83 FR 47628 - Health Resources and Services Administration Meeting of the Advisory Committee on Heritable Disorders in Newborns and Children

DEPARTMENT OF HEALTH AND HUMAN SERVICES

Federal Register Volume 83, Issue 183 (September 20, 2018)

The Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) has scheduled a public meeting. Information about the ACHDNC, a roster of members, the meeting agenda, as well as past meeting summaries is located on the ACHDNC website at https:// www.hrsa.gov/advisory-committees/heritable-disorders/index.html.

[Federal Register Volume 83, Number 183 (Thursday, September 20, 2018)]
[Notices]
[Pages 47628-47629]
From the Federal Register Online  [www.thefederalregister.org]
[FR Doc No: 2018-20428]


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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, a roster of members, the meeting agenda, as well as past 
meeting summaries is located on the ACHDNC website at https://www.hrsa.gov/advisory-committees/heritable-disorders/index.html.

DATES: November 1, 2018, 10:30 a.m.-5:30 p.m. ET and November 2, 2018, 
9:00 a.m.-3:00 p.m. ET.

ADDRESSES: This meeting will be held in person and by webinar. Advanced 
registration is required. Please register online at http://www.achdncmeetings.org/ by 12:00 p.m. ET on October 29, 2018. The 
address for the meeting is 5600 Fishers Lane, Rockville, Maryland 
20857.

FOR FURTHER INFORMATION CONTACT: Ann Ferrero, Maternal and Child Health 
Bureau (MCHB), HRSA, 5600 Fishers Lane, Room 18N100C, Rockville, 
Maryland 20857; 301-443-3999; or [email protected].

SUPPLEMENTARY INFORMATION: The 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. In 
addition, 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 November meeting, the ACHDNC will hear from experts in 
the field and discuss issues related to newborn screening information, 
education, training activities, and training resources. The ACHDNC will 
hear presentations on the use of genomic sequencing in newborn 
screening as well as the clinical setting for both well and sick 
infants. The ACHDNC will also discuss the nomination of 
cerebrotendinous xanthomatosis (CTX) to the RUSP and vote on whether to 
move the nomination forward to evidence review. Note that this vote is 
not on a proposed addition of a condition to the RUSP. Agenda items are 
subject to change as priorities dictate. Refer to the ACHDNC website 
for any updated information concerning the meeting. Members of the 
public will have the opportunity to provide comments, which are part of 
the official Committee record. To submit written comments or request 
time for an oral comment at the meeting, please register online by 
12:00 p.m. ET on October 26, 2018, at http://www.achdncmeetings.org. 
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.
    Individuals who plan to attend and need special assistance or 
another reasonable accommodation should notify Ann Ferrero 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. Citizens attendees planning to attend must notify 
HRSA of their planned attendance at least 10 business days prior to the 
meeting in

[[Page 47629]]

order to facilitate their entry into the building. Contact Ann Ferrero 
using the information mentioned above by Thursday, October 18, 2018, 
12:00 p.m. ET. All attendees are required to present government-issued 
identification prior to entry. The meeting will also be accessible via 
webcast. Instructions on how to access the meeting via webcast will be 
provided upon registration.

Amy P. McNulty,
Acting Director, Division of the Executive Secretariat.
[FR Doc. 2018-20428 Filed 9-19-18; 8:45 am]
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