I
106TH CONGRESS
1ST SESSION
H. R. 1445
To promote research into, and the development of an ultimate cure for,
the disease known as fragile X.
IN THE HOUSE OF REPRESENTATIVES
APRIL 15, 1999
Mr. DELAHUNT (for himself and Mr. WATKINS) introduced the following bill;
which was referred to the Committee on Commerce
A BILL
To promote research into, and the development of an
ultimate cure for, the disease known as fragile X.
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ‘‘Fragile X Research
Breakthrough Act of 1999’’.
SEC. 2. FINDINGS.
The Congress finds as follows:
(1) Fragile X is the most common inherited
cause of mental retardation. It affects one in every
SEC. 3. NATIONAL INSTITUTE OF CHILD HEALTH AND
HUMAN DEVELOPMENT; RESEARCH ON FRAG-
ILE X.
Subpart 7 of part C of title IV of the Public Health
Service Act (42 U.S.C. 285g et seq.) is amended by adding
at the end the following section:
‘‘FRAGILE X
‘‘SEC. 452E. (a) EXPANSION AND COORDINATION OF
RESEARCH ACTIVITIES.—The Director of the Institute,
after consultation with the advisory council for the Insti-
tute, shall expand, intensify, and coordinate the activities
of the Institute with respect to research on the disease
known as fragile X.
‘‘(b) RESEARCH CENTERS.—
‘‘(1) IN GENERAL.—The Director of the Insti-
tute, after consultation with the advisory council for
the Institute, shall make grants to, or enter into
contracts with, public or nonprofit private entities
for the development and operation of centers to con-
duct research for the purposes of improving the di-
agnosis and treatment of, and finding the cure for,
fragile X.
‘‘(2) NUMBER OF CENTERS.—In carrying out
paragraph (1), the Director of the Institute shall, to
the extent that amounts are appropriated, provide
for the establishment of at least three fragile X re-
search centers.
‘‘(3) ACTIVITIES.—
‘‘(A) IN GENERAL.—Each center assisted
under paragraph (1) shall, with respect to frag-
ile X—
‘‘(i) conduct basic and clinical re-
search, which may include clinical trials
of—
‘‘(I) new or improved diagnostic
methods; and
‘‘(II) drugs or other treatment
approaches; and
‘‘(ii) conduct research to find a cure.
‘‘(B) FEES.—A center may use funds pro-
vided under paragraph (1) to provide fees to in-
dividuals serving as subjects in clinical trials
conducted under subparagraph (A).
‘‘(4) COORDINATION
AMONG
CENTERS.—The
Director of the Institute shall, as appropriate, pro-
vide for the coordination of the activities of the cen-
ters assisted under this section, including providing
for the exchange of information among the centers.
‘‘(5) 
CERTAIN
ADMINISTRATIVE
REQUIRE-
MENTS.—Each center assisted under paragraph (1)
shall use the facilities of a single institution, or be
formed from a consortium of cooperating institu-
tions, meeting such requirements as may be pre-
scribed by the Director of the Institute.
‘‘(6) DURATION OF SUPPORT.—Support may be
provided to a center under paragraph (1) for a pe-
riod not exceeding 5 years. Such period may be ex-
tended 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.
‘‘(7) AUTHORIZATION
OF
APPROPRIATIONS.—
For the purpose of carrying out this subsection,
there are authorized to be appropriated $10,000,000
for fiscal year 2000, and such sums as may be nec-
essary for each subsequent fiscal year.’’.
SEC. 4. NATIONAL INSTITUTE OF CHILD HEALTH AND
HUMAN DEVELOPMENT; LOAN REPAYMENT
PROGRAM REGARDING RESEARCH ON FRAG-
ILE X.
Part G of title IV of the Public Health Service Act
(42 U.S.C. 288 et seq.) is amended by inserting after sec-
tion 487E the following section:
‘‘LOAN REPAYMENT PROGRAM REGARDING RESEARCH ON
FRAGILE X
‘‘SEC. 487F. (a) IN GENERAL.—The Secretary, in
consultation with the Director of the National Institute
of Child Health and Human Development, shall establish
a program under which the Federal Government enters
into contracts with qualified health professionals (includ-
ing graduate students) who agree to conduct research re-
garding fragile X in consideration of the Federal Govern-
ment’s agreement to repay, for each year of such service,
not more than $35,000 of the principal and interest of
the educational loans owed by such health professionals.
‘‘(b) APPLICABILITY
OF CERTAIN PROVISIONS.—
With respect to the National Health Service Corps Loan
Repayment Program established in subpart III of part D
of title III, the provisions of such subpart (including sec-
tion 338B(g)(3)) shall, except as inconsistent with sub-
section (a) of this section, apply to the program estab-
lished in such subsection in the same manner and to the
same extent as such provisions apply to the National
Health Service Corps Loan Repayment Program estab-
lished in such subpart.
‘‘(c) AUTHORIZATION OF APPROPRIATIONS.—For the
purpose of carrying out this section, there are authorized
to be appropriated $2,000,000 for fiscal year 2000, and
such sums as may be necessary for each subsequent fiscal
year. Amounts appropriated for a fiscal year under the
preceding sentence remain available until the expiration
of the second fiscal year beginning after the fiscal year
for which the amounts were appropriated.’’.
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