H.R. 427House115th Congress (2017-2019)In Committee

Collaborative Academic Research Efforts for Tourette Syndrome Act of 2017

Introduced January 10, 2017

AI-Generated Summary

Updated April 15, 2026 at 11:34 AM UTC

The Collaborative Academic Research Efforts for Tourette Syndrome Act of 2017 amends the Public Health Service Act to strengthen NIH’s work on Tourette syndrome. It directs the creation of a national data system, establishes several regional research centers, and earmarks funding for coordinated research, patient services, and treatment studies. The bill targets NIH, research institutions, nonprofit partners, and ultimately people living with Tourette syndrome and their families.

Key Provisions

  • The Secretary of Health and Human Services, through the NIH Director, must expand, intensify, and coordinate NIH research programs focused on Tourette syndrome.
  • A national data‑collection system will be created to gather information on the incidence, prevalence, impact, comorbid conditions, and availability of medical and social services for people with Tourette syndrome, broken down by region and population groups.
  • The Secretary will fund 4 to 6 Collaborative Research Centers for Tourette Syndrome, which can be single‑institution sites or consortia that include patient‑advocacy groups, and each center may operate for up to five years (renewable after peer review).
  • These centers must conduct basic and clinical research into causes, diagnosis, early detection, prevention, and treatment of Tourette syndrome across fields such as genetics, neuroscience, psychology, and pharmacology.
  • Centers may also run programs to recruit research participants, provide referrals, and cover patient‑care costs needed for studies; the ability to offer such services will be considered when awarding grants.
  • Competitive, peer‑reviewed grants will be made for research on the full range of Tourette syndrome symptoms and on the effectiveness of treatments for specific patient subpopulations.
  • A portion of NIH’s annual budget will be set aside specifically for these Tourette‑focused programs and activities.

Legislative Activity

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2 earlier actions
HouseCommittee Latest Action

Referred to the Subcommittee on Health.

January 25, 2017

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HouseIntro Referral

Introduced in House

January 10, 2017

HouseIntro Referral

Referred to the House Committee on Energy and Commerce.

January 10, 2017

HouseCommittee

Referred to the Subcommittee on Health.

January 25, 2017

Floor Debate

24 members

What members said about H.R. 427 on the floor

13 Republicans11 Democrats
Henry C. "Hank" Johnson, Jr.

Mr. Chairman, I yield myself such time as I may consume. I listened intently to my colleague's opening remarks, and he seemed to try to justify the passage of the REINS Act, which I rise in…

Tom Marino
Rep. Tom MarinoR-PA-10 · Jan 5, 2017

Mr. Chairman, I rise today in strong support of the REINS Act. I would like to thank my colleague from Georgia (Mr. Collins) for taking charge of this bill in the 115th Congress and Judiciary…

Bob Goodlatte
Rep. Bob GoodlatteR-VA-6 · Jan 5, 2017

Mr. Speaker, I ask unanimous consent that all Members may have 5 legislative days in which to revise and extend their remarks and to include extraneous material on H.R. 26. Mr. Chairman, I yield…

John Conyers, Jr.
Rep. John Conyers, Jr.D-MI-13 · Jan 5, 2017

Mr. Chair, H.R. 26, the ``Regulations from the Executive in Need of Scrutiny Act of 2017,'' otherwise known as the REINS Act, would amend the Congressional Review Act to require that both Houses of…

Steve Cohen
Rep. Steve CohenD-TN-9 · Jan 5, 2017

Mr. Chairman, I don't know if I can live up to those words, but I certainly appreciate them. I was the ranking member on this committee, and I was chair at one point. We have had this bill over the…

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Jerrold Nadler
Rep. Jerrold NadlerD-NY-10 · Jan 5, 2017

Mr. Chairman, I have an amendment at the desk. Mr. Chairman, my amendment would exempt from the bill any regulations that pertain to nuclear reactor safety. In other words, my amendment would allow…

