National Pediatric Research Network Actby Senator Sherrod Brown
Posted on 2013-12-20
BROWN. Madam President, I wish to praise the passage of the
National Pediatric Research Network Act, signed into law by President
Obama on November 27, 2013. I was proud to introduce this bipartisan
legislation along with my colleague and friend Senator Wicker.
I am a longtime supporter of expanded pediatric medical research and, as a member of the House and later of the Senate, have fought to increase funding to carry out these essential efforts. This bipartisan bill promises to build on the important body of work in pediatric research that the National [[Page S9096]] Institutes of Health, NIH, already supports.
This law authorizes the NIH to establish a number of multi- institution consortia conducting high-impact research into the most challenging pediatric issues of our day. These research networks will allow for the participation of multiple institutions through the use of a ``hub and spoke'' arrangement, with one or more central pediatric medical centers collaborating with other supporting sites.
Network applicants can focus on any type of pediatric research agenda, from basic laboratory research through later stage translational research and clinical investigations on a variety of pediatric disorders and diseases.
Importantly, the act will bridge the research gap between pediatric and adult conditions. Only 5 to 10 percent of the NIH's annual research budget is devoted to pediatric research, despite children comprising approximately 20 percent of the U.S. population.
Additionally, this act promises to strengthen our collective focus on pediatric rare diseases or conditions, such as spinal muscular atrophy, muscular dystrophy, Down syndrome, and Fragile X.
We are all aware that the NIH faces tight budgets and that these fiscal challenges are not going away overnight. Thus, Members on both sides of the aisle came together in support of this research model to promote efficiency and the sharing of resources. Modeled after the successful Cancer Centers and other successful networked initiatives, this law reflects the current fiscal climate and seeks to do more with less.
The National Pediatric Research Network Act could not have been enacted without the support of thousands of families, care providers, pediatric researchers and research institutions across the country. I would especially like to thank FightSMA and the Coalition for Pediatric Medical Research for organizing a grassroots effort that led to strong bipartisan support in both houses of Congress, and to Cincinnati Children's Hospital Medical Center, Nationwide Children's Hospital in Columbus, and Akron Children's Hospital for their endorsement and hard work in support of the bill.
The legislation received the strong support of Parent Project Muscular Dystrophy, the Children's Hospital Association, Federation of Pediatric Organizations, Kakkis EveryLife Foundation, National Down Syndrome Society, and the National Organization for Rare Disorders.
Finally, I would like to recognize Madison Reed, a valiant Ohio teenager living with SMA, for sharing her story with me when I visited Nationwide Children's Hospital earlier this year. The National Pediatric Research Network Act has given hope to thousands of families like hers, across Ohio and the country, that collaborative pediatric research will speed knowledge from bench to bedside, allowing young people with medical concerns to lead healthier and fuller lives.