One of the critical barriers to studying childhood kidney disease is the lack of a national interconnected, multi-institutional infrastructure able to reach adequate numbers of affected children and provide the depth of information necessary to characterize their kidney disease. The Learning Health System Core of the PCEN will formally establish a Pediatric Nephrology Learning Network to address fundamental questions of clinical effectiveness of therapies for children and their families. This will be done by partnership with PEDSnet, a national multi-specialty collaboration across eight pediatric academic health systems. PEDSnet currently includes eight member health systems (CHOP, Cincinnati Children’s Hospital, Children’s Hospital Colorado, Nemours Children’s Health System, Nationwide Children’s, St. Louis Children’s, Seattle Children’s, and Children’s Hospital Boston), and has forged relationships with disease- and specialty-specific networks, health plans, and national data partners such as ExpressScripts and IMS Health. PEDSnet has harmonized the diverse electronic health record systems of participating institutions to assemble a longitudinal data resource that currently comprises more than five million children across 23 states.
The PCEN LHS Core will extend PEDSnet resources to construct, maintain, and mediate access to structured data as part of a new Pediatric Nephrology Database Resource; develop capacity to address unstructured data elements in the Database Resource through knowledge extraction from pediatric kidney biopsy reports; and share technical and methodological resources for use of PEDSnet data across the research development continuum.
Core services include:
- Data science consultation
- Methodological consultation on design and analysis
- Access to Pediatric Nephrology Data Resource