I 
116TH CONGRESS 
1ST SESSION H. R. 1131 
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 
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 Com-
mittee 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 2019’’. 
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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 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 infor-
mation 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. 
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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) 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 Collabo-
rative Research Centers for 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 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.— 
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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 and contracts to applicants 
which meet the scientific criteria for funding 
under this subsection. 
‘‘(4) ORGANIZATION
OF
COLLABORATIVE
RE-
SEARCH CENTERS FOR TOURETTE SYNDROME.— 
‘‘(A) IN GENERAL.—A center under para-
graph (1) may— 
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‘‘(i) use the facilities of a single insti-
tution; or 
‘‘(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 (A)(ii)), an institution or group shall 
meet such requirements as the Secretary may 
prescribe. 
‘‘(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 
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 
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