,,ib ,union ,calendar ,no4 #b #aacth ,,congress #ast ,session ,h4 ,r4 #bbe ,report ,no4 #aac-d ,,in ,,the ,,house ,,of ,,representatives ,january #ad1 #bjac ,mrs4 ,capps 7for herself1 ,mrs4 ,mc,morris ,rodgers1 ,ms4 ,de,gette1 ,mr4 ,harper1 ,ms4 ,matsui1 and ,mr4 ,king of ,new ,york7 introduced the following bill2 which was referred to the ,committee on ,energy and ,commerce ,february #d1 #bjac ,additional sponsors3 ,mrs4 ,christensen1 ,ms4 ,schakowsky1 ,mr4 ,waxman1 ,mr4 ,pallone1 and ,ms4 ,castor of ,florida ,february #d1 #bjac ,committed to the ,committee of the ,whole ,house on the ,state of the ,union and ordered to be printed ,a ,,bill ,to amend title ,,iv of the ,public ,health ,service ,act to provide for a ,national ,pediatric ,research ,network1 including with respect to pediatric rare diseases or conditions4 #a4 ,short title ,this ,act may be cited as the ,national ,pediatric ,research ,network ,act of #bjac4 #b4 ,national ,pediatric ,research ,network ,section #dji;,d of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bhd;h2 relating to the ,pediatric ,research ,initiative7 is amended-- 7#a7 by redesignating subsection 7d7 as subsection 7f72 and 7#b7 by inserting after subsection 7c7 the following3 7d7 ,national ,pediatric ,research ,network 7#a7 ,network ,in carrying out the ,initiative1 the ,director of ,,nih1 acting through 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 research1 may provide for the establishment of a ,national ,pediatric ,research ,network consisting of the pediatric research consortia receiving awards under paragraph 7#b74 7#b7 ,pediatric research consortia 7,a7 ,in general ,the ,director of the ,institute may award funding1 including through grants1 contracts1 or other mechanisms1 to public or private nonprofit entities-- 7i7 for planning1 establishing1 or strengthening pediatric research consortia2 and 7ii7 for providing basic operating support for such consortia1 including with respect to-- 7,i7 basic1 clinical1 behavioral1 or translational research to meet unmet needs for pediatric research2 and 7,,ii7 training researchers in pediatric research techniques in order to address unmet pediatric research needs4 7,b7 ,research ,the ,director of ,,nih shall ensure that-- 7i7 each consortium receiving an award under subparagraph 7,a7 conducts or supports at least one category of research described in subparagraph 7,a77ii77,i7 and collectively such consortia conduct or support all such categories of research2 and 7ii7 one or more such consortia provide training described in subparagraph 7,a77ii77,,ii74 7,c7 ,number of consortia ,the ,director of ,,nih may make awards under this paragraph for not more than #bj pediatric research consortia4 7,d7 ,organization of consortium ,each consortium receiving an award under subparagraph 7,a7 shall-- 7i7 be formed from a collaboration of cooperating institutions2 7ii7 be coordinated by a lead institution2 7iii7 agree to disseminate scientific findings1 including from clinical trials1 rapidly and efficiently2 and 7iv7 meet such requirements as may be prescribed by the ,director of ,,nih4 7,e7 ,supplement1 not supplant ,any support received by a consortium under subparagraph 7,a7 shall be used to supplement1 and not supplant1 other public or private support for activities authorized to be supported under this paragraph4 7,f7 ,duration of support ,support of a consortium under subparagraph 7,a7 may be for a period of not to exceed #e years4 ,such period may be extended at the discretion of the ,director of ,,nih4 7#c7 ,coordination of consortia activities ,the ,director of ,,nih shall-- 7,a7 as appropriate1 provide for the coordination of activities 7including the exchange of information and regular communication7 among the consortia established pursuant to paragraph 7#b72 and 7,b7 require the periodic preparation and submission to the ,director of reports on the activities of each such consortium4 7#d7 ,assistance with registries ,each consortium receiving an award under paragraph 7#b77;,a7 shall provide assistance to the ,centers for ,disease ,control and ,prevention in the establishment or expansion of patient registries and other surveillance systems as appropriate and upon request by the ,director of the ,centers4 7e7 ,research on pediatric rare diseases or conditions 7#a7 ,in general ,in making awards under subsection 7d77#b7 for pediatric research consortia1 the ,director of ,,nih shall ensure that an appropriate number of such awards are awarded to such consortia that agree to-- 7,a7 focus primarily on pediatric rare diseases or conditions 7including any such diseases or conditions that are genetic disorders 7such as spinal muscular atrophy and ,duchenne muscular dystrophy7 or are related to birth defects 7such as ,down syndrome and fragile ,x772 and 7,b7 conduct or coordinate one or more multisite clinical trials of therapies for1 or approaches to1 the prevention1 diagnosis1 or treatment of one or more pediatric rare diseases or conditions4 7#b7 ,data coordinating center 7,a7 ,establishment ,in connection with support of consortia described in paragraph 7#a71 the ,director of ,,nih shall establish a data coordinating center for the following purposes3 7i7 ,to distribute the scientific findings referred to in paragraph 7#a77;,c74 7ii7 ,to provide assistance in the design and conduct of collaborative research projects and the management1 analysis1 and storage of data associated with such projects4 7iii7 ,to organize and conduct multisite monitoring activities4 7,b7 ,reporting ,the ,director of ,,nih shall-- 7i7 require the data coordinating center established under subparagraph 7,a7 to provide regular reports to the ,director of ,,nih and the ,commissioner of ,food and ,drugs on research conducted by consortia described in paragraph 7#a71 including information on enrollment in clinical trials and the allocation of resources with respect to such research2 and 7ii7 as appropriate1 incorporate information reported under clause 7i7 into the ,director's biennial reports under section #djc4 4 ,february #d1 #bjac ,committed to the ,committee of the ,whole ,house on the ,state of the ,union and ordered to be printed