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Rehabilitation Dataset Directory: Dataset Profile

Dataset: Traumatic Brain Injury Model Systems National Database (TBIMS)

Basic Information
Dataset Full Name Traumatic Brain Injury Model Systems National Database
Dataset Acronym TBIMS
Summary

Currently, there are 16 actively-funded Traumatic Brain Injury Model Systems (TBIMS) and 3 previously-funded TBIMS centers for longitudinal follow-up that collect detailed information about people with Traumatic Brain Injury (TBI) in their communities. Each TBIMS is involved in center-specific clinical trials, collaborative research, data collection, measuring long term outcomes and reporting data to the Traumatic Brain Injury Model Systems National Database (TBINDSC). The TBINDSC is the largest source of longitudinal TBI data, having originated in 1988 with many years of follow-up TBI data that includes information on acute rehabilitation. 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 and California focus on health, wellness, functional outcomes, and physical activity. The TBIMS at Ohio, Minnesota, and Virginia work in the area of employment and participation outcomes, while RIC Chicago is involved in the development of robotics technology.


Recently a joint agreement was made between VA polytrauma centers, TBI veterans health registry, and the TBINDSC to improve outcomes for persons with TBI.
Key Terms Traumatic Brain Injury, Brain Injury, Model System, Rehabilitation, Data, and Outcomes
Study Design Longitudinal
Data Type(s) Clinical
Sponsoring Agency/Entity

Department of Health and Human Services (HHS)

Administration for Community Living (ACL)

National Institute for Disability, Independent Living, and Rehabilitation Research (NIDILRR)
Health Conditions/Disability Measures
Health Condition(s)

Anxiety disorders, Body mass index (BMI)/obesity, Cancer, Cardiovascular conditions, Depression, Epilepsy or seizure disorder, Heart attack, ICD-9/10 diagnostic codes, Pulmonary disorders, Stroke, Traumatic brain injury (TBI),

Disability Measures Ambulatory disability, Cognitive disability, Communication impairment, Functional limitations (ADLs and/or IADLs), Hearing disability, Independent living disability, Mental health disability, Self-care disability, Visual disability, Work limitation
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
Sample Population Individuals with Traumatic Brain Injury
Sample Size/Notes 1988-2017: 15,608 persons with TBI
Unit of Observation Individual
Continent(s) North America
Countries

United States
Geographic Coverage

There are currently 16 TBIMS and 3 TBIMS longitudinal follow-up centers.*

  • University of Alabama at Birmingham Traumatic Brain Injury Care System, Birmingham, AL
  • Rocky Mountain Regional Brain Injury System, Englewood, CO
  • South Florida TBI Model System, Miami, FL
  • Indiana University/Rehabilitation Hospital of Indiana, Indianapolis, IN
  • Spaulding-Harvard Traumatic Brain Injury Model System, Boston, MA
  • Mayo Clinic Traumatic Brain Injury Model System, Rochester, MN
  • Northern New Jersey Traumatic Brain Injury System, West Orange, NJ
  • New York Traumatic Brain Injury Model System, New York, NY
  • Rusk Rehabilitation TBIMS at NYU, New York, NY
  • The Ohio Regional TBI Model System, Columbus, OH Moss TBI
  • Model System, Elkins Park, PA
  • University of Pittsburgh Medical Center Traumatic Brain Injury Model System, Pittsburgh, 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

TBIMS longitudinal follow-up centers:

  • *Northern California TBI Model System, San Jose, CA
  • *Southeastern Michigan Traumatic Brain Injury System, Detroit, MI
  • *Carolinas Rehabilitation/Carolinas HealthCare System, Charlotte, NC
Geographic Specificity TBIMS regions
Data Collection
Data Collection Mode Initial intake: in person Follow up: phone/mail
Years Collected

1988-present Form I - Acute care: 214 variables

Form II - Follow-up: 153 variables
Data Collection Frequency Collected at discharge, 1 year after injury, 2 years after injury, 5 years after injury, and follow-up every 5 years thereafter
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 and rehabilitation strategies. No information on service utilization upon discharge. No further follow-up evaluations if the center is defunded.
Data Details
Primary Website https://www.tbindsc.org/
Data Access https://www.tbindsc.org/Researchers.aspx
Data Access Requirements Data Use Agreement, No Cost
Summary Tables/Reports Data Dictionary: https://www.tbindsc.org/Syllabus.aspx
Data Components

Form I: Pre-morbid Questionnaire (Acute and Post-acute Rehabilitation Care)

Form II (follow-up): Rehabilitation Outcomes
Similar/Related Dataset(s)

Other Model Systems data:

Burn Injury Model Systems (BMS)

Spinal Cord Injury Model System (SCIMS)
Selected Papers
Other Papers Studies by TBIMS researchers:
http://www.msktc.org/publications?sys=T
Technical

www.msktc.org/tbi
Related Repositories
Repositories

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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).

Other CLDR supported resources and collaborative opportunities:

Acknowledgements: This tool was developed through the efforts of William Erickson and Arun Karpur, and web designers Jason Criss and Jeff Trondsen at Cornell University. Many thanks to graduate students Kyoung Jo Oh and Yeong Joon Yoon who developed much of the content used in this tool.

For questions or comments please contact disabilitystatistics@cornell.edu



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