IN THE SENATE OF THE UNITED STATES
March 21, 2013
Mr. Menendezintroduced the following bill; which was read twice and referred to theCommittee on Health, Education, Labor, and Pensions
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.
This Act may be cited as the
Collaborative Academic Research
Efforts for Tourette Syndrome Act of 2013
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:
Expansion, intensification, and coordination of activities with respect to Tourette syndrome
TheSecretary, acting through theDirector of NIH, shall expand, intensify, and coordinate the programs and activities of theNational Institutes of Healthwith respect to Tourette syndrome.
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.
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.
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.
Centers of Excellence
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.
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.
Services for patients
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.
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.
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.
Organization of centers
A center underparagraph (1)may—
use the facilities of a single institution; or
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.
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.
Number of centers; duration of support
Subject to the availability of appropriations, theSecretaryshall provide for the establishment of not fewer than four and not more than six centers underparagraph (1).
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
encourage the formation of such centers from a consortium of entities (as described inparagraph (4)(A)(ii)) covering multiple States.
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.
Research on symptomology and treatment
In carrying outsubsection (a), theSecretaryshall award grants on a competitive basis for research on—
the full range of symptomology within the Tourette syndrome clinical spectrum; and
the efficacy of treatment options for particular patient subpopulations.
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.