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senate Bill S. 424

National Pediatric Research Network Act of 2013

bill Progress

  • Not enacted
    The President has not signed this bill
  • The house has not voted
  • The senate has not voted
      senate Committees
      Committee on Health, Education, Labor, and Pensions
    IntroducedFebruary 28th, 2013

Bill Details

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National Pediatric Research Network Act of 2013

Official Title

A bill to amend title IV of the Public Health Service Act to provide for a National Pediatric Research Network, including with respect to pediatric rare diseases or conditions.


National Pediatric Research Network Act of 2013 - Amends the Public Health Service Act to authorize the Director of the National Institutes of Health (NIH), in carrying out the Pediatric Research Initiative, to act through the Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development to provide for the establishment of a National Pediatric Research Network. Authorizes the Director of the Institute to award funding to public or private nonprofit entities for: (1) planning, establishing, or strengthening pediatric research consortia; and (2) providing basic operating support for such consortia, including to meet unmet needs for pediatric research through basic, clinical and behavioral translational research and the training of researchers in pediatric research techniques. Authorizes the Director of NIH to make awards for not more than 20 pediatric research consortia, which must be formed from a collaboration of cooperating institutions, coordinated by a lead institution, agree to disseminate scientific findings, and meet requirements prescribed by the Director of NIH. Allows such support to be for a period of five years, with additional extensions at the discretion of the Director of NIH. Requires the Director of NIH to provide for the coordination of activities among the consortia and to require the periodic preparation and submission of reports on their activities. Requires each pediatric research consortium receiving an award to assist the Centers for Disease Control and Prevention (CDC) in the establishment or expansion of patient registries and other surveillance systems as appropriate and upon request by the CDC. Requires the Director of NIH to ensure that an appropriate number of such awards are awarded to consortia that agree to: (1) focus primarily on pediatric rare diseases or conditions; and (2) conduct or coordinate multi-site clinical trials of therapies for, or approaches to, the prevention, diagnosis, or treatment of pediatric rare diseases or conditions. Requires the Director of NIH to establish a data coordinating center to: (1) distribute such findings; (2) provide assistance in the design and conduct of collaborative research projects and the management, analysis, and storage of data associated with such projects; and (3) organize and conduct multi-site monitoring activities. Requires the Director of NIH to: (1) require the data coordinating center to provide regular reports to the Director of NIH and the Commissioner of Food and Drugs (FDA) on research conducted by consortia, including information on enrollment in clinical trials and the allocation of resources with respect to such research; and (2) incorporate such information into NIH's biennial reports.

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