Individual Membership (Free)
Membership to the TBI Action Alliance for individuals is free of charge.
Your membership benefits include:
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:
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:
Individuals worldwide suffer a traumatic brain injury (TBI) each year.
Military service members were affected by TBIs between 2000-2015 – it’s the most common traumatic injury in the U.S. military.
The number of emergency department visits that happen each year from TBIs in adults over 65 due to falls.
Whether it’s winning a weekend game of football, driving 3000-miles on a cross country road trip to see the glory of our national parks, enjoying an afternoon on the monkey bars with friends, or putting in a hot day to build our roads and cities or protect our citizens, we live life with joy, passion, heart… and a little bit of daring.
Children (0-14 years old) suffer a TBI each year due to falls and sports related accidents.
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 year.
In fact, some 5.3 million of us every year experience head trauma from falls, car accidents, collisions, flying construction debris, or military engagements. And head impact can cause injury to the brain, which in turn can cause depression, anxiety, suicide, PTSD and other conditions. Today, more than 5.3 million of us are living with TBIs.
The annual investment by the NIH in TBI-related research programs, representing less than half a percent of NIH’s $45 Billion budget.
Times more likely someone with a history of TBI or PTSD will attempt suicide compared to those without the diagnosis.
The number of Americans with traumatic brain injuries that we can help each year with your contributions.
The TBI Action Alliance will deliver improved brain health and outcomes for individuals who have experienced traumatic brain injuries through collective expertise and multi-sector action to deliver innovative solutions.
As part of the National Precision Research Roadmap for TBI, we’re working together to speed the development of diagnostics and treatments that improve the lives of the more than 5.3 million people living with TBI-related symptoms – including millions of veterans, first responders, athletes, elderly and children – and to help protect all Americans at risk for TBI from falls, accidents or sports-related impacts.
Cohen Veterans Bioscience (CVB) 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.
Eligibility Overview
About the Study Sponsor
Cohen Veterans Bioscience is a non-profit 501(c)(3) biomedical research and technology organization dedicated to advancing brain health by fast-tracking precision diagnostics and tailored therapeutics.
There are many different ways to find out about clinical research opportunities that might be of interest to you. Many doctors offices have brochures or advertisements about studies they are conducting or someone in their practice or hospital are conducting. A local study site might advertise on the radio or on the internet about their study. The sponsor of a study may have a website dedicated to informing people about the study. These websites may allow you to see if there is a study site near you.
Many patient advocacy groups also list available clinical studies on their websites. And finally, as all clinical studies of new treatments are required to be listed on a national registry, you can also search for your area of interest and “recruiting” or “not yet recruiting” at ClinicalTrials.gov.
Cohen Veterans Bioscience has several studies that are ongoing or about to start that you may be interested in learning more about.
The NNL is an ongoing study that is enrolling healthy volunteers to have a series of brain MRI scans taken in a single day to help build an understanding of what normal MRIs look like at different ages and in different sexes. This imaging reference library could be used to simply and objectively diagnose conditions like TBI and PTSD because having a library of normal brain scans can help define what is different in MRIs taken from people with PTSD or TBI.
The study is being conducted at three sites, the University of Virginia, the University of Utah, and Baylor College of Medicine.
40Winks is a CVB-sponsored study that is helping us build a platform for conducting trials virtually. Participants will be screened and enrolled through the study web portal and, if they qualify, will receive two wearable and home sensor devices in the mail to use for two weeks. During this time, we will research if this approach and method can be used to measure people’s health in their home environment, without having to travel to a study site.
40Winks will start enrolling in early 2023.
This study will evaluate whether sleep data from a wearable device can provide more accurate information about the patient’s sleep habits and patterns than the patient’s memory recall. It will also evaluate whether having this information improves the clinician-patient CBTi session for better treatment outcomes.
This study will begin in early 2023 and link to the enrollment site will be added at that time.
