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Engaging Patients in Research and Health

The Research Acceleration and Innovation Network (TRAIN)

Overview

The Research Acceleration and Innovation Network (TRAIN) is a network of more than 150 foundations interested in taking a strategic and entrepreneurial approach to funding medical research. TRAIN convenes forward-thinking groups to learn from each other and shares their novel solutions with the rest of the medical research system.

Venture philanthropy is a concept very much in vogue but without a commonly agreed-upon definition. Wikipedia defines it broadly as taking “concepts and techniques from venture capital finance and high technology business management and applies them to achieving philanthropic goals.”  Among the elements of venture philanthropy are:

  • Willingness to experiment and try new approaches;

  • Focus on measurable results—donors and grantees assess progress based on mutually determined benchmarks;

  • Readiness to shift funds between organizations and goals based on tracking those measurable results;

  • Giving financial, intellectual, and human capital;

  • Focus on capacity building, instead of programs or general operating expenses; and

  • High involvement by donors with their grantees.

FasterCures created TRAIN to recognize organizations that are pioneering principles of venture philanthropy to catalyze the development of new therapies and to encourage more foundations to adopt such approaches to de-risk translation and commercialization of research in their respective disease areas. The goals of TRAIN are: 

  • Encourage innovative and best practice approaches to entrepreneurial philanthropy in medical research

  • Build more and better networks between disease foundations and other R&D stakeholders

  • Encourage more collaboration and idea and resource sharing among TRAIN stakeholders 

  • Provide capacity-building assistance to TRAIN stakeholders to address their top priority areas

TRAIN is currently composed of more than 100 foundations that fund or conduct patient-driven, outcomes-focused medical research. While the organizations that participate in TRAIN are individually unique, all TRAIN organizations demonstrate an ongoing commitment to accountability, collaboration, research effectiveness, resource building, and patient-centeredness. 

Organizations and individuals that would benefit from participation in TRAIN include chief executives and functional leaders from organizations that have reached a certain level of maturity, which might include having paid professional staff, devoting a significant portion of their annual expenditures to supporting research (as distinct from education or advocacy), and engaging in activities that go beyond very basic academic grant-making (e.g. supporting the creation of research resources, working across stakeholder groups including government agencies and industry, providing patient perspective, and participation to the research process, etc.).

TRAIN is an active community of peers that share similar missions to overcome systemic challenges to accelerating biomedical research. FasterCures is launching a new capacity-building effort through TRAIN to target recently identified organizational priority areas for TRAIN organizations. These capacity-building efforts will include day-long workshops, webinars, and an online knowledge-sharing platform. Topic areas for these activities may include: 

  • Advancing therapeutic development

  • Exploring and implementing collaborative research networks/initiatives

  • Creating and growing patient registries and data resources

FasterCures also regularly solicits TRAIN organizations to participate in its programmatic activities, which offer additional opportunities for them to engage in thought leadership and help drive positive change and innovation in the biomedical ecosystem. These convenings and programs leverage FasterCures’ diverse network of stakeholders, including pharmaceutical developers, policymakers, regulators, payers, patient organizations, nonprofit organizations, providers, and researchers and offer the chance for TRAIN organizations to make new connections with key biomedical leaders and experts.

FasterCures accepts new organizations to TRAIN on an ongoing basis. There is no fee for the application or for membership.

Please contact [email protected] for more information about TRAIN.

TRAIN Toolkits

Foundation Company Partnership

Find the right partners and structure agreements to help you achieve your goals.

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Foundation University Partnerships

Craft agreements with universities that best serve the needs and interests of all parties.

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Foundations as Collaboration Conveners

Ease the pain points in collaborative processes, from governance structures to sharing data.

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Research Partnership Maturity Model

Foster partnerships between patient organizations and help advance their research.

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Foundations’ Role in Supporting Clinical Trial Innovation

Access resources from the November 2021 TRAIN workshop, “Foundations’ Role in Supporting Clinical Trial Innovation."

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Foundation’s Role in Supporting Translational Science

Accelerate translational research and move good ideas from concept to the clinic.

View Toolkit

The Research Acceleration and Innovation Network (TRAIN)
Featured Content

TRAIN Case Studies

The Cystic Fibrosis Foundation (CFF) is recognized as one of the best examples of venture philanthropy in medical research. CFF has provided over $1 billion in funding since 2005, it actively supports the development of new treatments—nine of them FDA-approved—and has industry partners including Vertex, Pfizer, PTC Therapeutics, and Genzyme.

The Michael J. Fox Foundation (MJFF) is the single largest funder of Parkinson's research outside of the US government. To date, MJFF has invested more than $450 million in research—almost 90 percent for translational research—funded testing of more than 100 therapeutic targets for Parkinson's disease (PD), and undertaken novel industry partnerships to support early-stage promising therapeutic approaches.

The Multiple Myeloma Research Foundation (MMRF) and its sister organization, the Multiple Myeloma Research Consortium (MMRC), have created a remarkable engine for drug discovery and development. MMRF has raised more than $500 million and funded 135 institutions worldwide, been involved in the development of 15 new treatments, facilitated nearly 100 clinical trials through the consortium, and has 17 MMRF-funded compounds now in clinical trials.

The Alzheimer’s Drug Discovery Foundation has demonstrated remarkable success in investing money and resources in early clinical stage trials and preclinical drug discovery research. ADDF has invested in 20% of the drugs currently in clinical development for Alzheimer’s disease.

EB Research Partnership has funded more than 80 research projects, which has led to 30 clinical trials, including 3 Phase III trials and, as of May 2023, the first ever approved treatment for EB. They have also started their own for-profit research company. In 2019, EBRP funded the formation of Wings Therapeutics, a new company dedicated to developing treatments for EB.

The Crohn’s and Colitis Foundation, through its IBD Ventures, invested $31 million in research in 2020. The IBD Ventures program is dedicated to funding mechanisms and providing resources and advisement to support product-oriented research and development for Crohn’s and Ulcerative Colitis.