Pediatric research network holds tremendous promise

A new data network for pediatric research called PEDSnet has John Barnard, president of the Research Institute at Nationwide Children's Hospital, gushing in a column in The Columbus Dispatch.

Eight leading children's hospitals, including the Columbus, Ohio-based Nationwide, have teamed up on the platform, which houses detailed information from electronic health records and other data sources to be used for research. The network provides researchers quick access data on thousands of children with chronic and rare diseases. 

PEDSnet is part of the Patient-Centered Outcomes Research Institute (PCORI) "network of networks" to advance patient-centered clinical research. PCORI recently announced new funding of nearly $142.5 million to expand the range of networks included.

One of the first diseases planned for study is hypoplastic left heart syndrome, according to Barnard. Additionally, he says, the hospitals are in the process of adding prescription information, and also plan to add insurance-claim data and individual genomic information. Patients eventually will also be able to enter their own health information in real time, he says.

"Over a 30-year medical career, few research developments have excited me more than PEDSnet," Barnard writes.

PCORI, a federally funded, nonprofit corporation, is operating in accordance with requirements of the Affordable Care Act, but the lack of a standard data model poses a hindrance to its plans, the Government Accountability Office reported earlier this year.

To learn more:
- read the commentary