Library / Laws / 113th / hr / H.R. 146 / Introduced in House
I
113th CONGRESS
1st Session
H. R. 146
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.
1.
Short title
This Act may be cited as the
Collaborative Academic Research
Efforts for Tourette Syndrome Act of 2013.
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:
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.
.