Notice2024-06689
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
March 29, 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 62 (Friday, March 29, 2024)</title>
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[Federal Register Volume 89, Number 62 (Friday, March 29, 2024)]
[Notices]
[Page 22162]
From the Federal Register Online via the Government Publishing Office [<a href="http://www.gpo.gov">www.gpo.gov</a>]
[FR Doc No: 2024-06689]
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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, May 9, 2024, from 10 a.m. to 5 p.m. eastern time (ET)
and Friday, May 10, 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 Wednesday, May 8, 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 May
meeting in-person, please contact <a href="/cdn-cgi/l/email-protection#a9e8eae1ede7eae9c1dbdac887cec6df"><span class="__cf_email__" data-cfemail="f2b3b1bab6bcb1b29a808193dc959d84">[email protected]</span></a> by April 19, 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#7b3a38333f35383b1309081a551c140d"><span class="__cf_email__" data-cfemail="afeeece7ebe1ecefc7dddcce81c8c0d9">[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 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 May 9-10, 2024, meeting, ACHDNC will hear from experts
in the fields of public health, medicine, heritable disorders, rare
disorders, and newborn screening. Agenda items may include the
following topics:
(1) A possible presentation on drug trials for rare diseases;
(2) A possible presentation on assessing evidence from qualitative
research using the GRADE-CERQUAL approach;
(3) Updates from Committee ad hoc topic groups. Potential topics
include: the nomination process and revisions to the decision matrix,
counting conditions, and naming conditions;
(4) An update on the evidence review of Duchenne Muscular Dystrophy
(DMD), which was previously nominated for Committee consideration; and
(5) Following the DMD evidence review presentation, a potential
vote on whether to recommend to the Secretary the addition of DMD to
the Recommended Uniform Screening Panel at this time or to take other
Committee action regarding this nominated condition. 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 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. 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 Friday, April 26, 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. 2024-06689 Filed 3-28-24; 8:45 am]
BILLING CODE 4165-15-P
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