[Congressional Bills 112th Congress]
[From the U.S. Government Publishing Office]
[S. 1840 Introduced in Senate (IS)]

112th CONGRESS
  1st Session
                                S. 1840

To amend the Public Health Service Act to expand and intensify programs 
  of the National Institutes of Health with respect to translational 
research and related activities concerning Down syndrome, and for other 
                               purposes.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                           November 10, 2011

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

_______________________________________________________________________

                                 A BILL


 
To amend the Public Health Service Act to expand and intensify programs 
  of the National Institutes of Health with respect to translational 
research and related activities concerning Down syndrome, and for other 
                               purposes.

    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 ``Trisomy 21 Research Centers of 
Excellence Act of 2011''.

SEC. 2. NIH DOWN SYNDROME RESEARCH ACTIVITIES.

    Part B of title IV of the Public Health Service Act (42 U.S.C. 284 
et seq.) is amended by adding at the end of the title the following:

``SEC. 409K. DOWN SYNDROME RESEARCH ACTIVITIES.

    ``(a) Expansion, Intensification, and Coordination of Activities.--
            ``(1) In general.--The Director of NIH, acting through the 
        Director of the Eunice Kennedy Shriver National Institute of 
        Child Health and Human Development, shall expand and intensify 
        programs of the National Institutes of Health with respect to 
        research and related activities concerning Down syndrome. The 
        Director of NIH shall carry out such programs in coordination 
        with a working group composed of representatives of the 
        relevant institutes, centers, offices, and agencies of the 
        National Institutes of Health.
            ``(2) NIH research plan on down syndrome.--The Director of 
        NIH shall publish a research plan on Down syndrome, and update 
        it every 5 years or as appropriate.
    ``(b) Centers of Excellence.--
            ``(1) In general.--In carrying out subsection (a)(1), the 
        Director of NIH shall award grants and contracts to public or 
        nonprofit private entities to pay all or part of the cost of 
        planning, establishing, improving, and providing basic 
        operating support for centers of excellence regarding 
        translational research on Down syndrome. To the extent and in 
        the amount of appropriations made in advance, the Director of 
        NIH shall provide for the establishment of at least 6 such 
        centers of excellence.
            ``(2) Basic, translational, and clinical research.--Each 
        center receiving funds under paragraph (1) shall contribute to 
        a comprehensive research portfolio for Down syndrome building 
        upon the recommendations set forth in the NIH Research Plan on 
        Down Syndrome published on October 8, 2007, have a primary 
        focus on Down syndrome, provide an optimal venue and 
        infrastructure for patient-oriented research, and conduct 
        basic, clinical, and translational research on Down syndrome, 
        including research on one or more of the following:
                    ``(A) Early detection, diagnosis, and treatment of 
                Down syndrome.
                    ``(B) The biological mechanisms responsible for 
                structural and functional anomalies in cells and 
                tissues affected by Down syndrome.
                    ``(C) The biological mechanisms responsible for 
                cognitive and behavioral dysfunction resulting from 
                Down syndrome.
                    ``(D) Novel biomedical and pharmacological 
                interventions designed to promote or enhance cognition 
                and related brain functions and activities of daily 
                living (ADLs).
                    ``(E) Co-occurrence of and treatments for 
                associated medical and neurobehavioral disorders.
                    ``(F) Developmental disorders, interventions for 
                congenital heart disease, obstructive sleep apnea, 
                coronary heart disease, obesity, and metabolism.
                    ``(G) Contributions of genetic variation to 
                clinical presentation as targets for therapy.
                    ``(H) Identification of biomarkers for complex 
                phenotypes.
                    ``(I) Noninvasive imaging in support of efforts 
                regarding other genotype and phenotypes of Down 
                syndrome.
                    ``(J) Pharmacological and other therapies for 
                common features of Down syndrome including Alzheimer's 
                disease and other Down syndrome-related disorders.
                    ``(K) Research related to improving the quality of 
                life for individuals with Down syndrome and their 
                families.
                    ``(L) Research training programs aimed at 
                increasing the numbers of scientists who are trained to 
                carry out these research directions.
            ``(3) Services for patients.--
                    ``(A) In general.--A center receiving funds under 
                paragraph (1) shall expend amounts provided under such 
                paragraph to carry out a program to make individuals 
                aware of opportunities to participate as subjects in 
                research conducted by the centers receiving funds under 
                such paragraph.
                    ``(B) Referrals and costs.--A program under 
                subparagraph (A) shall, in accordance with such 
                criteria as the Director of NIH may establish, provide 
                to the subjects described in such subparagraph 
                referrals for health and other services and such 
                patient care costs as are required for research.
                    ``(C) Availability and access.--In awarding grants 
                under this section, the Director of NIH shall require 
                the applicant to demonstrate, and shall take into 
                consideration, the availability of and access to health 
                and medical services described in subparagraph (B).
            ``(4) Training program for clinicians and scientists.--Each 
        center receiving funds under paragraph (1) shall establish or 
        expand training programs for medical and allied health 
        clinicians and scientists in research relevant to Down 
        syndrome.
            ``(5) Coordination of centers; reports.--The Director of 
        NIH shall--
                    ``(A) provide for the coordination of information 
                sharing among the centers receiving funds under 
                paragraph (1) and ensure regular communication among 
                such centers; and
                    ``(B) require the centers to submit periodic 
                reports to the Director on their activities.
            ``(6) Organization of centers.--Each center receiving funds 
        under paragraph (1) shall use the facilities of a single 
        institution meeting such requirements as may be prescribed by 
        the Director of NIH, be formed from a virtual consortium or 
        network of such institutions, or both.
            ``(7) Duration of support.--
                    ``(A) In general.--Subject to subparagraph (B), the 
                Director of NIH may not provide support to a center 
                receiving funds under paragraph (1) for a period of 
                more than 5 years.
                    ``(B) Extension.--The period referred to in 
                subparagraph (A) may be extended for 1 or more 
                additional periods not exceeding 5 years if--
                            ``(i) the operations of the center have 
                        been reviewed by an appropriate technical and 
                        scientific peer review group established by the 
                        Director of NIH; and
                            ``(ii) such group has recommended to the 
                        Director that such period be extended.
    ``(c) Down Syndrome Consortium.--In carrying out subsection (a)(1), 
the Director of NIH may establish a Down Syndrome Consortium to 
facilitate the exchange of information and to make the research effort 
on Down syndrome more efficient and effective by assuring consistent 
communication, minimizing duplication of effort, and integrating the 
varied perspectives of partner agencies, organizations, and 
individuals.
    ``(d) Report to Congress.--Not later than January 1, 2012, and each 
January 1 thereafter, the Secretary of Health and Human Services shall 
prepare and submit to the appropriate committees of the Congress a 
report concerning the implementation of this section.
    ``(e) Authorization of Appropriations.--To carry out this section, 
there are authorized to be appropriated $6,000,000 for each of fiscal 
years 2012 through 2017.''.
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