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21 ORGS · 186 ACTIVITIES ← all strategies ·
approach

Patient-Centered Research Acceleration

methodology: patient-centered_research

By integrating patients and families as active partners in research design, governance, and data collection, we accelerate the development of meaningful therapies, because lived experience ensures scientific priorities align with real-world needs, improves study relevance, and increases participation and trust. This strategy places patients not just as subjects but as co-creators of research, leveraging their insights to shape everything from research questions to trial design and resource allocation. Unlike traditional models that treat patient engagement as outreach or recruitment, this approach embeds patient perspectives into the scientific process itself, increasing the speed and relevance of therapeutic development—particularly critical in rare and genetic diseases where data is scarce and misaligned incentives can stall progress. It distinguishes itself from broader collaboration models by centering identity-driven expertise (patients/families) rather than institutional or disc

21
orgs running it
186
activities of those orgs
12
activity groups touched
who runs it

Organizations running this strategy · 21

what it looks like in practice

Activities of orgs running this strategy

A sample of programmatic activities from the orgs above — what the strategy looks like on the ground.

  • Advocate for national and state-level policy change on pesticides THE MICHAEL J FOX FOUNDATION FOR PARKINSON'S RESEARCH
    advocacy
    Has led a nationwide advocacy campaign for over 10 years to ban paraquat, a pesticide linked to increased Parkinson's risk. Advocated for a bipartisan Farm Bill amendment in 2026 and is actively working on paraquat legislation in 12 states including New York, Pennsylvania, and Minnesota.
  • Conduct longitudinal research through Parkinson’s Progression Markers Initiative (PPMI) THE MICHAEL J FOX FOUNDATION FOR PARKINSON'S RESEARCH
    research
    Conducts the Parkinson’s Progression Markers Initiative (PPMI), a long-term study collecting biological, genetic, and clinical data from over 4,200 in-person and nearly 50,000 online participants to understand early stages of Parkinson’s and identify biomarkers. Includes recruitment of individuals with REM sleep behavior disorder and use of wearable sensors and DaT scans.
  • Fund and advance Parkinson's disease research THE MICHAEL J FOX FOUNDATION FOR PARKINSON'S RESEARCH
    research
    Has funded over $2.5 billion in Parkinson's research programs, awarded 108 grants totaling $62.4 million in 2025 alone, and supported therapeutic development including stem cell engineering and drug development for LRRK2 and GBA1 targets. The foundation has transformed genetic discoveries like LRRK2 into druggable targets and advanced biomarker tools such as the alpha-synuclein seed amplification assay.
  • Operate Fox Trial Finder and support clinical trial participation THE MICHAEL J FOX FOUNDATION FOR PARKINSON'S RESEARCH
    capacity building
    Operates Fox Trial Finder, a tool that matches people with Parkinson's to recruiting clinical studies, facilitating over 15,000 referrals since 2020. Also provides access to virtual clinical trials remotely and supports screening and participation in longitudinal studies like PPMI and NeuLark.
  • Organize community fundraising events THE MICHAEL J FOX FOUNDATION FOR PARKINSON'S RESEARCH
    direct service
    Organizes the Run/Walk Series and Tour de Fox Cycling Series to engage communities in fundraising for Parkinson's research, contributing to over $30 million raised since 1994, including $2.4 million in 2025.
  • Participate in and support the World Parkinson Congress THE MICHAEL J FOX FOUNDATION FOR PARKINSON'S RESEARCH
    advocacy
    Deploys staff and supports participation in the World Parkinson Congress, including hosting policy discussions, contributing lived expertise, moderating research sessions, and supporting event planning.
  • Provide research participants with access to their data THE MICHAEL J FOX FOUNDATION FOR PARKINSON'S RESEARCH
    direct service
    Provides U.S. and U.K. participants with access to their research results—including smell test, alpha-synuclein spinal fluid test, motor signs test, and DaT scan—through the myPPMI portal.
  • Shape federal Parkinson's research policy and funding THE MICHAEL J FOX FOUNDATION FOR PARKINSON'S RESEARCH
    advocacy
    Played a key role in building bipartisan support leading to the establishment of the National Parkinson’s Project, submitted public comments to its Advisory Council, and organized the 2026 Parkinson’s Policy Forum in Washington, D.C., where 300 advocates met with over 240 congressional offices.
  • Support global grassroots fundraising through Team Fox THE MICHAEL J FOX FOUNDATION FOR PARKINSON'S RESEARCH
    capacity building
    Engages thousands of Team Fox members globally in fundraising activities for Parkinson's research.
  • Use public engagement and media to advance mission THE MICHAEL J FOX FOUNDATION FOR PARKINSON'S RESEARCH
    advocacy
    Featured Michael J. Fox in a three-episode arc on Apple TV's "Shrinking" to portray a character living with Parkinson's, using his return to acting to demonstrate continued engagement in passions and inspire the Parkinson’s community.
  • Administering the Empowered Grant Program for therapeutic equipment and services THE KAT6 FOUNDATION INC
    grantmaking
    Funds and manages a grant program that provides financial assistance for assistive equipment, technology, and therapy treatments for individuals with KAT6A and KAT6B syndromes.
  • Funding research on KAT6A and KAT6B syndromes THE KAT6 FOUNDATION INC
    grantmaking
    Provides financial support for scientific research into disease mechanisms, treatments, and biomarkers for KAT6A and KAT6B syndromes, including funding studies at UCLA, Spain, and eight new research projects in 2025. Also funded the first clinical description of KAT6A syndrome (2015) and the largest cohort study to date (2019).
  • Hosting the annual KATwalk fundraising event THE KAT6 FOUNDATION INC
    direct service
    Organizes an annual KATwalk event that raises funds and awareness for KAT6-related causes; the 2024 event raised $200,000 USD.
  • Operating a multidisciplinary clinical care program at Boston Children's Hospital THE KAT6 FOUNDATION INC
    direct service
    Runs a specialized clinical program providing comprehensive, coordinated care for patients diagnosed with KAT6A or KAT6B syndromes, integrating medical, developmental, and therapeutic services.
  • Operating the KAT6A/KAT6B Patient Registry and natural history study THE KAT6 FOUNDATION INC
    research
    Runs a longitudinal patient registry launched in 2019 to collect and analyze health, development, and clinical data on individuals with KAT6A and KAT6B syndromes, supporting therapeutics development and care improvement. Includes biobanking of biospecimens and family-reported survey data on symptoms, medications, and care.
  • Organizing the KAT6A and KAT6B Virtual Symposium Series for researchers THE KAT6 FOUNDATION INC
    capacity building
    Hosts a semi-annual virtual symposium series that convenes researchers to share findings, collaborate, and advance scientific understanding of KAT6A and KAT6B syndromes.
  • Providing direct support to families affected by KAT6A and KAT6B syndromes THE KAT6 FOUNDATION INC
    direct service
    Offers global support services including education, conference calls, and assistance with patient registration through NORD (National Organization for Rare Disorders). Includes ongoing volunteer support to help families access therapies and assistive equipment.
  • Connecting patients to clinical trials PRIMARY BILIARY CHOLANGITIS ORGANIZATION
    direct service
    Provides access to Antidote Match, a tool that matches individuals with PBC to recruiting clinical trials, helping patients participate in research and treatment development.