Children’s Hospital-Led Pediatric Research Network Set to Join New National Clinical Research Network

12/20/2013

Philadelphia, Dec. 20, 2013 – A network of children’s hospitals, data partners, and specialty networks led by The Children’s Hospital of Philadelphia was recently approved for an award from the Patient-Centered Outcomes Research Institute (PCORI) to develop and expand its work as part of PCORnet: the National Patient-Centered National Clinical Research Network. PEDSnet, A National Pediatric Learning Health System, was one of 28 multi-institutional and patient-powered research networks approved for a total of $93.5 million from PCORI on December 17 to form this new national resource that aims to boost the efficiency of health research.

PEDSnet combines a clinical data research network — including eight of the nation’s largest children’s hospital systems — with three condition-specific networks and two national data partners. Led by The Children’s Hospital of Philadelphia, 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.

The Children’s Hospital of Philadelphia’s Christopher Forrest, M.D., Ph.D., 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. Focused on comparative effectiveness research (CER), PCORI is “is authorized by Congress to conduct research to provide information about the best available evidence to help patients and their health care providers make more informed decisions,” according to the PCORI website. Since it began funding CER in 2012, PCORI has awarded a total of $464.4 million.

PCORnet will be a secure, national data network that will improve the speed, efficiency, and use of patient-centered CER, PCORI says. By integrating data available in the individual networks, PCORnet aims to provide access to a large amount of diverse, nationally representative health information that can support a range of study designs. 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.

Moreover, by enabling researchers and patients, clinicians, to interact directly and jointly determine research priorities, such as the selection specific studies to support, PCORnet aims to advance the shift in clinical research from investigator-driven to patient-centered studies.

“The Children’s Hospital of Philadelphia is thrilled to lend its efforts to PCORnet,” said Philip R. Johnson, M.D., chief scientific officer and executive vice president of CHOP Research. “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.”

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.

“We are pleased that PEDSnet will be part of this exciting initiative to build the data structures needed to significantly enhance the speed and efficiency of patient-centered comparative effectiveness research,” said PCORI Executive Director Joe Selby. “The process to select the awardees was very competitive and PEDSnet demonstrated it has the expertise, resources, and commitment to engaging patients and other stakeholders to be an excellent fit in PCORnet.”

About PCORI: 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.

About The Children’s Hospital of Philadelphia: The Children’s Hospital of Philadelphia was founded in 1855 as the nation’s first pediatric hospital. Through its long-standing commitment to providing exceptional patient care, training new generations of pediatric healthcare professionals and pioneering major research initiatives, Children’s Hospital has fostered many discoveries that have benefited children worldwide. Its pediatric research program receives the highest amount of National Institutes of Health funding among all U.S. children’s hospitals. In addition, its unique family-centered care and public service programs have brought the 535-bed hospital recognition as a leading advocate for children and adolescents. For more information, visit http://www.chop.edu.

Contact: Dana Weidig
The Children’s Hospital of Philadelphia
Phone: (267) 426-6092
weidigd@email.chop.edu