This study is for both health volunteers interested in clinical research and those with PTSD, mTBI or concussion, depression, or insomnia who are looking for the next opportunity to join a new treatment trial or want to contribute their data to gain a better understanding of their condition.
The registry will being asking for volunteers in mid-2023 and an active link for more information will be added here at that time.
Interested in joining on of our studies or getting more information? Feel free to reach out to us today.
Suicide rates among Veterans are not improving.
We can and must do better.
Tragically up to 22 American Veterans and service members die by suicide daily.
Nearly 300,000 Veterans who returned from the wars in Iraq and Afghanistan are suffering from PTSD.
Veterans and service members need more treatment options.
Despite decades of promising research and more than $1.1 billion spent on clinical trials1, no new drugs for PTSD and TBI have successfully advanced to FDA approval. And the research pipeline for new devices and therapies is thin as many pharmaceutical companies have abandoned research into PTSD and TBI.
Complex problems require a new approach that embraces collaborative science conducted to the highest standards of quality and with an openness to share data towards a common goal.
Co-founded by Cohen Veterans Bioscience, the Coalition to Heal Invisible Wounds brings together leading non-profit organizations seeking to advance a comprehensive research-focused advocacy agenda to address the invisible wounds of war—PTSD and TBI—as well as to address co-morbid conditions such as pain and substance use disorders, which are known to dramatically increase the risk of suicide among Veterans and service members.
The Coalition seeks to promote reforms, policies and meaningful research investments that will spur new research discoveries and advance a precision medicine approach for the invisible wounds of war.
Veterans and service members have earned the right to world-class health care, but doctors have too few treatment options. Congress should help researchers develop evidence-based therapies that are tested and proven by rigorous, randomized clinical trials.
The United States Department of Veterans Affairs (VA) and The United States Department of Defense (DoD) have outstanding assets and institutional strengths and can become leading partners in delivering new precision medicine approaches for PTS and TBI. Several collaborative initiatives have outlined gaps in the current knowledge and recommendations to move the research forward.
Congress should compel the VA and DoD to develop a cohesive research strategy for the invisible wounds that builds on public-private partnerships.
When available treatment options fail, many Veterans feel resigned to take their mental health care into their own hands and turn to alternative treatments with little clinical guidance.
Congress should direct the VA and DoD to demonstrate conclusively whether emerging treatments such as psychedelics, stellate ganglion block, and hyperbaric oxygen therapy work and in which people.
Bicameral and bipartisan ground breaking legislation, such as the Commander John Scott Hannon Mental Health Act, have been passed by every administration during the last 30 years, with little oversight into their implementation.
Congress should ensure full implementation of the Commander John Scott Hannon Mental Health Act, and especially on Sections 305, 306, 704, and 705, which created new tools for the VA to support leading-edge research.
The ultimate goal of the Coalition’s advocacy efforts is to realize better treatments, improved quality of life, new cures, and a reduction in the rate of suicide among Veterans and service members.
Chair
Co-Chair
For more information about the Coalition to Heal Invisible Wounds and how to become a member, please contact our Senior Director of External Affairs, Dr. Chantelle Ferland-Beckham.
Dr. Chantelle Ferland-Beckham, Ph.D.
Senior Director, External Affairs
Contact via Email
Fostering a collaborative approach to advancing solutions for brain trauma
Galvanizing the brain health ecosystem
The Brain Health Nexus initiative aims to unleash science and technology to build a new paradigm of collaboration to optimize brain health and prevent brain disease. In the current research landscape, each brain disease is addressed separately. But these diseases do not exist in isolation. We need coordinated action to broaden the focus from treating diseases at crisis points to prevention and wellness across the lifespan. It will take one interconnected community to break down barriers and borders, share data and insights, and bridge capital and opportunity.
Identifying biomarkers for brain disorders
The BRAINCommons provides secure access to a collaborative community and state-of-the-art analytic tools that facilitate high quality brain research.
