About the TBI Action Alliance
The Challenge
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 2023, 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
- A history of TBI or PTSD has been shown to be associated with a substantially increased likelihood of suicide attempts compared to those without the diagnosis — 1.5 and 2.8, respectively10
What the TBI Action Alliance Will Do
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
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
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
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
We will track progress against roadmap milestones and report out to the Alliance 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.
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 TBI and also the systemic changes required to ensure that all those suffering from TBI 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:
- Injury burden – Identify the burden of TBI across all populations and injury severities as determined by incidence, prevalence, and long-term trajectories of patients suffering from TBI
- 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
- Precision Diagnosis – Identify, develop and validate diagnostic, prognostic and predictive biomarkers for TBI to develop first generation diagnostic tests
- 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
- Clinical practice implementation – Accelerate adoption of best practices, clinical practice guidelines, and precision therapeutic approaches to optimize brain health outcomes
- Translational Infrastructure & Enabling Technologies – Identify & address infrastructure, incentives, regulatory and technology gaps to advance the TBI roadmap
- 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.
An Alliance that will deliver on the promise of precision diagnostics and targeted therapeutics with clear wins within 2-3 years.
Join Us
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 focus 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 Alliance.
Sponsors
Organizations that provide funding for TBI Action Alliance projects or activities
Member Benefits & Information
Individual Membership (Free)
Membership to the TBI Action Alliance for individuals is free of charge.
Your membership benefits include:
- Newsletter – updates on the latest progress & findings in TBI
- 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 Alliance, 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 use the link below to make a one-time or recurring donation to support the TBI Action Alliance.
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
- 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 TBI Action Alliance Portal
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
- 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 TBI Action Alliance Portal
Contribution levels are assessed based on organization type and worldwide annual revenue. Commitments are formalized through a Letter of Agreement with Cohen Veterans Bioscience and payments are made annually. The membership term is one year from execution date. Multi-year discounts (10%) will be applied for commitments of 3 or more years, paid up front.
Your annual membership donation may be tax deductible and will help us drive a new era of research for TBI that advances a first generation of FDA-approved diagnostics and treatments.
Membership Benefits include:
- Newsletter – updates on the latest progress & findings in TBI
- Surveys – opportunities to provide your expertise on a broad range of TBI topics
- Research Opportunities – information about new research programs and partnership opportunities
- Roadmap Committees – eligible to apply for participation in Scientific & Technology Advisory Committee working groups
- Webinars – member-only invitations to join online topical workshops and webinars
- Portal – access to the members-only sections of the TBI Action Alliance Portal
Sources / 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
