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Center for Large Data Research & Data Sharing in Rehabilitation

Rehabilitation Dataset Directory: Dataset Profile

Dataset: Traumatic Brain Injury Model Systems (TBINDSC)

Basic Information
Dataset full name: Traumatic Brain Injury Model Systems
Dataset acronym TBINDSC
Summary The Traumatic Brain Injury Model Systems (TBIMS) is funded by the National Institute on Disability and Rehabilitation Research (NIDRR), office of special education and rehabilitative services, U.S. department of education. There are 16 TBIMS actively funded centers and 4 previously funded TBIMS centers for longitudinal follow-up. Each TBIMS is involved in center-specific clinical trials, collaborative research, data collection, measuring long term outcomes and reporting data to Traumatic Brain Injury Model Systems National Database (TBINDSC). TBINDSC is largest source of longitudinal data including information on acute rehabilitation and over 20 years of follow up TBI data. The objective of the TBI database is to provide data regarding evidence based practice in TBI intervention, research and long term outcomes. Each center has a specific area of focus, for example TBIMS at Colorado & California focus on health, wellness, functional outcomes, and physical activity. The TBIMS at Ohio, Minnesota and Virginia wrk in the area of employment, participation outcomes and RIC Chicago is involved in the development of robotics technology. Recently a joint agreement has been made between VA polytrauma centers, TBI veterans health registry and the TBINDSC.
Key Terms Traumatic Brain Injury, Brain Injury, Model System, Rehabilitation, Data, and Outcomes
Study Design Longitudinal
Data Type(s) Clinical
Sponsoring Agency/Entity National Institute on Disability and Rehabilitation Research (NIDRR), Office of Special Education and Rehabilitative Services, U.S. Department of Education
Health conditions/Disability measures
Health condition(s) Traumatic Brain Injury (TBI), ICD-9/10 diagnostic codes
Disability Measures Disability Rating Scale, Functional Independence Measurement, Neuropsychological Battery including Orientation Log, California Verbal Test - II, and Reitan Trail Making Test, Glasgow Coma Scale - Longitudinal
Measures/outcomes of interest
Topics Socio-demographic: Age, Gender, Race, Marital status, Level of education, Zip code, Living setting, Employment including hourly wages Premorbid History: Drug Use, Alcohol use, Conditions and limitations, Psychiatric History Arrests/felony incarcerations, Learning/behavior problems, Military History Etiology of injury: ICD-9 external cause of injury codes, Blood alcohol level Severity of Injury: Glasgow Coma Scale Score, Revised Trauma Score, Duration of unconsciousness, Duration of Post Traumatic Amnesia Diagnosis: Spinal Cord Injury, Intracranial CT scan findings, Intracranial hypertension Neuropsychological assessment, ICD-9 diagnosis codes, Cause of death Treatments: Surgical procedure, Re-hospitalizations, length of stay, payer source Outcomes: Types of Impairment, Disability Rating Scale (DRS), Functional Independence Measure, Glasgow Outcome Scale, Supervision Rating Scale, Follow-up data: Depression, Alcohol use, transportation, Patient Health Questionnaire, Satisfaction with Life Scale, Participation Assessment
Sample Population Individuals with Traumatic Brain Injury
Sample Size/Notes 1989-1998: 1,202, 2008 : 7,000, 2010: 10,629
Unit of Observation Individual
Geographic Coverage From current 16 TBIMS and 4 TBIMS longitudinal follow-up centers*.
UAB Traumatic Brain Injury Care System, Birmingham AL
Northern California TBI Model System, San Jose CA
Rocky Mountain Regional Brain Injury System, Englewood CO
Rehabilitation Institute of Chicago, Chicago IL
Southeastern Michigan Traumatic Brain Injury System, Detroit MI
Mayo Clinic Traumatic Brain Injury Model System, Rochester MN
Carolinas Rehabilitation/Carolinas HealthCare System, Charlotte NC
JFK-Johnson Rehabilitation Institute Traumatic Brain Injury Model System, Edison NJ
Northern New Jersey Traumatic Brain Injury System, West Orange NJ
New York Traumatic Brain Injury Model System, New York NY
The Ohio Regional TBI Model System, Columbus OH
Moss TBI Model System, Elkins Park PA
North Texas Traumatic Brain Injury Model System, Dallas TX
The Institute for Rehabilitation and Research, Houston TX
The Virginia Commonwealth TBI Model System, Richmond VA
University of Washington Traumatic Brain Injury Model System, Seattle WA
*Methodist Rehabilitation Center, Jackson MS
*University of Pittsburgh, Pittsburgh PA
*Shepherd Center, Atlanta GA
*Spaulding Rehabilitation Hospital, Boston MA
Geographic specificity TBIMS regions
Data Collection
Data Collection Mode Initial intake: in person
Follow up: phone/mail
Years Collected 1989 to present Form I - Acute care: 214 variables
Form II - Follow-up: 153 variables
Data Collection Frequency Collected at discharge, 1 year after injury, 5 years after injury, and follow-up every 5 years there after
Strengths and limitations
Strengths Only database for TBI, large sample size, use of valid and reliable measures, geographic and patient diversity
Limitations Data include only model system patients, High Attrition especially after year 2 of follow-up, Lack of uniform treatment & rehabilitation strategies, No information on service utilization upon discharge, No further follow-up evaluations if center defunded
Data details
Primary Website
Data Access
Data Access Requirements Data Use Agreement, No Cost
Summary Tables/reports
Dataset components (where applicable) Pre-morbid Questionnaire, Form 1 (Acute & Post-acute Rehabilitation Care), and Form II (Follow-up documenting Rehabilitation Outcomes)
Selected papers
Technical NA
Other Papers Tamara Bushnik. Traumatic Brain Injury Model Systems of Care 2002−2007. Archives of Physical Medicine and Rehabilitation 2008. 89 (5) 894-895 Corrigan JD, Cuthbert JP, Whiteneck GG, Dijkers MP, Coronado V, Heinemann AW, Harrison-Felix C, Graham JE. Representativeness of the Traumatic Brain Injury Model Systems National Database. J Head Trauma Rehabilitation. 2011 Sept

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The Rehabilitation Research Cross-dataset Variable Catalog has been developed through the Center for Large Data Research & Data Sharing in Rehabilitation (CLDR). The Center for Large Data Research and Data Sharing in Rehabilitation involves a consortium of investigators from the University of Texas Medical Branch, Cornell University's Yang Tan Institute (YTI), and the University of Michigan. The CLDR is funded by NIH - National Institute of Child Health and Human Development, through the National Center for Medical Rehabilitation Research, the National Institute for Neurological Disorders and Stroke, and the National Institute of Biomedical Imaging and Bioengineering. (P2CHD065702).

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