Project Summary

PEDSnet is a Pediatric Learning Health System Clinical Research Network. It is a partnership of eight freestanding children’s hospitals across the United States and is led by the Children’s Hospital of Philadelphia. The network is committed to building a nationally representative pediatric disease cohort and committed to improving children’s health through the conduct of patient-centered outcomes research. PEDSnet is advancing more complete and comprehensive data sets for research by linking its clinical data to complementary data sources, such as pediatric disease registries and insurance claims data. This provides a more complete picture of patients’ healthcare experience and is essential in narrowing the knowledge gap in pediatric health research.

PEDSnet is governed by a Steering Committee comprising senior investigators at each of the participating institutions as well as parent partners. The Steering Committee provides strategic insight to the network’s operations and growth and makes decisions regarding participation in research studies. Several workgroups provide recommendations to and inform the work of the Steering Committee:

  • The Data Workgroup oversees the network’s data infrastructure, including the data pipeline and data quality program; develops and maintains the extract-transform-load algorithms; and makes recommendations on changes to the PEDSnet common data model
  • The Regulatory Workgroup focuses on standardization of data governance and human subjects research oversight
  • The Engagement Workgroup develops strategies for stakeholder engagement throughout the research process

PEDSnet’s governance structure supports the network’s core principle of stakeholder engagement throughout the entirety of the research process with a focus on partnerships with patients, clinicians, and health system leaders. The pediatric patient voice is often vocalized through their parents, who are seen as equal partners in research and hold seats on the Steering Committee and the workgroups.  These governing bodies allow patients/parents to advise the production of research and propose novel research questions. Parents also often serve as investigators for PEDSnet-led research studies.

PCORnet is intended to serve as a national resource for conducting rapid, efficient, patient-centered observational and interventional randomized research that improves healthcare delivery and health outcomes. Over the course of this project period PEDSnet will enhance and optimize its infrastructure to support a variety of patient-centered studies by:

  • Ensuring meaningful engagement of patients, caregivers, clinicians, delivery systems, payors, and researchers in all phases of the research process
  • Operating through a network model in which data remains at the source while allowing approved researchers within and outside the network to access it securely through a central point
  • Facilitating the public sharing of resources and reusable tools to make research more efficient and reproducible
  • Using the PCORnet CDM, which standardizes the data collected when patients receive care so that it is comparable across health systems and can be used for patient-centered outcomes research
  • Using streamlined processes such as one central IRB for studies involving multiple systems and standardized data use agreements, to enable research to be quicker and more efficient
Title A Pediatric Learning Health System (PEDSnet)
Network Design Clinical Research Network
Lead Partner Children’s Hospital of Philadelphia
Other Partners Children’s Hospital Colorado
Cincinnati Children’s Hospital Medical Center
Nationwide Children’s Hospital
Nemours Children’s Health System (Nemours/Alfred I. duPont Hospital for Children and Nemours Children’s Hospital)
St. Louis Children’s Hospital
Seattle Children’s Hospital
Network Website Pedsnet.org

About PCORnet® Clinical Research Networks (CRNs)

PCORI funded the development of PCORnet®, the National Patient-Centered Clinical Research Network, to make it easier and more efficient to conduct research. PCORnet is made up of Partner Networks that harness the power of large amounts of health data and patient partnerships. Clinical Research Networks (CRNs) are one type of network supported by PCORI. CRNs consist of two or more healthcare systems, including hospitals, integrated delivery systems, and federally qualified health centers. Each CRN transforms data gathered from routine patient care across its participating health systems to a consistent format, the Common Data Model (CDM), to enable rapid response to research-related questions.

More About This PCORnet: Clinical Research Network (CRN) 2020

Project Information

Christopher B. Forrest, MD, PhD
Children's Hospital of Philadelphia
$3,866,569

Key Dates

10 months
December 2021
2020

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Last updated: November 23, 2021