staff across all stages of research to inspire and inform toward accessible and meaningful studies and outcomes.
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Study Planning Input
We have seen many Parkinson’s studies. Let us help you avoid amendments, recruit faster and improve compliance by sharing what we’ve learned while you put together study plans and protocols.
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Recruitment & Retention
MJFF knows study recruitment. We can promote your study to our audience as well as consult on recruitment and retention tactics, messaging and vendors to help reach, recruit and retain participants.
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Fox Trial Finder
Our online trial-matching tool connects interested volunteers and relevant studies. We help speed recruitment through customized study listings, trial website building, and outreach to eligible users.
Ready to Partner with Us?
- Submit a Request
Complete our Patient Engagement Request Form to share your goals and timeline. - Have a Conversation
We’ll connect to discuss your program needs, clarify objectives, and determine the type and level of support that fits best. - Get Support
Our team will work with you on planning and implementation of our support. - Share Learnings
Throughout and after our engagement, we’ll exchange learnings and reflect on outcomes to continuously improve patient-partnered research.
“Our partnership with The Michael J. Fox Foundation led to the best experience I’ve had recruiting for a patient advisory board. The process was smooth, efficient, and thoughtful.”
Industry Partner
MJFF Patient Engagement Resources
MJFF has created resources such as templates for study communications, tools to support recruitment and retention, and publications that share learnings from patient engagement and patient experience work. Explore these resources below.
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Accelerating Clinical Trials Manual
This best-practices manual shares strategies for optimizing clinical trial design, increasing awareness for participation and addressing frequently encountered challenges.
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Recruitment and Retention Toolkit
This suite includes patient-friendly tools that trialists can customize and use to demystify research and present a study to the Parkinson's community. The toolkit includes templates and guides for practical trial needs.
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Fox Insight Data Exploration Network
Fox DEN is a tool to explore, download and analyze patient-reported outcomes and genetic data from the Fox Insight study.
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Parkinson’s Disease Publications
Explore publications connected to MJFF support, from broad Parkinson’s research to Fox Insight papers focused on patient insights. Two complementary collections:
Fox Insight Publications
A focused list of publications using Fox Insight data, highlighting patient-reported outcomes and insights.
MJFF Publications
A searchable, open access collection of MJFF-supported publications with evidence and examples on patient experience, patient engagement, and research participation in Parkinson’s.
Field‑wide Patient Engagement Frameworks
In addition to MJFF resources, we draw on and contribute to field‑wide patient engagement standards. Below are publicly available resources many teams use. MJFF can help you apply them in Parkinson’s research.
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PALADIN Playbook & Resources Repository
Consensus based guidance and shared learnings with publicly available resources on how patient advocacy groups and industry partners can work together to improve drug development.
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CTTI Recommendations: Patient Groups & Clinical Trials
Recommendations and tools for effective collaboration between patient groups and sponsors across the trial continuum.
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EUPATI Guidance on Patient Involvement in Industry Led R&D
Guidance on how industry and other stakeholders can involve patients throughout medicines R&D, including roles, contracts, training and compensation.
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National Health Council Patient Engagement Fair Market Value (FMV) Calculator
A practical tool to help sponsors set fair, consistent compensation and reimbursement for patients, caregivers, and patient representatives involved in patient engagement activities.
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MRCT Center: Achieving Diversity, Inclusion, and Equity in Clinical Research
Guidance and toolkit with practical steps, tools and case studies to improve diverse representation in clinical research, including outreach and site strategies.
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MRCT Center: Return of Aggregate Results Toolkit
Guidance and templates to return aggregate trial results to participants in plain language, including sample summaries, checklists, and language tips.
