Patient-powered Research Networks to Form PCORnet

PEDSnet, a multi-institutional research network led by The Children's Hospital of Philadelphia, received an award from the Patient-Centered Outcomes Research Institute, (PCORI) to form a new national resource that aims to boost the speed, efficiency, and use of comparative effectiveness research.

Christopher Forrest, MD, PhD, serves as the principal investigator of PEDSnet, which is set to combine its efforts with 10 other clinical data research networks in PCORI's new PCORnet: the National Patient-Centered National Clinical Research Network. By enabling researchers, clinicians, and patients to interact directly and jointly determine research priorities, PCORnet will shift clinical research from investigator-driven to patient-centered studies. Integration of data available in the individual networks will allow PCORnet to provide access to a large amount of diverse, nationally representative health information that can support a range of study designs.

"Multidisciplinary collaborations like this, that help researchers share findings and speed investigations, will help move innovative research from the bench to bedside and improve the care of children and families worldwide," said Philip R. Johnson, MD, chief scientific officer and executive vice president of the CHOP Research Institute.

Over the next 18 months, the CHOP-led network will use PCORI funds to expand and improve its systems, work to standardize its data, and be part of the process to develop policies governing data sharing and security and protection of patient privacy.

PEDsnet includes eight of the nation's largest children's hospital systems, three condition-specific networks, and two national data partners. Led by CHOP, PEDSnet is also comprised of 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 and ImproveCareNow, as well as a new childhood obesity network. The data partners are Express Scripts and the health analytics company IMS Health.