priated to carry out this section for each fiscal year
among the national research institutes referred to in
paragraph (1).
‘‘(b) CENTERS OF EXCELLENCE.—
‘‘(1) IN GENERAL.—The Director of NIH shall
award grants and contracts under subsection (a)(1)
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 various forms of
muscular dystrophy.
‘‘(2) RESEARCH.—Each center under para-
graph (1) shall supplement but not replace the es-
tablishment of a comprehensive research portfolio in
all the muscular dystrophies. As a whole, the centers
shall conduct basic and clinical research in all forms
of muscular dystrophy including early detection, di-
agnosis, prevention, and treatment, including the
fields of muscle biology, genetics, noninvasive imag-
ing, genetics, pharmacological and other therapies.
‘‘(3) COORDINATION OF CENTERS; REPORTS.—
The Director of NIH—
‘‘(A) shall, as appropriate, provide for the
coordination of information among centers
under paragraph (1) and ensure regular com-
munication between such centers; and
‘‘(B) shall require the periodic preparation
of reports on the activities of the centers and
the submission of the reports to the Director.
‘‘(4) ORGANIZATION OF CENTERS.—Each cen-
ter 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 NIH.
‘‘(5) DURATION OF SUPPORT.—Support for a
center established under paragraph (1) may be pro-
vided under this section for a period of not to exceed
5 years. Such period may be extended for 1 or more
additional periods not exceeding 5 years if the oper-
ations of such center have been reviewed by an ap-
propriate technical and scientific peer review group
established by the Director of NIH and if such
group has recommended to the Director that such
period should be extended.
‘‘(c) FACILITATION OF RESEARCH.—The Director of
NIH shall provide for a program under subsection (a)(1)
under which samples of tissues and genetic materials that
are of use in research on muscular dystrophy are donated,
collected, preserved, and made available for such research.
The program shall be carried out in accordance with ac-
cepted scientific and medical standards for the donation,
collection, and preservation of such samples.
‘‘(d) COORDINATING COMMITTEE.—
‘‘(1) IN GENERAL.—The Secretary shall estab-
lish the Muscular Dystrophy Coordinating Com-
mittee (referred to in this section as the ‘Coordi-
nating Committee’) to coordinate activities across
the National Institutes and with other Federal
health programs and activities relating to the var-
ious forms of muscular dystrophy.
‘‘(2) COMPOSITION.—The Coordinating Com-
mittee shall consist of not more than 15 members to
be appointed by the Secretary, of which—
‘‘(A) 2⁄3 of such members shall represent
governmental agencies, including the directors
or their designees of each of the national re-
search institutes involved in research with re-
spect to muscular dystrophy and representatives
of all other Federal departments and agencies
whose programs involve health functions or re-
sponsibilities relevant to such diseases, includ-
ing the Centers for Disease Control and Pre-
vention, the Health Resources and Services Ad-
ministration and the Food and Drug Adminis-
tration and representatives of other govern-
mental agencies that serve children with mus-
cular dystrophy, such as the Department of
Education; and
‘‘(B) 1⁄3 of such members shall be public
members, including a broad cross section of
persons affected with muscular dystrophies in-
cluding parents or legal guardians, affected in-
dividuals, researchers, and clinicians.
Members appointed under subparagraph (B) shall
serve for a term of 3 years, and may serve for an
unlimited number of terms if reappointed.
‘‘(3) CHAIR.—
‘‘(A) IN GENERAL.—With respect to mus-
cular dystrophy, the Chair of the Coordinating
Committee shall serve as the principal advisor
to the Secretary, the Assistant Secretary for
Health, and the Director of NIH, and shall pro-
vide advice to the Director of the Centers for
Disease Control and Prevention, the Commis-
sioner of Food and Drugs, and to the heads of
other relevant agencies. The Coordinating Com-
mittee shall select the Chair for a term not to
exceed 2 years.
‘‘(B) APPOINTMENT.—The Chair of the
Committee shall be appointed by and be directly
responsible to the Secretary.
‘‘(4) ADMINISTRATIVE
SUPPORT; TERMS
OF
SERVICE; OTHER PROVISIONS.—The following shall
apply with respect to the Coordinating Committee:
‘‘(A) The Coordinating Committee shall re-
ceive necessary and appropriate administrative
support from the Department of Health and
Human Services.
‘‘(B) The Coordinating Committee shall
meet as appropriate as determined by the Sec-
retary, in consultation with the chair.
‘‘(e) PLAN FOR HHS ACTIVITIES.—
‘‘(1) IN GENERAL.—Not later than 1 year after
the date of enactment of this section, the Coordi-
nating Committee shall develop a plan for con-
ducting and supporting research and education on
muscular dystrophy through the national research
institutes and shall periodically review and revise the
plan. The plan shall—
‘‘(A) provide for a broad range of research
and education activities relating to biomedical,
epidemiological, psychosocial, and rehabilitative
issues, including studies of the impact of such
diseases in rural and underserved communities;
‘‘(B) identify priorities among the pro-
grams and activities of the National Institutes
of Health regarding such diseases; and
‘‘(C) reflect input from a broad range of
scientists, patients, and advocacy groups.
