Notice2024-14743
Meeting of the Advisory Committee on Heritable Disorders in Newborns and Children
Primary source
Metadata and text below are from the Federal Register, a public-domain U.S. government work. Always verify the official published version before relying on it for any legal matter.
Published
July 5, 2024
Issuing agencies
Health and Human Services DepartmentHealth Resources and Services Administration
Abstract
In accordance with the Federal Advisory Committee Act this notice announces that the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC or Committee) has scheduled a public meeting. Information about 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.
Full Text
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<title>Federal Register, Volume 89 Issue 129 (Friday, July 5, 2024)</title>
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[Federal Register Volume 89, Number 129 (Friday, July 5, 2024)]
[Notices]
[Pages 55629-55630]
From the Federal Register Online via the Government Publishing Office [<a href="http://www.gpo.gov">www.gpo.gov</a>]
[FR Doc No: 2024-14743]
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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.
ACTION: Notice.
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SUMMARY: In accordance with the Federal Advisory Committee Act this
notice announces that the Advisory Committee on Heritable Disorders in
Newborns and Children (ACHDNC or Committee) has scheduled a public
meeting. Information about ACHDNC and the agenda for this meeting can
be found on the ACHDNC website at <a href="https://www.hrsa.gov/advisory-committees/heritable-disorders/index.html">https://www.hrsa.gov/advisory-committees/heritable-disorders/index.html</a>.
DATES: Thursday, August 8, 2024, from 10:00 a.m. to 4:00 p.m. Eastern
Time (ET) and Friday, August 9, 2024, from 10:00 a.m. to 2:00 p.m. ET.
ADDRESSES: This meeting will be held in person with webcast options.
While this meeting is open to the public, advance registration is
required. Please visit the ACHDNC website for information on
registration: <a href="https://www.hrsa.gov/advisory-committees/heritable-disorders/index.html">https://www.hrsa.gov/advisory-committees/heritable-disorders/index.html</a>. Please register by the deadline of 12:00 p.m. ET
on Wednesday, August 6, 2024. Instructions on how to access the meeting
via webcast will be provided upon registration.
If you are a non-U.S. citizen who would like to attend the August
meeting in-person, please contact <a href="/cdn-cgi/l/email-protection#8acbc9c2cec4c9cae2f8f9eba4ede5fc"><span class="__cf_email__" data-cfemail="e4a5a7aca0aaa7a48c969785ca838b92">[email protected]</span></a> by July 22, 2024.
FOR FURTHER INFORMATION CONTACT: Kim Morrison, Maternal and Child
Health Bureau, HRSA, 5600 Fishers Lane, Room, Rockville, Maryland
20857; 301-443-6672; or <a href="/cdn-cgi/l/email-protection#0647454e424845466e74756728616970"><span class="__cf_email__" data-cfemail="b6f7f5fef2f8f5f6dec4c5d798d1d9c0">[email protected]</span></a>.
SUPPLEMENTARY INFORMATION: ACHDNC provides advice and recommendations
to the Secretary of Health and Human Services (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. The ACHDNC reviews and reports regularly on newborn and
childhood screening practices, recommends improvements in the national
newborn and childhood screening programs, and fulfills
[[Page 55630]]
requirements stated in the authorizing legislation. In addition,
ACHDNC's recommendations regarding inclusion of additional conditions
for screening on the Recommended Uniform Screening Panel, following
adoption by the Secretary, are evidence-informed preventive health
services provided for in the comprehensive guidelines supported by HRSA
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 non-grandfathered 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 1 year from the Secretary's adoption of the
condition for screening.
During the August 8-9, 2024, meeting, ACHDNC will hear from experts
in the fields of public health, medicine, heritable disorders, rare
disorders, and newborn screening. Possible agenda items may include the
following topics:
(1) A presentation on types of screening that are a part of the
standard of care in a clinical setting;
(2) An update on the ACHDNC nomination process;
(3) A presentation on the revisions to the decision matrix and a
potential vote on whether to adopt the proposed revisions to the ACHDNC
decision matrix and process; and
(4) An update on the Metachromatic Leukodystrophy condition
nomination and a potential vote on whether to move it forward to full
evidence-based review, which, depending on the strength of the
evidence, could lead to a future recommendation to add this condition
to the Recommended Uniform Screening Panel.
Agenda items are subject to change as priorities dictate.
Information about ACHDNC, including a roster of members and past
meeting summaries, is also available on the ACHDNC website.
Members of the public will have the opportunity to provide comments
on any of the above agenda items. Public participants may request to
provide general oral comments and 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. Requests to
provide a written statement or make oral comments to ACHDNC must be
submitted via the registration website by 12:00 p.m. ET on Thursday,
July 25, 2024. Written comments will be shared with the Committee prior
to the meeting so that they have an opportunity to consider them in
advance of the meeting.
Individuals who need special assistance or another reasonable
accommodation should notify Kim Morrison at the address and phone
number 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 15 business days prior to the meeting to facilitate their entry
into the building. All attendees are required to present government-
issued identification prior to entry.
Maria G. Button,
Director, Executive Secretariat.
[FR Doc. 2024-14743 Filed 7-3-24; 8:45 am]
BILLING CODE 4165-15-P
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