title: PEDSnet: a National Pediatric Learning Health System.
abstract: A learning health system (LHS) integrates research done in routine care settings, structured data capture during every encounter, and quality improvement processes to rapidly implement advances in new knowledge, all with active and meaningful patient participation. While disease-specific pediatric LHSs have shown tremendous impact on improved clinical outcomes, a national digital architecture to rapidly implement LHSs across multiple pediatric conditions does not exist. PEDSnet is a clinical data research network that provides the infrastructure to support a national pediatric LHS. A consortium consisting of PEDSnet, which includes eight academic medical centers, two existing disease-specific pediatric networks, and two national data partners form the initial partners in the National Pediatric Learning Health System (NPLHS). PEDSnet is implementing a flexible dual data architecture that incorporates two widely used data models and national terminology standards to support multi-institutional data integration, cohort discovery, and advanced analytics that enable rapid learning.
authors.affiliation: Department of Pediatrics, Children's Hospital of Philadelphia and Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
authors.forename: Christopher B
authors.initials: CB
authors.lastname: Forrest
authors.affiliation: Department of Pediatrics, The Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA.
authors.forename: Peter A
authors.initials: PA
authors.lastname: Margolis
authors.affiliation: Department of Pediatrics, Children's Hospital of Philadelphia and Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
authors.forename: L Charles
authors.initials: LC
authors.lastname: Bailey
authors.affiliation: Department of Pediatrics, Division of Biomedical Informatics, Cincinnati Children's Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA.
authors.forename: Keith
authors.initials: K
authors.lastname: Marsolo
authors.affiliation: Seattle Children's Hospital, Seattle, Washington, USA Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington, USA.
authors.forename: Mark A
authors.initials: MA
authors.lastname: Del Beccaro
authors.affiliation: Division of General Pediatrics, Boston Children's Hospital, Boston, Massachusetts, USA Department of Population Medicine, Harvard Medical School and Harvard Pilgrim Health Care Institute, Boston, Massachusetts, USA.
authors.forename: Jonathan A
authors.initials: JA
authors.lastname: Finkelstein
authors.affiliation: Nemours Children's Hospital and the College of Medicine, University of Central Florida, Orlando, Florida, USA.
authors.forename: David E
authors.initials: DE
authors.lastname: Milov
authors.affiliation: Battelle Center for Mathematical Medicine, The Research Institute at Nationwide Children's Hospital and Departments of Pediatrics and Statistics, The Ohio State University, Columbus, Ohio, USA.
authors.forename: Veronica J
authors.initials: VJ
authors.lastname: Vieland
authors.affiliation: Department of Pediatrics, Children's Hospital of Philadelphia and Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA Department of Pathology and Laboratory Medicine, Children's Hospital of Philadelphia and Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
authors.forename: Bryan A
authors.initials: BA
authors.lastname: Wolf
authors.affiliation: Department of Pediatrics, St. Louis Children's Hospital, Washington University School of Medicine, St. Louis, Missouri, USA.
authors.forename: Feliciano B
authors.initials: FB
authors.lastname: Yu
authors.affiliation: Department of Pediatrics, Children's Hospital Colorado, University of Colorado and the Colorado Clinical and Translational Sciences Institute, Aurora, Colorado, USA.
authors.forename: Michael G
authors.initials: MG
authors.lastname: Kahn
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D003195:Computer Communication Networks; D057286:Electronic Health Records / Q000592:standards; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D033181:Information Dissemination; D008297:Male; D008498:Medical Record Linkage; D017063:Outcome Assessment, Health Care / Q000458:organization & administration*; D018802:Patient-Centered Care; D010372:Pediatrics / Q000193:education; D014481:United States; D018875:Vocabulary, Controlled; D055815:Young Adult
keywords: comparative effectivness research; data sharing; distributed databases; hypoplastic left heart syndrome; inflammatory bowel diseases; obesity