H. R. 717—6
SEC. 4. DEVELOPMENT AND EXPANSION OF ACTIVITIES OF CENTERS
FOR 
DISEASE 
CONTROL 
AND 
PREVENTION 
WITH
RESPECT TO EPIDEMIOLOGICAL RESEARCH ON MUS-
CULAR DYSTROPHY.
Part B of title III of the Public Health Service Act (42 U.S.C.
243 et seq.) is amended by inserting after section 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 Prevention, may award
grants and cooperative agreements 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 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
EPIDEMIOLOGY
PRO-
GRAM.—The Secretary, acting through the Director of the Centers
for Disease Control and Prevention, may award grants to public
or nonprofit private entities (including health departments of States
and political subdivisions of States, and including universities and
other educational entities) for the purpose of carrying out
epidemiological activities regarding Duchenne and other forms of
muscular dystrophies, including collecting and analyzing informa-
tion on the number, incidence, correlates, and symptoms of cases.
In carrying out the preceding sentence, the Secretary shall provide
for a national surveillance program. In making awards under this
subsection, the Secretary may provide direct technical assistance
in lieu of cash.
‘‘(c) COORDINATION WITH CENTERS OF EXCELLENCE.—The Sec-
retary shall ensure that epidemiological information under sub-
sections (a) and (b) is made available to centers of excellence sup-
ported 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 ‘‘Secretary’’) shall establish and
implement a program to provide information and education on
muscular dystrophy to health professionals and the general public,
including information and education on advances in the diagnosis
and treatment of muscular dystrophy and training and continuing
education through programs for scientists, physicians, medical stu-
dents, 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.
H. R. 717—7
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 commit-
tees of Congress, a report concerning the implementation of this
Act and the amendments 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 Institute 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 National Institutes of Health.
(b) AREAS OF REVIEW.—In conducting the study under sub-
section (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 description of such areas)
and the relationship of this form of funding mechanism to
other forms of funding for research grants, including investi-
gator initiated research, contracts and other types of research
support awards.
(2) The distinctive aspects of Centers of Excellence,
including the additional knowledge that may be expected to
be gained through Centers of Excellence as compared to other
forms of grant or contract mechanisms.
(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 comparison 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 Excellence may not be helpful.
(5) Criteria that may be applied in determining when Cen-
ters of Excellence are an appropriate and cost-effective research
investment and conditions that should be present in order
to consider the establishment of Centers of Excellence.
(6) Alternative research models that may accomplish
results similar to or greater than Centers of Excellence.
(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
H. R. 717—8
and the appropriate committees of Congress that contains the
results of such study.
Speaker of the House of Representatives.
Vice President of the United States and
President of the Senate.