H. R. 5265 
One Hundred Tenth Congress 
of the 
United States of America 
AT THE SECOND SESSION 
Begun and held at the City of Washington on Thursday, 
the third day of January, two thousand and eight 
An Act 
To amend the Public Health Service Act to provide for research with respect to 
various forms of muscular dystrophy, including Becker, congenital, distal, 
Duchenne, Emery-Dreifuss facioscapulohumeral, limb-girdle, myotonic, and 
oculopharyngeal, muscular dystrophies. 
Be it enacted by the Senate and House of Representatives of 
the United States of America in Congress assembled, 
SECTION 1. SHORT TITLE. 
This Act may be cited as the ‘‘Paul D. Wellstone Muscular 
Dystrophy Community Assistance, Research, and Education Amend-
ments of 2008’’. 
SEC. 2. EXPANSION, INTENSIFICATION, AND COORDINATION OF 
ACTIVITIES OF NIH WITH RESPECT TO RESEARCH ON MUS-
CULAR 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 National 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 fol-
lowing: ‘‘Such centers of excellence shall be known as the ‘Paul 
D. Wellstone Muscular Dystrophy Cooperative Research Cen-
ters’.’’; and 
(3) by adding at the end the following: 
‘‘(g) CLINICAL RESEARCH.—The Coordinating Committee may 
evaluate the potential need to enhance the clinical research infra-
structure 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. 3. 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 subsection (f); and 
(2) by inserting after subsection (c) the following: 
‘‘(d) DATA.—In carrying out this section, the Secretary may 
ensure that any data on patients that is collected as part of the
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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 Dys-
trophy Community Assistance, 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 Congress a report— 
‘‘(A) concerning the activities carried out by MD 
STARnet site funded under this section during the year 
for which the report is prepared; 
‘‘(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 prospective data collec-
tion objectives and strategies. 
‘‘(2) TRACKING HEALTH OUTCOMES.—The Secretary may pro-
vide health outcome data on the health and survival of people 
with muscular dystrophy.’’. 
SEC. 4. INFORMATION AND EDUCATION. 
Section 5 of the Muscular Dystrophy Community Assistance, 
Research and Education Amendments of 2001 (42 U.S.C. 247b– 
19) is amended— 
(1) by redesignating subsection (c) as subsection (d); and 
(2) by inserting after subsection (b) the following: 
‘‘(c) REQUIREMENTS.—In carrying out this section, the Secretary 
may— 
‘‘(1) partner with leaders in the muscular dystrophy patient 
community; 
‘‘(2) cooperate with professional organizations and the 
patient community in the development and issuance of care 
considerations for Duchenne-Becker muscular dystrophy, and 
other forms of muscular dystrophy, and in periodic review 
and updates, as appropriate; and 
‘‘(3) widely disseminate the Duchenne-Becker muscular 
dystrophy and other forms of muscular dystrophy care consider-
ations as broadly as possible, including through partnership
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opportunities with the muscular dystrophy patient commu-
nity.’’. 
Speaker of the House of Representatives. 
Vice President of the United States and
President of the Senate.