How to Obtain a Dataset from the TBIMS

The method for obtaining a dataset from the TBI Model Systems (TBIMS) National Database (NDB) depends on whether you are a researcher (either internal to the TBIMS or external from it) or a member of the general public (such as a student) and what set of data you are interested in. Data requests are also referred to as “study notifications” or just “notifications.” These terms are synonymous and may be used interchangeably below. For complete details on accessing the TBIMS NDB, please consult Standard Operating Procedure (SOP) DS001 – Access to the TBIMS National Database .

  DS001 - Access to the TBIMS National Database

All those interested in obtaining a copy of the dataset should familiarize themselves with the content of the NDB. Information about current and archived NDB variables is contained in the Data Dictionary, which can be launched from the menu on the left of this website. Additionally, SOP DA001 – Identification of Subjects contains information on the inclusion and exclusion criteria used to determine eligibility for enrollment and participation in the NDB.

  DA001 - Identification of Subjects

Lastly, researchers should consult the Current and Past Notifications list so that their request does not duplicate past or ongoing studies using the NDB.

External Data Request

External data requests can be made by all staff, students, and other related personnel at an institution that has a NIDILRR-funded TBIMS Center or Follow-up Center, but who are not involved in the TBIMS Center or Follow-up Center at that institution; this would include previously funded TBIMS Centers that are no longer funded and no longer collecting follow-up data. The scientific community at large and the general public are also considered External Researchers.

There is a difference, however, between the general public and other External Researchers. The dataset that is publicly available is completely deidentified and does not contain the most recent two years’ worth of data.

If an External Researcher would like a dataset that includes elements of a limited dataset (e.g., any dates or geographic locations smaller than a state) and/or data through the present, they should fill out DS201F - External TBIMS NDB Request and DUA FORM . Please contact the NDSC at tbimsdata@craighospital.org with questions.

  DS201F - External TBIMS NDB Request and DUA FORM

If an External Researcher is a member of the general public and is satisfied with the publicly available dataset, they should fill out the online form available at the link below. Please the form to the NDSC at tbimsdata@craighospital.org with questions.

  Public Use TBIMS NDB Request and DUA FORM
Download the Public Use Dataset

One final way of obtaining TBIMS NDB data is to request it through the Federal Interagency Traumatic Brain Injury Research (FITBIR) informatics system. FITBIR was developed to share data across the entire TBI research field, which requires common data definitions and standards. See the FITBIR website (https://fitbir.nih.gov/) for complete information on FITBIR’s purpose and methodology, including access requirements.

Analytic Resources

Training Series


Webinars


Whitepapers


Interactive and Other Tools

Public Use Data Explorer

Below are links to dynamically look at the data currently collected by the TBIMS. The data is part of the public use data set, and contains key variables from Form 1 (data collected at the time of injury or hospitalization) or Form 2 (data collected at followup years 1,2,5 and every 5 years after).

The Explorer will give you the opportunity to graph up to 3 factors and will allow you to look at the data graphically, descriptively, as well as export the data elements yourself.