I 

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. 

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 2019’’. 


pamtmann on DSKBFK8HB2PROD with BILLS
2 

•HR 1131 IH

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 scientific and clinical research 

14 on Tourette syndrome. 

15 ‘‘(b) DATA COLLECTION.— 

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

17 the Secretary shall develop a system to collect data 

18 on Tourette syndrome, including epidemiologic infor19 mation with respect to the incidence, prevalence, and 

20 impact of Tourette syndrome in the United States. 

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

22 data collection system under paragraph (1) shall 

23 provide for the collection of primary data on 

24 Tourette syndrome, including related data on the 

25 various conditions known to be comorbid with 

26 Tourette syndrome. 


pamtmann on DSKBFK8HB2PROD with BILLS
3 

•HR 1131 IH

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) COLLABORATIVE RESEARCH CENTERS FOR

9 TOURETTE SYNDROME.— 

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

11 (a), the Secretary shall award grants and contracts 

12 to public or nonprofit private entities to pay all or 

13 part of the cost of planning, establishing, improving, 

14 and providing basic operating support for Collabo15 rative Research Centers for Tourette 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 research conducted by such 

22 centers, as a group, shall include research in the 

23 fields of developmental neurobiology, neuroscience, 

24 genetics, psychology, and pharmacology. 

25 ‘‘(3) SERVICES FOR PATIENTS.— 


pamtmann on DSKBFK8HB2PROD with BILLS
4 

•HR 1131 IH

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 and contracts to applicants 

19 which meet the scientific criteria for funding 

20 under this subsection. 

21 ‘‘(4) ORGANIZATION OF COLLABORATIVE RE22 SEARCH CENTERS FOR TOURETTE SYNDROME.— 

23 ‘‘(A) IN GENERAL.—A center under para24 graph (1) may— 


pamtmann on DSKBFK8HB2PROD with BILLS
5 

•HR 1131 IH

1 ‘‘(i) use the facilities of a single insti2 tution; or 

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

4 cooperating institutions and patient advo5 cacy groups in order to maximize the scope 

6 of the center’s services and geographic cov7 erage. 

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

9 eligible to make facilities so available (as de10 scribed in subparagraph (A)(i)) or participate 

11 in such a consortium (as described in subpara12 graph (A)(ii)), an institution or group shall 

13 meet such requirements as the Secretary may 

14 prescribe. 

15 ‘‘(5) NUMBER OF CENTERS; DURATION OF SUP16 PORT.— 

17 ‘‘(A) IN GENERAL.—Subject to the avail18 ability of appropriations, the Secretary shall 

19 provide for the establishment of not fewer than 

20 4 and not more than 6 centers under paragraph 

21 (1). 

22 ‘‘(B) GEOGRAPHICAL DISTRIBUTION.—The 

23 Secretary shall— 

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

25 established under paragraph (1) is located 


pamtmann on DSKBFK8HB2PROD with BILLS
6 

•HR 1131 IH

1 in a different region of the United States 

2 than other such centers; and 

3 ‘‘(ii) encourage the formation of such 

4 centers from a consortium of entities (as 

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

6 multiple regions or States. 

7 ‘‘(C) DURATION.—Support for a center es8 tablished under paragraph (1) may be provided 

9 under this section for a period not to exceed 5 

10 years. Such period may be extended for one or 

11 more additional periods not exceeding 5 years if 

12 the operations of such center have been re13 viewed and approved by an appropriate tech14 nical and scientific peer review group estab15 lished by the Secretary and if such group has 

16 recommended to the Secretary that such period 

17 should be extended. 

18 ‘‘(d) RESEARCH ON SYMPTOMOLOGY AND TREAT19 MENT.—In carrying out subsection (a), the Secretary shall 

20 award grants on a competitive, peer-reviewed basis for re21 search on— 

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

23 Tourette syndrome clinical spectrum; and 

24 ‘‘(2) the efficacy of treatment options for par25 ticular patient subpopulations. 


pamtmann on DSKBFK8HB2PROD with BILLS
7 

•HR 1131 IH

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

2 carry out the programs and activities of the National In3 stitutes of Health for a fiscal year, the Secretary shall des4 ignate a portion of such amounts for carrying out the pro5 grams and activities of the National Institutes of Health 

6 with respect to Tourette syndrome.’’. 

Æ 


pamtmann on DSKBFK8HB2PROD with BILLS