National Pediatric Research Network Actby Senator Roger F. Wicker
Posted on 2013-12-19
WICKER. Mr. President, I wish to celebrate the passage of the
National Pediatric Research Network Act, a bipartisan piece of
legislation that was signed into law last month.
I wish to thank my colleague, Senator Sherrod Brown, for his leadership on this issue. I was pleased to work with him on this important initiative in the previous two Congresses.
The National Pediatric Research Network Act expands and enhances our Nation's commitment to pediatric research by providing the infrastructure that is needed to advance the field for decades to come. To do so, the law includes training and support for early-career investigators and authorizes the National Institutes of Health to select a number of competitive pediatric research consortia. Each consortium, comprised of multiple institutions, will focus on specific, high-impact pediatric research, including basic, translational, and clinical investigations.
In addition, the law specifically states that a subset of the consortia must focus primarily on pediatric rare diseases. Participating institutions are encouraged to coordinate with multi-site clinical trials of pediatric patient populations. This will provide needed support for the families of children suffering from rare diseases, such as Duchenne muscular dystrophy, the most common fatal genetic disorder diagnosed in childhood, and spinal muscular atrophy, the leading genetic killer of children under the age of 2.
The National Pediatric Research Network Act's collaborative approach allows us to rethink and improve the way pediatric research is conducted. Shared resources among pediatric institutions help maximize the government's return on investment and avoid duplication. Rather than allocating additional funds at the taxpayers' expense, the law seeks to accelerate treatments for pediatric diseases by emphasizing collaboration and the efficient use of limited Federal resources.
I wish to thank the many families and organizations in Mississippi and across the country that helped build the bipartisan support necessary for passage of this bill, including Children's Healthcare of Mississippi, FightSMA, Parent Project Muscular Dystrophy, the Coalition for Pediatric Medical Research, Children's Hospital Association, National Organization for Rare Disorders, National Down Syndrome Society, the Federation of Pediatric Organizations, and the Kakkis EveryLife Foundation.
Simply put, this law will result in an improved and coordinated NIH pediatric research investment. This effort will help children across our Nation overcome numerous devastating diseases and conditions. I look forward to working with my colleagues to ensure the timely and effective implementation of this law, and I will continue to fight for the health and well-being of our children.