Sara J Deakyne Davies1, Robert W Grundmeier2, Diego A Campos3, Katie L Hayes4, Jamie Bell5, Evaline A Alessandrini6, Lalit Bajaj7, James M Chamberlain4, Marc H Gorelick8, Rene Enriquez5, T Charles Casper5, Beth Scheid6, Marlena Kittick9, J Michael Dean5, Elizabeth R Alpern10. 1. Department of Research Informatics, Children's Hospital Colorado, Aurora, Colorado, United States. 2. Department of Pediatrics and Department of Biomedical and Health Informatics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, United States. 3. Department of Biomedical and Health Informatics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, United States. 4. Department of Pediatrics, Children's National Medical Center, Washington, District of Columbia, United States. 5. Department of Pediatrics, University of Utah, Salt Lake City, Utah, United States. 6. Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States. 7. Department of Pediatrics, University of Colorado and Children's Hospital Colorado, Aurora, Colorado, United States. 8. Department of Pediatrics, Medical College of Wisconsin and Children's Hospital of Wisconsin, Milwaukee Wisconsin, United States. 9. Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, United States. 10. Department of Pediatrics, Northwestern University Feinberg School of Medicine, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois, United States.
Abstract
BACKGROUND: Electronic health record (EHR)-based registries allow for robust data to be derived directly from the patient clinical record and can provide important information about processes of care delivery and patient health outcomes. METHODS: A data dictionary, and subsequent data model, were developed describing EHR data sources to include all processes of care within the emergency department (ED). ED visit data were deidentified and XML files were created and submitted to a central data coordinating center for inclusion in the registry. Automated data quality control occurred prior to submission through an application created for this project. Data quality reports were created for manual data quality review. RESULTS: The Pediatric Emergency Care Applied Research Network (PECARN) Registry, representing four hospital systems and seven EDs, demonstrates that ED data from disparate health systems and EHR vendors can be harmonized for use in a single registry with a common data model. The current PECARN Registry represents data from 2,019,461 pediatric ED visits, 894,503 distinct patients, more than 12.5 million narrative reports, and 12,469,754 laboratory tests and continues to accrue data monthly. CONCLUSION: The Registry is a robust harmonized clinical registry that includes data from diverse patients, sites, and EHR vendors derived via data extraction, deidentification, and secure submission to a central data coordinating center. The data provided may be used for benchmarking, clinical quality improvement, and comparative effectiveness research. Schattauer.
BACKGROUND: Electronic health record (EHR)-based registries allow for robust data to be derived directly from the patient clinical record and can provide important information about processes of care delivery and patient health outcomes. METHODS: A data dictionary, and subsequent data model, were developed describing EHR data sources to include all processes of care within the emergency department (ED). ED visit data were deidentified and XML files were created and submitted to a central data coordinating center for inclusion in the registry. Automated data quality control occurred prior to submission through an application created for this project. Data quality reports were created for manual data quality review. RESULTS: The Pediatric Emergency Care Applied Research Network (PECARN) Registry, representing four hospital systems and seven EDs, demonstrates that ED data from disparate health systems and EHR vendors can be harmonized for use in a single registry with a common data model. The current PECARN Registry represents data from 2,019,461 pediatric ED visits, 894,503 distinct patients, more than 12.5 million narrative reports, and 12,469,754 laboratory tests and continues to accrue data monthly. CONCLUSION: The Registry is a robust harmonized clinical registry that includes data from diverse patients, sites, and EHR vendors derived via data extraction, deidentification, and secure submission to a central data coordinating center. The data provided may be used for benchmarking, clinical quality improvement, and comparative effectiveness research. Schattauer.
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