Notice2022-16654
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
August 4, 2022
Issuing agencies
Health and Human Services DepartmentHealth Resources and Services Administration
Abstract
In accordance with the Federal Advisory Committee Act and the Public Health Service Act, this notice announces a public meeting of the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC or Committee). 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
<html>
<head>
<title>Federal Register, Volume 87 Issue 149 (Thursday, August 4, 2022)</title>
</head>
<body><pre>
[Federal Register Volume 87, Number 149 (Thursday, August 4, 2022)]
[Notices]
[Pages 47766-47767]
From the Federal Register Online via the Government Publishing Office [<a href="http://www.gpo.gov">www.gpo.gov</a>]
[FR Doc No: 2022-16654]
-----------------------------------------------------------------------
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).
[[Page 47767]]
ACTION: Notice.
-----------------------------------------------------------------------
SUMMARY: In accordance with the Federal Advisory Committee Act and the
Public Health Service Act, this notice announces a public meeting of
the Advisory Committee on Heritable Disorders in Newborns and Children
(ACHDNC or Committee). 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: Tuesday, August 30, 2022, from 10:00 a.m. to 2:00 p.m. Eastern
Time (ET) and Wednesday, August 31, 2022, from 10:00 a.m. to 1:00 p.m.
ET.
ADDRESSES: This meeting will be held via webinar. While this meeting is
open to the public, advance registration is required.
Please register online at <a href="https://www.achdncmeetings.org/registration/">https://www.achdncmeetings.org/registration/</a> by the deadline of 12:00 p.m. ET on August 29, 2022.
Instructions on how to access the meeting via webcast will be provided
upon registration.
FOR FURTHER INFORMATION CONTACT: Alaina Harris, Maternal and Child
Health Bureau, HRSA, 5600 Fishers Lane, Room 18W66, Rockville, Maryland
20857; 301-443-0721; or <a href="/cdn-cgi/l/email-protection#7332303b373d30331b0100125d141c05"><span class="__cf_email__" data-cfemail="1d5c5e5559535e5d756f6e7c337a726b">[email protected]</span></a>.
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 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 one year from the
Secretary's adoption of the condition for screening.
During the August 30-31, 2022, 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:
(1) A presentation on phase one of the Krabbe disease evidence
review;
(2) A presentation and Committee discussion on the infant formula
shortage;
(3) A presentation and Committee discussion on advancing the
newborn screening system;
(4) A presentation on the Long-term Follow-up for Severe Combined
Immunodeficiency and Other Newborn Screening Conditions Program; and
(5) Workgroup updates.
The agenda for this meeting does not include any vote or decision
to recommend a condition for inclusion in the Recommended Uniform
Screening Panel. As noted in the agenda items, the Committee will hear
presentation on evidence review of Krabbe disease, which may lead to
such a recommendation at a future time.
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. Public participants may request to provide general oral
comments and may submit written statements in advance of the scheduled
meeting. The Committee will honor oral comments in the order they are
requested and may be limited as time allows. Participants who wish to
provide a written statement or make oral comments to ACHDNC must submit
their request via the registration website by 12:00 p.m. ET on
Wednesday, August 24, 2022.
Individuals who need special assistance or another reasonable
accommodation should notify Alaina Harris at the address and phone
number listed above at least 10 business days prior to the meeting.
Maria G. Button,
Director, Executive Secretariat.
[FR Doc. 2022-16654 Filed 8-3-22; 8:45 am]
BILLING CODE 4165-15-P
</pre><script data-cfasync="false" src="/cdn-cgi/scripts/5c5dd728/cloudflare-static/email-decode.min.js"></script></body>
</html>Indexed from Federal Register on August 4, 2022.
This is legal information, not legal advice. Laws vary by jurisdiction and change frequently. Always verify current law with official sources and consult a licensed attorney in your jurisdiction for advice on your specific situation.