The National Pediatric Research Network Act (NPRNA) (H.R 225) originally introduced in the House in 2012 was re-introduced January 14th 2013 by Congresswoman Lois Capps from California along with Congresswoman Cathy McMorris Rodgers from the State of Washington. They were joined by a bipartisan group of four colleagues.
The Eunice Kennedy Shriver National Institute of Child Health and Human Development and other national research institutes and centers would carry out activities involving pediatric research.
The NPRNA would focus primarily on pediatric rare diseases or conditions including genetic disorders such as spinal muscular atrophy and Duchenne muscular dystrophy or conditions related to birth defects such as Down syndrome and fragile X.
Funding may be awarded to help establish NPRNA and provide for grant awards, contracts, or other mechanisms to public or private nonprofit entities. The funding would be used for planning, establishing the program, for strengthening pediatric research, and for training researchers in pediatric research techniques.
The activities of NPRNA would need to be coordinated which means it would be necessary to coordinate the exchange of information. Each consortium receiving an award would need to assist CDC in establishing or expanding patient registries and other surveillance systems.
Reports compiled from the data would need to be submitted in report form to the Director of NIH and the Commissioner of Food and Drugs. Information would need to be submitted on the multisite clinical trials to be conducted and on the development for new approaches to therapies and methods used to diagnose one or more pediatric rare diseases or conditions.
For more information, go to http://thomas.loc.gov.