The TBI Action Coalition

A new Community Coordination model to accelerate a first generation of diagnostics and treatments for Traumatic Brain Injury

About the TBI Action Coalition

Dr. Magali Haas speaking at the 2022 Brain Trauma Blueprint Action SummitThe Challenge

The Silent Epidemic

Every year, millions of Americans, including Veterans, active military, first responders and public safety personnel, experience traumatic brain injuries and their associated devastating chronic effects, including suicide.

Yet, in 2022, we still have no FDA-approved TBI diagnostics or treatments.

The Facts

  • TBI is broadly defined as an alteration in brain function or other evidence of brain pathology caused by an external force that can occur in traffic, at home, at work, during sports activities, and on the battlefield1.
  • Approximately 70 million individuals worldwide will suffer a traumatic brain injury (TBI) each year2.
    • Military TBI – TBI is the most common traumatic injury in the US military, affecting >310,000 service members between 2000-20153
    • Intimate Partner Violence – TBI has been associated with IPV in 19-75% of cases4,5
    • Geriatric TBI – the highest incidence of TBI occurs in older adults (ages 65 & over) associated with falls6
    • Childhood TBI – an estimated 475,000 children aged 0–14 suffer a TBI each year7
  • 5.4M Americans are living with a long-term disability due to a TBI
  • In 2015, the cost for direct TBI medical care in the U.S. was estimated at more than $50 billion per year8
  • By contrast, the annual investment by the NIH in TBI-related research programs = ~$185M based on 2021 reporting9

What the TBI Action Coalition Will Do

Raise Awareness and Advocate for TBI Research

Raise Awareness and Advocate for TBI Research

By presenting a unified and powerful voice to policymakers, funders, scientists and others who support TBI research efforts, we can ensure our priorities become theirs.

Establish a TBI National Research Agenda

Establish a TBI National Research Agenda

Build a TBI Precision Research Roadmap and support scientific, regulatory and government policies that place TBI research at the top of the national agenda and ensure adequate funding and resources to execute it.

Put Patients at the Center of Research Endeavors

Put Patients at the Center of Research Endeavors

Engaging the Community in the establishment of the Research Roadmap and holding its execution accountable to the Community as well.

Spark a New Era of Innovation for TBI Solutions

Spark a New Era of Innovation for TBI Solutions

The nexus of need, capital and aligned research priorities will attract new innovative thinkers and foster the advancement of new innovative approaches for TBI.

Chart Progress

Chart Progress

We will track progress against roadmap milestones and report out to the Coalition membership progress of collective efforts.

The Roadmap

Cohen Veterans Bioscience (CVB), a national, nonpartisan 501c3 non-profit research organization dedicated to fast-tracking the development of diagnostic tests and personalized therapeutics for brain health, established the Brain Trauma Blueprint – a framework for generating and executing precision research roadmaps.

Brain Trauma Blueprint Process

Through this framework, CVB has convened TBI Researchers and other stakeholders at State of the Science Summits to identify and publish consensus challenges and recommendations for TBI research.

The resulting TBI Precision Research Roadmap outlines the research projects & policies needed to accelerate a first generation of precision diagnostics and targeted treatments for brain trauma and also the systemic changes required to ensure that all those suffering from trauma-related brain disorders can get access to these new innovations, and other support and care, they so desperately need.

The TBI Precision Research Roadmap focuses on 7 Lines of Effort:

  1. Disease burden – Identify the burden of disease across all populations and injury severities as determined by incidence, prevalence, and long-term trajectories of patients suffering from TBI
  2. Disease models – Develop an array of translationally valid disease models (preclinical and computational) based on a biological understanding of trauma pathogenesis and disease phenotypes that support evaluation of novel therapies
  3. Precision Diagnosis – Identify, develop and validate diagnostic, prognostic and predictive biomarkers for TBI to develop first generation diagnostic tests
  4. Targeted Therapeutics – Validate therapeutic targets & fast-track a first-generation of TBI (wellness, device, digital, drug) therapeutics targeted to the right person at the right time
  5. Clinical practice implementation – Accelerate adoption of best practices, clinical practice guidelines, and precision therapeutic approaches to optimize brain health outcomes
  6. Translational Infrastructure & Enabling Technologies – Identify & address infrastructure, incentives, regulatory and technology gaps to advance the TBI roadmap
  7. Awareness & Advocacy – Place TBI at the top of the US Public Policy agenda and raise awareness to reduce stigma of brain injury, encourage treatment-seeking, and enable access and reimbursement of care

We believe that a different model is needed to achieve success – a model where we collaborate to identify the most pressing research gaps and work collectively to address those gaps and ensure our work is not done in isolation, but as part of a more coordinated effort with the right resources and the right focus on each of the Roadmap Goals & Objectives.

