Traumatic Brain Injury Registry: Sharing the Pilot Study Experience to Foster a Multicenter Project on Traumatic Brain Injury Core Data

Background Trauma registry (TR) has been globally recognized as one of the vital tool in bridging the gap of information. The concept of TR has been extended to traumatic brain injuries (TBIs) in our study. Objectives Present study was conducted to identify core variables necessary to collect data on the sociodemographics, clinical courses, interventions, and outcomes of TBIs and to develop an electronic data entry interface (including web-based data record interface). Methods A predesigned pro forma with guidelines to complete the questionnaire was used to collect the data maintaining uniformity and reproducibility. The details of TBI pilot study questionnaire and data collection procedure (which included emergency assessment, patient characterization, preclinical data, emergency room intervention details, intensive care unit management details, diagnosis, and follow-up) were structured indigenously. Results A total of 402 patients were included in this study. The mean age was 37.34 +/- 16.08 years (male 78.11% and female 21.89%) and fairly good amount of details were available for the majority of the variables. In addition to the previously described variables, many other variables are proposed to be added to the further study which include handedness (right/left/ambidexterity), primary caregiver-responsible for earning in family, management-related variables (hypothermia therapy, nutrition replacement, hyperventilation therapy, and seizure prophylaxis), and details of complications (hypotension episode, hypoxia episode, any infections, and deep vein thrombosis). Disability rating scale was being added to make data collection and follow-up more objective and comparable. Conclusion We hope and believe that this study will provide a cost effective, yet comprehensive data collection system on different parameters encompassing TBIs including configuration of existing care in our country.