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National Pediatric Research Network Act of 2012

Floor Speech

Location: Washington, DC


Mrs. McMORRIS RODGERS. Mr. Speaker, I thank the chairman. I thank my colleague and friend, Representative Lois Capps, and rise today in strong support of this legislation, H.R. 6163, the National Pediatric Research Network Act, which is going to build on America's commitment to pediatric medical research.

That commitment has already led to the prevention and treatment of terrible conditions such as polio, meningitis, childhood leukemia, congenital heart disease. With budgets being squeezed like no time in recent memory, it has never been more important to support projects which leverage every single dollar.

Research networks have a proven track record in their ability to ensure collaboration and the sharing of resources which, in turn, have led to medical discoveries that have improved lives.

For example, the National Cancer Institute-funded Children's Oncology Group has advanced our understanding and treatment of childhood cancers, and this group has resulted in a cure for some types of childhood leukemia. The Pediatric Heart Network has improved the outcome for children born with congenital heart disease.

I am proud to have introduced this legislation with my colleague, Representative Capps. This legislation is going to authorize NIH to establish up to 20 pediatric research networks across this country, and each network will be selected by NIH through a competitive review process. These networks will allow multiple institutions to work together in a ``hub and spoke'' fashion to encourage collaboration.

Some of those networks will focus on rare diseases such as spinal muscular atrophy. Other networks will focus on the genetic diseases that have their onset in childhood, including Fragile X and Down Syndrome.

It's important to develop a framework for these rare and genetic diseases for a number of reasons. First of all, researchers in these areas are often working in isolation, and this legislation is going to help overcome that barrier. Secondly, there are not many children with these disorders in one place, so it makes it difficult to connect the researchers to those that want to participate in the studies.

Finally, the study of these rare and genetic diseases may lead to treatments that will help many people. For example, we've learned that there is a specific biological link between Down Syndrome and Alzheimer's disease. It's conceivable that the research that can result in the improvement in cognition in Down Syndrome could also prevent the loss of cognition that is seen in Alzheimer's.

These pediatric networks will improve health outcomes for children and adults by encouraging teamwork among the researchers, the patients, and NIH. This is important and positive legislation. I'm proud to support it, and I urge my colleagues to support it.


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