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S. 637 (113th): Collaborative Academic Research Efforts for Tourette Syndrome Act of 2013


The text of the bill below is as of Mar 21, 2013 (Introduced).


II

113th CONGRESS

1st Session

S. 637

IN THE SENATE OF THE UNITED STATES

March 21, 2013

introduced the following bill; which was read twice and referred to theCommittee on Health, Education, Labor, and Pensions

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 2013 .

2.

Programs of the National Institutes of Health relating to Tourette syndrome

Part B of title IV of the Public Health Service Actis 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

TheSecretary, acting through theDirector of NIH, shall expand, intensify, and coordinate the programs and activities of theNational Institutes of Healthwith respect to Tourette syndrome.

(b)

Data collection

(1)

System

In carrying outsubsection (a), theSecretaryshall develop a system to collect data on Tourette syndrome, including epidemiologic information with respect to the incidence and prevalence of Tourette syndrome in the United States.

(2)

Broad and narrow definitions

The data collection system underparagraph (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 underparagraph (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)

Centers of Excellence

(1)

In general

In carrying outsubsection (a), theSecretaryshall make awards of 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 centers of excellence regarding research on Tourette syndrome.

(2)

Research

Each center underparagraph (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 centers, as a group, shall conduct research including the fields of de­vel­op­men­tal neurobiology, genetics, and psy­cho­phar­ma­col­o­gy.

(3)

Services for patients

(A)

In general

A center underparagraph (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 undersubparagraph (A)may, in accordance with such criteria as theSecretarymay 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 theSecretaryin decisions about awarding grants to applicants which meet the scientific criteria for funding under this section.

(4)

Organization of centers

(A)

In general

A center underparagraph (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 insubparagraph (A)(i)) or participate in such a consortium (as described insubparagraph (B)), an institution or group shall meet such requirements as theSecretarymay prescribe.

(5)

Number of centers; duration of support

(A)

In general

Subject to the availability of appropriations, theSecretaryshall provide for the establishment of not fewer than four and not more than six centers underparagraph (1).

(B)

Geographical distribution

TheSecretaryshall—

(i)

ensure that each of the centers established underparagraph (1)is located in a different region of the United States than the other such centers; and

(ii)

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

(C)

Duration

Support for a center established underparagraph (1)may be provided under this section for a period of 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 by an appropriate technical and scientific peer review group established by theSecretaryand if such group has recommended to theSecretarythat such period should be extended.

(d)

Research on symptomology and treatment

In carrying outsubsection (a), theSecretaryshall award grants on a competitive 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 theNational Institutes of Healthfor a fiscal year, theSecretaryshall designate a portion of such amounts for carrying out the programs and activities of theNational Institutes of Healthwith respect to Tourette syndrome.

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