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House Passes Updated 21st Century Cures Bill, Giving Boost to NPRNA

FightSMA is pleased to announce that the 21st Century Cures legislation approved by the U.S. House of Representatives today includes a provision to drive forward implementation of the National Pediatric Research Network Act (NPRNA).  The NPRNA, bipartisan legislation signed into law by President Obama in 2013, authorizes the National Institutes of Health (NIH) to establish a network of research consortia that will conduct basic through clinical research on a variety of pediatric disorders, including rare diseases like SMA.

Since enactment of the NPRNA, FightSMA has worked closely with our champions on Capitol Hill -- including House Energy and Commerce Chairman Fred Upton (R-MI), Reps. Cathy McMorris Rodgers (R-WA) and Lois Capps (D-CA), and Senators Roger Wicker (R-MI) and Sherrod Brown (D-OH) – to urge NIH to fund and implement the pediatric research network authorized by the law. 

The current NPRNA law authorizes but does not require the NIH to establish the National Pediatric Research Network.  To ensure a robust implementation of the law, the new language in the 21st Century Cures bill modifies the NPRNA to clarify that NIH “shall establish a National Pediatric Research Network”; “shall award funding, including through grants, contracts, or other mechanisms”; and that support of a research consortium “shall be” for up to five years (this can be extended at the discretion of the Director of NIH).

FightSMA looks forward to working with NIH and our Capitol Hill champions to ensure that the National Pediatric Research Network Act fulfills its promise to benefit the fight against SMA and other rare pediatric disorders by supporting collaborative pediatric research including multi-site clinical trials.