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 Amendments of 2008’’. 

SEC. 2. EXPANSION, INTENSIFICATION, AND COORDINATION 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 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 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 Committee may 

evaluate the potential need to enhance the clinical 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. 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 Dystrophy 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 collection objectives and strategies. 

‘‘(2) TRACKING HEALTH OUTCOMES.—The Secretary 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 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 considerations as broadly as possible, including through partnership 
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opportunities with the muscular dystrophy patient community.’’. 

Speaker of the House of Representatives. 

Vice President of the United States and

President of the Senate.