[Congressional Bills 113th Congress]
[From the U.S. Government Publishing Office]
[H.R. 146 Introduced in House (IH)]

113th CONGRESS
  1st Session
                                H. R. 146

 To amend the Public Health Service Act to provide for the expansion, 
intensification, and coordination of the programs and activities of the 
    National Institutes of Health with respect to Tourette syndrome.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                            January 3, 2013

  Mr. Sires introduced the following bill; which was referred to the 
                    Committee on Energy and Commerce

_______________________________________________________________________

                                 A BILL


 
 To amend the Public Health Service Act to provide for the expansion, 
intensification, and coordination of the programs and activities of the 
    National Institutes of Health with respect to Tourette syndrome.

    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 ``Collaborative Academic Research 
Efforts for Tourette Syndrome Act of 2013''.

SEC. 2. PROGRAMS OF THE NATIONAL INSTITUTES OF HEALTH RELATING TO 
              TOURETTE SYNDROME.

    Part B of title IV of the Public Health Service Act is amended by 
inserting after section 409J (42 U.S.C. 284q) the following:

``SEC. 409K. EXPANSION, INTENSIFICATION, AND COORDINATION OF ACTIVITIES 
              WITH RESPECT TO TOURETTE SYNDROME.

    ``(a) In General.--The Secretary, acting through the Director of 
NIH, shall expand, intensify, and coordinate the programs and 
activities of the National Institutes of Health with respect to 
Tourette syndrome.
    ``(b) Data Collection.--
            ``(1) System.--In carrying out subsection (a), the 
        Secretary shall develop a system to collect data on Tourette 
        syndrome, including epidemiologic information with respect to 
        the incidence and prevalence of Tourette syndrome in the United 
        States.
            ``(2) Broad and narrow definitions.--The data collection 
        system under paragraph (1) shall provide for the collection of 
        primary data on Tourette syndrome, including related data on 
        the various conditions known to be comorbid with Tourette 
        syndrome.
            ``(3) Collection by population and geographical region.--
        The data collection system under paragraph (1) shall provide 
        for the collection of data on the availability of medical and 
        social services for individuals with Tourette syndrome and 
        their families and the disaggregation of such data by 
        population and geographical region.
    ``(c) Centers of Excellence.--
            ``(1) In general.--In carrying out subsection (a), the 
        Secretary shall make awards of 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 research 
        on Tourette syndrome.
            ``(2) Research.--Each center under paragraph (1) shall 
        conduct basic and clinical research into Tourette syndrome. 
        Such research should include investigations into the cause, 
        diagnosis, early detection, prevention, control, and treatment 
        of Tourette syndrome. The centers, as a group, shall conduct 
        research including the fields of developmental neurobiology, 
        genetics, and psychopharmacology.
            ``(3) Services for patients.--
                    ``(A) In general.--A center under paragraph (1) may 
                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.
                    ``(B) Referral and costs.--A program under 
                subparagraph (A) may, in accordance with such criteria 
                as the Secretary 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.--The extent to which 
                a center can demonstrate availability and access to 
                clinical services shall be considered by the Secretary 
                in decisions about awarding grants to applicants which 
                meet the scientific criteria for funding under this 
                section.
            ``(4) Organization of centers.--
                    ``(A) In general.--A center under paragraph (1) 
                may--
                            ``(i) use the facilities of a single 
                        institution; or
                            ``(ii) be formed from a consortium of 
                        cooperating institutions and patient advocacy 
                        groups in order to maximize the scope of the 
                        center's services and geographic coverage.
                    ``(B) Eligibility requirements.--To be eligible to 
                make facilities so available (as described in 
                subparagraph (A)(i)) or participate in such a 
                consortium (as described in subparagraph (B)), an 
                institution or group shall meet such requirements as 
                the Secretary may prescribe.
            ``(5) Number of centers; duration of support.--
                    ``(A) In general.--Subject to the availability of 
                appropriations, the Secretary shall provide for the 
                establishment of not fewer than four and not more than 
                six centers under paragraph (1).
                    ``(B) Geographical distribution.--The Secretary 
                shall--
                            ``(i) ensure that each of the centers 
                        established under paragraph (1) is located in a 
                        different region of the United States than the 
                        other such centers; and
                            ``(ii) encourage the formation of such 
                        centers from a consortium of entities (as 
                        described in paragraph (4)(A)(ii)) covering 
                        multiple States.
                    ``(C) Duration.--Support for a center established 
                under paragraph (1) may be provided under this section 
                for a period of not to exceed 5 years. Such period may 
                be extended for one or more additional periods not 
                exceeding 5 years if the operations of such center have 
                been reviewed by an appropriate technical and 
                scientific peer review group established by the 
                Secretary and if such group has recommended to the 
                Secretary that such period should be extended.
    ``(d) Research on Symptomology and Treatment.--In carrying out 
subsection (a), the Secretary shall award grants on a competitive basis 
for research on--
            ``(1) the full range of symptomology within the Tourette 
        syndrome clinical spectrum; and
            ``(2) the efficacy of treatment options for particular 
        patient subpopulations.
    ``(e) Funding.--Of the amounts made available to carry out the 
programs and activities of the National Institutes of Health for a 
fiscal year, the Secretary shall designate a portion of such amounts 
for carrying out the programs and activities of the National Institutes 
of Health with respect to Tourette syndrome.''.
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