[Federal Register Volume 84, Number 31 (Thursday, February 14, 2019)]
[Notices]
[Pages 4079-4080]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2019-02319]
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DEPARTMENT OF HEALTH AND HUMAN SERVICES
Health Resources and Services Administration
Meeting of the Advisory Committee on Heritable Disorders in
Newborns and Children
AGENCY: Health Resources and Services Administration (HRSA), Department
of Health and Human Services (HHS).
ACTION: Notice.
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SUMMARY: The Advisory Committee on Heritable Disorders in Newborns and
Children (ACHDNC) has scheduled a public meeting. Information about the
ACHDNC and the agenda for this meeting can be found on the ACHDNC
website at https://www.hrsa.gov/advisory-committees/heritable-disorders/index.html.
DATES: April 23, 2019, 9:00 a.m. to 5:00 p.m. Eastern Time (ET) and
April 24, 2019, from 9:00 a.m. to 3:00 p.m. ET.
ADDRESSES: This meeting will be held in-person and will be webcast. The
address for the meeting is 5600 Fishers Lane, Rockville, Maryland
20857. While this meeting is open to the public, advance registration
is required. Please visit the ACHDNC website for information on
registration: https://www.hrsa.gov/advisory-committees/heritable-disorders/index.html. The deadline for online registration is 12:00
p.m. ET on April 19, 2019. Instructions on how to access the meeting
via
[[Page 4080]]
webcast will be provided upon registration.
FOR FURTHER INFORMATION CONTACT: Alaina Harris, Maternal and Child
Health Bureau (MCHB), HRSA, 5600 Fishers Lane, Room 18W66, Rockville,
Maryland 20857; 301-443-0721; or [email protected].
SUPPLEMENTARY INFORMATION: ACHDNC provides advice and recommendations
to the Secretary of HHS (Secretary) on 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. ACHDNC's
recommendations regarding inclusion of additional conditions for
screening, following adoption by the Secretary, are evidence-informed
preventive health services provided for in the comprehensive guidelines
supported by HRSA through the Recommended Uniform Screening Panel
(RUSP) pursuant to section 2713 of the Public Health Service Act (42
U.S.C. 300gg-13). Under this provision, non-grandfathered group health
plans and health insurance issuers offering group or individual health
insurance are required to provide insurance coverage without cost-
sharing (a co-payment, co-insurance, or deductible) for preventive
services 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.
During the April 2019 meeting, ACHDNC will hear from experts in the
fields of public health, medicine, heritable disorders, rare disorders,
and newborn screening. Agenda items include: (1) Assessing state
readiness to implement screening for conditions added to the RUSP; (2)
discussing newborn screening pilot studies; (3) reviewing rare disease
registries; (4) reviewing spinal muscular atrophy (SMA) implementation;
and (5) receiving workgroup updates. Agenda items are subject to
changes as priorities dictate and the final meeting agenda will be
available on ACHDNC's website at https://www.hrsa.gov/advisory-committees/heritable-disorders/index.html. Information about the
ACHDNC, a roster of members, as well as past meeting summaries are also
available on the ACHDNC website.
Members of the public will have the opportunity to provide
comments. Public participants may submit written statements in advance
of the scheduled meeting. Oral comments will be honored in the order
they are requested and may be limited as time allows. To submit written
comments or request time for an oral comment at the meeting, please
register online by 12:00 p.m. ET on April 17, 2019. Visit the ACHDNC
website for information on registration, https://www.hrsa.gov/advisory-committees/heritable-disorders/index.html. Individuals associated with
groups or who plan to provide comments on similar topics may be asked
to combine their comments and present them through a single
representative. No audiovisual presentations are permitted. Written
comments should identify the individual's name, address, email,
telephone number, professional or organization affiliation, background
or area of expertise (e.g., parent, family member, researcher,
clinician, public health, etc.), and the topic/subject matter.
Individuals who plan to attend and need special assistance or
another reasonable accommodation should notify Alaina Harris at the
contact information listed above, at least 10 business days prior to
the meeting. Since this meeting occurs in a federal government
building, attendees must go through a security check to enter the
building. Non-U.S. Citizen attendees must notify HRSA of their planned
attendance at least 20 business days prior to the meeting in order to
facilitate their entry into the building. All attendees are required to
present government-issued identification prior to entry.
Amy P. McNulty,
Acting Director, Division of the Executive Secretariat.
[FR Doc. 2019-02319 Filed 2-13-19; 8:45 am]
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