Mining Minds: Implementing a Concussion Registry in a Tertiary Care Clinic

Background: Hundreds of thousands of Canadians experience a concussion each year. The Public Health Agency of Canada estimates the associated costs at over $150 million a year. This paper examines how a registry for concussions serves as a proactive measure to reduce the burden of concussion research and improve patient flow through an outpatient clinic. Methods: : The Traumatic Brain Injury Registry Database (TBIRD) collects data at the initial clinic visit and enters consenting patients’ information into a secure database. The data collected are internationally accepted Common Data Elements (CDEs). Enabling systematic standardized characterizations of the concussion injury history, social determinants of health and current symptoms. Results: : Over 350 participants to date, 58.5% are female, 41.4% male. The most common mechanism of injury is transportation-related at 57.1%. The mean age of participants was 44 (SD15). Conclusions: : This registry is an effective method of recruiting participants for future research within the hospital and broader studies. It provides researchers with a set of patients willing to help further understand concussions and reduces patient burden caused by multiple research teams approaching individuals. The lessons learned are applicable to other clinics to help develop a standardized and patient-friendly approach to concussion research to improve care.