[Federal Register Volume 84, Number 30 (Wednesday, February 13, 2019)]
[Notices]
[Pages 3797-3798]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2019-02208]


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DEPARTMENT OF HEALTH AND HUMAN SERVICES

Health Resources and Services Administration


Advisory Committee on Heritable Disorders in Newborns and 
Children

AGENCY: Health Resources and Services Administration (HRSA), Department 
of Health and Human Services (HHS).

ACTION: Notice.

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SUMMARY: The Advisory Committee on Heritable Disorders in Newborns and 
Children (ACHDNC) has scheduled a public meeting. 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: March 22, 2019, 10:00 a.m.-3:00 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. The deadline for 
online registration is 5:00 p.m. ET on March 20, 2019. Instructions on 
how to access the meeting via webinar will be provided upon 
registration.

FOR FURTHER INFORMATION CONTACT: Alaina Harris, Maternal and Child 
Health Bureau (MCHB), 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 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's 
recommendations regarding inclusion of additional conditions for 
screening, following adoption by the Secretary, are evidence-informed 
preventive health services provided for in the comprehensive guidelines 
supported by HRSA through the Recommended Uniform Screening Panel 
(RUSP) 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 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 March 2019 meeting, ACHDNC will hear from experts in the 
fields of public health, medicine, heritable disorders, rare disorders, 
and newborn screening. Tentative agenda topics include: (1) The 
condition nomination and evidence review process, (2) rare disease 
registries, and (3) implementation of conditions on the RUSP. Agenda 
items are subject to change as priorities dictate and the final meeting 
agenda will be available on ACHDNC's website: https://www.hrsa.gov/advisory-committees/heritable-disorders/index.html. Information about 
ACHDNC, a roster of members, as well as past meeting summaries are also 
available on the ACHDNC website.
    Members of the public will have the opportunity to provide 
comments, which are part of the official committee record. To submit 
written comments or

[[Page 3798]]

request time for an oral comment during the meeting, please register 
online by 12:00 p.m. ET on March 18, 2019. Visit the ACHDNC website for 
information on registration at https://www.hrsa.gov/advisory-committees/heritable-disorders/index.html. Oral comments will be 
honored in the order they are requested and may be limited as time 
allows. Individuals associated with groups or who plan to provide 
comments on similar topics may be asked to combine their comments and 
present them through a single representative. No audiovisual 
presentations are permitted. Written comments should identify the 
individual's name, address, email, telephone number, professional or 
organization affiliation, background or area of expertise (i.e., 
parent, family member, researcher, clinician, public health, etc.), and 
the topic/subject matter.

John R. Womack,
Acting Deputy Director, Division of the Executive Secretariat.
[FR Doc. 2019-02208 Filed 2-12-19; 8:45 am]
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