Page:United States Statutes at Large Volume 122.djvu/4034

 12 2 STA T .40 11 PUBLIC LA W 110 –36 1 —O CT. 8, 2008 Musc u larDy s t r oph y STARne t ( un d era g rant under th i s section ) is regularly updated to re f lect changes in patient condition o v er ti m e .‘ ‘(e) R EPORTSAND ST U D Y . — ‘‘( 1 ) ANNUA L REPORT.— N ot later than 1 8 months after the date of the enactment of the P aul D. W ellstone Muscular Dys - trophy C ommunity Assistance , Research, and E ducation Amendments of 20 08, and annually thereafter, the Director of the Centers for Disease Control and Prevention shall su b mit 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 w hich 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 ob j ectives and strategies. ‘‘(2) TRA CKI N GH EALTH OUTCO M ES.—The Secretary may pro- vide health outcome data on the health and survival of people with muscular dystrophy. ’ ’. SEC.4 . INFORMAT ION AN D ED U CATION. Section 5 of the Muscular Dystrophy Community Assistance, Research and Education Amendments of 2001 ( 4 2 U .S.C. 24 7 b – 1 9 ) is amended— (1) by redesignating subsection (c) as subsection (d); and (2) by inserting after subsection (b) the following

‘‘(c) RE Q UIREMENTS.— I n carrying out this section, the Secretary may— ‘‘(1) partner with leaders in the muscular dystrophy patient community; ‘‘(2) cooperate with professional organi z ations and the patient community in the development and issuance of care considerations for Duchenne-Bec k er 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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