A proposed bill to create a pediatric research network cites Duchenne MD and SMA as examples of diseases where research is making great strides
In July, days before the U.S. House of Representatives and Senate went into recess, bipartisan legislation was introduced in both houses to strengthen research into pediatric diseases.
The National Pediatric Research Network Act (S. 3461 and H.R. 6163) is an effort to coordinate and strengthen existing pediatric disease research and create a federally funded "hub-and-spoke" clinical research infrastructure.
In six decades of funding neuromuscular disease research, MDA has found that teaming on research efforts and sharing findings across diseases and across institutions helps make strides for all diseases, said Annie Kennedy, MDA senior vice president of advocacy. MDA also has learned that pairing top-flight research with a clinic infrastructure is the most efficient way to reach individuals affected by these diseases.
MDA is especially gratified that in selecting the pediatric disorders that are well-positioned to benefit from such enhanced therapeutic opportunities, two neuromuscular disease communities served by MDA were cited as examples: Duchenne muscular dystrophy (DMD) and spinal muscular atrophy (SMA).
“There exists much potential on the horizon for life-altering therapeutic breakthroughs within the pediatric neuromuscular disease community,” Kennedy said. “We’re gratified that Congress recognizes the importance of capitalizing on this intense research momentum and establishing a strategic clinical trial infrastructure.”
The National Pediatric Research Network Act was introduced in the Senate by Senator Sherrod Brown (D-Ohio), along with bipartisan co-sponsors: Senators Roger Wicker (R-Miss.), Mark Begich (D-Alaska), Richard Blumenthal (D-Conn.), John Kerry (D-Mass.) and Sheldon Whitehouse (D-R.I.). Representative Cathy McMorris Rodgers (R-Wash.) introduced the bill in the House, with Representatives Lois Capps (D-Calif.), Diana DeGette (D-Colo.), Gregg Harper (R-Miss.) and Peter T. King (R-N.Y.) as co-sponsors.