NIDILRR funds three national data centers focused on spinal cord injury (SCI), traumatic brain injury (TBI), and burn injury. These centers collaborate with the model system centers across the United States (US) that conduct research about rehabilitation and interventions to help people with these injuries recover and return to their communities. Each model system center collects information from participating individuals at regular intervals for many years. Examples of the collected information include types and severity of injuries, what types of treatment they received in the hospital, how long they stayed in inpatient rehabilitation, whether they return home, if they go back to work or school, and changes in their physical and mental health over time. This information helps us understand the long-term impact of SCI, TBI, and burn injury and develop programs to improve the lives of individuals and their families.
The data, without personally identifiable information, is available for use at no cost. Interested users can request the data by filling out a form on the National Data Centers’ web sites as included below.
Let’s get to know the three centers!
National Spinal Cord Injury Statistical Center (NSCISC)
NSCISC maintains the oldest of the three databases, collecting data since 1973 from more than 55,000 people who received treatment for SCI at one of the SCI Model System Centers across the US. Currently, 18 centers contribute data to the collection. More than 300 publications have resulted from the use of the SCI Model System data.
In addition, NSCISC produces resources about SCI in the US, including tools to understand causes of SCI in the US and to help estimate life expectancy following SCI. Reports and factsheets include Traumatic Facts & Figures at a Glance, Recent Trends in Causes of SCI, a Traumatic SCI Infographic, and an Annual Statistical Report.
Traumatic Brain Injury Model System Data and Statistical Center (TBINDSC)
TBINDSC began in 1987 and now contains data on more than 19,000 people who received treatment at one of the TBI Model System Centers across the US. Currently, 16 centers contribute data to the collection. More than 100 publications have resulted from the use of TBIMS data, including several special journal issues. Thanks to this database, we have a better understanding of TBI as a lifelong condition (PDF).
Burn Model System (BMS) National Data and Statistical Center
The BMS National Data and Statistical Center began in 1994 and now contains data on more than 6,000 people with moderate to severe burn injury who received treatment at one of the BMS centers in the US. Currently, four centers contribute data to the collection. More than 130 publications have resulted from the use of the BMS. In addition, center staff conduct their own research and analysis and develop scales and tools to advance recovery through knowledge.
What do researchers do with such rich sources of information?
Here are some examples of recent publications available from our collection:
Demographic and health profiles of people living with traumatic spinal cord injury in the United States during 2015-2019: Findings from the spinal cord injury model systems database. This study looked at the demographics and health profile of more than 20,000 people with traumatic SCI in the US, including education and employment, changes in pain and urinary tract health, hospitalization, pressure injuries, and more. Health conditions declined with advanced age, including self-perceived health, diabetes, and institutional residence. People who survived SCI for years, however, had relatively good degrees of independence and social participation.
Cognitive performance, depression, and anxiety one-year after traumatic brain injury. This study looked at the relationships between depression, anxiety, and cognitive impairment in people with complicated mild-to-severe TBI. The results suggest that both depression and anxiety have a small but significant negative association with cognitive performance in the context of complicated mild to severe TBI. These findings highlight the importance of considering depression and anxiety when interpreting TBI-related neuropsychological impairments, even among more severe TBI.
Long-term physical and mental health outcomes of older adults following a major burn injury: A burn model system investigation. This study looked at physical and mental health outcomes across three age groups: 18-54, 55-64, and 65 and older. The results indicate that patients 65 years and older have a different physical function recovery trajectory when compared to patients under 64 years. These findings underscore the belief that individualized physical rehabilitation plans will provide the most benefit for physical recovery after a burn injury.
You can search and explore our REHABDATA database and the individual data center websites for publications that used the model system databases.
