[Federal Register Volume 84, Number 133 (Thursday, July 11, 2019)]
[Notices]
[Pages 33078-33079]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2019-14758]


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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: In accordance with the Federal Advisory Committee Act, this 
notice announces that 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: August 1, 2019, 9:00 a.m.-5:00 p.m. Eastern Time (ET) and August 
2, 2019, 9:00 a.m.-3:00 p.m. ET.

ADDRESSES: This meeting will be held in person and by 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 July 29, 2019. 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 (MCHB), HRSA, 5600 Fishers Lane, Room 18W66, Rockville, 
Maryland 20857; 301-443-0721; or [email protected].

[[Page 33079]]


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 August 1-2, 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) Review of 
the RUSP condition nomination and evidence review process; (2) updates 
on screening methodologies; (3) rare disease registries; (4) linking 
data resources; and (5) workgroup updates. Agenda items are subject to 
changes as priorities dictate. 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. In addition to general public comments, the ACHDNC is 
soliciting specific feedback at this meeting from the public on 
processes for nominating conditions to the RUSP condition and 
conducting evidence reviews. There will be time reserved on the agenda 
for public participants to provide comments on the RUSP condition 
nomination and evidence review process. Requests to offer oral comments 
will be accepted in the order they are requested and may be limited as 
time allows. Public participants may also submit written statements as 
further described below. To submit written comments or request time for 
an oral comment at the meeting, please register online by 12:00 p.m. ET 
on July 26, 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.

Maria G. Button,
Director, Division of the Executive Secretariat.
[FR Doc. 2019-14758 Filed 7-10-19; 8:45 am]
 BILLING CODE 4165-15-P