Capps' Pediatric Research Bill Passes Senate

Press Release

Today, Rep. Lois Capps (CA-24) applauded the Senate's passage of the PREEMIE Reauthorization Act (S. 252/H.R. 541), which included the National Pediatric Research Network Act (NPRNA) - a bill authored by Capps - as an amendment. The House passed this version of the PREEMIE Act earlier in the week, and the bill will now go to the President's desk for his signature.

The NPRNA authorizes the National Institutes of Health (NIH) to facilitate the creation of pediatric research consortia focused on pediatric diseases, with a special emphasis on rare diseases like spinal muscular atrophy (SMA). The bipartisan bill will help increase and coordinate research activities, disseminate research results quickly, prepare a new generation of pediatric research experts, and accelerate the development of clinical trials to treat rare pediatric diseases. By creating multi-site consortia more children will be able to participate in research without the same geographic hurdles that they face today.

Earlier this year, Capps introduced the bill with her Republican colleague Rep. Cathy McMorris Rodgers (WA-5).

This bill will increase coordination and improve pediatric research -- especially research of rare and complex diseases -- while developing new treatments to fight them," Capps said. "Children have unique health care experiences, treatment needs, and research challenges; and while public and private research has come a long way on pediatric diseases over the years, we know that we are still far behind on important diagnostics, cures, and treatments for far too many ailing children. We see the importance in legislation like this right here at home, where our neighbors Bill and Victoria Strong work every day to make their daughter, Gwendolyn's life a little better as she grows up with SMA. We owe it to the Strongs and to every parent to do what we can to find treatments and cures for illnesses in children."

"As parents of a child with spinal muscular atrophy (SMA) and as advocates of the SMA cause, we are absolutely thrilled that the House and Senate passed the National Pediatric Research Network Act (NPRNA)," said Bill Strong, Co-founder, Gwendolyn Strong Foundation. "Thank you to Congresswoman Lois Capps and her staff for their tireless work on this bill and for continuing to champion pediatric health, and specifically pediatric rare disease research, on Capitol Hill. The NPRNA will create an environment to foster critical research of pediatric rare diseases. And with a number of promising research programs headed to human clinical trials in the coming years the NPRNA couldn't come at a more opportune time for conditions like SMA, the leading genetic killer of young children."

The House of Representatives passed the National Pediatric Research Network twice in the 112th Congress, first as a standalone piece of legislation, and again as part of the PREEMIE Act. However, the House and Senate were unable to come to an agreement on a final bill. With Senate passage the bill will now be sent to the President's desk to sign into law.

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