Leveraging Health Information Exchange to Construct a Registry for Traumatic Brain Injury, Spinal Cord Injury and Stroke in Indiana

Abstract

Traumatic brain injury (TBI), spinal cord injury (SCI) and stroke are conditions of interest to public health as they can result in long-term outcomes and disabilities. Specialized registries can facilitate public health surveillance, however only 4% of hospitals in the United States actively engage in electronic reporting to these registries. We leveraged electronic claims and clinical data from a health information exchange to create a statewide TBI/SCI/Stroke registry to facilitate the study of long-term outcomes and health services utilization. The registry contains 109,943 TBI patients, 9,027 SCI patients and 117,084 stroke patients with a mean of 3 years of follow-up data after injury. Additionally, the registry contains data on individual patient encounters, prescriptions and clinical variables. The high-dimensional data with large sample sizes may present a valuable informatics resource for injury research as well as public health surveillance.