By including data across neurodegenerative diseases, BRAINCommons facilitates research collaboration, data exploration, and reproducibility. The insights it creates will accelerate the development of new therapies for Parkinson’s and similar diseases.
– Todd Sherer, PhD
CEO, The Michael J. Fox Foundation for Parkinson’s Research
CVB’s digital health platform EarlySignal (EaSi) aims to improve the well-being of patients by improving how information is collected from wearables and other sensors. Quantifying health and disease with real-time data from wearable devices can enable clinicians to monitor patients’ health, diagnose patients more accurately and tailor treatments accordingly.
Our flagship biomarker discovery platform is a public-private partnership leveraging existing data and stored biosamples to identify biomarkers with the potential to diagnose PTSD and TBI, predict the progression of the conditions, and measure the efficacy of treatments. RAPID-Dx also designs studies to validate biomarkers for use in diagnostic and therapeutic development.
A biomarker is an objectively measured characteristic that may indicate a normal or pathologic disease process, or a response to a therapeutic intervention. By discovering and validating biomarkers, we can fast-track precision diagnostics and tailored therapeutics for brain disorders.
By joining RAPID-Dx, we are affirming our commitment to a new type of radically collaborative science defined by data sharing and coordination of efforts toward our shared goal of finding clinically-useful diagnostics and treatments for these invisible wounds of war. There is no doubt in my mind that coordinated team science will accelerate progress toward diagnosis and treatments. We are thrilled to be working with Cohen Veterans Bioscience.
– Rachel Ramoni, DMD, ScD
Chief Research and Development Officer at the Veterans Health Administration
Accelerating Drug Discovery Through Rigorous Preclinical Research
Our Preclinical Modeling platform creates alignment across the preclinical research community, offers scientific expertise and program management, and fills funding gaps to support impactful research.
Every person who chooses to participate in clinical research does so for their own reasons. Some of the main reasons people participate are:
Regardless of your reason and regardless of the outcome of the study, your participation helps move science forward. Without your participation we could not discover new treatments or find ways to better help future generations.
You can participate in clinical trials in different ways.
You can join a study directly and participate in real time or you can give permission to your health care provider to include your data or samples (blood or tissue) in their research.
While each study is different, there are strict regulations about how they should be conducted, and many of the steps are the same.
There are many different ways to find out about clinical research opportunities that might be of interest to you. Many doctors offices have brochures or advertisements about studies they are conducting or someone in their practice or hospital are conducting. A local study site might advertise on the radio or on the internet about their study. The sponsor of a study may have a website dedicated to informing people about the study. These websites may allow you to see if there is a study site near you.
Many patient advocacy groups also list available clinical studies on their websites. And finally, as all clinical studies of new treatments are required to be listed on a national registry, you can also search for your area of interest and “recruiting” or “not yet recruiting” at ClinicalTrials.gov.
Cohen Veterans Bioscience has several studies that are ongoing or about to start that you may be interested in learning more about.
The NNL is an ongoing study that is enrolling healthy volunteers to have a series of brain MRI scans taken in a single day to help build an understanding of what normal MRIs look like at different ages and in different sexes. This imaging reference library could be used to simply and objectively diagnose conditions like TBI and PTSD because having a library of normal brain scans can help define what is different in MRIs taken from people with PTSD or TBI.
The study is being conducted at three sites, the University of Virginia, the University of Utah, and Baylor College of Medicine.
40Winks is a CVB-sponsored study that is helping us build a platform for conducting trials virtually. Participants will be screened and enrolled through the study web portal and, if they qualify, will receive two wearable and home sensor devices in the mail to use for two weeks. During this time, we will research if this approach and method can be used to measure people’s health in their home environment, without having to travel to a study site.
40Winks is now enrolling eligible study participants; learn more at the 40Winks website.
This study will evaluate whether sleep data from a wearable device can provide more accurate information about the patient’s sleep habits and patterns than the patient’s memory recall. It will also evaluate whether having this information improves the clinician-patient CBTi session for better treatment outcomes.
