Collaborative Academic Research Efforts for Tourette Syndrome Act of 2019

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- 1 tives of the United States of America in Congress assembled, 2 SECTION 1. SHORT TITLE. 3 This Act may be cited as the ‘‘Collaborative Academic 4 Research Efforts for Tourette Syndrome Act of 2019’’. 5 VerDate Sep 11 2014 19:26 Feb 21, 2019 Jkt 089200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\H1131.IH H1131 pamtmann on DSKBFK8HB2PROD with BILLS 2 •HR 1131 IH SEC. 2. PROGRAMS OF THE NATIONAL INSTITUTES OF 1 HEALTH RELATING TO TOURETTE SYN- 2 DROME. 3 Part B of title IV of the Public Health Service Act 4 is amended by inserting after section 409J (42 U.S.C. 5 284q) the following: 6 ‘‘SEC. 409K. EXPANSION, INTENSIFICATION, AND COORDI- 7 NATION OF ACTIVITIES WITH RESPECT TO 8 TOURETTE SYNDROME. 9 ‘‘(a) IN GENERAL.—The Secretary, acting through 10 the Director of NIH, shall expand, intensify, and coordi- 11 nate the programs and activities of the National Institutes 12 of Health with respect to scientific and clinical research 13 on 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 infor- 18 mation with respect to the incidence, prevalence, and 19 impact 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. 26 VerDate Sep 11 2014 19:26 Feb 21, 2019 Jkt 089200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H1131.IH H1131 pamtmann on DSKBFK8HB2PROD with BILLS 3 •HR 1131 IH ‘‘(3) COLLECTION BY POPULATION AND GEO- 1 GRAPHICAL REGION.—The data collection system 2 under paragraph (1) shall provide for the collection 3 of data on the availability of medical and social serv- 4 ices for individuals with Tourette syndrome and 5 their families and the disaggregation of such data by 6 population and geographical region. 7 ‘‘(c) COLLABORATIVE RESEARCH CENTERS FOR 8 TOURETTE SYNDROME.— 9 ‘‘(1) IN GENERAL.—In carrying out subsection 10 (a), the Secretary shall award grants and contracts 11 to public or nonprofit private entities to pay all or 12 part of the cost of planning, establishing, improving, 13 and providing basic operating support for Collabo- 14 rative Research Centers for Tourette Syndrome. 15 ‘‘(2) RESEARCH.—Each center under para- 16 graph (1) shall conduct basic and clinical research 17 into Tourette syndrome. Such research should in- 18 clude investigations into the cause, diagnosis, early 19 detection, prevention, control, and treatment of 20 Tourette syndrome. The research conducted by such 21 centers, as a group, shall include research in the 22 fields of developmental neurobiology, neuroscience, 23 genetics, psychology, and pharmacology. 24 ‘‘(3) SERVICES FOR PATIENTS.— 25 VerDate Sep 11 2014 19:26 Feb 21, 2019 Jkt 089200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H1131.IH H1131 pamtmann on DSKBFK8HB2PROD with BILLS 4 •HR 1131 IH ‘‘(A) IN GENERAL.—A center under para- 1 graph (1) may expend amounts provided under 2 such paragraph to carry out a program to make 3 individuals aware of opportunities to participate 4 as subjects in research conducted by the cen- 5 ters. 6 ‘‘(B) REFERRAL AND COSTS.—A program 7 under subparagraph (A) may, in accordance 8 with such criteria as the Secretary may estab- 9 lish, provide to the subjects described in such 10 subparagraph, referrals for health and other 11 services, and such patient care costs as are re- 12 quired for research. 13 ‘‘(C) AVAILABILITY AND ACCESS.—The ex- 14 tent to which a center can demonstrate avail- 15 ability and access to clinical services shall be 16 considered by the Secretary in decisions about 17 awarding grants and contracts to applicants 18 which meet the scientific criteria for funding 19 under this subsection. 20 ‘‘(4) ORGANIZATION OF COLLABORATIVE RE- 21 SEARCH CENTERS FOR TOURETTE SYNDROME.— 22 ‘‘(A) IN GENERAL.—A center under para- 23 graph (1) may— 24 VerDate Sep 11 2014 19:26 Feb 21, 2019 Jkt 089200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H1131.IH H1131 pamtmann on DSKBFK8HB2PROD with BILLS 5 •HR 1131 IH ‘‘(i) use the facilities of a single insti- 1 tution; or 2 ‘‘(ii) be formed from a consortium of 3 cooperating institutions and patient advo- 4 cacy groups in order to maximize the scope 5 of the center’s services and geographic cov- 6 erage. 7 ‘‘(B) ELIGIBILITY REQUIREMENTS.—To be 8 eligible to make facilities so available (as de- 9 scribed in subparagraph (A)(i)) or participate 10 in such a consortium (as described in subpara- 11 graph (A)(ii)), an institution or group shall 12 meet such requirements as the Secretary may 13 prescribe. 14 ‘‘(5) NUMBER OF CENTERS; DURATION OF SUP- 15 PORT.— 16 ‘‘(A) IN GENERAL.—Subject to the avail- 17 ability of appropriations, the Secretary shall 18 provide for the establishment of not fewer than 19 4 and not more than 6 centers under paragraph 20 (1). 21 ‘‘(B) GEOGRAPHICAL DISTRIBUTION.—The 22 Secretary shall— 23 ‘‘(i) ensure that each of the centers 24 established under paragraph (1) is located 25 VerDate Sep 11 2014 19:26 Feb 21, 2019 Jkt 089200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H1131.IH H1131 pamtmann on DSKBFK8HB2PROD with BILLS 6 •HR 1131 IH in a different region of the United States 1 than other such centers; and 2 ‘‘(ii) encourage the formation of such 3 centers from a consortium of entities (as 4 described in paragraph (4)(A)(ii)) covering 5 multiple regions or States. 6 ‘‘(C) DURATION.—Support for a center es- 7 tablished under paragraph (1) may be provided 8 under this section for a period not to exceed 5 9 years. Such period may be extended for one or 10 more additional periods not exceeding 5 years if 11 the operations of such center have been re- 12 viewed and approved by an appropriate tech- 13 nical and scientific peer review group estab- 14 lished by the Secretary and if such group has 15 recommended to the Secretary that such period 16 should be extended. 17 ‘‘(d) RESEARCH ON SYMPTOMOLOGY AND TREAT- 18 MENT.—In carrying out subsection (a), the Secretary shall 19 award grants on a competitive, peer-reviewed basis for re- 20 search on— 21 ‘‘(1) the full range of symptomology within the 22 Tourette syndrome clinical spectrum; and 23 ‘‘(2) the efficacy of treatment options for par- 24 ticular patient subpopulations. 25 VerDate Sep 11 2014 19:26 Feb 21, 2019 Jkt 089200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\H1131.IH H1131 pamtmann on DSKBFK8HB2PROD with BILLS 7 •HR 1131 IH ‘‘(e) FUNDING.—Of the amounts made available to 1 carry out the programs and activities of the National In- 2 stitutes of Health for a fiscal year, the Secretary shall des- 3 ignate a portion of such amounts for carrying out the pro- 4 grams and activities of the National Institutes of Health 5 with respect to Tourette syndrome.’’. 6 Æ VerDate Sep 11 2014 19:26 Feb 21, 2019 Jkt 089200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6301 E:\BILLS\H1131.IH H1131 pamtmann on DSKBFK8HB2PROD with BILLS