Steve King
Rep. Steve KingR-IA-4 · Jan 5, 2017

Mr. Chairman, I have an amendment at the desk made in order under the rule. Mr. Chairman, first, I want to say that I have been a long and strong supporter of the REINS Act. I want to compliment…

Kathy Castor
Rep. Kathy CastorD-FL-14 · Jan 5, 2017

Mr. Chairman, I have an amendment at the desk. Mr. Chairman, my amendment makes an important exemption to the REINS Act to ensure that policies that protect children from cancer, premature death,…

Jerry McNerney
Rep. Jerry McNerneyD-CA-9 · Jan 5, 2017

Mr. Chairman, I rise to offer amendment No. 10 as the designee of the gentleman from New Jersey (Mr. Pallone). Mr. Chairman, recent pipeline incidents have raised serious concerns about the condition…

Raúl M. Grijalva
Rep. Raúl M. GrijalvaD-AZ-3 · Jan 5, 2017

Mr. Chairman, I have an amendment at the desk. Mr. Chairman, for years my Republican friends have been trying to convince everyone that Federal agencies are scary and unpopular. In reality, Americans…

David N. Cicilline
Rep. David N. CicillineD-RI-1 · Jan 5, 2017

Mr. Chairman, I have an amendment at the desk. Mr. Chairman, my amendment to H.R. 26 would exempt rules concerning public health or safety from the burdensome requirements of this legislation. Simply…

Robert C. "Bobby" Scott
Rep. Robert C. "Bobby" ScottD-VA-3 · Jan 5, 2017

Mr. Chairman, I have an amendment at the desk. Mr. Chairman, my amendment would exempt from coverage under the REINS Act any rule which pertains to workplace health and safety made by the…

Thomas A. Garrett, Jr.
Rep. Thomas A. Garrett, Jr.R-VA-5 · Jan 5, 2017

Mr. Chairman, I rise today in support of the REINS Act, H.R. 26, for any number of reasons. I can't help but point out that I have heard my esteemed colleagues in opposition to this bill refer on…

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Luke Messer
Rep. Luke MesserR-IN-6 · Jan 5, 2017

Mr. Chair, I have an amendment at the desk. Mr. Chair, I thank the gentleman from Virginia for his help on this amendment as well. It is an amendment designed to take an already very good bill and…

Blake Farenthold
Rep. Blake FarentholdR-TX-27 · Jan 5, 2017

Mr. Chairman, our Founding Fathers intended for us to have a limited government. If they saw what we have today, they would be appalled. Our government has gotten huge. It is out of control, and an…

David A. Trott
Rep. David A. TrottR-MI-11 · Jan 5, 2017

Mr. Chairman, I thank Chairman Goodlatte for yielding me the time. Mr. Chairman, I rise today in strong support of H.R. 26, the REINS Act. In a minute, I want to share an experience I had a few…

David Young
Rep. David YoungR-IA-3 · Jan 5, 2017

Mr. Chairman, I rise today in support of the REINS Act, legislation that I and many of my colleagues are proud to have cosponsored to help bring expensive and expansive regulations under control.…

Mike Kelly
Rep. Mike KellyR-PA-3 · Jan 5, 2017

Mr. Chairman, I come from the private sector; so when I come to the House and I listen to the debate going back and forth, I almost feel like I am somebody not from a different planet, but from a…

Keith J. Rothfus
Rep. Keith J. RothfusR-PA-12 · Jan 5, 2017

Mr. Chairman, I thank Chairman Goodlatte for yielding. Mr. Chairman, I rise in strong support of H.R. 26, the REINS Act. This bill is the beginning of making America great again. That is because it…

Ted S. Yoho
Rep. Ted S. YohoR-FL-3 · Jan 5, 2017

Mr. Chairman, I stand here today with an urgent plea to my colleagues. We were elected by the good men and women of the United States who believe in our vision of America and who believe in our…

