[Federal Register Volume 78, Number 250 (Monday, December 30, 2013)]
[Notices]
[Pages 79471-79472]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2013-31161]


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DEPARTMENT OF HEALTH AND HUMAN SERVICES

Health Resources and Services Administration


Discretionary 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 (Pub. L. 92-463, codified at 5 U.S.C. App.), notice is 
hereby given of the following meeting:
    Name: Discretionary Advisory Committee on Heritable Disorders in 
Newborns and Children.
    Dates and Times: January 16, 2014, 10:30 a.m. to 2:30 p.m., January 
17, 2014, 10:00 a.m. to 3:30 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 Advisory Committee's 
Web site: http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders.
    The registration deadline is Wednesday, January 8, 2014, 11:59 p.m. 
Eastern Standard Time (EST).
    Purpose: The Discretionary Advisory Committee on Heritable 
Disorders in Newborns and Children (Committee), as authorized by Public 
Health Service Act (PHS), 42 U.S.C. 217a: Advisory councils or 
committees, was established to advise the Secretary of the Department 
of Health and Human Services about 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. Note: the Committee's 
recommendations regarding additional conditions/inherited disorders for 
screening that have been adopted by the Secretary are included in the 
Recommended Uniform Screening Panel and 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 HRSA-supported 
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.
    Agenda: The meeting will include: (1) The Nomination and 
Prioritization Workgroup's review on X-linked Adrenoleukodystrophy 
(ALD); (2) an update on Mucopolysaccharidosis type 1 (MPS-1) from the 
Condition Review Workgroup; (3) an update on the HRSA-funded Newborn 
Screening Technical Assistance Center; (4) a presentation on the impact 
of the rapid implementation of electronic health records on the Early 
Hearing Detection and Intervention State Programs; (5) an introduction 
to the HRSA-funded Long Term Follow-up Program; and (6) updates from 
the Committee's subcommittees and ad-hoc workgroups including 
Laboratory Standards and Procedures, Follow-up and Treatment, and 
Education and Training subcommittees. Tentatively, the Committee is 
expected to review and/or vote on whether to refer the ALD nomination 
to the Condition Review Workgroup. This vote does not involve a 
proposed addition of a condition to the Recommended Uniform Screening 
Panel.
    Agenda items may be subject to change as necessary or appropriate. 
The agenda, webinar information, Committee Roster, Charter, 
presentations, and other 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 may register to present oral 
comments and/or submit written comments. All comments, whether oral or 
written, are part of the official Committee record and will be 
available on the Committee's Web site. Advance registration is required 
to present oral comments. The public comment period is scheduled for 
the morning of January 16, 2014. Written comments may be emailed to 
Lisa Vasquez at [email protected] by Wednesday, January 8, 2014, 11:59 
p.m. EST. Written comments should identify the individual's name, 
address, email,

[[Page 79472]]

telephone number, professional or business affiliation, type of 
expertise (i.e., parent, researcher, clinician, public health, etc.), 
and the topic/subject matter of comment. Individuals who wish to make 
oral comments are required to email Lisa Vasquez at [email protected] 
by Wednesday, January 8, 2014, 11:59 p.m. EST. https://www.blsmeetings.net/SACHDNC/index.cfm. 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 similar interests may be requested to combine their 
comments and present them through a single representative. No 
audiovisual presentations are permitted. For additional information or 
questions on public comments, please contact Lisa Vasquez, Maternal and 
Child Health Bureau, Health Resources and Services Administration; 
telephone: (301) 443-1080; email: [email protected].

FOR FURTHER INFORMATION CONTACT: Anyone interested in obtaining other 
relevant information should contact 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://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders.

    Dated: December 23, 2013.
Bahar Niakan,
Director, Division of Policy and Information Coordination.
[FR Doc. 2013-31161 Filed 12-27-13; 8:45 am]
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