Our Work and Focus

Since forming in the mid-2000s, the Coalition has actively engaged on a wide array of research policy issues. This includes both legislation as well as executive branch/agency operations and policies supported by the National Institutes of Health (NIH). Following are issues the Coalition has worked on over its 15-year lifespan.

• Drove enactment of legislation into law, known as the National Pediatric Research Network Act (PL 113-55), to enhance funding for pediatric medical research activities.
• Engaged with Congress and the Office of the Director at the NIH on the reconstitution of the National Children’s Study, now known as the Environmental Influences on Child Health Outcome (ECHO) project.
• Actively engaged with the office of then-Vice President Biden on pediatric priorities within the Cancer Moonshot initiative as well as with the Trump Administration on its pediatric research activities.
• Supported making permanent law the policies that require or incent testing of medications in childhood populations to better inform clinician prescribing as well as a law to close a loophole and ensure more cancer medications are evaluated in pediatric populations.
• Ongoing work with Congress and the NIH to advance recruitment of children into the All of Us (precision medicine) Research Program.
• Supported legislation to reauthorize the Pediatric Priority Review (PRV) voucher to encourage companies to develop therapies to treat children even if the economic incentive to do so is modest.
• Advocated for improvements in how the NIH coordinates and prioritizes its pediatric research portfolio, including projects supported by multiple Institutes and Centers, which informed establishment of the NIH Pediatric Research Consortium (N-PeRC).
• Ongoing work to strengthen programs NIH runs to better support early-career researchers, including those from under-represented populations, who are focusing in pediatrics.