Chapter 1 Common Data Elements and Federal Interagency Traumatic Brain Injury Research Informatics System for TBI Research

Abstract

Despite increased attention to traumatic brain injury (TBI), there remains no specific treatment and available interventions focus rather on the prevention of secondary injury. One of the reasons posited for the lack of a successful therapy is the amalgamation of various types of injuries under the same severity category in clinical trials. Informatics approaches have been suggested as a means to develop an improved classification system for TBI. As a result of federal interagency efforts, common data elements (CDEs) for TBI have now been developed. Further, the Federal Interagency Traumatic Brain Injury Research Informatics System (FITBIR) has been created and is now available for TBI researchers to both add and retrieve data. This chapter will discuss the goals, development, and evolution of the CDEs and FITBIR and discuss how these tools can be used to support TBI research. A specific exemplar using the CDEs and lessons learned from working with the CDEs and FITBIR are included to aid future researchers.

FIGURE 1.1

Conceptual model tested in the AIm:TBI study with associated common data elements. Note. ISS = Injury Severity Score; GCS = Glasgow Coma Scale; RPQ = Rivermead Post-concussion questionnaire; BSI-18 = Brief Symptom Inventory-18; GOS-E = Glasgow Outcome Scale-Extended; FIM = Functional Independence Measure; SF-36 = MOS Short Form-36; SWLS = Satisfaction with Life Scale.