‘‘(2) CERTAIN ELEMENTS OF PLAN.—The plan
under paragraph (1) shall, with respect to each form
of muscular dystrophy, provide for the following as
appropriate:
‘‘(A) Research to determine the reasons
underlying the incidence and prevalence of var-
ious forms of muscular dystrophy.
‘‘(B) Basic research concerning the eti-
ology and genetic links of the disease and po-
tential causes of mutations.
‘‘(C) The development of improved screen-
ing techniques.
‘‘(D) Basic and clinical research for the
development and evaluation of new treatments,
including new biological agents.
‘‘(E) Information and education programs
for health care professionals and the public.
‘‘(f) REPORTS
TO CONGRESS.—The Coordinating
Committee shall biennially submit to the Committee on
Energy and Commerce of the House of Representatives,
and the Committee on Health, Education, Labor, and
Pensions of the Senate, a report that describes the re-
search, education, and other activities on muscular dys-
trophy being conducted or supported through the Depart-
ment of Health and Human Services. Each such report
shall include the following:
‘‘(1) The plan under subsection (e)(1) (or revi-
sions to the plan, as the case may be).
‘‘(2) Provisions specifying the amounts ex-
pended by the Department of Health and Human
Services with respect to various forms of muscular
dystrophy, including Duchenne, myotonic, FSHD
and other forms of muscular dystrophy.
‘‘(3) Provisions identifying particular projects
or types of projects that should in the future be con-
sidered by the national research institutes or other
entities in the field of research on all muscular dys-
trophies.
‘‘(g) PUBLIC INPUT.—The Secretary shall, under
subsection (a)(1), provide for a means through which the
public can obtain information on the existing and planned
programs and activities of the Department of Health and
Human Services with respect to various forms of muscular
dystrophy and through which the Secretary can receive
comments from the public regarding such programs and
activities.
‘‘(h) AUTHORIZATION OF APPROPRIATIONS.—For the
purpose of carrying out this section, there are authorized
to be appropriated such sums as may be necessary for
each of fiscal years 2002 through 2006. The authorization
of appropriations established in the preceding sentence is
in addition to any other authorization of appropriations
that is available for conducting or supporting through the
National Institutes of Health research and other activities
with respect to muscular dystrophy.’’.
SEC. 4. DEVELOPMENT AND EXPANSION OF ACTIVITIES OF
CENTERS FOR DISEASE CONTROL AND PRE-
VENTION WITH RESPECT TO EPIDEMIOLOG-
ICAL RESEARCH ON MUSCULAR DYSTROPHY.
Part B of title III of the Public Health Service Act
(42 U.S.C. 243 et seq.) is amended by inserting after sec-
tion 317P the following:
‘‘SEC. 317Q. SURVEILLANCE AND RESEARCH REGARDING
MUSCULAR DYSTROPHY.
‘‘(a) IN GENERAL.—The Secretary, acting through
the Director of the Centers for Disease Control and Pre-
vention, may award grants and cooperative agreements to
public or nonprofit private entities (including health de-
partments of States and political subdivisions of States,
and including universities and other educational entities)
for the collection, analysis, and reporting of data on
Duchenne and other forms of muscular dystrophy. In
making such awards, the Secretary may provide direct
technical assistance in lieu of cash.
‘‘(b) NATIONAL MUSCULAR DYSTROPHY EPIDEMI-
OLOGY PROGRAM.—The Secretary, acting through the Di-
rector of the Centers for Disease Control and Prevention,
may award grants to public or nonprofit private entities
(including health departments of States and political sub-
divisions of States, and including universities and other
educational entities) for the purpose of carrying out epide-
miological activities regarding Duchenne and other forms
of muscular dystrophies, including collecting and ana-
lyzing information on the number, incidence, correlates,
and symptoms of cases. In carrying out the preceding sen-
tence, the Secretary shall provide for a national surveil-
lance program. In making awards under this subsection,
the Secretary may provide direct technical assistance in
lieu of cash.
‘‘(c) COORDINATION WITH CENTERS
OF EXCEL-
LENCE.—The Secretary shall ensure that epidemiological
information under subsections (a) and (b) is made avail-
able to centers of excellence supported under section
404E(b) by the Director of the National Institutes of
Health.
‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—There
are authorized to be appropriated such sums as may be
necessary to carry out this section.’’.
SEC. 5. INFORMATION AND EDUCATION.
(a) IN GENERAL.—The Secretary of Health and
Human Services (referred to in this Act as the ‘‘Sec-
retary’’) shall establish and implement a program to pro-
vide information and education on muscular dystrophy to
health professionals and the general public, including in-
formation and education on advances in the diagnosis and
treatment of muscular dystrophy and training and con-
tinuing education through programs for scientists, physi-
cians, medical students, and other health professionals
who provide care for patients with muscular dystrophy.
(b) STIPENDS.—The Secretary may use amounts
made available under this section provides stipends for
health professionals who are enrolled in training programs
under this section.
(c) AUTHORIZATION
OF APPROPRIATIONS.—There
are authorized to be appropriated such sums as may be
necessary to carry out this section.
SEC. 6. REPORT TO CONGRESS.
Not later than January 1, 2003, and each January
1 thereafter, the Secretary shall prepare and submit to
the appropriate committees of Congress, a report con-
cerning the implementation of this Act and the amend-
ments made by this Act.
Passed the House of Representatives September 24,
2001.
Attest:
Clerk.