Scientific chaos seems to rule in the world of concussions and traumatic brain injury (TBI). This may come as a surprise given the high profile concussions have been given recently. For example, the National Football League (NFL) has been denigrated for hiding the effects of concussions (also known as a mild TBI) from generations of players, with regular headlines and lead stories. Additional publicity, including the highly successful release of a movie of the same name, has focused the general public on the incidence of head trauma in football and other sports. If this spotlight on concussions in “America’s sport” was not enough, acknowledgment of the incidence of TBI suffered by service members during 15+ years of war has only amplified concussion awareness and the “invisible wounds of war.”
Annually, more than 2.5 million Americans seek medical care for a TBI as tracked through emergency department (ED) visits.1 The actual incidence is undoubtedly higher. Despite this enormous burden of injury, historically the National Institutes of Health (NIH) has underfunded TBI research. By way of comparison, one professional athlete can likely sign an individual contract that exceeds the annual NIH budget for all concussion research — which is less than $95 million a year. Given the lack of funding for TBI research, we should not be surprised by how little we know about concussion and TBI in general.
With the success of modern medicine, the average American probably believes diagnosing a concussion is as definitive as confirming cancer or a heart attack. Nothing could be further from the truth!
Here are dirty little secrets the majority of the public needs to know:
- At last count, there are over 42 different definitions of concussions from multiple organizations. Thus, nobody knows the real definition because there are no tools to diagnose the condition objectively.
- The Food and Drug Administration (FDA) has approved no drugs or treatments for concussion, largely due to our inability to accurately characterize the injury.
- Medications that are prescribed for symptoms of TBI are “off-label” because there is no FDA approval for concussion-specific drugs.
- Nearly 60 percent of patients who visit an ED and recount a medical history consistent with head trauma are sent home without adequate screening for a concussion, symptom information, or referral instructions should symptoms persist.2
- Many doctors do not believe that concussions can be effectively treated; therefore, they opt not to provide referrals to a specialist.
- The Glasgow Coma Scale (GCS) and the Glasgow Outcome Scale-Extended (GOS-E) are the only clinical outcome measure currently accepted by the FDA as diagnostic for mild or moderate TBI. However, both are universally considered inadequate for determining patient outcomes for those who do not have positive CT scans.3 Given that these tests are not uniformly administered, there is growing concern about the validity of studies that rely on them as a diagnostic and outcome measure.
- Pharmaceutical companies have largely exited drug development for neurodegenerative diseases because costs are too high, and the absence of biologically-based diagnostics makes success too risky.
How can we have reached this state? How is it that an injury that has impacted the sports world like no other, affected so many service members and millions of average Americans, can be left floating in the backwaters of scientific knowledge? How can the press, public, and Hollywood speak so definitively about the effects of concussions, vilify those accused of covering up the long-lasting effects of concussion, while not a single therapy for the injury has received approval by the nation’s sole drug, device and diagnostic regulatory agency?
The answers are both simple and complicated. The simple, undeniable fact is that TBIs, neurodegenerative diseases and all of the maladies of the brain are individually and collectively challenging problems.
The complicated part of this equation is an incentive system that is steeped in academic tradition and thus far has proven refractory to harnessing the power of team science. This traditional approach is optimal to solving easy problems but ill-suited to unscrambling the hard puzzles — especially ones that cross disciplines. These problems are not going to be solved by the single smartest researcher, with the biggest lab, even at the most prestigious research university. They are not going to be solved by a series of disconnected “science fair projects” that claim “breakthroughs” with a sample size of 60 patients. They are not going to be solved by an academic tradition that rewards researchers who are captive to an incentive system that places first author and last author ahead of helping the patient.
Let’s start talking with one another, not past one another to overcome these barriers through collaboration and team science. Don’t all Americans who have suffered a concussion deserve this?
Our work at One Mind is focused on breaking down these barriers and increasing collaboration efforts in order to accelerate the development and implementation of improved diagnostics, treatments, and cures for concussions, along with other diseases and injuries of the brain. We believe that the key to these fundamental changes is an adherence to open science principles, where high quality data is made available and shared among collaborative research teams. We also believe this new model for neuroscience research will not only shorten the time required to find answers, but serve as a model for all of neuroscience.
Editor’s Note: During the month of September, we encourage everyone to join the conversation online by using the hashtag #ConcussionFacts.
1 “Injury Prevention & Control: Traumatic Brain Injury.” Centers for Disease Control and Prevention. Web. http://www.cdc.gov/TraumaticBrainInjury/get_the_facts.html
2 Powell J, Ferraro J, Dikmen S, Tempkin N,Bell K, “Accuracy of Mild Traumatic Brain Injury Diagnostics”. Arch Phys Med Rehabil Vol 89, August 2008: 1550.
3 “Study Shows Inaccuracies in GCS Score Among All Emergency Care Providers.” Journal of Emergency Medical Services. Web. http://www.jems.com/articles/print/volume-40/issue-11/departments-columns/street-science/study-shows-inaccuracies-in-gcs-score-among-all-emergency-care-providers.html