Information Regarding the TBI Model Systems NDSC for Researchers

How to obtain a dataset from the TBIMS

The National Data and Statistical Center has a standard operating procedure (SOP) for obtaining a copy of the dataset. All researchers interested in obtaining a copy of the dataset should familiarize themselves with the content of the National Database (NDB). Information about the individual variables that are currently in the NDB can be found on this web site under the heading "Data Dictionary". The following SOP contains additional information on the inclusion and exclusion criteria used to determine eligibility for enrollment and participation in the NDB.

  DA001 - Identification of Subjects

There are two types of requests for the NDB: internal and external. Internal requests are made by the currently-funded TBIMS Centers or the TBIMS Longitudinal Follow-Up Centers. External requests are made from persons who are not affiliated with the TBIMS. As noted in the SOP, external requestors can request an extract from the full NDB that will be tailored to their study, or a completely de-identified public use dataset that can be used for any purpose, including student projects. To make a request for data, please follow the instructions in the SOP below called Access to the TBIMS National Database. Additionally, requestors must complete the relevant form below for internal, external, or public use requests. Researchers should also consult the Current and Past Notifications PDF below so that their request does not duplicate past or ongoing studies using the NDB.

  Publications using the TBI Model Systems National Database 1993-present
  Current and Past Notifications
  DS001 - Access to the TBIMS National Database

Internal

  DS101F - Internal TBIMS NDB Request and DUA FORM

External

External requests are made from persons who are not affiliated with the TBIMS

The External and Public Use databases differ as follows:

  1. The External Database requires a brief proposal, has an approval process, and encourages collaboration with TBIMS researchers
  2. The Public Use Database includes no HIPAA-defined identifiers, and there is an embargo on the usage of the most recent two years of data; there is no review process to obtain the Public Use Database

  DS201F - External TBIMS NDB Request and DUA FORM
  DS301F - Public Use TBIMS NDB Request and DUA FORM
  On-line Public Use Data Request and Use Agreement Form

Analytic Resources

Training Series


Statistical Webinars


Statistical Whitepapers

Interactive Tools

Links to interactive tools used to describe the database at an individual level using significant baseline covariates are provided below. Development and proper usage of these tools may be achieved by referencing their corresponding articles where respective citations are provided below.

Medical Conditions and Functional Outcome / Life Satisfaction IGC Trajectory Tool

Malec JF, Ketchum JM, Hammond FM, Corrigan JD, Dams-OʼConnor K, Hart T, Novack T, Dahdah M, Whiteneck GG, Bogner J. Longitudinal Effects of Medical Comorbidities on Functional Outcome and Life Satisfaction After Traumatic Brain Injury: An Individual Growth Curve Analysis of NIDILRR Traumatic Brain Injury Model System Data. J Head Trauma Rehabil. 2019 Sep/Oct;34(5):E24-E35. doi: 10.1097/HTR.0000000000000459. PMID: 30829813; PMCID: PMC6711835.

  Long Term IGC Tool
Functional Outcomes IGC Trajectory Tool

Dams-O'Connor K, Ketchum JM, Cuthbert JP, Corrigan JD, Hammond FM, Haarbauer-Krupa J, Kowalski RG, Miller AC. Functional Outcome Trajectories Following Inpatient Rehabilitation for TBI in the United States: A NIDILRR TBIMS and CDC Interagency Collaboration. J Head Trauma Rehabil. 2020 Mar/Apr;35(2):127-139. doi: 10.1097/HTR.0000000000000484. PMID: 31033744; PMCID: PMC6814509.

  Functional Outcomes IGC Trajectory Tool
GOSE/DRS Death

Dams-O’Connor, K., Pretz, C., Billah, T., Hammond, F. M., & Harrison-Felix, C. (2015). Global outcome trajectories after TBI among survivors and nonsurvivors: a National Institute on Disability and Rehabilitation Research Traumatic Brain Injury Model Systems study. The Journal of head trauma rehabilitation, 30(4), E1.

  DRS Death
  GOS-E Death
DRS Interactive Tool Link

Pretz CR, Malec J, Hammond F, (2013) Longitudinal Description of the Disability Rating Scale for Individuals in the National Institute on Disability and Rehabilitation Research Traumatic Brain Injury Model Systems National Database. Archives of Physical Medicine and Rehabilitation, Vol. 94, Issue 12, p2478–2485

  DRS Forecast
GOSE Interactive Tool Link

Pretz CR & Dams-O’Connor K. (2013) Longitudinal Description of the Glasgow Outcome Scale-Extended for Individuals in the Traumatic Brain Injury Model Systems National Database: A National Institute on Disability and Rehabilitation Research Traumatic Brain Injury Model Systems Study. Archives of Physical Medicine and Rehabilitation, Vol. 94, Issue 12, p2486–2493

  GOS-E Forecast
Employment Interactive Tool Link

Cuthbert, J. P., Pretz, C. R., Bushnik, T., Fraser, R. T., Hart, T., Kolakowsky-Hayner, S. A., ... & Sherer, M. (2015). Ten-year employment patterns of working age individuals after moderate to severe traumatic brain injury: A national institute on disability and rehabilitation research traumatic brain injury model systems study. Archives of physical medicine and rehabilitation, 96(12), 2128-2136.

  Employment IGC