I 
113TH CONGRESS 
1ST SESSION 
H. R. 146 
To amend the Public Health Service Act to provide for the expansion, inten-
sification, 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 Representa-
tives 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’’. 
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SEC. 2. PROGRAMS OF THE NATIONAL INSTITUTES OF 
HEALTH 
RELATING 
TO 
TOURETTE 
SYN-
DROME. 
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 COORDI-
NATION OF ACTIVITIES WITH RESPECT TO 
TOURETTE SYNDROME. 
‘‘(a) IN GENERAL.—The Secretary, acting through 
the Director of NIH, shall expand, intensify, and coordi-
nate 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 infor-
mation 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. 
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‘‘(3) COLLECTION BY POPULATION AND GEO-
GRAPHICAL
REGION.—The data collection system 
under paragraph (1) shall provide for the collection 
of data on the availability of medical and social serv-
ices 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 para-
graph (1) shall conduct basic and clinical research 
into Tourette syndrome. Such research should in-
clude 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 developmen-
tal neurobiology, genetics, and psychopharmacology. 
‘‘(3) SERVICES FOR PATIENTS.— 
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‘‘(A) IN GENERAL.—A center under para-
graph (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 cen-
ters. 
‘‘(B) REFERRAL AND COSTS.—A program 
under subparagraph (A) may, in accordance 
with such criteria as the Secretary may estab-
lish, provide to the subjects described in such 
subparagraph, referrals for health and other 
services, and such patient care costs as are re-
quired for research. 
‘‘(C) AVAILABILITY AND ACCESS.—The ex-
tent to which a center can demonstrate avail-
ability 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 para-
graph (1) may— 
‘‘(i) use the facilities of a single insti-
tution; or 
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‘‘(ii) be formed from a consortium of 
cooperating institutions and patient advo-
cacy groups in order to maximize the scope 
of the center’s services and geographic cov-
erage. 
‘‘(B) ELIGIBILITY REQUIREMENTS.—To be 
eligible to make facilities so available (as de-
scribed in subparagraph (A)(i)) or participate 
in such a consortium (as described in subpara-
graph (B)), an institution or group shall meet 
such requirements as the Secretary may pre-
scribe. 
‘‘(5) NUMBER OF CENTERS; DURATION OF SUP-
PORT.— 
‘‘(A) IN GENERAL.—Subject to the avail-
ability of appropriations, the Secretary shall 
provide for the establishment of not fewer than 
four and not more than six centers under para-
graph (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 
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‘‘(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 es-
tablished 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 sci-
entific peer review group established by the Sec-
retary and if such group has recommended to 
the Secretary that such period should be ex-
tended. 
‘‘(d) RESEARCH ON SYMPTOMOLOGY AND TREAT-
MENT.—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 par-
ticular patient subpopulations. 
‘‘(e) FUNDING.—Of the amounts made available to 
carry out the programs and activities of the National In-
stitutes of Health for a fiscal year, the Secretary shall des-
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ignate a portion of such amounts for carrying out the pro-
grams and activities of the National Institutes of Health 
with respect to Tourette syndrome.’’. 
Æ 
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