Bill Summary
This legislation, titled the "Collaborative Academic Research Efforts for Tourette Syndrome Act of 2019," aims to amend the Public Health Service Act in order to expand, intensify, and coordinate programs and activities related to Tourette syndrome within the National Institutes of Health (NIH). This includes developing a system to collect data on Tourette syndrome, awarding grants and contracts for the establishment of Collaborative Research Centers, conducting research on the cause, diagnosis, and treatment of Tourette syndrome, and providing funding for these efforts. The legislation also specifies the need for geographic distribution and duration of support for these centers, as well as funding for research on symptomology and treatment options.
Possible Impacts
1. Increased Awareness and Availability of Services: The legislation would require the Secretary of Health to develop a system to collect data on Tourette syndrome, including information on the availability of medical and social services for individuals with Tourette syndrome and their families. This could potentially lead to increased awareness of the condition and availability of services for those affected by it.
2. Increased Funding for Research: The legislation would also allocate a portion of the budget for the National Institutes of Health specifically for programs and activities related to Tourette syndrome. This could lead to increased funding for research into the cause, diagnosis, prevention, and treatment of the condition.
3. Establishment of Collaborative Research Centers: The legislation would allow for the establishment of up to 6 Collaborative Research Centers for Tourette Syndrome, which would conduct research and provide services for individuals with the condition. This could potentially improve access to specialized care and treatment for those affected by Tourette syndrome.
[Congressional Bills 116th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1131 Introduced in House (IH)]
<DOC>
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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