The Model Systems Databases – A Wealth of Data at Your Fingertips

What are the leading causes of spinal cord injury, traumatic brain injury, and burn injury? How can a person’s age when they were injured impact their recovery? How many people with these injuries return to work? These are the kinds of questions that researchers turn to the NIDILRR-funded Model Systems data centers to answer. NIDILRR funds three national data centers that house and disseminate data on individuals who are treated through Spinal Cord Injury Model System Centers, the Traumatic Brain Injury Model System Centers, and the Burn Injury Model System Centers. At each model system center, researchers gather information about the individuals who receive care and treatment for their injury, and then follow up with these individuals at regular intervals to track their progress over the long term. These data are collected and submitted to the data centers following strict criteria and guidelines to ensure the quality and rigor of the databases. Each data center manages, maintains, and analyzes these data sets to produce reports, factsheets, and tools for researchers, policy makers, and the general public. Data center staff also help researchers around the world to access these data sets and conduct their own studies to increase our knowledge and understanding of the long-term effects of these traumatic injuries.  Get to know these three data centers and the tools they offer to help answer your questions about SCI, TBI, and burn injury.

National Spinal Cord Injury Model Systems Database

The National SCIMS Database is the oldest of the three data collections established in 1973. It is the largest and longest active SCI research database in the world, with information on more than 33,000 persons who have sustained SCI requiring hospitalization and rehabilitation. Fourteen SCI Model System Centers enroll participants and collect their information at the time of injury, including demographics, injury characteristics, and outcomes such as employment and health status. These centers also continue to contact the participants at regular intervals to gather follow-up data after their discharge from treatment.  Five additional centers contribute follow-up data only on some previously enrolled participants. Individuals enrolled in the database in 1973 have now been followed for more than 40 years. The National SCI Statistical Center maintains this data collection at the University of Alabama at Birmingham. They produce an annual SCI Facts and Figures at a Glance factsheet, available in English and Spanish, documenting rates of SCI in the US, prevalence and causes, demographics, lifetime costs, life expectancy, and causes of death. Their Frequently Asked Questions answer many of the common questions about the impact of SCI like how often people return to work after an injury.

The National SCI Statistical Center has created two quick tools that use the National SCIMS Database to answer questions about causes and life expectancy. Leading causes of SCI can calculate leading cause by date range, age, race/ethnicity, and sex. The Life expectancy Calculator – estimates life expectancy of a person with SCI who has already survived at least one year but has not regained movement and feeling. Both are available online.

Anyone may request to use the data gathered in the National SCIMS Database to conduct their own research and analysis of the impact of SCI. To learn more about how to access the National SCIMS Database data, contact NSCISC at nscisc@uab.edu.

Explore a bibliography of database publications and presentations by the National SCI Statistical Center, SCI Model Systems projects, and others.

The NSCISC offers the DeVivo Mentored Research Award for trainees who are interested in conducting a research project using data from the National SCIMS Database.

National Traumatic Brain Injury Model Systems Database

The National TBIMS Database was established in 1988 and contains data from more than 16,000 individuals with moderate to severe TBI who receive inpatient rehabilitation. It is the world’s largest TBI longitudinal database that includes preinjury, injury, care and rehabilitation, and outcomes data over the years. As with the National SCIMS Database, people who are enrolled in the National TBIMS Database are followed at regular intervals. The 16 current TBI Model System Centers, as well as 3 follow-up centers, contribute to the database. Individuals enrolled in the first cohort in 1988 have now been followed for close to 30 years. The National TBIMS Database is maintained by the TBI National Data and Statistical Center (TBINDSC) at Craig Hospital in Colorado. The TBINDSC produces reports and factsheets, such as this one on the lifelong impact of moderate to severe TBI and this profile of people in within the TBI Model Systems.

Anyone may request to use the data gathered in the TBIMS National Database to conduct research, both within the TBI Model System Centers and from other institutions. The TBINDSC hosts several interactive tools developed by researchers to describe the database at an individual level. To learn more about how to access the National TBIMS Database, contact the TBINDSC at cbeagye@craighospital.org. The TBI Model System Centers offer the Mitchell Rosenthal Award for best paper using data from the National TBIMS Database. The award is open to any paper regardless of funding source.

Burn Model Systems National Database

The Burn Model Systems National Database is the newest of the three databases, established in 1994 to collect data from the Burn Injury Model Systems. Four Burn Injury Model System Centers contribute data collected from individuals who receive acute care and rehabilitation in their centers. The BMS National Database includes more than 3,000 adults and almost 2,000 children with moderate to severe burn injury, with data on demographics, injury characteristics, and outcomes for up to 25 years. As with the two other databases, individuals who are enrolled in the database are followed at regular intervals to collect updates.

The BMS National Database is maintained at the Burn Model System National Data and Statistical Center at the University of Washington in Seattle. The researchers at the BMSNDSC conduct quantitative and qualitative analyses of the data collected by the Burn Model Systems to produce a wealth of research publications. They also produce snapshots of the data, including causes of injury, and Facts and Figures about Adults and Children enrolled in the database.

Anyone may request to use the data collected in the BMS National Database to conduct research and analysis on the impact of burn injury. To learn more about how to access the BMS National Database, contact the BMSNDSC at burndata@uw.edu.

We index many of the studies developed using data from the three Model Systems data centers, regardless of whether they were prepared by NIDILRR-funded projects or centers.

Explore publications indexed in NARIC’s REHABDATA database:

You may also find more articles in PubMed, ERIC, Scopus, and other indexing databases, as the abstracts often mention the data source.

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