[Federal Register Volume 81, Number 16 (Tuesday, January 26, 2016)]
[Notices]
[Pages 4312-4313]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2016-01432]


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DEPARTMENT OF HEALTH AND HUMAN SERVICES

Health Resources and Services Administration


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.

[[Page 4313]]

App.), notice is hereby given of the following meeting:
    Name: Advisory Committee on Heritable Disorders in Newborns and 
Children
    Dates and Times: February 11, 2016, 8:30 a.m. to 5:00 p.m., 
February 12, 2016, 8:30 a.m. to 3:00 p.m.
    Place: Webinar and In-Person, National Institutes of Health, 45 
Center Drive Room, Bethesda, MD 20892.
    Status: The meeting will be open to the public with attendance 
limited to space availability. Participants also have the option of 
viewing the meeting via webinar. Whether attending in-person or via 
webinar, all participants must register for the meeting. The 
registration link will be made available at http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders/. The registration 
deadline is Friday, February 5, 2016, 11:59 p.m. Eastern Time.
    Purpose: The Advisory Committee on Heritable Disorders in Newborns 
and Children (Committee), as authorized by Public Health Service Act, 
Title XI, Sec.  1111 (42 U.S.C. 300b-10), as amended by the Newborn 
Screening Saves Lives Reauthorization Act of 2014 (Pub. L. 113-240), 
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. In addition, the Committee's 
recommendations regarding additional conditions/heritable disorders for 
screening that have been adopted by the Secretary are included in the 
Recommended Uniform Screening Panel (RUSP) and constitute 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 and 
group and individual health insurance issuers are required to cover 
evidence-informed care and screenings included in the HRSA-supported 
comprehensive guidelines without charging a co-payment, co-insurance, 
or deductible for plan years (in the individual market, policy years) 
beginning on or after the date that is 1 year from the Secretary's 
adoption of the condition for screening.
    Agenda: The meeting will include: (1) A panel discussion on Long 
Term Follow-up activities regarding newborns and children identified 
with a condition via newborn screening. Presentations may include 
perspectives from state public health experts, researchers, and 
providers; (2) updates from workgroups focused on cost analysis in 
newborn screening, newborn screening timeliness, and pilot studies for 
future nominated conditions; and (3) a discussion on proposed 
priorities and action items from the three subcommittees (Laboratory 
Standards and Procedures, Follow-up and Treatment, and Education and 
Training) to develop a plan for 2016. There are no votes that involve 
proposed additions of a condition to the RUSP scheduled for this 
meeting.
    Agenda items are subject to change as necessary or appropriate. The 
agenda, webinar information, Committee Roster, Charter, presentations, 
and other meeting materials will be available on the Committee's Web 
site at http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders.
    Public Comments: Members of the public may present oral comments 
and/or submit written comments. Comments are part of the official 
Committee record. The public comment period is tentatively scheduled 
for both days of the meeting. Advance registration is required to 
present oral comments and/or submit written comments. Registration 
information will be on the Committee Web site at http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders. The registration 
deadline for public comments is Friday, February 5, 2016, 11:59 p.m. 
Eastern Time. Written comments must be received by the deadline of 
January 29, 2016, 11:59 p.m. Eastern Time in order to be included in 
the February meeting briefing book. 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 
comments. 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 
Alaina Harris, Maternal and Child Health Bureau, Health Resources and 
Services Administration; email: [email protected].
    Contact Person: Anyone interested in obtaining other relevant 
information should contact Alaina Harris, Maternal and Child Health 
Bureau, Health Resources and Services Administration, Room 18W66, 5600 
Fishers Lane, Rockville, Maryland 20857; email: [email protected].
    More information on the Advisory Committee is available at http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders.

Jackie Painter,
Director, Division of the Executive Secretariat.
[FR Doc. 2016-01432 Filed 1-25-16; 8:45 am]
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