These are people who, if you see them in the grocery store, appear fine. They’re walking and talking just like you.

But they’re not just like you. They have an invisible medical condition called traumatic brain injury. Many of these people are falling through the cracks of society in terms of education, vocation, and recreation.

In January 2011, University of Iowa neuroscientists launched a registry to study people with traumatic brain injury—a condition that affects 1.7 million Americans each year. Established at UI Hospitals and Clinics, the Iowa Traumatic Brain Injury Registry is designed to help researchers gain information to improve brain-injury patients’ quality of life.

“Every person who participates in the registry reconfirms why we have to do this registry and why we need to do it on the scale that we are proposing doing it,” says Melissa Duff, director of the Iowa Traumatic Brain Injury Registry and faculty in the Interdisciplinary Graduate Program in Neuroscience.

“These individuals struggle to get jobs, and they to keep jobs. There are many positions they hold, that more accurately tap their capacity and drive, but they need assistance.”

There are 20 participants in the registry—ages 20 to 80. “We have been contacted by people from California to Florida who want to participate in our program,” says Duff who would like to see participation grow into the thousands. Those interested in participating in the registry should contact Duff at TBI-Registry@uiowa.edu or 319-356-8532.

According to the Brain Injury Association of Iowa, more than 2,500 Iowans per year sustain a traumatic brain injury severe enough to require hospitalization. More than 95,000 Iowans are living with long-term disabilities resulting from brain injury.

The Iowa Traumatic Brain Injury Registry currently is a research engine, enabling UI researchers to document patient stories.  

“So many of the people in the registry have the same struggles in their lives,” says Duff, assistant professor of communication sciences and disorders. “If enough people say they’re having the same experience, that gives us the credibility to talk to funding agencies and lawmakers and make some of the connections we need to get these folks back on track and integrated into society.”

While the patients’ experiences are overwhelmingly similar, they have very different profiles of their brain damage and cognitive abilities.

A traumatic brain injury is caused by a bump, blow or jolt to the head, or a penetrating head injury that disrupts the normal function of the brain. The severity of injuries ranges from a brief change in mental status or consciousness to an extended period of unconsciousness or amnesia. At least 75 percent of traumatic brain injuries that occur each year are concussions or other forms of mild traumatic brain injuries.

The registry has a goal to study concussion. Currently, Duff and her colleagues are studying people in the chronic phase—3 to 6 months post-injury. Ideally, they want to study people in the very acute phase—3 to 6 hours post-concussion.

While the vast majority of individuals who experience a concussion will have no obvious long-term consequences, some will have significant impairments. Currently, we do not have measures that are sensitive enough to detect all the disruptions caused by a concussion in the acute phase. As a consequence, we do not do a good job of predicting at the time of the injury who will have a good recovery and who will not.

Duff says the medical community has to make a big shift in how it works with these patients. She adds that there aren’t specific or sensitive enough tests to accurately detect these injuries.

“We are working with them under a medical model in which we fix things,” Duff says. “We really need to see traumatic brain injury as a chronic lifelong disability in the same way we view alcoholism. You identify the problem, but the problem isn’t cured. You can stop drinking, but you’re always going to have this condition.

“Things can go splendidly for years, and then something happens. They lose their job or lose a loved one, and now they have all these stressors and they’re going to need help. It’s the same thing with traumatic brain injury. When something happens down the road, they have nowhere to go.”

These patients need a wide range of services—such as neuropsychological testing, cognitive rehabilitation, vocational counseling, marriage counseling.

Duff understands the hurdles encountered by this population.

“The timing and type of services patients with traumatic brain injury receive is confined by the parameters of a medical model. That is, we front-load the majority of the clinical services to the days and weeks after their injury. Yet, research shows that the demand for nonmedical services, like cognitive rehabilitation, counseling, academic and vocational services, spikes after the patient’s discharge. This is the time when these non-medical services would most help their efforts to regain their independence. But, this is also the time when their insurance runs out. “

“Their personality has changed, and they probably have lost most of their friends.”

Personality and social behavior changes are the most visible deficits these patients. UI researchers plan to do neuropsychological testing of registry participants to develop an in-depth profile for how they’re functioning across all cognitive domains.

“(In the registry) we have individuals who had their injuries as children, adults who fall and have head injuries, and everything in between,” Duff says. “The reason we need a registry in the thousands is because this is a condition that affects people from all walks of life and from all age groups.”