A Neuro-Informatics Pipeline to Support a Learning Healthcare System For Populations with Cerebrovascular Disease: Rationale and Design for a Registry Across an 8-Hospital Tertiary Healthcare System in The Greater Houston Metropolitan Area (Preprint)

BACKGROUND While stroke is well recognized as a critical disease, current treatment options are limited or absent depending on stroke subtype. Inpatient stroke encounters carry critical information that can be used to investigate the mechanisms of stroke and patient outcomes, however, this data is stored in forms designed to support administrative functions instead of research. To support improvements in stroke patient care and treatment, a substantive research data platform is needed. OBJECTIVE To our role as a Learning Healthcare System and improve research across ischemic and hemorrhagic stroke subtypes, we seek to a comprehensive research repository of stroke data using the Houston Methodist Electronic Health Record (EHR) system. METHODS Dedicated processes have been developed to import data from patients with primary acute ischemic stroke, intracerebral hemorrhage, transient ischemic attack, and subarachnoid hemorrhage from the EHR under an IRB-approved protocol. Developed Extract, Transform, Load (ETL) processes convert EHR data to enable cross-sectional and longitudinal research efforts. Imaging data from patient encounters are withdrawn to assess cortical characteristics and small vessel disease. Patient information needed to interface with other local and national databases are retained. Patient outreach has been developed to assess functional outcomes at 30-, 90-, 180, and 365-days after discharge. Dashboards have been developed to provide investigators with data summaries to support access. RESULTS As of June 2022, the database contains 18,061 total patients, including 1,810 intracerebral hemorrhage patients, 13,444 acute ischemic stroke patients, 1,215 subarachnoid hemorrhage, patients, and 3,168 transient ischemic attack patients. Imaging data from CT is available on 96.1-98.6% of patients, with MRI available on 52.7-89.9%. Outcomes assessment has been able to contact 56.0% of post-stroke patients, with 71.3% of responders providing consent for assessment. CONCLUSIONS A highly curated, clinically-focused research platform for stroke data will establish a foundation for future research that can fundamentally improve patient care and outcomes after stroke.