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National Pediatric Research Network Act of 2013

Floor Speech

Location: Washington, DC


Mr. PITTS. Mr. Speaker, I yield myself such time as I may consume.

Mr. Speaker, I rise in support and urge my colleagues to vote for H.R. 225, the National Pediatric Research Network Act of 2013.

Simply put, this legislation will foster important research on diseases that affect children. The bill will allow the National Institutes of Health to establish a national research network compromised of pediatric research consortia. According to NIH, there are between 6,000 and 7,000 diseases considered rare that affect 25 to 30 million people. Most of the approximately 7,000 rare diseases are pediatric diseases and often genetic.

Sadly, there are insufficient therapies for doctors to treat such diseases. The use of pediatric research consortia is a proven way to support pediatric applied research and to promote coordinated research activities that focus on translating research to practice. This will help improve care for children.

As an example, it is important to note that this bill will address some devastating diseases such as spinal muscular atrophy. This is a rare pediatric disease that kills more babies than any other genetic disease. Right now, it is incurable, untreatable, and fatal.

H.R. 225, introduced by Representatives Lois Capps and Cathy McMorris Rodgers, amends the Public Health Service Act so that the director of the NIH, acting through the director of the National Institute of Child Health and Human Development, could provide for the establishment of a national pediatric research network compromised of pediatric research consortia.

The director could award cooperative agreements to those that strengthen and provide basic support to pediatric research consortia and train researchers. Consortia that receive an award would be comprised of cooperating institutions and coordinated by a lead institution. No more than 20 pediatric research consortia could receive awards.

In addition, the Director of NIH would be able to establish a data-coordinating center to support research and distribute scientific findings and provide reports to the Director of the NIH and the Commissioner of the Food and Drug Administration.

The bill would result in no new or increased budget authority, entitlement authority, tax expenditure, or revenues. Nor does the bill contain any earmarks.

So I am pleased to support this legislation. It is my hope that the National Pediatric Research Network will improve our understanding of pediatric diseases, improve treatment and therapies, and provide better health care outcomes for our Nation's children.

I urge my colleagues to vote in favor of H.R. 225, and I reserve the balance of my time.


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