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 providing 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.
SEC. 7. STUDY ON THE USE OF CENTERS OF EXCELLENCE
AT THE NATIONAL INSTITUTES OF HEALTH.
(a) REVIEW.—Not later than 60 days after the date
of enactment of this Act, the Secretary of Health and
Human Services shall enter into a contract with the Insti-
tute of Medicine for the purpose of conducting a study and
making recommendations on the impact of, need for, and
other issues associated with Centers of Excellence at the Na-
tional Institutes of Health.
(b) AREAS
OF REVIEW.—In conducting the study
under subsection (a), the Institute of Medicine shall at a
minimum consider the following:
(1) The current areas of research incorporating
Centers of Excellence (which shall include a descrip-
tion of such areas) and the relationship of this form
of funding mechanism to other forms of funding for
research grants, including investigator initiated re-
search, contracts and other types of research support
awards.
(2) The distinctive aspects of Centers of Excel-
lence, including the additional knowledge that may be
expected to be gained through Centers of Excellence as
compared to other forms of grant or contract mecha-
nisms.
(3) The costs associated with establishing and
maintaining Centers of Excellence, and the record of
scholarship and training resulting from such Centers.
The research and training contributions of Centers
should be assessed on their own merits and in com-
parison with other forms of research support.
(4) Specific areas of research in which Centers of
Excellence may be useful, needed, or underused, as
well as areas of research in which Centers of Excel-
lence may not be helpful.
(5) Criteria that may be applied in determining
when Centers of Excellence are an appropriate and
cost-effective research investment and conditions that
should be present in order to consider the establish-
ment of Centers of Excellence.
(6) Alternative research models that may accom-
plish results similar to or greater than Centers of Ex-
cellence.
(c) REPORT.—Not later than 1 year after the date on
which the contract is entered into under subsection (a), the
Institute of Medicine shall complete the study under such
subsection and submit a report to the Secretary of Health
and Human Services and the appropriate committees of
Congress that contains the results of such study.
Calendar No. 208
107TH CONGRESS
1ST SESSION
H. R. 717
AN ACT
To amend the Public Health Service Act to provide
for research with respect to various forms of
muscular dystrophy, including Duchenne, Becker,
limb 
girdle, 
congenital, 
facioscapulohumeral,
myotonic, oculopharyngeal, distal, and Emery-
Dreifuss muscular dystrophies.
OCTOBER 30, 2001
Reported with an amendment