The congressional Brain Injury Task Force, co-chaired by Reps. Bill Pascrell Jr. (D-N.J.) and Don Bacon (R-Neb.), spoke to hundreds of people gathered at the Rayburn House Office Building last week. The crowd included brain injury survivors, caregivers, advocates, policymakers, and various divisions of the health care industry to discuss a growing public health crisis.
One area of focus was the development of a national traumatic brain injury registry, a vital step for getting a handle on how best to manage this difficult-to-treat condition.
Traumatic brain injury (TBI) is usually caused by a blow or jolt to the head that disrupts the brain’s normal function. It can be mild and temporary or severe and life-altering. Individuals who sustain a TBI often suffer from a cascade of health conditions, including problems with movement and sensation, anxiety and depression, epilepsy, sleep deprivation, personality changes, alcohol or opioid abuse, and memory loss.
Members of the military, athletes, children, and the elderly are especially prone to TBI. More than 100 U.S. soldiers suffered brain trauma after Iran’s missile strike on Al Asad Air Base in western Iraq. And it disproportionately affects vulnerable populations, leading to sociologically damaging results at an increased and alarming rate: 53% of homeless individuals, more than 65% of prisoners, and up to 75% of women experiencing domestic violence.
Traumatic brain injury places a massive personal and economic burden on the United States and other countries, with an estimated $80 billion in lifetime costs in the U.S. alone. Since 2006, the number of TBI-related emergency department visits, hospitalizations, and deaths has increased by 53% to nearly 3 million, of which more than 837,000 were among children. And just last week the Centers for Disease Control and Prevention reported that since 2008, the number of TBI-related deaths from falls increased 17%, mainly in the elderly.
I’ve been working in neuroscience research for more than 20 years and am appalled at how this devastating condition is often overlooked and poorly resourced.
The need for a nationwide traumatic brain injury registry
To better address this public health issue, the Department of Health and Human Services must create a national TBI registry. That would help improve research and treatment in many ways.
Management guidelines for TBI haven’t been updated since 2008, and current treatments do little to help those living with its long-lasting effects.
A rudimentary tracking system exists, but it is decentralized and relies on states and regions to construct their own registries. That makes it difficult to get comprehensive data on TBI.
A centralized, nationwide TBI registry would collect and collate data on thousands of TBI patients — and ideally all of them. It would include how they were injured, how they were treated, the outcomes of this treatment, and the long-term effects of both the injury and the treatment.
This kind of data could galvanize the development of updated clinical treatment guidelines, standardize care across the country, and drive clinical trials that lead to breakthroughs and innovation. It would also give individuals living with traumatic brain injuries and their families better information for navigating the disjointed health care system for TBI care and support.
I am heartened that there is support in Congress for such a registry. During the Brain Injury Task Force hearing in Congress, which was sponsored by the Brain Injury Association of America, Pascrell said that Congress is “working to develop a national TBI registry so brain injury survivors and loved ones can access adequate care and provide proper protocols.”
It is imperative that this registry be accessible from 360 degrees of care: clinical researchers, physician specialists, patients and patient advocacy groups, the Departments of Defense and Veteran Affairs, and other stakeholders.
The ultimate goal of this registry would be to find a cure for traumatic brain injury, something my company, SanBio, has been working to do using an experimental stem cell therapy that aims to treat paralysis, uncontrolled movements, and other motor deficits that often accompany TBI.
A centralized national TBI registry would provide a resource to accelerate knowledge sharing across organizations and state borders, which is essential for easing the effects of traumatic brain injury.
To overcome the devastating effects of this trauma, we need to make resources and research accessible at a national level. The millions of Americans who sustain TBIs each year — including those serving in the military and some of the most vulnerable members of society — depend on us to do so.
Keita Mori is the president and co-CEO of SanBio, a regenerative medicine company headquartered in Tokyo and Mountain View, Calif.
My son had a devastating TBI GCS 5 and I had to to give him CPR on the ski hill. After going through this process for 2 years all I can say that being the patient advocate and challenging and asking questions can get you a better solution set. There are therapies out there that aren’t FDA improved that work- take O2 chambers for example – the data is there – find the Israelis study and show your doctor. MSC stem cells work – call Celltex down in Texas. I remain committed to doing everything for my boy. If SanBio is reading this thank you for all of your hard work here. I read your letter to the stroke patients when the end Point wasn’t met and I am so sorry. There is no shame for working that hard that long. If that work opens up options for TBI then it was not for no avail. There are plenty of people out there that are watching intently to see your results and we wish you guys a great study and tests! Matt
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