PEDSnet’s guiding purpose is to improve child health through knowledge production that is efficient (produced faster at less cost) and meaningful (useful to patients, caregivers, clinicians, and health system leaders). Led by the Children’s Hospital of Philadelphia (CHOP), PEDSnet is the only PCORnet Clinical Research Network (CRN) focused exclusively on improving child health and pediatric health system performance. The network is composed of 10 of the nation’s leading children’s hospital health systems:
- Children’s Hospital of Philadelphia,
- Cincinnati Children’s Hospital Medical Center,
- Children’s National Hospital,
- Children’s Hospital Colorado,
- Lurie Children’s Hospital,
- Nemours Children’s Hospital- Delaware, and Nemours Children’s Hospital- Florida,
- Nationwide Children’s Hospital,
- Seattle Children’s Hospital,
- Stanford Children’s Health, and
- Texas Children’s Hospital.
These institutions have developed the largest pediatric-specific electronic health record database in the nation, comprising data for 14,097,043 children in all 50 states. PEDSnet has the ability to conduct research studies using existing data only, and can also use those data to identify children eligible for clinical trials and other studies involving patient recruitment.
Data Network
The PEDSnet data network is centralized with data managed by its Coordinating Center. Data are pulled from each institution’s EHR system, converted to a common format, and then uploaded for further evaluation and modification. To ensure accuracy of its data, PEDSnet runs a robust data quality program that includes numerous types of data quality assessments and the ability for institutional teams to fix problems when they are detected. PEDSnet provides informatics leadership to PCORnet and is represented on all its data-related working groups. PEDSnet has very large groups of patients with rare diseases, which are commonly diagnosed during childhood (70% have a pediatric onset) and frequently require specialized pediatric care in children’s hospitals.
Governance and Operations
PEDSnet is governed by a Steering Committee and Research and Data Subcommittees; and an Executive Committee that oversees all day-to-day network operations. Each committee includes institutional scientists (10 in total) and three parents. PEDSnet has conducted nearly 200 research studies to date and has been awarded over $175 million dollars in research grant funds. PEDSnet has participated in or led all PCORnet Demonstration and Designated studies that included children or pediatric providers. PEDSnet is dedicated to ensuring the success of PCORnet, and looks forward to collaborating on making PCORnet stronger, more efficient, and more impactful. For Phase 4, PEDSnet is creating a new position called “Parent Partner Lead,” a role that will fully participate as a member of the network leadership team and governance committees.
Engagement
PEDSnet has extensive engagement of clinicians (physicians, nurses, behavioral health clinicians, and others) and health system executives (C-suite executives, Department Chairs, Chief Science/Research Officers). The network has an Engagement Core with Family Advisory and Youth Advisory Councils, which provide a variety of consultation, training, and support services to research team and to parents and youth participating on research teams. In addition to the establishment of the Engagement Core, PEDSnet re-organized its governance structure to fully incorporate the voices of parents in every aspect of network leadership and decision-making.
Staffing and Organizational Capacity
Drs. Forrest and Bailey, both MD/PhDs, are the PIs for PEDSnet. They co-lead its Coordinating Center, are co-located at CHOP, and have a 15-year history of collaborating. Forrest brings over 25 years of health services and outcomes research experience, and Bailey over 20 years of experience in informatics. Parent Co-Investigator Melissa Bronson is located at Children’s Hospital Colorado, and has been a member of PEDSnet since 2023. There are 170 individuals across the network who are participating in PEDSnet governance and operations. Each member institution includes scientific, informatics, and project management leadership. The PEDSnet Coordinating Center includes effort from 20 individuals who are responsible for network operations and managing the data network.
Dissemination and Resource Sharing
PEDSnet is grounded in open-science principles, which are central to its guiding purpose, governance, and network operations. Research, technical, governance, and engagement resources are made freely and widely available. Distribution channels include sharing with PCORnet CRNs via the PCORnet Commons, sharing materials on its web site (pedsnet.org), software sharing on GitHub, distribution of newsletters, rapid publication of study results, and direct to patient return of results for specific studies.