I 

113TH CONGRESS 

1ST SESSION H. R. 146 

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 

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 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Collaborative Academic 

5 Research Efforts for Tourette Syndrome Act of 2013’’. 


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1 SEC. 2. PROGRAMS OF THE NATIONAL INSTITUTES OF 

2 HEALTH RELATING TO TOURETTE SYN3 DROME. 

4 Part B of title IV of the Public Health Service Act 

5 is amended by inserting after section 409J (42 U.S.C. 

6 284q) the following: 

7 ‘‘SEC. 409K. EXPANSION, INTENSIFICATION, AND COORDI8 NATION OF ACTIVITIES WITH RESPECT TO 

9 TOURETTE SYNDROME. 

10 ‘‘(a) IN GENERAL.—The Secretary, acting through 

11 the Director of NIH, shall expand, intensify, and coordi12 nate the programs and activities of the National Institutes 

13 of Health with respect to Tourette syndrome. 

14 ‘‘(b) DATA COLLECTION.— 

15 ‘‘(1) SYSTEM.—In carrying out subsection (a), 

16 the Secretary shall develop a system to collect data 

17 on Tourette syndrome, including epidemiologic infor18 mation with respect to the incidence and prevalence 

19 of Tourette syndrome in the United States. 

20 ‘‘(2) BROAD AND NARROW DEFINITIONS.—The 

21 data collection system under paragraph (1) shall 

22 provide for the collection of primary data on 

23 Tourette syndrome, including related data on the 

24 various conditions known to be comorbid with 

25 Tourette syndrome. 


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1 ‘‘(3) COLLECTION BY POPULATION AND GEO2 GRAPHICAL REGION.—The data collection system 

3 under paragraph (1) shall provide for the collection 

4 of data on the availability of medical and social serv5 ices for individuals with Tourette syndrome and 

6 their families and the disaggregation of such data by 

7 population and geographical region. 

8 ‘‘(c) CENTERS OF EXCELLENCE.— 

9 ‘‘(1) IN GENERAL.—In carrying out subsection 

10 (a), the Secretary shall make awards of grants and 

11 contracts to public or nonprofit private entities to 

12 pay all or part of the cost of planning, establishing, 

13 improving, and providing basic operating support for 

14 centers of excellence regarding research on Tourette 

15 syndrome. 

16 ‘‘(2) RESEARCH.—Each center under para17 graph (1) shall conduct basic and clinical research 

18 into Tourette syndrome. Such research should in19 clude investigations into the cause, diagnosis, early 

20 detection, prevention, control, and treatment of 

21 Tourette syndrome. The centers, as a group, shall 

22 conduct research including the fields of developmen23 tal neurobiology, genetics, and psychopharmacology. 

24 ‘‘(3) SERVICES FOR PATIENTS.— 


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1 ‘‘(A) IN GENERAL.—A center under para2 graph (1) may expend amounts provided under 

3 such paragraph to carry out a program to make 

4 individuals aware of opportunities to participate 

5 as subjects in research conducted by the cen6 ters. 

7 ‘‘(B) REFERRAL AND COSTS.—A program 

8 under subparagraph (A) may, in accordance 

9 with such criteria as the Secretary may estab10 lish, provide to the subjects described in such 

11 subparagraph, referrals for health and other 

12 services, and such patient care costs as are re13 quired for research. 

14 ‘‘(C) AVAILABILITY AND ACCESS.—The ex15 tent to which a center can demonstrate avail16 ability and access to clinical services shall be 

17 considered by the Secretary in decisions about 

18 awarding grants to applicants which meet the 

19 scientific criteria for funding under this section. 

20 ‘‘(4) ORGANIZATION OF CENTERS.— 

21 ‘‘(A) IN GENERAL.—A center under para22 graph (1) may— 

23 ‘‘(i) use the facilities of a single insti24 tution; or 


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1 ‘‘(ii) be formed from a consortium of 

2 cooperating institutions and patient advo3 cacy groups in order to maximize the scope 

4 of the center’s services and geographic cov5 erage. 

6 ‘‘(B) ELIGIBILITY REQUIREMENTS.—To be 

7 eligible to make facilities so available (as de8 scribed in subparagraph (A)(i)) or participate 

9 in such a consortium (as described in subpara10 graph (B)), an institution or group shall meet 

11 such requirements as the Secretary may pre12 scribe. 

13 ‘‘(5) NUMBER OF CENTERS; DURATION OF SUP14 PORT.— 

15 ‘‘(A) IN GENERAL.—Subject to the avail16 ability of appropriations, the Secretary shall 

17 provide for the establishment of not fewer than 

18 four and not more than six centers under para19 graph (1). 

20 ‘‘(B) GEOGRAPHICAL DISTRIBUTION.—The 

21 Secretary shall— 

22 ‘‘(i) ensure that each of the centers 

23 established under paragraph (1) is located 

24 in a different region of the United States 

25 than the other such centers; and 


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1 ‘‘(ii) encourage the formation of such 

2 centers from a consortium of entities (as 

3 described in paragraph (4)(A)(ii)) covering 

4 multiple States. 

5 ‘‘(C) DURATION.—Support for a center es6 tablished under paragraph (1) may be provided 

7 under this section for a period of not to exceed 

8 5 years. Such period may be extended for one 

9 or more additional periods not exceeding 5 

10 years if the operations of such center have been 

11 reviewed by an appropriate technical and sci12 entific peer review group established by the Sec13 retary and if such group has recommended to 

14 the Secretary that such period should be ex15 tended. 

16 ‘‘(d) RESEARCH ON SYMPTOMOLOGY AND TREAT17 MENT.—In carrying out subsection (a), the Secretary shall 

18 award grants on a competitive basis for research on— 

19 ‘‘(1) the full range of symptomology within the 

20 Tourette syndrome clinical spectrum; and 

21 ‘‘(2) the efficacy of treatment options for par22 ticular patient subpopulations. 

23 ‘‘(e) FUNDING.—Of the amounts made available to 

24 carry out the programs and activities of the National In25 stitutes of Health for a fiscal year, the Secretary shall desVerDate Mar 15 2010 22:51 Jan 10, 2013 Jkt 029200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\H146.IH H146

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1 ignate a portion of such amounts for carrying out the pro2 grams and activities of the National Institutes of Health 

3 with respect to Tourette syndrome.’’. 

Æ 


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