This study will begin in early 2023 and link to the enrollment site will be added at that time.
This study is for both health volunteers interested in clinical research and those with PTSD, mTBI or concussion, depression, or insomnia who are looking for the next opportunity to join a new treatment trial or want to contribute their data to gain a better understanding of their condition.
The registry will being asking for volunteers in mid-2023 and an active link for more information will be added here at that time.
Interested in joining on of our studies or getting more information? Feel free to reach out to us today.
In partnership with the Clinical Data Interchange Standards Consortium (CDISC), we published the first Therapeutic Area (TA) Standard for PTSD. The guide describes how data should be recorded in a standardized database, establishing best practices across the clinical research industry for recording, reporting, and sharing disease-specific data. Using the guide can facilitate regulatory submissions for novel therapies and allow the research community to easily compare data from different studies. This guide is critical for the future of data integration and collaboration that can accelerate the discovery of better diagnostics and treatment options for PTSD.
We hope researchers will use this user guide to bring clarity to the data and discover breakthroughs in PTSD.
– David R. Bobbitt
President and CEO, CDISC
Big data approaches are critical to accelerating discovery in complex disorders such as traumatic brain injury (TBI). Common data elements (or CDEs) enable big data approaches by providing consistency in the way data is collected, formatted and described from one study to the next. Members of the Cohen Veterans Science scientific team were part of a committee of experts who worked with the National Institute of Neurological Disorders and Stroke to spearhead the development of CDEs for preclinical TBI research.
The Global Preclinical Data Forum (GPDF) is a jointly sponsored U.S. and European initiative that encourages global collaboration to address the challenge of ensuring that preclinical research is reproducible, robust, and translatable. The GPDF provides training, education, and other resources that address modern issues in preclinical research with the goal of systematically advancing best practices that will enhance the quality of the preclinical data for clinical research and development. Cohen Veterans Bioscience is the fiscal sponsor of the GPDF and part of the GPDF leadership Core Team.
Laboratory assays and tests have become increasingly diverse and complex. Confronted with a multitude of information with unclear relevance for their specific experiments, scientists run the risk of overlooking critical factors that can influence the outcome of their studies. PEERS is a community-driven, open access database that will improve the reproducibility of preclinical studies by providing scientists with an expertly curated catalogue of the major factors that can influence the outcome of an experiment when not considered a priori.
Differences between males and females extend far beyond reproduction, with significant implications for human health and disease. This is particularly relevant in neuroscience, where difference in basic biology between males and females translates into sex differences in the prevalence, progression, and responses to treatment of many brain disorders. Cohen Veterans Bioscience developed an unprecedented new video series that provides the practical knowledge necessary for preclinical researchers to incorporate sex as a biological variable into their current and future research. The 18-part video training program was developed to help strengthen the translation of basic research findings to human care and enhance the overall quality of preclinical research.
There are no universally agreed upon guidelines that govern the design, conduct, and analysis of preclinical research. As a result, the development of new medications has slowed dramatically in the last 10 years due to the high risk of failure. The EQIPD project (2017-2021) aimed to reverse this trend by bringing together a consortium of over 20 research groups from industry and academia to develop a simple, strategies to reduce the risks of drug development research and ensure adherence to rigorous research practices. The Guarantors of EQIPD were founded in 2021 to disseminate the developed strategies to the research community. Cohen Veterans Bioscience is a fiscal sponsor of the Guarantors of EQIPD.
When science is properly conducted, negative results, or results that do not confirm the expected outcome or original hypotheses, are a natural occurrence. However, much of the science that is published is skewed towards positive results, with some estimates indicating that 85% of all published studies in neuroscience publish only positive results. The end result is a loss of time and money as researchers pursue avenues of scientific inquiry that are bound to fail. Cohen Veterans Bioscience believes that we need a paradigm shift in which negative data is valued according to the same standards as positive data and has taken a number of steps to demonstrate the value of negative data to the scientific process.
