Last week, President Obama signed into law the National Pediatric Research Network Act. The Children’s Hospital of Philadelphia and other leading children’s hospitals making up the Coalition for Pediatric Medical Research lobbied Congress over a number of years to pass legislation that creates multi-institution pediatric research networks throughout the United States.
The network seeks to strengthen the National Institutes of Health commitment to pediatric biomedical research by authorizing the NIH to develop a network of pediatric research consortia. Each consortium would be comprised of multiple research institutions in a “hub and spoke” arrangement, would be investigator-initiated, and would be competitively selected via the NIH peer review process.
The bipartisan and bicameral legislation, sponsored by Senators Sherrod Brown (D-OH) and Roger Wicker (R-MS) and Representatives Cathy McMorris Rodgers (R-WA) and Lois Capps (D-CA), passed the House of Representatives by unanimous voice vote as part of the three-bill PREEMIE package on November 12, and cleared the Senate by unanimous consent on November 14. It was signed into law by President Obama on November 27, 2013.
The following is a summary of the final network provision enacted into law:
- Authorizes NIH, through the Eunice Kennedy Shriver National Institute for Child Health and Human Development and in collaboration with other Institutes and Centers as appropriate, to establish a National Pediatric Research Network to more effectively support pediatric research and optimize the use of federal research funds.
- Funding can be used to support basic, clinical, behavioral, or translational research as well as training of researchers to address unmet pediatric research needs.
- An appropriate number of awards would go to consortia working on pediatric rare diseases or conditions or birth defects and conducting clinical trials of potential therapies for pediatric rare diseases or conditions.
- Each consortium shall be comprised of multiple institutions, be coordinated by a lead institution, and agree to rapidly and efficiently disseminate research findings.
- Funding allocated to consortia must supplement and not supplant other funding, and award periods cannot exceed five years but may be extended at the discretion of the director of NIH.
- Consortia may also provide assistance to the Centers for Disease Control and Prevention (CDC) on pediatric registries and other surveillance systems if the CDC requests such assistance.
CHOP thanks all of the Congressional champions and supporters of this important legislation.