three other major cooperative agreements have been 
awarded for highly targeted therapy development 
projects in the muscular dystrophies. 
(11) Advancements in care have helped prolong 
life and quality of life for patients with muscular 
dystrophy. 
(12) There remains a shortage of qualified re-
searchers in the field of muscular dystrophy re-
search. Many family physicians and health care pro-
fessionals still lack the knowledge and resources to 
detect and properly diagnose muscular dystrophy as 
early as possible, thus delaying management of 
symptoms 
in 
cases 
that 
go 
undetected 
or 
misdiagnosed. 
(13) As new understandings of the genetic basis 
for disease and potential treatment has emerged, the 
public and health care communities are in urgent 
need of education and outreach to ensure competent, 
informed engagement in genetic testing and coun-
seling and appropriate patient characterization so 
that patients are able to participate in new avenues 
of research and clinical trials. 
(14) As basic research into the muscular dys-
trophies points the way to new therapeutic targets, 
there is an urgent need to support the clinical re-
search infrastructure necessary to bring these thera-
peutic leads to human trials; these infrastructure 
needs include validated endpoints, current natural 
history studies, biomarkers, clinical research net-
works, patient registries and databases. 
(15) In order to improve lives and develop effec-
tive treatments for individuals with muscular dys-
trophy, there must be improved communications and 
partnerships between patients, patient advocacy, re-
searchers, and clinical care providers. To that end, 
renewed effort to work together by all parties is a 
critical element for successful outcomes in the years 
to come. 
(16) Continued focus and investment are re-
quired to build on the current momentum, respond 
to public need, and ensure that research and other 
innovation is translated to therapeutic targets as 
quickly as possible. 
SEC. 3. EXPANSION, INTENSIFICATION, AND COORDINA-
TION OF ACTIVITIES OF NIH WITH RESPECT 
TO RESEARCH ON MUSCULAR DYSTROPHY. 
(a) TECHNICAL CORRECTION.—Section 404E of the 
Public Health Service Act (42 U.S.C. 283g) is amended 
by striking subsection (f) (relating to reports to Congress) 
and redesignating subsection (g) as subsection (f).
(b) AMENDMENTS.—Section 404E of the Public 
Health Service Act (42 U.S.C. 283g) is amended— 
(1) in subsection (a)(1), by inserting ‘‘the Na-
tional Heart, Lung, and Blood Institute,’’ after ‘‘the 
Eunice Kennedy Shriver National Institute of Child 
Health and Human Development,’’; 
(2) in subsection (b)(1), by adding at the end 
of the following: ‘‘Such centers of excellence shall be 
known as the ‘Paul D. Wellstone Muscular Dys-
trophy Cooperative Research Centers’.’’; and 
(3) by adding at the end the following: 
‘‘(g) CLINICAL RESEARCH.—The Coordinating Com-
mittee may evaluate the potential need to enhance the clin-
ical research infrastructure required to test emerging 
therapies for the various forms of muscular dystrophy by 
prioritizing the achievement of the goals related to this 
topic in the plan under subsection (e)(1).’’. 
SEC. 4. DEVELOPMENT AND EXPANSION OF ACTIVITIES OF 
CDC WITH RESPECT TO EPIDEMIOLOGICAL 
RESEARCH ON MUSCULAR DYSTROPHY. 
Section 317Q of the Public Health Service Act (42 
U.S.C. 247b–18) is amended— 
(1) by redesignating subsection (d) as sub-
section (f); and
(2) by inserting after subsection (c) the fol-
lowing: 
‘‘(d) DATA.—In carrying out this section, the Sec-
retary shall ensure that any data on patients that is col-
lected as part of the Muscular Dystrophy STARnet (under 
a grant under this section) is regularly updated to reflect 
changes in patient condition over time. 
‘‘(e) REPORTS AND STUDY.— 
‘‘(1) ANNUAL
REPORT.—Not later than 18 
months after the date of the enactment of the Paul 
D. Wellstone Muscular Dystrophy Community As-
sistance, Research, and Education Amendments of 
2008, and annually thereafter, the Director of the 
Centers for Disease Control and Prevention shall 
submit to the appropriate committees of the Con-
gress a report— 
‘‘(A) concerning the activities carried out 
by MD STARnet site funded under this section 
during the year for which the report is pre-
pared; 
‘‘(B) containing the data collected and 
findings derived from the MD STARnet sites 
each fiscal year (as funded under a grant under 
this section during fiscal years 2008 through 
2012); and
‘‘(C) that every 2 years outlines prospec-
tive data collection objectives and strategies. 
‘‘(2) TRACKING HEALTH OUTCOMES.—The Di-
rector of the Centers for Disease Control and Pre-
vention shall provide health outcome data on the 
health and survival of people with muscular dys-
trophy.’’. 
SEC. 5. INFORMATION AND EDUCATION. 
Section 5 of the Muscular Dystrophy Community As-
sistance, Research and Education Amendments of 2001 
(42 U.S.C. 247b–19) is amended— 
(1) by redesignating subsection (c) as sub-
section (d); and 
(2) by inserting after subsection (b) the fol-
lowing: 
‘‘(c) REQUIREMENTS OF CDC.—In carrying out this 
section, the Director of the Centers for Disease Control 
and Prevention shall— 
‘‘(1) partner with leaders in the muscular dys-
trophy patient community; and 
‘‘(2) widely disseminate the Duchenne-Becker 
muscular dystrophy care considerations as broadly 
as possible, including through partnership opportuni-
ties with the muscular dystrophy patient commu-
nity.’’.
SEC. 6. STANDARDS OF CARE. 
Part A of title IX of the Public Health Service Act 
(42 U.S.C. 299 et seq.) is amended by adding at the end 
the following: 
‘‘SEC. 904. STANDARDS OF CARE RELATING TO MUSCULAR 
DYSTROPHY. 
‘‘The Director— 
‘‘(1) shall evaluate the available scientific evi-
dence for the appropriate medical or patient organi-
zations for purposes of the development and 
issuance of an initial set of care considerations for 
Duchenne-Becker muscular dystrophy and provide 
periodic review and updates where appropriate; and 
‘‘(2) may replicate the same methodology used 
to develop the Duchenne-Becker muscular dystrophy 
care considerations developed under paragraph (1) 
as a model for other muscular dystrophies.’’. 
Passed the House of Representatives September 24, 
2008. 
Attest: 
Clerk.