Best Negative Data Prize in Preclinical Neuroscience
The Biomarker Establishment for Superior Treatment of PTSD Study (BEST)
In partnership with our research collaborators at Stanford University, we studied clinical biomarkers to identify brain activity patterns, or neural signatures, in PTSD within a large Veteran population.
The results showed that PTSD patients could be stratified into groups based on changes in blood flow in a brain circuit, showing a correlation with patients who responded to prolonged exposure psychotherapy, a common PTSD treatment. These findings help move PTSD diagnosis and treatment away from a symptoms-based approach to a biologically-based approach, which can provide the basis for the development of targeted treatments and novel therapeutics.
Our goal is to create a brain signature specific to an individual and then tailor treatment accordingly. Ultimately, we hope to have a clinic-ready tool that will dramatically change how we care for patients with post-traumatic stress disorder.
– Amit Etkin, MD, PhD
Professor of Psychiatry and Behavioral Sciences, Stanford University
The Global PTSD Genetics Study
Through coordination with more than 200 researchers, across 12 countries, researching genetic data from more than 200,000 people, we demonstrated that the risk of developing PTSD after experiencing trauma is heritable. The study advanced our understanding of PTSD, demonstrating that heritability estimates for PTSD range between 5-20%, which are similar to rates observed for major depression.
We need a drug discovery revolution in PTSD…unbiased genetics approaches will provide the basis for new, rational therapeutics – and may eventually help us better match treatments to patients.
– Karestan C. Koenen PhD
Principal investigator, Stanley Center for Psychiatric Research, Broad Institute and Harvard T.H. Chan School of Public Health
Normative Neuroimaging Library (NNL)
Advanced MRI imaging can now detect microscopic changes in brain structure and/or function caused by trauma or disease. By performing standardized MRI scans on 3,000 adult volunteers who have not been affected by brain trauma or disease, we are forming a library that documents normal population variation. This imaging library would allow physicians to accurately and efficiently diagnose conditions resulting from subtle and early changes in brain structure.
The TBI imaging reference library will provide key information necessary to capitalize on these increasingly available analytical approaches to allow for imaging to help support decisions in the management.
– James R. Stone, MD, PhD
NNL principal investigator, and Vice Chair of Research, UVA Department of Radiology and Medical Imaging
Sleepwell
Sleep disruptions are one of the most debilitating symptoms of PTSD and TBI, and are a risk factor for suicide. We’re developing digital health solutions to validate and analyze data collected from wearables that capture the minute-to-minute experiences of people whose lives are disrupted by PTSD and other brain disorders. Improving methods of measuring sleep will enable the development of precision therapeutics for sleep disorders that are user-friendly, cost-effective, and reliable.
Parkinson’s Progression Markers Initiative (PPMI) Data Science Modeling Group
The Parkinson’s Progression Markers Initiative (PPMI), sponsored by The Michael J. Fox Foundation (MJFF), is a landmark clinical study designed to identify biomarkers of Parkinson’s disease to predict disease progression and improve patient care. In our aligned missions to advance brain health, MJFF is partnering with CVB’s data science team to quantitatively explore, evaluate, and predict disease trajectory and risk factors using the collected data. The goal of the PPMI is to support the development of new therapies for use in clinical trials.
Sleep disturbance is common in individuals with post-traumatic stress disorder (PTSD). The gold standard assessment for sleep disruptions is the overnight polysomnogram (PSG), which are cumbersome, have a high cost, and not always reflective of how you sleep in your own home. With the growing availability of wearable and home sensor devices that can measure your sleep CVB conducted a study to compare the accuracy of these devices to PSG in people with insomnia and PTSD and (2) understand what each device is measuring and how equivalent their sleep reporting across devices.
Based on rigorous testing in our EarlySignal device lab, we selected the most promising six devices and launched a Technical Performance Verification study with our partners, a leading sleep research team at the University of Pennsylvania. Participants in the study, those with both insomnia and PTSD, spent two nights in the sleep lab wearing the PSG and the six devices in order to help us learn which of these potential sleep devices is the most accurate against the gold standard.
