Traumatic Brain Injury Data Dictionary
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The Traumatic Brain Injury Model System Centers Program
The Traumatic Brain Injury Model System (TBIMS) Centers program, begun in 1987, currently consists of 16 centers across the US that are competitively funded for 5 years by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR). The TBIMS Centers are situated in centers of excellence for clinical care and innovative research focused on improving the lives of people with TBI, their families, and close others. The primary focus is on moderate to severe TBI, as patients are recruited from inpatient rehabilitation to participate in research; however, many TBIMS investigators are also interested in mild TBI, or concussion.
The National Database (NDB), managed by the TBIMS National Data and Statistical Center, is at the core of the TBIMS Centers program. More than 20,000 individuals are currently enrolled in the NDB. Each TBIMS center collects and enters into the NDB an identical data set on each individual, which captures:
Emergency and acute care information such as CT scan findings and depth/ duration of loss or alteration of consciousness;
Status and progress during inpatient rehabilitation;
Pre-injury social and demographic data;
Findings from a battery of measures assessing functional, social, emotional, cognitive, and medical outcomes at 1, 2, 5, 10, 15 years after the TBI and every five years thereafter. The TBIMS is unique in the scope of its longitudinal data on the outcomes of persons with complex mild/ moderate/ severe TBI.
Recent research (Corrigan et al. 2012; Cuthbert et al. 2012) has confirmed that the TBIMS NDB is representative of persons receiving inpatient rehabilitation for TBI in the US.
In addition to the enrollment and data capture for the NDB, NIDILRR funding supports the following types of TBI research within TBIMS Centers:
- Data mining studies, which examine relationships among existing data elements in the NDB;
- Local research projects, which are site-specific studies proposed for each 5-year grant cycle;
- Module research projects, which are time-limited, multi-center studies designed to capitalize on the TBIMS infrastructure to address focused research questions that cannot feasibly be answered by a single center. In each 5-year cycle, centers propose and participate in moduler studies of interest to them. Module projects have produced new knowledge on (e.g.) the natural history and typology of headache after TBI, the prevalence and outcomes of treatments for deep venous thrombosis, and the feasibility and utility of assessing cognitive function via telephone.
The TBIMS centers work in collaboration with the separately-funded Model Systems Knowledge Translation Centerhttps://msktc.org to provide scientific results and information for dissemination to stakeholders, including persons with TBI and their families, researchers, clinicians, and policymakers.
Participating Centers
Currently, there are 16 TBIMS Centers and 4 TBIMS Longitudinal Follow-Up Centers,* sponsored by the NIDILRR.
- Georgia Model Brain Injury Systems, Atlanta GA
- Indiana University/Rehabilitation Hospital of Indiana, Indianapolis IN
- Mayo Clinic Traumatic Brain Injury Model System Center, Rochester MN
- Moss Traumatic Brain Injury Model System, Philadelphia PA
- New York Traumatic Brain Injury Model System, New York NY
- North Texas Traumatic Brain Injury Model System, Dallas TX
- Northern New Jersey Traumatic Brain Injury System, East Hanover NJ
- Rusk Rehabilitation TBI Model System, New York NY
- Southeastern Michigan Traumatic Brain Injury System, Detroit MI
- Spaulding-Harvard Traumatic Brain Injury System, Charlestown MA
- The Ohio Regional TBI Model System, Columbus OH
- The Rocky Mountain Regional Brain Injury System, Englewood CO
- TIRR Memorial Hermann/Baylor College of Medicine/UT Health Collaborative, Houston TX
- University of Alabama at Birmingham Traumatic Brain Injury Care System, Birmingham AL
- University of Washington Traumatic Brain Injury Model System, Seattle WA
- Virginia Traumatic Brain Injury Model System, Richmond VA
- * Carolinas Traumatic Brain Injury Rehabilitation and Research System, Charlotte NC
- * JFK Johnson Rehabilitation Institute Traumatic Brain Injury Model System, Edison NJ
- * Northern California TBI Model System, San Jose CA
- * University of Pittsburgh Medical Center Traumatic Brain Injury Model System, Pittsburgh PA
Components of the Traumatic Brain Injury Model System Centers
As stated in the current Traumatic Brain Injury Model System (TBIMS) Centers Program priority, TBIMS centers must provide “a multidisciplinary system of rehabilitation care specifically designed to meet the needs of individuals with TBI. The system must encompass a continuum of care, including emergency medical services, acute care services, acute medical rehabilitation services, and post-acute services.”
There has historically been substantial variability in the components of care within the TBIMS centers and the manner in which these various components interact. The number of acute care hospitals in any one current TBIMS center varies from 1–12, with trauma center designations of Level 1–Level 4. Although not a stated requirement, all current TBIMS Centers include at least one Level 1 trauma center. Relationships with these hospitals range from formal (written affiliation agreements with trauma departments, emergency departments, or hospital administration) to verbal agreements. Faculty from the acute care facilities may or may not be coinvestigators within the TBIMS Centers program. In some cases, acute care facilities require their own IRB review and approval and in other cases they do not.
Access to medical records from the referring/acute care hospital also varies. In some cases, staff visit the referring hospital and view records onsite to abstract data. Other hospitals send the medical record in paper or digital form, when a signed release of information request is received.
The TBIMS Centers Program priority requires that a minimum of 35 persons be enrolled annually in the TBIMS National Database by each TBIMS Center. Multiple acute care/referring hospitals may be included in systems of care to increase the annual enrollment of that system, or to increase the representativeness of the sample.
In most cases, participants are transferred directly from referring acute care hospitals to inpatient brain injury rehabilitation facilities (IRFs). Some Centers have incorporated long-term acute care hospitals (LTACHs) into their system of care. Among these Centers, the role of the LTACH is variable. In some Centers, the LTACH serves as the primary and sole rehabilitation setting. In all cases, patients remain within the system of care through discharge from the rehabilitation facility. While all Centers must provide multidisciplinary brain injury rehabilitation services, the number of therapy hours provided per day may vary by setting. All TBIMS Centers are required to follow established protocols for the collection of enrollment and follow-up data on all participants.
| Components of a TBI Model System of Care | Components Less Frequently Included |
|---|---|
| At least one Level 1 trauma center | Level 2 trauma centers |
| At least one inpatient rehabilitation hospital | Day treatment community integration program |
| Individual outpatient therapies | Alcohol and substance abuse outpatient therapy |
| Physician follow-up clinic | Vocational rehabilitation |
| Neuropsychology follow-up clinic | Skilled nursing facility |
| LTACH | |
| Assistive technology | |
| Spasticity/dystonia management clinic | |
| Clubhouse programs | |
Citation
Title: Traumatic Brain Injury Model Systems National Database. Author: Traumatic Brain Injury Model Systems Program Distributor: Traumatic Brain Injury Model Systems National Data and Statistical Center Persistent identifier: DOI 10.17605/OSF.IO/A4XZB Date: 2019 Url: http://www.tbindsc.org Version: https://osf.io/a4xzb
Acknowledgement
The contents of this report were developed under grants from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant numbers: 90DPTB0018; 90DPKT0009). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this annual report do not necessarily represent the policy of NIDILRR, ACL, HHS, and you should not assume endorsement by the Federal Government.