National Pediatric Research Network Act of 2012

Bill: 112-hr-6163
Sponsor: Rep. McMorris Rodgers, Cathy [R-WA-5]
Introduced: 2012-07-19 in the House
Policy area: Health
Subjects: Birth defects
Child health
Government information and archives
Health information and medical records
Health programs administration and funding
Hereditary and development disorders
Medical education
Medical research
Research administration and funding

Summary:
action_date: 2012-07-19
text: 
National Pediatric Research Network Act of 2012 - 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 and in collaboration with other appropriate national research institutes and national centers that carry out activities involving pediatric research to provide for the establishment of a National Pediatric Research Network.
 
Authorizes the Director of the Institute to award cooperative agreements and grants 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 for pediatric research needs and training. Authorizes the Director to make awards for not more than 20 pediatric research consortia. Requires the Director to provide for the coordination of activities among the consortia and to require the periodic preparation and submission of reports on their activities.
 
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; (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; and (3) disseminate trial findings.
 
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; (3) organize and conduct multi-site monitoring activities; (4) provide assistance to the Centers for Disease Control and Prevention (CDC) in the establishment of patient registries; and (5) report regularly on consortia research.

action_date: 2012-09-19
text: 
National Pediatric Research Network Act of 2012 - 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 and train researchers in pediatric research techniques. Authorizes the Director of NIH to make awards for not more than 20 pediatric research consortia, which are to be formed from a collaboration of cooperating institutions, coordinated by a lead institution, and meet requirements prescribed by the Director of NIH. Allows such support to be for a period of five years with additional extensions by 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 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; (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; and (3) rapidly and efficiently disseminate scientific findings from such trials.
 
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; (3) organize and conduct multi-site monitoring activities; and (4) provide assistance to the Centers for Disease Control and Prevention (CDC) in the establishment or expansion of patient registries and other surveillance systems.
 
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. 


Legislative actions:
action_date: 2012-09-20
text: Received in the Senate and Read twice and referred to the Committee on Health, Education, Labor, and Pensions.
action_date: 2012-09-19
text: Motion to reconsider laid on the table Agreed to without objection.
action_date: 2012-09-19
text: On motion to suspend the rules and pass the bill, as amended Agreed to by voice vote. (text: CR H6138)
action_date: 2012-09-19
text: Passed/agreed to in House: On motion to suspend the rules and pass the bill, as amended Agreed to by voice vote.(text: CR H6138)
action_date: 2012-09-19
text: DEBATE - The House proceeded with forty minutes of debate on H.R. 6163.
action_date: 2012-09-19
text: Considered under suspension of the rules. (consideration: CR H6138-61340)
action_date: 2012-09-19
text: Mr. Upton moved to suspend the rules and pass the bill, as amended.
action_date: 2012-09-11
text: Forwarded by Subcommittee to Full Committee .
action_date: 2012-09-11
text: Subcommittee Hearings Held.
action_date: 2012-07-20
text: Referred to the Subcommittee on Health.
action_date: 2012-07-19
text: Referred to the House Committee on Energy and Commerce.
action_date: 2012-07-19
text: Introduced in House
action_date: 2012-07-19
text: Introduced in House