![]() ![]() ![]() 1–3 A learning health system (LHS) integrates clinical studies done in routine care settings, leverages structured data capture at every encounter, and incorporates quality improvement methods to implement advances in new knowledge and care delivery, with active and meaningful patient participation. Most pediatric chronic conditions are rare diseases, requiring multi-institutional research networks to conduct research and learn how variations in clinical practice affect pediatric health outcomes. 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. 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 a clinical data research network that provides the infrastructure to support a national pediatric LHS. 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. 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.
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