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Senate Passes Updated 21st Century Cures Bill

Legislation to boost National Pediatric Research Network Act now goes to the president for approval

FightSMA is thrilled to announce that the Senate has approved the 21st Century Cures Act, including a provision to drive forward implementation of the National Pediatric Research Network Act (NPRNA).  The bill will now make its way to President Obama’s desk for his expected signature.  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.
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).
Since enactment of the NPRNA three years ago, 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. 
With the Cures language on its way to becoming law, FightSMA looks forward to working with all of our Congressional champions and the NIH 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.