[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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