[Congressional Record (Bound Edition), Volume 159 (2013), Part 13]
[Senate]
[Page 19486]
[From the U.S. Government Publishing Office, www.gpo.gov]




                NATIONAL PEDIATRIC RESEARCH NETWORK ACT

  Mr. 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 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.

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