[Federal Register Volume 84, Number 31 (Thursday, February 14, 2019)]
[Notices]
[Pages 4079-4080]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2019-02319]


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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 (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: April 23, 2019, 9:00 a.m. to 5:00 p.m. Eastern Time (ET) and 
April 24, 2019, from 9:00 a.m. to 3:00 p.m. ET.

ADDRESSES: This meeting will be held in-person and will be webcast. The 
address for the meeting is 5600 Fishers Lane, Rockville, Maryland 
20857. 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 12:00 
p.m. ET on April 19, 2019. Instructions on how to access the meeting 
via

[[Page 4080]]

webcast 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 April 2019 meeting, ACHDNC will hear from experts in the 
fields of public health, medicine, heritable disorders, rare disorders, 
and newborn screening. Agenda items include: (1) Assessing state 
readiness to implement screening for conditions added to the RUSP; (2) 
discussing newborn screening pilot studies; (3) reviewing rare disease 
registries; (4) reviewing spinal muscular atrophy (SMA) implementation; 
and (5) receiving workgroup updates. Agenda items are subject to 
changes as priorities dictate and the final meeting agenda will be 
available on ACHDNC's website at https://www.hrsa.gov/advisory-committees/heritable-disorders/index.html. Information about the 
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. Public participants 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. To submit written 
comments or request time for an oral comment at the meeting, please 
register online by 12:00 p.m. ET on April 17, 2019. Visit the ACHDNC 
website for information on registration, https://www.hrsa.gov/advisory-committees/heritable-disorders/index.html. 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 (e.g., parent, family member, researcher, 
clinician, public health, etc.), and the topic/subject matter.
    Individuals who plan to attend and need special assistance or 
another reasonable accommodation should notify Alaina Harris at the 
contact information 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 20 business days prior to the meeting in order to 
facilitate their entry into the building. All attendees are required to 
present government-issued identification prior to entry.

Amy P. McNulty,
Acting Director, Division of the Executive Secretariat.
[FR Doc. 2019-02319 Filed 2-13-19; 8:45 am]
 BILLING CODE 4165-15-P