[Federal Register Volume 78, Number 4 (Monday, January 7, 2013)]
[Notices]
[Pages 955-956]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2013-00028]
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DEPARTMENT OF HEALTH AND HUMAN SERVICES
Health Resources and Services Administration
Secretary's Advisory Committee on Heritable Disorders in Newborns
and Children; Notice of Meeting
In accordance with section 10(a)(2) of the Federal Advisory
Committee Act (Public Law 92-463, codified at 5 U.S.C. App. 2), notice
is hereby given of the following meeting:
Name: Secretary's Advisory Committee on Heritable Disorders in
Newborns and Children (SACHDNC).
Dates and Times: January 31, 2013, 9:30 a.m. to 5:00 p.m.,
February 1, 2013, 9:30 a.m. to 1:15 p.m.
Place: Virtual via Webinar.
Status: The meeting is open to the public. For more information
on registration and webinar details, please visit the SACHDNC Web
site: http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders.
Purpose: The Secretary's Advisory Committee on Heritable
Disorders in Newborns and Children (SACHDNC), as authorized by
Public Law 106-310, which added section 1111 of the Public Health
Service Act, codified at 42 U.S.C. 300b-10, was established by
Congress to advise the Secretary of the Department of Health and
Human Services regarding the development of newborn screening
activities, technologies, policies, guidelines, and programs for
effectively reducing morbidity and mortality in newborns and
children having, or at risk for, heritable disorders. The SACHDNC's
recommendations regarding additional conditions/inherited disorders
for screening that have been adopted by the Secretary are included
in the Recommended Uniform Screening Panel (RUSP) that constitutes
part of the comprehensive guidelines supported by the Health
Resources and Services Administration. Pursuant to section 2713 of
the Public Health Service Act, codified at 42 U.S.C. 300gg-13, non-
grandfathered health plans are required to cover screenings included
in the comprehensive guidelines without charging a co-payment, co-
insurance, or deductible for plan years (i.e., policy years)
beginning on or after the date that is one year from the Secretary's
adoption of the condition for screening. The SACHDNC also provides
advice and recommendations concerning grants and projects authorized
under section 1109 of the Public Health Service Act (42 U.S.C. 300b-
8).
Agenda: The meeting will include: (1) Updates on state
implementation of newborn screening for Critical Congenital Heart
Disease (CCHD) and Severe Combined Immunodeficiency Disorder (SCID);
(2) update on the Pompe Condition Nomination; (3) update on
application of the SACHDNC Condition Review Matrix; (4) updates on
priority projects from the Advisory Committee's subcommittees on
Laboratory Standards and Procedures, Follow-up and Treatment, and
Education and Training; (5) a presentation on the Duchenne Muscular
Dystrophy Newborn Screening Symposium; (6) a final workgroup report
on carrier screening; and (7) a presentation on the National
Institutes of Health's Genomic Sequencing and Newborn Screening
Disorders Initiative.
Tentatively, the SACHDNC is expected to vote on: (1) A finalized
report regarding genetic carrier screening (i.e., testing to
identify individuals who may be at increased risk of carrying one or
more gene mutations that could result in having children affected
with an inherited genetic disorder); and (2) application of the
Condition Review Decision Matrix.
Proposed agenda items are subject to change as priorities
dictate. The agenda, webinar information, Committee Roster, Charter,
presentations, and meeting materials are located on the Advisory
Committee's Web site at http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders.
Public Comments: Members of the public can submit written
comments and/or register to present oral comments during the public
comment period of the meeting. All comments, whether oral or
written, are part of the official Committee record and will be
available for public inspection and copying. Advanced registration
is required to present oral comments or submit written comments.
Individuals who wish to make public comments are required to email
Lisa Vasquez ([email protected]) by Thursday, January 17, 2013. The
public comment period is scheduled for the morning of January 31,
2013.
Written comments should identify the individual's name, address,
email, telephone number, professional or business affiliation, type
of expertise (i.e., parent, researcher, clinician, public health,
etc.), and the topic/subject matter of comment. To ensure that all
individuals who have registered to make oral comments can be
accommodated, the allocated time may be limited. Individuals who are
associated with groups or have
[[Page 956]]
similar interests may be requested to combine their comments and
present them through a single representative. No audiovisual
presentations are permitted.
Contact Person: Anyone interested in obtaining other relevant
information should contact Patrick Stephens, Maternal and Child
Health Bureau, Health Resources and Services Administration, Room
18A-19, Parklawn Building, 5600 Fishers Lane, Rockville, Maryland
20857; telephone: 301-443-1080; email: [email protected].
More information on the Advisory Committee is available at
http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders.
Dated: December 28, 2012.
Bahar Niakan,
Director, Division of Policy and Information Coordination.
[FR Doc. 2013-00028 Filed 1-4-13; 8:45 am]
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