School and hospital team to help create national pediatric research network


Washington University School of Medicine
in St. Louis and St. Louis Children’s Hospital together are part of a new multi-institutional project that aims to create a national pediatric “learning health system” that will feature an extensive clinical data research network.

The Patient-Centered Outcomes Research Institute (PCORI) awarded nearly $7 million on Dec. 17 to institutions involved in forming the pediatric-specific learning health system (LHS) and the clinical data research network (CDRN). PCORI, a nonprofit organization authorized by Congress, funds research that provides patients, caregivers and clinicians evidence-based information to allow for informed health-care decisions.

A learning health system involves patients, families, clinicians and researchers who work together with the goal of providing information to help patients and families make informed decisions with their health-care teams. The LHS now comprising Washington University and St. Louis Children’s Hospital also includes seven other of the nation’s largest children’s hospital health systems: Children’s Hospital of Philadelphia; Cincinnati Children’s Hospital Medical Center; Children’s Hospital Colorado in Aurora, Colo.; Delaware-based Nemours Children’s Health System; Nationwide Children’s Hospital in Columbus, Ohio; Seattle Children’s Hospital; and Boston Children’s Hospital.

Christopher B. Forrest, MD, PhD, of Children’s Hospital of Philadelphia, is the project’s principal investigator, and the clinical data research network (CDRN) the eight health systems will create is called PEDSnet.

PEDSnet will have three condition-specific “patient-powered research networks” focused on pediatric inflammatory bowel disease, childhood obesity and hypoplastic left heart syndrome, a serious congenital heart condition. PEDSnet also will have two national data partners: Express Scripts and IMS Health, the latter a data-analytics company.

“I am excited that we will have the opportunity to create a child-health-specific network of networks that includes St. Louis Children’s Hospital, other children’s hospitals and specialty networks that can be used to transform research and quality improvement,” said Feliciano “Pele” Yu Jr., MD, the project’s principal investigator at Washington University/St. Louis Children’s, the hospital’s chief medical information officer, and an associate professor of pediatrics at Washington University.

PEDSnet will be one of several clinical research data networks in an ambitious new resource known as the National Patient-Centered Clinical Research Network, or PCORnet. PCORI — which approved a total of $93.5 million for the multifaceted project — envisions PCORnet as a secure, national data network that will improve the speed, efficiency and use of patient-centered comparative effectiveness research.

“Conducting health research efficiently and effectively requires data that is accessible, usable and protects patients’ privacy and security,” PCORI Executive Director Joe Selby, MD, said in a news release. “We intend PCORnet to be a national resource — a collaborative, interoperable and secure ‘network of networks’ — that serves both the scientific and patient communities. The essential difference between PCORnet and previous research networks is the critical involvement of health-care systems, clinicians and patients in governing and using the network resources.”

Washington University School of Medicine’s 2,100 employed and volunteer faculty physicians also are the medical staff of Barnes-Jewish and St. Louis Children’s hospitals. The School of Medicine is one of the leading medical research, teaching and patient-care institutions in the nation, currently ranked sixth in the nation by U.S. News & World Report. Through its affiliations with Barnes-Jewish and St. Louis Children’s hospitals, the School of Medicine is linked to BJC HealthCare.

Founded in 1879, St. Louis Children’s Hospital is one of the premier children’s hospitals in the United States. It serves not just the children of St. Louis but children across the world. The hospital provides a full range of pediatric services to the St. Louis metropolitan area and a primary service region covering six states. As the pediatric teaching hospital for Washington University School of Medicine, the hospital offers nationally recognized programs for physician training and research.

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health-care decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work.