Leonard Lance
Rep. Leonard LanceR-NJ-7 · Jan 5, 2017

Mr. Chairman, I thank Chairman Goodlatte for his fine work on this important issue. Mr. Chairman, I rise today in strong support of the REINS Act because it fulfills a promise Congress made to…

Joe Courtney
Rep. Joe CourtneyD-CT-2 · Jan 5, 2017

Mr. Chairman, I rise in support of this amendment, which really is a life-or-death question before the Chamber. On February 7, 2010, a bunch of workers who were at a natural gas plant construction…

Mike Bishop
Rep. Mike BishopR-MI-8 · Jan 5, 2017

Mr. Chairman, I thank Chairman Goodlatte for all of his leadership on this matter. I rise today in strong support of H.R. 26, the REINS Act, which will restore the constitutional authority of…

Ed Perlmutter
Rep. Ed PerlmutterD-CO-7 · Jan 5, 2017

Mr. Chairman, the gentleman just spoke about liberty. My friend from Pennsylvania spoke about self-rule. Today we are talking about bureaucrats, but what we really should be talking about is the…

Bill Text

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Introduced in HouseIssued January 10, 2017

I

115th CONGRESS

1st Session

H. R. 427

IN THE HOUSE OF REPRESENTATIVES

January 10, 2017

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.

Short title

This Act may be cited as the Collaborative Academic Research Efforts for Tourette Syndrome Act of 2017.

2.

Programs of the National Institutes of Health relating to Tourette syndrome

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:

409K.

Expansion, intensification, and coordination of activities with respect to Tourette syndrome

(a)

In general

The Secretary, acting through the Director of NIH, shall expand, intensify, and coordinate 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 information 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.

(3)

Collection by population and geographical region

The data collection system under paragraph (1) shall provide for the collection of data on the availability of medical and social services 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 Collaborative Research Centers for Tourette Syndrome.

(2)

Research

Each center under paragraph (1) shall conduct basic and clinical research into Tourette syndrome. Such research should include 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

(A)

In general

A center under paragraph (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 centers.

(B)

Referral and costs

A program under subparagraph (A) may, in accordance with such criteria as the Secretary may establish, provide to the subjects described in such subparagraph, referrals for health and other services, and such patient care costs as are required for research.

(C)

Availability and access

The extent to which a center can demonstrate availability 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 Research Centers for Tourette Syndrome

(A)

In general

A center under paragraph (1) may—

(i)

use the facilities of a single institution; or

(ii)

be formed from a consortium of cooperating institutions and patient advocacy groups in order to maximize the scope of the center’s services and geographic coverage.

(B)

Eligibility requirements

To be eligible to make facilities so available (as described in subparagraph (A)(i)) or participate in such a consortium (as described in subparagraph (A)(ii)), an institution or group shall meet such requirements as the Secretary may prescribe.

(5)

Number of centers; duration of support

(A)

In general

Subject to the availability 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 in a different region of the United States than other such centers; and

(ii)

encourage the formation of such centers from a consortium of entities (as described in paragraph (4)(A)(ii)) covering multiple regions or States.

(C)

Duration

Support for a center established under paragraph (1) may be provided under this section for a period 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 and approved by an appropriate technical and scientific peer review group established by the Secretary and if such group has recommended to the Secretary that such period should be extended.

(d)

Research on symptomology and treatment

In carrying out subsection (a), the Secretary shall award grants on a competitive, peer-reviewed basis for research on—

(1)

the full range of symptomology within the Tourette syndrome clinical spectrum; and

(2)

the efficacy of treatment options for particular patient subpopulations.

(e)

Funding

Of the amounts made available to carry out the programs and activities of the National Institutes of Health for a fiscal year, the Secretary shall designate a portion of such amounts for carrying out the programs and activities of the National Institutes of Health with respect to Tourette syndrome.

.