The FITBIR data dictionary incorporates and extends the Common Data Element (CDE) definitions developed by the NINDS (National Institute of Neurological Disorders and Stroke) CDE Workgroup. The data dictionary also allows investigators to define the data they submit as well as provide alternate terms (aliasing) and translation rules for the same element. Importantly, the FITBIR data dictionary provides those who access the data with clear and precise information about what it is they are accessing.
It is essential to have clearly defined and accurate information within the data dictionary, because the data that exists in FITBIR also exists in research labs and other data repositories. A well-defined data dictionary helps support the research community's vision of collaboration.
COMMON DATA ELEMENTS
Under the auspices of the NINDS, Working Groups (WG) composed of domestic and international neuroscience experts develop disease-specific Common Data Elements (CDEs). In this process, clinicians and investigators with disease-specific expertise are responsible for the development and vetting of the CDEs while the NINDS supervises and disseminates the resulting CDE products.
FITBIR contains the most recent versions of the CDEs. For more information about the CDE WG, please refer to the NINDS TBI Common Data Elements website.
EXTENDING THE DATA DICTIONARY
Occasionally, research data may not align perfectly to the CDEs. In this case, researchers may extend the data dictionary.
To extend the data dictionary, researchers must first create a FITBIR account and be granted access to the data dictionary tool. However, both published form structures and published data elements (CDEs and data elements) are accessible without the need to sign-up or have an account registered with FITBIR.