While the cause of a traumatic brain injury -- a car wreck, a fall down the stairs, a concussion on the soccer field -- is often known, the next steps in the treatment process and predictions of a patient's future are not always as clear.
In January, neuroscientists at the University of Iowa established a registry to track and study traumatic brain injury, a condition that affects 1.7 million Americans each year.
The Iowa Traumatic Brain Injury Registry is designed to help researchers gain information to improve brain-injury patients' quality of life.
"We learn the effects of traumatic brain injury on behavior and how the brain reorganizes and recovers, but we want to know more about who's going to get better, how can we help them get better, and what we can do to put all brain-injury survivors on a better life trajectory," said Melissa Duff, assistant professor of communication sciences and disorders in the College of Liberal Arts and Sciences and faculty member in the neuroscience interdisciplinary graduate program.
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.
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 and more than 95,000 Iowans are living with long-term disabilities resulting from brain injury.
"The patient registry at UI Hospitals and Clinics is a tremendous asset to the field," said Geoffrey Lauer, executive director of the Brain Injury Association of Iowa. "This registry indicates an increased interest in and need for clinical research that translates into treatment and hope. We talk about hope, help and healing at the Brain Injury Association of Iowa."
Lauer said the Iowa Traumatic Brain Injury Registry assists brain injury patients in a different way than the state's Iowa Trauma Registry, which is administered by the Iowa Department of Public Health.
"The UIHC Iowa Traumatic Brain Injury Registry focuses on research, while state registry has a surveillance component," Lauer said. "There isn't a long-term system of care that helps people learn to live well with brain injury, so this new registry is exciting stuff."
Duff started the registry with the help of Daniel Tranel, professor of neurology and psychology and director of the neuroscience interdisciplinary graduate program, and Rupa Gupta, a PhD student in neuroscience.
"The really interesting thing about this is every case is different," Gupta said. "We just don't understand enough about how the brain recovers from this type of really diffuse injury."
That makes it difficult to predict the future of these patients.
"Take two teenage boys who were in car accidents, and whose injuries look identical on paper – their neuropsychological tests reveal the same kinds of deficits, and their brain scans show the same site of injury," Duff said. "One might recover well enough to go to college and have meaningful relationships, while the other won't. Right now, it's hard to explain why. The registry could help shed some light on a mystery like that."
The new registry has about 15 participants, and increased participation is needed for it to succeed, given the wide range of ages and medical conditions of patients with traumatic brain injury. Those interested in participating in the registry should contact Duff at TBI-Registry@uiowa.edu or (319) 356-8532.