PEDSnet, a patient-centered clinical data research network led by The Children’s Hospital of Philadelphia, received $8.6 million in funding to continue its discovery and implementation of new ways to provide the best care and outcomes for children.
The three-year grant from the Patient-Centered Outcomes Research Institute (PCORI), an independent nonprofit organization based in Washington, D.C., allows the 1-year-old PEDSnet to embark on phase two of a project to create a sustainable pediatric clinical research infrastructure. It aims to integrate data available from eight of the nation’s largest children’s hospital systems with three condition-specific networks and two national data partners.
Most pediatric disorders are rare diseases, so no single pediatric institution usually has enough patients to generate large numbers of study participants. Providing access to diverse, nationally representative health information from millions of children will facilitate a range of study designs and reduce the time and effort needed to launch new studies and accelerate scientific knowledge.
“With our first phase of funding, PEDSnet developed infrastructure for rapid learning with observational studies and clinical trials,” said CHOP’s Christopher Forrest, MD, PhD, who is the principal investigator of PEDSnet and a professor of Pediatrics at the Perelman School of Medicine at the University of Pennsylvania. “This second phase of funding will enable PEDSnet to reach a high level of operational excellence, ultimately moving into a sustainable research network that advances children’s health through faster and cheaper clinical research.”
Some of the goals for phase two include adding natural language processing expertise for the data coordinating center to use in developing computable phenotypes and outcome measures. The PEDSnet investigators also will strengthen the engagement of parents and clinicians throughout the network to ensure that concerns important to families are research priorities.
Linking data from PEDSnet’s national data partners and regional health plans will allow for the creation of a cohort of patients with complete data available through PEDSnet’s electronic health record data resource. PEDSnet is comprised of The Children’s Hospital of Philadelphia, Cincinnati Children’s Hospital Medical Center, Children’s Hospital Colorado, Nemour’s Children’s Health System, Nationwide Children’s Hospital, St. Louis Children’s Hospital, Seattle Children’s Hospital, and Boston Children’s Hospital. The specialty networks include the National Pediatric Cardiology Improvement Collaborative (hypoplastic left heart syndrome), ImproveCareNow (inflammatory bowel disease), and Healthy Weight Network (childhood obesity). The data partners are Express Scripts and the health analytics company IMS Health.
PEDSnet is one of 10 other clinical data research networks under the umbrella of PCORnet: the National Patient-Centered National Clinical Research Network. During the phase one development stage, the individual systems worked to standardize their data and develop policies governing data sharing, security, and collaboration.