[Federal Register Volume 77, Number 74 (Tuesday, April 17, 2012)]
[Notices]
[Page 22791]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2012-9136]



[[Page 22791]]

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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.
    Dates and Times:
May 17, 2012, 8:30 a.m. to 5 p.m.
May 18, 2012, 8:30 a.m. to 2:30 p.m.

    Place: Hilton Alexandria Old Town Hotel, 1767 King Street, 
Alexandria, VA 22314.
    Status: The meeting will be open to the public, but seating will 
be limited by the space available. Participants are asked to 
register for the meeting by going to the registration Web site at 
http://altarum.cvent.com/sachdncmay2012. The registration deadline 
is Tuesday, May 15, 2012. Individuals who need special assistance, 
such as sign language interpretation or other reasonable 
accommodations, should indicate their needs on the registration Web 
site. The deadline for special accommodation requests is Friday, May 
11, 2012. If there are technical problems gaining access to the 
registration Web site, please contact Maureen Ball, Meetings 
Coordinator, at [email protected].
    Purpose: The Secretary's Advisory Committee on Heritable 
Disorders in Newborns and Children (the Advisory Committee), 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 in connection with 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 Advisory Committee's recommendations regarding additional 
conditions/inherited disorders for screening that are adopted by the 
Secretary are included in the Recommended Uniform Screening Panel 
(RUSP), which forms a 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 provided for in the comprehensive guidelines without 
charging a co-payment, co-insurance, or deductible for plan years 
(in the individual market these are known as policy years) beginning 
on or after the date that is one year from the Secretary's adoption 
of the screening. The Advisory Committee 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 the policies 
and procedures of the Advisory Committee; (2) presentation on the 
newborn screening case definitions project; (3) discussion and 
prioritization of plans and projects for the standing subcommittees; 
(4) updates from the Nomination and Prioritization Workgroup and the 
Condition Review Workgroup; (5) reports on medical foods, medical 
home and carrier screening; and (6) presentations on the continued 
work and reports of the Advisory Committee's subcommittees: 
Laboratory Standards and Procedures; Follow-up and Treatment; and 
Education and Training. Tentatively, the Advisory Committee is 
expected to review and/or vote on the following items (none of which 
involve proposed addition of conditions to the RUSP): (1) Priorities 
for the subcommittees; (2) whether to refer the MPS I condition 
nomination package and the Pompe condition nomination package to the 
Condition Review Workgroup for further evaluation; (3) Condition 
Review Process Report; (3) Medical Home Manuscript; (4) Medical 
Foods Manuscript; and (5) NBS Awareness Campaign Strategy Report.
    Proposed agenda items are subject to change as priorities 
dictate. The agenda, Committee Roster and Charter, presentations, 
and meeting materials can be found at the homepage of the Advisory 
Committee's Web site at http://www.hrsa.gov/heritabledisorderscommittee/.
    Public Comments: Members of the public can submit written 
comments and/or present oral comments during the public comment 
periods 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. All written and oral comments should 
contain the name, address, telephone number, and professional or 
business affiliation of the author. Those individuals who want to 
make oral comments must note this as part of the online registration 
process by 5 p.m. EDT, Tuesday, May 15, 2012 at http://altarum.cvent.com/sachdncmay2012. Pre-registration is required in 
order to present oral comments. Presentations will be limited to 
five to ten minutes depending on the number of presenters. Oral 
comments will be heard on May 17, 2012. Individuals who are 
associated with groups having similar interests are requested to 
combine their comments and present them through a single 
representative. To ensure that all pre-registered individuals who 
wish to make oral comments have the opportunity to share their 
comments, no audiovisual presentations are permitted. Written 
comments should be sent or emailed by Tuesday, May 15, 2012 to 
Maureen Ball ([email protected]), Meetings Coordinator, 
Conference and Meetings Management, Altarum Institute, 1200 18th 
Street NW., Suite 700, Washington, DC 20036. Comments may also be 
faxed (202-785-3083). If you have additional questions regarding the 
submission of comments, please contact Ms. Ball at 202-828-5100.
    Contact Person: Anyone interested in obtaining other relevant 
information should contact or write to Debi Sarkar, 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://mchb.hrsa.gov/heritabledisorderscommittee.

    Dated: April 10, 2012.
Reva Harris,
Acting Director, Division of Policy and Information Coordination.
[FR Doc. 2012-9136 Filed 4-16-12; 8:45 am]
BILLING CODE 4165-15-P