About PCEN

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Kidney disease in children is uncommon, making it difficult to identify an adequate number of children with specific disorders and to recruit for clinical trials. Additionally, methods to clinically phenotype children with kidney disease in terms of growth, development, nutritional issues, cardiovascular disease risk factors, and bone and mineral disorders often vary from study to study, and quality control is variable. CHOP PCEN's Cores allow researchers to directly address these challenges to trial new therapies for children with kidney disease.

Chronic kidney disease is associated with progressive disturbances in growth and maturation, bone accrual and quality, nutritional status, and cardiovascular health. A critical need exists for validated strategies to prevent and treat these complications, optimize growth and development, and improve long-term outcomes for this high-risk population. The Clinical Phenotyping Core leverages the resources of CHOP’s Clinical and Translational Research Center and state-of-the-art methods for assessing bone quality, body composition, bionutrition, and vascular health.

The goals of the Clinical Phenotyping Core are to provide expert consultation to investigators on clinical phenotyping protocols for observational studies and clinical trials in childhood kidney diseases; facilitate the implementation of clinical research through access to state-of-the-art and comprehensive core resources for assessment of growth and nutrition, body composition, bone quality, and cardiovascular health; and contribute to the expansion and generation of robust sources of normative longitudinal data for clinical phenotyping measures.

Core Services:

  • Anthropometric growth assessment
  • Body composition
  • Whole body dual-energy x-ray absorptiometry (DXA)
  • Air displacement plethysmography
  • Multi-frequency bioelectrical impedance analysis (BIA)
  • Bone health assessment
  • DXA areal bone mineral density and content at multiple anatomic sites
  • Peripheral quantitative computed tomography (pQCT) measures of volumetric bone mineral density
  • Second generation high-resolution pQCT (XCTII) measures of bone microarchitecture and micro-finite element analysis estimates of bone strength (failure load) that are highly correlated with ex vivo biomechanical testing.
  • Micro-finite element analysis (μFEA)
  • Muscle strength measures
  • Dynamometry
  • Hand-grip dynamometry
  • Force plate jump mechanography
  • Cardiovascular profling
  • Pulse wave velocity/analysis
  • Carotid intima-media thickness
  • Endothelial peripheral arterial tone (EndoPAT)
  • Ambulatory blood pressure monitoring
  • Echocardiography
  • Dietary assessment
  • Food records
  • Dietary recalls
  • Study meals
  • Resting energy expenditure (REE)

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 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 accomplished in partnership with PEDSnet, a national multispecialty 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 Learning Health System 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:

  • Data science consultation
  • Methodological consultation on design and analysis
  • Access to Pediatric Nephrology Data Resource