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A $7 million dollar grant will help Nemours partner with some of the largest children’s health systems in the nation with a goal of transforming pediatric health care and children's health across the United States. The Patient Centered Outcomes Research Institute (PCORI) just announced the award to Nemours and seven other children’s health systems to develop an infrastructure that enables all participating systems to easily collaborate on producing new and better research into treatments for childhood illness and disease. Nemours was the only health system in the southeast selected to participate in this network.
The eight health systems will be joined by three “patient-powered” condition-specific networks and two national data partners. The collaboration, known as PEDSnet, provides services to 2.1 million children per year (2.8% of the nation's children), providing a large and diverse population for conducting pediatric research and a range of study designs.
PEDSnet is comprised of:
- Boston Children’s Hospital
- Cincinnati Children’s Hospital Medical Center
- Children’s Hospital Colorado
- Nationwide Children’s Hospital
- Seattle Children’s Hospital
- St. Louis Children’s Hospital
- The Children’s Hospital of Philadelphia (project lead)
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.
“Nemours is thrilled to join forces with other leading children’s hospitals in the country in this important work”, said Terri H. Finkel, MD, PhD, Chief Scientific Officer and Chair of Pediatrics at Nemours Children’s Hospital. “This is our ‘moon shot’ for changing the course of pediatric healthcare in America. Nemours and PEDSnet are poised to achieve the best health outcomes and satisfaction for all children, by harnessing the power of a nation of pediatric caregivers working hand-in-hand with our patient families.”
Over the next 18 months, this new national children’s hospital 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.
The Nemours team is lead by principal investigator David Milov, M.D., Chief Medical Information Officer at Nemours and Associate Professor of Pediatrics at University of Central Florida College of Medicine. “This ‘infrastructure of the future’ will be a powerful tool to take on many of the greatest challenges facing children’s healthcare”, said Dr. Milov. “It’s a big day for kids.”
The team includes key collaborators and partners across the Nemours Children’s Health System:
- Dr. Tim Wysocki
- Dr. Terri Finkel
- Dr. David West
- Dr. Sandra Hassink (president-elect of the American Academy of Pediatrics)
- Dr. James Franciosi
- Dr. Fernando del Rosario
- Ana-Maria Schwindt (parent lead of the Family Advisory Council at Nemours Children’s Hospital)
The network will reduce the time and effort needed to launch new studies and focus research on questions and outcomes especially useful to patients and those who care for them. It aims to advance the shift in clinical research from investigator-driven to patient-centered studies.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit 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. More information is available at www.pcori.org.