|Dataset Full Name||Traumatic Brain Injury Model Systems National Database|
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|
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|
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|
There are currently 16 TBIMS and 3 TBIMS longitudinal follow-up centers.*
TBIMS longitudinal follow-up centers:
|Geographic specificity||TBIMS regions||Data Collection|
|Data Collection Mode||Initial intake: in person Follow up: phone/mail|
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|
|Data Access Requirements||Data Use Agreement, No Cost|
|Summary Tables/reports||Data Dictionary: https://www.tbindsc.org/Syllabus.aspx|
Form I: Pre-morbid Questionnaire (Acute and Post-acute Rehabilitation Care)
Form II (follow-up): Rehabilitation Outcomes
Other Model Systems data:
|Other Papers||Studies by TBIMS researchers:
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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.
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