Meeting of the Advisory Committee on Heritable Disorders in Newborns and Children, 70681 [2023-22493]

Agencies

• DEPARTMENT OF HEALTH AND HUMAN SERVICES
• Health Resources and Services Administration

[Federal Register Volume 88, Number 196 (Thursday, October 12, 2023)]
[Notices]
[Page 70681]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2023-22493]


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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 to be held on Thursday, November 2, 2023, and Friday, November 
3, 2023. 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/.

DATES: Thursday, November 2, 2023, from 10:00 a.m. to 4:00 p.m. Eastern 
Time (ET) and Friday, November 3, 2023, from 10:00 a.m. to 2:00 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/ 
by the deadline of 12:00 p.m. ET on November 1, 2023. 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 [email protected].

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, 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 November 2-3, 2023, 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) An update on the Krabbe disease expedited evidence review 
update;
    (2) An update on the Duchenne Muscular Dystrophy evidence review 
update;
    (3) An update by the ACHDNC Decision Matrix ad hoc topic group and 
potential vote on revisions to the ACHDNC Decision Matrix;
    (4) A presentation and discussion on the ACHDNC's conflict of 
interest procedures;
    (5) Ad hoc topic group updates; and
    (6) A possible presentation on the National Academies of Sciences, 
Engineering, and Medicine Workshop on Next Generation Screening.
    ACHDNC will not vote on recommending conditions for inclusion in 
the Recommended Uniform Screening Panel during this meeting; however, 
Krabbe disease and Duchenne Muscular Dystrophy evidence review updates 
along with a discussion and a potential vote on revisions to the ACHDNC 
Decision Matrix may inform such potential future recommendations. 
Agenda items are subject to change as priorities dictate. Information 
about ACHDNC, including a roster of members and past meeting summaries, 
is available on the ACHDNC website.
    Members of the public 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. Members of the public registered to provide oral public 
comments on all other newborn screening related topics are tentatively 
scheduled to provide their statements on Thursday, November 2, 2023. 
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 
Friday, October 20, 2023. Written comments will be shared with the 
Committee, so that they have an opportunity to consider them prior to 
the meeting.
    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. 2023-22493 Filed 10-11-23; 8:45 am]
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