Text: H.R.5265 — 110th Congress (2007-2008)All Information (Except Text)
Public Law No: 110-361 (10/08/2008)
[110th Congress Public Law 361]
[From the U.S. Government Printing Office]
PAUL D. WELLSTONE MUSCULAR DYSTROPHY COMMUNITY ASSISTANCE, RESEARCH, AND
EDUCATION AMENDMENTS OF 2008
[[Page 122 STAT. 4010]]
Public Law 110-361
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. <<NOTE: Oct. 8, 2008 - [H.R. 5265]>>
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled, <<NOTE: Paul D.
Wellstone Muscular Dystrophy Community Assistance, Research, and
Education Amendments of 2008.>>
SECTION 1. <<NOTE: 42 USC 201 note.>> 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
(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) <<NOTE: Federal buildings and facilities.>> 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
Section 317Q of the Public Health Service Act (42 U.S.C. 247b-18) is
(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
[[Page 122 STAT. 4011]]
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
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
``(1) partner with leaders in the muscular dystrophy patient
``(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
[[Page 122 STAT. 4012]]
opportunities with the muscular dystrophy patient community.''.
Approved October 8, 2008.
LEGISLATIVE HISTORY--H.R. 5265:
CONGRESSIONAL RECORD, Vol. 154 (2008):
Sept. 23, 24, considered and passed House.
Sept. 26, considered and passed Senate, amended.
Sept. 27, House concurred in Senate amendment.