[Federal Register Volume 84, Number 30 (Wednesday, February 13, 2019)]
[Notices]
[Pages 3797-3798]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2019-02208]
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DEPARTMENT OF HEALTH AND HUMAN SERVICES
Health Resources and Services Administration
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: March 22, 2019, 10:00 a.m.-3:00 p.m. ET.
ADDRESSES: This meeting will be held via webinar. 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 5:00 p.m. ET on March 20, 2019. Instructions on
how to access the meeting via webinar 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 March 2019 meeting, ACHDNC will hear from experts in the
fields of public health, medicine, heritable disorders, rare disorders,
and newborn screening. Tentative agenda topics include: (1) The
condition nomination and evidence review process, (2) rare disease
registries, and (3) implementation of conditions on the RUSP. Agenda
items are subject to change as priorities dictate and the final meeting
agenda will be available on ACHDNC's website: https://www.hrsa.gov/advisory-committees/heritable-disorders/index.html. Information about
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, which are part of the official committee record. To submit
written comments or
[[Page 3798]]
request time for an oral comment during the meeting, please register
online by 12:00 p.m. ET on March 18, 2019. Visit the ACHDNC website for
information on registration at https://www.hrsa.gov/advisory-committees/heritable-disorders/index.html. Oral comments will be
honored in the order they are requested and may be limited as time
allows. 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 (i.e.,
parent, family member, researcher, clinician, public health, etc.), and
the topic/subject matter.
John R. Womack,
Acting Deputy Director, Division of the Executive Secretariat.
[FR Doc. 2019-02208 Filed 2-12-19; 8:45 am]
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