[Congressional Bills 113th Congress]
[From the U.S. Government Publishing Office]
[S. 424 Introduced in Senate (IS)]

113th CONGRESS
  1st Session
                                 S. 424

  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.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                           February 28, 2013

  Mr. Brown (for himself, Mr. Wicker, Mr. Blumenthal, Mr. Blunt, Ms. 
  Collins, Mr. Portman, and Mr. Whitehouse) introduced the following 
  bill; which was read twice and referred to the Committee on Health, 
                     Education, Labor, and Pensions

_______________________________________________________________________

                                 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.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``National Pediatric Research Network 
Act of 2013''.

SEC. 2. NATIONAL PEDIATRIC RESEARCH NETWORK.

    Section 409D of the Public Health Service Act (42 U.S.C. 284h; 
relating to the Pediatric Research Initiative) is amended--
            (1) by redesignating subsection (d) as subsection (f); and
            (2) by inserting after subsection (c) the following:
    ``(d) National Pediatric Research Network.--
            ``(1) Network.--In carrying out the Initiative, the 
        Director of NIH, in consultation with the Director of the 
        Eunice Kennedy Shriver National Institute of Child Health and 
        Human Development and in collaboration with other appropriate 
        national research institutes and national centers that carry 
        out activities involving pediatric research, may provide for 
        the establishment of a National Pediatric Research Network 
        consisting of the pediatric research consortia receiving awards 
        under paragraph (2).
            ``(2) Pediatric research consortia.--
                    ``(A) In general.--The Director of NIH may award 
                funding, including through grants, contracts or other 
                mechanisms, to public or private nonprofit entities--
                            ``(i) for establishing or strengthening 
                        pediatric research consortia; and
                            ``(ii) for providing support for such 
                        consortia, including with respect to--
                                    ``(I) basic, clinical, behavioral, 
                                or translational research to meet unmet 
                                pediatric research needs; and
                                    ``(II) training researchers in 
                                pediatric research techniques in order 
                                to address unmet pediatric research 
                                needs.
                    ``(B) Research.--The Director of NIH may ensure 
                that--
                            ``(i) each consortium receiving an award 
                        under subparagraph (A) conducts or supports at 
                        least one category of research described in 
                        subparagraph (A)(ii)(I) and collectively such 
                        consortia conduct or support all such 
                        categories of research; and
                            ``(ii) one or more such consortia provide 
                        training described in subparagraph (A)(ii)(II).
                    ``(C) Number of consortia.--The Director of NIH may 
                make awards under this paragraph for not more than 8 
                pediatric research consortia, with a minimum of one 
                pediatric research consortium that prioritizes 
                collaboration with institutions serving rural areas.
                    ``(D) Organization of consortium.--Each consortium 
                receiving an award under subparagraph (A) shall--
                            ``(i) be formed from a collaboration of 
                        cooperating institutions;
                            ``(ii) be coordinated by a lead 
                        institution; and
                            ``(iii) meet such requirements as may be 
                        prescribed by the Director of NIH.
                    ``(E) Supplement, not supplant.--Any support 
                received by a consortium under subparagraph (A) shall 
                be used to supplement, and not supplant, other public 
                or private support for activities authorized to be 
                supported under this paragraph.
                    ``(F) Duration of consortium support.--Support of a 
                consortium under subparagraph (A) may be for a period 
                of not to exceed 5 years. Such period may be extended 
                at the discretion of the Director of NIH.
            ``(3) Coordination of consortia activities.--The Director 
        of NIH shall--
                    ``(A) as appropriate, provide for the coordination 
                of activities (including the exchange of information 
                and regular communication) among the consortia 
                established pursuant to paragraph (2); and
                    ``(B) as appropriate, require the periodic 
                preparation and submission to the Director of reports 
                on the activities of each such consortium.
    ``(e) Research on Pediatric Rare Diseases or Conditions.--
            ``(1) In general.--In making awards under subsection (d)(2) 
        for pediatric research consortia, the Director of NIH may 
        ensure that an appropriate number of such awards are awarded to 
        such consortia that agree to--
                    ``(A) focus primarily on pediatric rare diseases or 
                conditions (including any such diseases or conditions 
                that are genetic disorders or are related to birth 
                defects); and
                    ``(B) conduct or coordinate one or more multisite 
                clinical trials of therapies for, or approaches to, the 
                prevention, diagnosis, or treatment of one or more 
                pediatric rare diseases or conditions.''.
                                 <all>