88 FR 196 pg. 70681 - Meeting of the Advisory Committee on Heritable Disorders in Newborns and Children
Type: NOTICEVolume: 88Number: 196Page: 70681
Page: 70681FR document: [FR Doc. 2023-22493 Filed 10-11-23; 8:45 am]
Agency: Health and Human Services Department
Sub Agency: Health Resources and Services Administration
Official PDF Version: PDF Version
[top]
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.
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/index.html.
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/index.html 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 ACHDNC@hrsa.gov.
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]
BILLING CODE 4165-15-P