In the Senate of the United States, 

September 26 (legislative day, September 17), 2008. 

Resolved, That the bill from the House of Representatives (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, congenital, 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: 

1 SECTION 1. SHORT TITLE. 

2 This Act may be cited as the ‘‘Paul D. Wellstone Mus3 cular Dystrophy Community Assistance, Research, and 

4 Education Amendments of 2008’’. 
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1 SEC. 2. EXPANSION, INTENSIFICATION, AND COORDINA2 TION OF ACTIVITIES OF NIH WITH RESPECT 

3 TO RESEARCH ON MUSCULAR DYSTROPHY. 

4 (a) TECHNICAL CORRECTION.—Section 404E of the 

5 Public Health Service Act (42 U.S.C. 283g) is amended by 

6 striking subsection (f) (relating to reports to Congress) and 

7 redesignating subsection (g) as subsection (f). 

8 (b) AMENDMENTS.—Section 404E of the Public Health 

9 Service Act (42 U.S.C. 283g) is amended— 

10 (1) in subsection (a)(1), by inserting ‘‘the Na11 tional Heart, Lung, and Blood Institute,’’ after ‘‘the 

12 Eunice Kennedy Shriver National Institute of Child 

13 Health and Human Development,’’; 

14 (2) in subsection (b)(1), by adding at the end of 

15 the following: ‘‘Such centers of excellence shall be 

16 known as the ‘Paul D. Wellstone Muscular Dystrophy 

17 Cooperative Research Centers’.’’; and 

18 (3) by adding at the end the following: 

19 ‘‘(g) CLINICAL RESEARCH.—The Coordinating Com20 mittee may evaluate the potential need to enhance the clin21 ical research infrastructure required to test emerging thera22 pies for the various forms of muscular dystrophy by 

23 prioritizing the achievement of the goals related to this topic 

24 in the plan under subsection (e)(1).’’. 
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1 SEC. 3. DEVELOPMENT AND EXPANSION OF ACTIVITIES OF 

2 CDC WITH RESPECT TO EPIDEMIOLOGICAL 

3 RESEARCH ON MUSCULAR DYSTROPHY. 

4 Section 317Q of the Public Health Service Act (42 

5 U.S.C. 247b–18) is amended— 

6 (1) by redesignating subsection (d) as subsection 

7 (f); and 

8 (2) by inserting after subsection (c) the fol9 lowing: 

10 ‘‘(d) DATA.—In carrying out this section, the Sec11 retary may ensure that any data on patients that is col12 lected as part of the Muscular Dystrophy STARnet (under 

13 a grant under this section) is regularly updated to reflect 

14 changes in patient condition over time. 

15 ‘‘(e) REPORTS AND STUDY.— 

16 ‘‘(1) ANNUAL REPORT.—Not later than 18 

17 months after the date of the enactment of the Paul D. 

18 Wellstone Muscular Dystrophy Community Assist19 ance, Research, and Education Amendments of 2008, 

20 and annually thereafter, the Director of the Centers 

21 for Disease Control and Prevention shall submit to 

22 the appropriate committees of the Congress a report— 

23 ‘‘(A) concerning the activities carried out by 

24 MD STARnet site funded under this section dur25 ing the year for which the report is prepared; 
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1 ‘‘(B) containing the data collected and find2 ings derived from the MD STARnet sites each 

3 fiscal year (as funded under a grant under this 

4 section during fiscal years 2008 through 2012); 

5 and 

6 ‘‘(C) that every 2 years outlines prospective 

7 data collection objectives and strategies. 

8 ‘‘(2) TRACKING HEALTH OUTCOMES.—The Sec9 retary may provide health outcome data on the health 

10 and survival of people with muscular dystrophy.’’. 

11 SEC. 4. INFORMATION AND EDUCATION. 

12 Section 5 of the Muscular Dystrophy Community As13 sistance, Research and Education Amendments of 2001 (42 

14 U.S.C. 247b–19) is amended— 

15 (1) by redesignating subsection (c) as subsection 

16 (d); and 

17 (2) by inserting after subsection (b) the fol18 lowing: 

19 ‘‘(c) REQUIREMENTS.—In carrying out this section, 

20 the Secretary may— 

21 ‘‘(1) partner with leaders in the muscular dys22 trophy patient community; 

23 ‘‘(2) cooperate with professional organizations 

24 and the patient community in the development and 

25 issuance of care considerations for Duchenne-Becker 
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1 muscular dystrophy, and other forms of muscular 

2 dystrophy, and in periodic review and updates, as 

3 appropriate; and 

4 ‘‘(3) widely disseminate the Duchenne-Becker 

5 muscular dystrophy and other forms of muscular dys6 trophy care considerations as broadly as possible, in7 cluding through partnership opportunities with the 

8 muscular dystrophy patient community.’’. 

Attest: 

Secretary. 
110TH CONGRESS 

2D SESSION H.R. 5265 

AMENDMENT