A Coalition that Delivers on the promise of precision diagnostics and targeted therapeutics with clear wins within 2-3 years.

Join Us

Attendees at the 2022 Brain Trauma Blueprint Action Summit

We are at a crossroads of TBI Research. While there has been increased awareness and funding, we have not made enough progress.

The time is now to embark on a new model of research, where researchers, the government, industry and those with lived experiences come together to focused on achieving specific and measurable objectives that will transform the lives of people who suffer a TBI.

We ask that you join us in this critical fight for our Veterans and others who have suffered long enough and become a Member of the TBI Action Coalition.

Membership Program:

All membership funds will support the maintenance and execution of the TBI Precision Research Roadmap.

Member Benefits & Information

Individual Membership Benefits & Information

Individual Membership (Free)

Membership to the TBI Action Coalition for individuals is free of charge.

Your membership benefits include:

  • Newsletter – updates on the latest progress & findings in TBI (first issue January 2023)
  • Surveys – opportunities to provide your input and feedback on a broad range of TBI topics
  • Your Voice – weigh in on The Precision Research Roadmap priorities – your voice matters!
  • Clinical Trial Information – learn about the latest studies and opportunities to participate in research
  • Webinars – member-only invitations to learn more about TBI from the experts

To support the efforts of the TBI Action Coalition, and to help us drive a new era of research for TBI and advance a first generation of FDA-approved diagnostics and treatments, we ask that you consider making a tax-deductible donation in the amount of your choosing.

Please follow the link below to make a one-time or recurring donation to support the TBI Action Coalition.

Trainee (students, post-doctoral) Membership Benefits & Information

Trainee (students, post-doctoral) Membership ($50/year)

Your annual professional membership donation will help us drive a new era of research for TBI and advance a first generation of FDA-approved diagnostics and treatments.

Your membership benefits include:

  • Newsletter – updates on the latest progress & findings in TBI (first issue January 2023)
  • Surveys – opportunities to provide your expertise on a broad range of TBI topics
  • Grant Opportunities – learn about new research program and funding opportunities
  • Webinars – member-only invitations to join online workshops and webinars
  • Portal – access to the BTB research portal
Academic/Professional Membership Benefits & Information

Academic/Professional Membership ($500/year)

Your annual professional membership donation will help us drive a new era of research for TBI and advance a first generation of FDA-approved diagnostics and treatments.

Your membership benefits include:

  • Newsletter – updates on the latest progress & findings in TBI (first issue January 2023)
  • Surveys – opportunities to provide your expertise on a broad range of TBI topics
  • Grant Opportunities – learn about new research program and funding opportunities
  • Webinars – member-only invitations to join online workshops and webinars
  • Portal – access to the BTB research portal
Citations

1 Manley, G.T. and Maas, A.I. (2013) JAMA 310, 473-474.

2 Haarbauer-Krupa J, et al. (2021) Epidemiology of chronic effects of traumatic brain injury. Journal of neurotrauma. 2021 Dec 1;38(23):3235-47.

3 Helmick et al (2015) Brain Imaging and Behavior. Sep;9(3):358-66.

4 Iverson, Dardis & Pogoda (2017) Comprehensive Psychiatry, 74, 80–87. doi:10.1016/j.comppsych.2017.01.007

5 Valera et al. (2018) Journal of Neurotrauma, 36,661–668. doi:10.1089/neu.2018.5734

6 Gardner et al. (2015) Journal of Neurotrauma, 35:889–906. doi: 10.1089/neu.2017.5371

7 Dewan et al. (2016) World Neurosurgery, 91:497-509.e1 doi: 10.1016/j.wneu.2016.03.045

8 Frieden TR, Houry D, Baldwiin G. (2015) Report to Congress on Traumatic Brain Injury in the United States: Epidemiology and Rehabilitation. Atlanta, GA: CDC 2015. https://www.cdc.gov/traumaticbraininjury/pdf/tbi_report_to_congress_epi_and_rehab-a.pdf

9 https://report.nih.gov/funding/categorical-spending#/