For scientists who study traumatic brain injury (TBI), July was a significant month for the future of TBI research: the TBI Model Systems National Database study reached 15,000 participants.

The database collects standardized recovery and outcomes data on patients with TBIs serious enough to require hospitalization. The data includes information about pre-injury conditions, the injury itself, acute care and rehabilitation. Follow-up occurs at one, two and five years after the injury, and every five years thereafter up to 25 years.

“The longevity and the participant numbers together are what make this research hugely important,” said Dr. Felicia Qashu, program officer for the Common Fund at the National Institutes of Health and former deputy director of the Research Division at the Defense and Veterans Brain Injury Center (DVBIC).

“Tracking follow-up on this many patients over the course of more than two decades will immensely expand our knowledge about morbidity, mortality and neurodegenerative diseases, as well as the effects on mental health and the impact of comorbid conditions, for patients with moderate and severe TBIs,” Qashu said.

TBIMS National Database and DVBIC

Patients enrolled in the database come from TBI Model System centers — that is, hospitals with exemplary TBI care programs, such as the Mayo Clinic. Sponsored by the National Institute on Disability, Independent Living, and Rehabilitation Research, TBIMS centers include both civilian and veteran facilities.

Although the participant milestone excludes veterans, who are tracked separately, “DVBIC has played an important role as a research collaborator, sharing and translating knowledge, as well as serving in an advisory capacity,” said Qashu.

DVBIC researchers have collected long-term TBI recovery and outcomes information on veterans through the Department of Veterans Affairs TBIMS program since 2008. DVBIC VA network sites comprise four of the five VA TBIMS centers. DVBIC also leverages TBIMS data for other large-scale research projects, including congressionally mandated 15-year studies on the effects of TBI incurred by service members during the conflicts in Iraq and Afghanistan.

Infrastructure for the civilian and VA databases remains distinct, but the two programs will eventually merge and combine their data.

A Team Effort

The success of studies such as the TBIMS depends on collaboration among researchers. But volunteers are essential, too. Neither the TBIMS nor the VA TBIMS would be possible without the thousands of TBI patients who volunteered to participate.

The history of medical research boasts extraordinary accomplishments that have changed how we think about the limitations of the human body. In just the last hundred years, vaccines have stopped the spread of dangerous diseases; transplants have saved the lives of patients with organ failure; and the decoding of the human genome promises a future of personalized medicine.

Research that led to these achievements — and many others — relies on the informed and voluntary participation of both patients and healthy subjects.

TBI research is no exception. DVBIC currently supports more than 60 TBI research studies, many of which are enrolling new participants. Learn more about current research and studies on the DVBIC website.

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