In the Senate of the United States, 
September 26 (legislative day, September 17), 2008. 
Resolved, That the bill from the House of Representa-
tives (H.R. 5265) entitled ‘‘An Act to amend the Public 
Health Service Act to provide for research with respect to 
various forms of muscular dystrophy, including Becker, con-
genital, 
distal, 
Duchenne, 
Emery-Dreifuss 
facioscapulohumeral, 
limb-girdle, 
myotonic, 
and 
oculopharyngeal, muscular dystrophies.’’, do pass with the 
following 
AMENDMENT: 
Strike all after the enacting clause and insert the 
following: 
SECTION 1. SHORT TITLE. 
This Act may be cited as the ‘‘Paul D. Wellstone Mus-
cular Dystrophy Community Assistance, Research, and 
Education Amendments of 2008’’.
SEC. 2. 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 Dystrophy 
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 thera-
pies 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 fol-
lowing: 
‘‘(d) DATA.—In carrying out this section, the Sec-
retary may 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 Assist-
ance, 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 dur-
ing the year for which the report is prepared;
‘‘(B) containing the data collected and find-
ings 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 collection objectives and strategies. 
‘‘(2) TRACKING HEALTH OUTCOMES.—The Sec-
retary may provide 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 As-
sistance, 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 fol-
lowing: 
‘‘(c) REQUIREMENTS.—In carrying out this section, 
the Secretary may— 
‘‘(1) partner with leaders in the muscular dys-
trophy 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 dys-
trophy care considerations as broadly as possible, in-
cluding through partnership opportunities with the 
muscular dystrophy patient community.’’. 
Attest: 
Secretary.