Notice2024-00264
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
January 9, 2024
Issuing agencies
Health and Human Services DepartmentHealth Resources and Services Administration
Abstract
In accordance with section 1111(g) of the Public Health Service Act, and 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 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.
Full Text
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<title>Federal Register, Volume 89 Issue 6 (Tuesday, January 9, 2024)</title>
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[Federal Register Volume 89, Number 6 (Tuesday, January 9, 2024)]
[Notices]
[Pages 1105-1106]
From the Federal Register Online via the Government Publishing Office [<a href="http://www.gpo.gov">www.gpo.gov</a>]
[FR Doc No: 2024-00264]
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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 section 1111(g) of the Public Health
Service Act, and 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 the 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: Monday, January 29, 2024, from 10 a.m. to 5 p.m. Eastern Time
(ET) and Tuesday, January 30, 2024, from 10 a.m. to 3 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>, by the deadline of 12 p.m. ET on Friday, January
26, 2024. Instructions on how to access the meeting via webcast will be
provided upon registration. If you are a non-United States citizen who
would like to attend the January meeting in-person, please contact
<a href="/cdn-cgi/l/email-protection#5d1c1e1519131e1d352f2e3c733a322b"><span class="__cf_email__" data-cfemail="49080a010d070a09213b3a28672e263f">[email protected]</span></a> by January 11, 2024.
FOR FURTHER INFORMATION CONTACT: Kim Morrison, Maternal and Child
Health Bureau, HRSA, 5600 Fishers Lane, Room, Rockville, Maryland
20857; 301-822-4978; or <a href="/cdn-cgi/l/email-protection#30717378747e7370584243511e575f46"><span class="__cf_email__" data-cfemail="f7b6b4bfb3b9b4b79f858496d9909881">[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. ACHDNC reviews and reports regularly on newborn and
childhood screening practices, recommends improvements in the national
newborn and childhood screening programs, and fulfills requirements
stated in the authorizing legislation. In addition, ACHDNC's
recommendations regarding inclusion of additional conditions for
screening on the Recommended Uniform Screening Panel (RUSP), 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 one year from the Secretary's adoption of the
condition for screening.
During the January 29-30, 2024, meeting, ACHDNC will hear from
experts in the fields of public health, medicine, heritable disorders,
rare disorders, and newborn screening. Agenda items include the
following topics:
(1) A possible presentation on qualitative research that focuses on
family perspectives;
(2) Updates from Committee ad hoc topic groups. Potential topics
include: the nomination process and revisions to the decision matrix;
(3) An update on the evidence review of Duchenne muscular dystrophy
nomination; and
(4) Presentation of the final evidence-based review report on the
Krabbe disease condition nomination for possible inclusion on the RUSP.
Following this report presentation, the ACHDNC expects to vote on the
second meeting day, on January 30, 2024, whether to recommend to the
Secretary adding Krabbe disease to the RUSP (with potential
implications under section 2713 of the Public Health Service Act, as
noted above).
The agenda for this meeting includes a potential vote to recommend
a nominated condition (Krabbe disease) be added by the Secretary to the
RUSP. Agenda items are subject to change as priorities dictate.
Information about the ACHDNC, including a roster of members and past
meeting summaries, is also available on the ACHDNC website.
Members of the public also will have the opportunity to provide
comments on any or all 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. Subject to change: members of the public registered to submit
oral public comments on Krabbe disease are tentatively scheduled to
provide their statements on Tuesday, January 30, 2024. Members of the
public registered to provide oral public comments on all other newborn
screening related topics are tentatively scheduled to provide
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their statements on Monday, January 29, 2024. Requests to provide a
written statement or make oral comments to ACHDNC must be submitted via
the registration website by 12 p.m. ET on Tuesday, January 17, 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-
United States Citizen attendees must notify HRSA of their planned
attendance at least 15 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.
Maria G. Button,
Director, Executive Secretariat.
[FR Doc. 2024-00264 Filed 1-8-24; 8:45 am]
BILLING CODE 4165-15-P
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