Rep. Cathy McMorris Rodgers (R-WA) and Rep. Lois Capps (D-CA) applauded House passage of their bill, HR 6163, the National Pediatric Research Network Act (NPRNA), last night. The NPRNA would advance research for a variety of pediatric disorders such as Down syndrome and spinal muscular atrophy (SMA).
"As the mom of a child with special needs, I am thrilled the House has passed our bill to increase pediatric disorder research and the quality of that research," said Rep. McMorris Rodgers. "Too often, research into pediatric disorders has lagged behind research into other medical conditions. The time has come to take pediatric research to the next level. Our bill will do that by creating research networks focused on pediatric diseases, giving new hope to the millions who suffer from those conditions and their families. I want to thank my House colleagues -- especially Rep. Capps and Chairman Upton -- and all of our friends in the disabilities community for working to get our bill passed through the House. We hope the Senate will join us and take action soon."
"While partisanship may dominate the headlines, House passage of the National Pediatric Research Network Act is a great example of how we can get things done, and work together to improve children's health," said Rep. Capps. "The bill would go a long way to increasing and improving research on children's illnesses -- especially rare and complex diseases -- and developing new treatments to fight them. Every parent's worst fear is that their child becomes sick, and we owe it to every parent in America to do what we can to fight childhood illnesses. I am hopeful that our bill can be signed into law by the President before the end of the year."
The National Institutes of Health (NIH) uses only about 5 percent of its extramural funds on pediatric research. The NPRNA would authorize NIH to establish up to 20 pediatric research networks throughout the nation. A portion of the networks would focus on rare and genetic diseases, such as SMA, muscular dystrophy, Down syndrome, and Fragile X, which are often difficult to study because of their infrequent occurrence in the population.
The NPRNA is supported by the Children's Hospital Association, the Federation of Pediatric Organizations, Parent Project Muscular Dystrophy, the National Down Syndrome Society, Fight SMA, and other groups.