PRIA, Government Policy, Made Personal

§285g–9 Fragile X

Title 42 › Chapter 6A— PUBLIC HEALTH SERVICE › Subchapter III— NATIONAL RESEARCH INSTITUTES › Part C— Specific Provisions Respecting National Research Institutes › Subpart 7— eunice kennedy shriver national institute of child health and human development › § 285g–9

Last updated Apr 5, 2026|Official source

Summary

The Director of the Institute must expand, intensify, and coordinate research on fragile X after consulting the advisory council. The Director must make grants or contracts to set up and run research centers that work to improve diagnosis, treatment, and to find a cure. At least three centers must be established if money is provided. Grants or contracts can only go to centers recommended by the technical and scientific peer review required under section 289a. The Director will support basic and medical research with help from the centers, coordinate their work and information sharing, and require each center to be at one institution or a consortium that meets the Director’s rules. Support is for up to 5 years and may be extended in additional 5-year periods only after review and recommendation by a peer review group set up by the Director.

Title 42, §285g–9

The Public Health and Welfare, Source: USLM XML via OLRC

(a)The Director of the Institute, after consultation with the advisory council for the Institute, shall expand, intensify, and coordinate the activities of the Institute with respect to research on the disease known as fragile X.

(b)(1)The Director of the Institute shall make grants or enter into contracts for the development and operation of centers to conduct research for the purposes of improving the diagnosis and treatment of, and finding the cure for, fragile X.

(2)(A)In carrying out paragraph (1), the Director of the Institute shall, to the extent that amounts are appropriated, and subject to subparagraph (B), provide for the establishment of at least three fragile X research centers.

(B)The Director of the Institute shall make a grant to, or enter into a contract with, an entity for purposes of establishing a center under paragraph (1) only if the grant or contract has been recommended after technical and scientific peer review required by regulations under section 289a of this title.

(3)The Director of the Institute, with the assistance of centers established under paragraph (1), shall conduct and support basic and biomedical research into the detection and treatment of fragile X.

(4)The Director of the Institute shall, as appropriate, provide for the coordination of the activities of the centers assisted under this section, including providing for the exchange of information among the centers.

(5)Each center assisted under paragraph (1) shall use the facilities of a single institution, or be formed from a consortium of cooperating institutions, meeting such requirements as may be prescribed by the Director of the Institute.

(6)Support may be provided to a center under paragraph (1) for a period not exceeding 5 years. Such period may be extended for one or more additional periods, each of which may not exceed 5 years, if the operations of such center have been reviewed by an appropriate technical and scientific peer review group established by the Director and if such group has recommended to the Director that such period be extended.

Notes & Related Subsidiaries

Editorial Notes

Amendments

2007—Subsec. (b)(7). Pub. L. 109–482 struck out heading and text of par. (7). Text read as follows: “For the purpose of carrying out this subsection, there are authorized to be appropriated such sums as may be necessary for each of the fiscal years 2001 through 2005.”

Statutory Notes and Related Subsidiaries

Effective Date

of 2007 AmendmentAmendment by Pub. L. 109–482 applicable only with respect to amounts appropriated for fiscal year 2007 or subsequent fiscal years, see section 109 of Pub. L. 109–482, set out as a note under section 281 of this title.