Integrating Traumatic Brain Injury Model Systems Data into the Federal Interagency Traumatic Brain Injury Research Informatics System


STUDY PROFILE

Craig Hospital
10.23718/FITBIR/1506069
BRICS System
Sep 29, 2017 12:00:00 AM
Other
FITBIR
Sep 21, 2020 4:19:47 PM

Study Abstract

Background: Since 1989, the Traumatic Brain Injury (TBI) Model System (TBIMS) Program has enrolled over 12,000 adults with moderate to severe TBI in a National Database (NDB) and collected longitudinal follow-up data at 1, 2, 5, 10, 15, 20, and 25 years post injury. The Federal Interagency TBI Research (FITBIR) Informatics System has been established to accelerate TBI research by operationalizing precise definitions of common data elements (CDEs) selected for consistent use in TBI research, and to serve as a repository for housing CDEs and other variables collected across the many TBI research studies. Objective: The ultimate objective of this project is to incorporate data from the TBIMS NDB into FITBIR for easy access and linking to other TBI studies by the TBI research community. Specific Aims: The specific aims of this proposed one year project are to evaluate: 1) the compatibility of the data sharing policies and procedures between the TBIMS and FITBIR, 2) the exact crosswalk between the TBIMS NDB and the TBI CDEs implemented by FITBIR, 3) the degree to which TBIMS variables can be converted to FITBIR CDEs, aliases, and new data elements, and these variables formatted in existing published or new FITBIR data forms, 4) the feasibility of downloading a de-identified version of the current TBIMS NDB to FITBIR, 5) the feasibility of adding the FITBIR Global Unique Indentifier (GUID) over time as new and existing patients are contacted for data collection, and 6) the feasibility of prospectively collecting more CDEs that are not currently variables in the TBIMS NDB by a sample of current TBI Model Systems. Study Design: Project aims 1 and 2 will be accomplished by staff at the TBIMS National Data and Statistical Center (TBINDSC) reviewing policy documents and variable definitions established by both TBIMS and FITBIR; aims 3 and 4 will involve TBINDSC staff following and implementing the detailed protocols for preparing and submitting data to FITBIR; and aims 5 and 6 will require the TBINDSC staff managing the consent and data collection process at the TBIMS Centers to test implementation of the GUID and new CDEs. Relevance: The TBIMS NDB is the oldest and largest longitudinal TBI database with valuable information describing the natural course of TBI recovery and the trajectories of long-term outcomes. Incorporating these data into FITBIR would expedite its access by the broader TBI research community for research planning and comparative purposes, thereby facilitating the mission of FITBIR to accelerate TBI research.

Study Aims

Goals for this study are not available

Study Forms


Intended Form Structures
Actual Form Structures

Publications

Publications for this study are not available