Meeting of the Advisory Committee on Heritable Disorders in Newborns and Children, 22162 [2024-06689]

Agencies

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

[Federal Register Volume 89, Number 62 (Friday, March 29, 2024)]
[Notices]
[Page 22162]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[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 https://www.hrsa.gov/advisory-committees/heritable-disorders/.

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: 
https://www.hrsa.gov/advisory-committees/heritable-disorders/ 
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 [email protected] 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 [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. 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]
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