607 - The PECARN PED Screen Registry: Advancing the study of acute pediatric disease through harmonized EHR Data

Poster Number: 607
Publication Number: 607.32

Elizabeth Alpern, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States; Norma-Jean E. Simon, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States; LALIT BAJAJ, University of Colorado, Denver, CO, United States; Fran Balamuth, Perelman School of Medicine at the University of Pennsylvania, Philadephia, PA, United States; James Chamberlain, Children's National Health System, Washington, DC, United States; Diego A. Campos, Childrens Hospital of Philadelphia, Philadelphia, PA, United States; Lawrence J. Cook, University of Utah, Salt Lake City, UT, United States; Sara Deakyne Davies, Children's Hospital Colorado, Denver, CO, United States; Holly Depinet, Cincinnati Childrens Hospital Medical Center, Cincinnati, oh 45229, OH, United States; Cara L. Elsholz, University of Utah, SALT LAKE CITY, UT, United States; Brent Hulsey, University of Utah School of Medicine, Las Vegas, NV, United States; Jennifer Sadlowski, Children's Hospital Colorado, Aurora, CO, United States; Halden F. Scott, University of Colorado School of Medicine, Aurora, CO, United States; Michael Webb, Biostatistics/research, Salt Lake City, UT, United States; Robert W. Grundmeier, Children's Hospital of Philadelphia, PHILADELPHIA, PA, United States

Background: Electronic health record (EHR) registries allow for robust data derivation from patient clinical records and can be leveraged to study care processes and patient outcomes within and across hospital systems. An EHR registry, with analytical methods to automate clinical outcomes, can be utilized to identify risk factors, facilitate diagnosis, evaluate therapeutics, and improve health equity.

Objective: We discuss the creation of a multicenter, pediatric emergency and inpatient care EHR registry and describe the population of pediatric visits, data elements available for analysis, and broader application and use for the study of pediatric disease.

Design/Methods: The PED Screen Registry builds upon a previously established registry within the Pediatric Emergency Care Applied Research Network (PECARN). Participating pediatric sites developed a list of candidate variables and a harmonized data dictionary using the test-case of pediatric sepsis and organ dysfunction. Elements incorporated the entire duration of the emergency department visit and inpatient admission including the domains of: patient demographics; previous medical history, timing of care; vital signs, clinical assessments, medications (hospital and discharge) orders (nursing, respiratory support, consults); laboratory and microbiology results; providers; narrative clinical notes; radiology reports; pathology reports; diagnosis and procedure codes, and admission and discharge data. The registry comprises patient visits presenting to the pediatric emergency department (ED) between January 2016 through December 2022.

Results: Data from over 3.2 million ED visits and 1.2 million patients were centralized by five hospital systems, including 5 pediatric quaternary EDs and 3 secondary locations (Table 1). The median age at ED presentation was 9 years; 16% of visits were severe (ESI 1 or 2) and 12% resulted in admission. Patients were predominantly non-Hispanic (76%), White (35%) or Black (38%), and English speaking (69%). Counts of observations available within clinical domains are reported in Table 2 with over 33 million (M) medication administrations, 71M lab results, and 92M vital signs.

Conclusion(s): EHR registries are a rich source of clinical data with the potential to inform patient identification strategies and determine clinically relevant outcomes required to evaluate and improve pediatric conditions. Leveraging pediatric registries, health services researchers have an opportunity to investigate risk factors for disease, relationships between diagnostic and therapeutic interventions, and outcomes in heterogeneous patient populations.