Developing a Traumatic Brain Injury Registry: Lessons Learned from Difficulties

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Aim: The aim of present article is to share our experiences and lessons learned from a pilot study which was conducted to collect data to serve as a model in establishing a multi-center registry on traumatic brain injury patients.

Methods: The present study was conducted from December 2013 to June 2014 in the Department of Neurosurgery and Department of Accident and Emergency Medicine. All patients with the diagnosis of traumatic brain injury (as per the criteria laid by International Classification of Disease injury codes ICD 10) were enrolled in the study. Variables were identified as per the international norms and the data points were selected which included demographic details, pre-hospital characteristics, clinical details in emergency room, injury details, course during hospital stay, treatment and disposition. The data were categorized into master data, data related to pre-hospital events including pre-hospital care, data related to emergency room care offered in the emergency department, data related to hospital stay and patient course, outcome and follow up.

Results: A total of 231 patients were admitted with the diagnosis of traumatic brain injury. There were 79.1% male and 20.5% female patients. Mean age was 37.19 years (SD±17.02 years, range 4-87 years). Mean hospital stay was 3.66 days (SD±4.46 days, range-1-21 days). Data were collected daily for all the admitted patients on previous day fulfilling the inclusion criteria. The Proforma was easy to comprehend and it was easy to fill.

Conclusion: We found that a well-designed Proforma based under supervision data collection in a relatively low volume trauma center. We found that a well-designed Proforma based under supervision data collection in a relatively low volume trauma center and at regular intervals can be costeffective which can be managed by personnel with basic training.

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