WASHINGTON, D.C. – Today, U.S. Sens. Sherrod Brown (D-OH) and Roger Wicker (R-MS) led a group of 11 senators in requesting that the National Institutes of Health (NIH) and the National Institute of Child Health and Human Development (NICHD) provide an update on their progress implementing the National Pediatric Research Network Act (NPRNA). Signed into law in November 2013, Brown’s and Wicker’s bipartisan legislation will create a more streamlined and efficient system for maximizing pediatric medical research, with an emphasis on rare pediatric diseases.

“Pediatric research institutions and pediatric researchers face real financial challenges in their efforts to combat and cure rare pediatric diseases,” Brown said. “Our law leverages investments into pediatric research through enhanced partnerships and data-sharing among research institutions. We request that the NIH and NICHD share their progress implementing our legislation to ensure that pediatric research is maximized, leading to faster discoveries that help children live healthier, fuller lives.”

Although children make up about 20 percent of the U.S. population, the NIH dedicates only about five to 10 percent of its annual research budget to pediatrics. The NPRNA will ensure that the NIH investment in pediatric research optimizes those resources. Brown and Wicker asked that they be updated on:

  • The status of the NPRNA being implemented and the plans and timetable to solicit pediatric research;
  • How the NICHD plans to work with and learn from the pediatric research community in order to better implement the NPRNA;
  • The estimated funding levels that will be allocated towards implementation of the NPRNA; and
  • The number of consortia that the NIH will establish to focus on rare pediatric diseases.

The National Pediatric Research Network Act is endorsed by the American Academy of Pediatrics, American Board of Pediatrics, American Pediatric Society, Association of Medical School Pediatric Department Chairs, Association of Pediatric Program Directors, Children’s Hospital Association, Coalition for Pediatric Medical Research, Federation of Pediatric Organizations, FightSMA, EveryLife Foundation for Rare Diseases, National Down Syndrome Society, Parent Project Muscular Dystrophy, and Society for Pediatric Research.

Brown continues the fight to ensure the health and wellness of Ohio’s children. In April 2014, President Obama signed into law legislation that reauthorized the Children’s Hospitals Graduate Medical Education (CHGME) payment program. Brown first proposed the CHGME program in his bill, the Children’s Hospitals Education and Research Act of 1998. Brown introduced the legislation when he served as the Ranking Democrat on a key health subcommittee in the U.S. House of Representatives. CHGME ensures continued medical training for professionals treating children and has provided funding to seven Ohio children’s hospitals over the years.

Brown’s letter to the Director of the NIH, Dr. Francis S. Collins; and the Director of the National Institute of Child Health and Human Development, Dr. Alan E. Guttmacher, can be read in its entirety HERE.

 

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