Project Summary
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 eight of the nation’s leading children’s hospital health systems:
- Children's Hospital of Philadelphia
- Cincinnati Children’s Hospital Medical Center
- Children's Hospital Colorado
- Lurie Children’s Hospital
- Nemours Children’s Health System
- Nationwide Children’s Hospital
- Seattle Children’s Hospital
- Stanford Children’s Health
These institutions have developed the largest pediatric-specific electronic health record database in the nation, comprising data for 7,240,314 children who reside primarily in 12 states (PA, DE, NJ, MD, FL, OH, KY, IN, IL, CO, CA, WA). About one-third of this population is seen annually, representing 3.6 percent of all US children. These data have been used in 91 studies funded with over $80 million in grants and contracts. PEDSnet has the ability to conduct research studies using existing data only, but it has also used 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 state-of-the-art 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 workgroups. As a demonstration of its scale and organization, PEDSnet rapidly responded to the COVID-19 pandemic by developing within three weeks quick turnaround analyses of viral testing and infection, leading to the publication of the largest to-date study on SARS-CoV-2 infection in US children. PEDSnet has very large groups of patients with rare diseases, which are commonly diagnosed during childhood (70 percent have a pediatric onset) and frequently require specialized pediatric care in children’s hospitals. Within the PEDSnet database, there are over 400,000 patients with intellectual and developmental disabilities, which is one of PCORI’s legislatively mandated priority conditions.
Governance and Operations
PEDSnet is governed by a Steering Committee and Research and Data Subcommittees. Each committee includes one institutional scientist (total of eight) and three parents. Sixteen parents are embedded in network governance and operations. Leadership for research studies has been provided by 32 unique medical institutions of which 24 were outside PEDSnet. PEDSnet has participated in or led all PCORnet Demonstration and Designated studies that included children or pediatric providers. For Phase 3, PEDSnet is expanding the number of parents involved in its network governance and operations, adding a Youth Council, conducting psychological safety training with its network teams, adding an evaluation of the effectiveness of its engagement efforts, and conducting five stakeholder-informed research prioritization activities for PCORI Strategic Priorities.
Investigators and Environment
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 12-year history of collaborating. Forrest brings 25 years of health services and outcomes research experience, and Bailey 20 years of experience in informatics. There are 117 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 12 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 website (pedsnet.org), software sharing on GitHub, distribution of newsletters, rapid publication of study results, and direct-to-patient return of results for specific studies.
MMM-IDD Capacity Building Project
Summary
This project received additional funding in 2022 to support infrastructure capacity building to facilitate patient-centered outcomes research aligned with two PCORI priority research areas: Maternal Morbidity and Mortality (MMM) and Intellectual and Developmental Disabilities (IDD).
PCORI funds patient-centered outcomes research (PCOR), a type of comparative clinical effectiveness research (CER) that focuses on outcomes that matter to patients, their caregivers, and their families. As part of PCORI’s reauthorization in December of 2019, Congress included two new research priority areas: maternal morbidity and mortality (MMM) and individuals with intellectual and developmental disabilities (IDD).
The goal of this project is to strengthen the capacity of PCORnet®, the National Patient-Centered Clinical Research Network’s infrastructure to facilitate PCOR focused on these two priority areas by:
- Developing MMM and IDD research agendas focused on CER questions which the PCORnet® infrastructure and resources are well- suited to address,
- Identifying national experts in IDD and MMM who are affiliated with PCORnet partner organizations to inform understanding of PCORnet strengths and potential limitations to address PCORI’s strategic priorities, and
- Identifying potential gaps in existing PCORnet capacity (e.g., data resources) needed to address high-priority IDD/MMM PCOR questions.
Enhancement Award Amount: $78,859
PCORnet® Expansion
This project received additional funding in 2023 to expand participation in PCORnet® with the aim of achieving a network representing the full diversity of the general US population. The PCORnet® Expansion initiative aligns with the Strategies to Leverage PCORnet to Advance PCORI’s National Priorities for Health and Evaluate PCORnet Performance approved by PCORI’s Board of Governors in September 2022.
PCORI funds patient-centered comparative clinical effectiveness research (CER) that focuses on outcomes that matter to patients, their caregivers and their families. The goal of this initiative is to strengthen the capacity of PCORnet to facilitate CER by accelerating participation of diverse, underrepresented and underserved populations in PCORnet® Studies, network governance and operations. The funding will support expansion of the PEDSnet Clinical Research Network (CRN) by developing and implementing operational, data, research and engagement infrastructure at Baylor College of Medicine/Texas Children's Hospital and Children's Research Institute/Children's National Hospital.
Baylor College of Medicine/Texas Children's Hospital is a leader in providing care for children with rare disease and serves large Hispanic/Latino patient populations.
Children's Research Institute/Children's National Hospital will expand the PEDSnet CRN’s reach across Washington, D.C., and Virginia, where it serves large Black/African American patient populations.
Enhancement Award Amount: $498,398
Project Information
Key Dates
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.