Title: Collaborative Academic Research Efforts for Tourette Syndrome Act of 2019
Policy area: Health

Summary:
Collaborative Academic Research Efforts for Tourette Syndrome Act of 2019
This bill requires the National Institutes of Health (NIH) to expand, intensify, and coordinate NIH research on Tourette syndrome.
The NIH must (1) develop a system to collect data on Tourette syndrome, including epidemiological information and data on the availability of medical and social services for individuals with Tourette syndrome and their families; (2) support Collaborative Research Centers for Tourette Syndrome to conduct basic and clinical research; (3) award grants for research on Tourette syndrome symptoms and treatment options for particular patient subpopulations; and (4) designate funding to carry out Tourette syndrome programs and activities.

[Congressional Bills 116th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1131 Introduced in House (IH)]

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116th CONGRESS
  1st Session
                                H. R. 1131

 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

                            February 8, 2019

   Mr. Sires (for himself, Mr. Engel, Mr. Cohen, Mr. Khanna, and Mr. 
   Schiff) 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 2019''.

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 
scientific and clinical research on 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, prevalence, and impact 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) Collaborative Research Centers for Tourette Syndrome.--
            ``(1) In general.--In carrying out subsection (a), the 
        Secretary 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 Collaborative Research Centers for 
        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 research conducted by such centers, 
        as a group, shall include research in the fields of 
        developmental neurobiology, neuroscience, genetics, psychology, 
        and pharmacology.
            ``(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 and contracts to 
                applicants which meet the scientific criteria for 
                funding under this subsection.
            ``(4) Organization of collaborative research centers for 
        tourette syndrome.--
                    ``(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 (A)(ii)), 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 4 and not more than 6 
                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 
                        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 regions or States.
                    ``(C) Duration.--Support for a center established 
                under paragraph (1) may be provided under this section 
                for a period 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 and approved 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, 
peer-reviewed 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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