The study completed enrollment in 2022 and results will be updated here and published soon thereafter.
Our brain trauma roadmapping efforts in both post-traumatic stress disorder (PTSD) and traumatic brain injury (TBI) have demonstrated that meaningful investment in brain health is needed to advance diagnostics and treatments.
CVB advocates for sustainable and predictable growth of the NIH budget over the long term, including targeted funding for brain trauma-related disorders in an amount that is commensurate with the actual disease burden and reflects priority areas identified in our roadmapping efforts. We also support robust and continued funding for the BRAIN Initiative and a call-to-action that all data from the BRAIN Initiative be made openly accessible to the scientific community to advance progress.
Current treatment strategies for many brain diseases and disorders largely resemble “trial and error” and many diseases rely on a symptoms-based approach to diagnosis and treatment. In brain health, doctors need better tools to tailor treatments to the right patient and the right condition.
We support Federal funding that moves beyond an incremental approach to brain science, including funding deep phenotype cohorts to enable biomarker discovery, adaptive clinical trial designs and promoting data sharing to enhance discovery and development.
Accelerating research discovery—particularly in the field of brain health—requires researchers to build upon the best available scientific evidence in order to avoid needless starts and stops and duplicated efforts.
For these reasons, CVB advocates for policies that ensure best research practices based on proven approaches, which are implemented at all stages of the research process—from design to execution to reporting.
Through the implementation of best practices, we ensure all research is conducted to the highest standards and through an approach that ensures public confidence. In addition, CVB advocates for improved biomedical workforce training at all levels to protect the United States’ competitiveness as a scientific enterprise.
Our nation’s Veterans and service members need action for the brain trauma conditions that are taking their lives at record numbers — TBI and PTSD — collectively referred to as the invisible wounds of war.
Major federal investments have improved access to mental health care, but Veterans and service members need more treatment options.
Despite decades of promising research and more than $1.1 billion spent on clinical trials, no new drugs for PTSD and TBI have successfully advanced through clinical trials to achieve FDA approval. And the research pipeline for new devices and therapies is thin as many pharmaceutical companies long ago abandoned research into PTSD and TBI.
CVB advocates for policies and reforms to help close these research gaps to more effectively address the invisible wounds and bring new solutions for brain trauma to Veterans and service members.
The Veterans Advisory Council (VAC) is comprised of senior leaders who have a deep, personal commitment to helping us discover new solutions for the invisible wounds of war. The VAC members share the perspectives, challenges, and needs of the Veterans community to inform CVB’s research and advocacy efforts that will help improve the health of Veterans. The VAC’s priorities are to increase awareness of brain trauma as a risk factor for suicide, reinforce legislation and other measures to advance evidence-driven approaches for the invisible wounds of war and serve as a voice by providing advice and strategic recommendations for CVB’s mission and objectives.
Co-founded by Cohen Veterans Bioscience, the Coalition to Heal Invisible Wounds brings together leading non-profit organizations seeking to advance a comprehensive research-focused advocacy agenda to address the invisible wounds of war—PTSD and TBI—as well as to address co-morbid conditions such as pain and substance use disorders, which are known to dramatically increase the risk of suicide among Veterans and service members.
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Contact our Director of Advocacy and Policy to learn more about how you can become involved with our advocacy efforts.
Dr. Chantelle Ferland-Beckham, Ph.D.
Senior Director, External Affairs
Contact via Email
Cohen Veterans Bioscience is a non-profit 501(c)(3) biomedical research and technology organization dedicated to advancing brain health by fast-tracking precision diagnostics and tailored therapeutics.
Cohen Veterans Bioscience is a non-profit 501(c)(3) biomedical research and technology organization dedicated to advancing brain health by fast-tracking precision diagnostics and tailored therapeutics.
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