82 FR 33136 - Advisory Committee on Heritable Disorders in Newborns and Children

DEPARTMENT OF HEALTH AND HUMAN SERVICES
Health Resources and Service Administration

Federal Register Volume 82, Issue 137 (July 19, 2017)

In accordance with the Federal Advisory Committee Act, notice is hereby given that a meeting is scheduled for the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC). This meeting will be open to the public but advance registration is required. Please register online at http://www.achdncmeetings.org/ by 12:00 p.m. ET on August 1, 2017. Information about the ACHDNC can be obtained by accessing the following Web site: https://www.hrsa.gov/ advisorycommittees/mchbadvisory/heritabledisorders/index.html.

[Federal Register Volume 82, Number 137 (Wednesday, July 19, 2017)]
[Notices]
[Pages 33136-33137]
From the Federal Register Online  [www.thefederalregister.org]
[FR Doc No: 2017-15113]


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DEPARTMENT OF HEALTH AND HUMAN SERVICES

Health Resources and Service Administration


Advisory Committee on Heritable Disorders in Newborns and 
Children

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

ACTION: Notice of meeting.

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SUMMARY: In accordance with the Federal Advisory Committee Act, notice 
is hereby given that a meeting is scheduled for the Advisory Committee 
on Heritable Disorders in Newborns and Children (ACHDNC). This meeting 
will be open to the public but advance registration is required. Please 
register online at http://www.achdncmeetings.org/ by 12:00 p.m. ET on 
August 1, 2017. Information about the ACHDNC can be obtained by 
accessing the following Web site: https://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders/index.html.

DATES: The meeting will be held on August 3, 2017, 9:30 a.m. to 5:00 
p.m. ET and August 4, 2017, 9:30 a.m. to 3:00 p.m. ET. Meeting times 
may be revised; please check the Committee's Web site for updates.

ADDRESSES: This meeting will be held in-person at 5600 Fishers Lane, 
5th Floor Pavilion, Rockville, MD 20857. The meeting will also be 
accessible via Webcast. Instructions on accessing the meeting via 
Webcast will be provided upon registration. Please note that 5600 
Fishers Lane requires security screening on entry. Visitors must 
provide a driver's license, passport, or other form of government-
issued photo identification to be granted entry into the facility. Non-
US citizens planning to attend in person will need to provide 
additional information to HRSA by July 24, 2017, 12:00 p.m. EDT. Please 
see contact information below.

FOR FURTHER INFORMATION CONTACT: Anyone requesting information 
regarding the ACHDNC should contact Ann Ferrero, Maternal and Child 
Health Bureau (MCHB), HRSA, in one of three ways: (1) Send a request to 
the following address: Ann Ferrero, MCHB, HRSA 5600 Fishers Lane, Room 
18N100C, Rockville, MD 20857; (2) call 301-443-3999; or (3) send an 
email to: [email protected].

SUPPLEMENTARY INFORMATION: The ACHDNC provides advice to the Secretary 
of HHS 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 and inherited disorders 
for screening which have been adopted by the Secretary are then 
included in the Recommended Uniform Screening Panel (RUSP). Conditions 
listed on the RUSP constitute part of the comprehensive preventive 
health guidelines supported by HRSA for infants and children under 
section 2713 of the Public Health Service Act, codified at 42 U.S.C. 
300gg-13. Under this provision, non-grandfathered health plans are 
required to cover screenings included in the HRSA-supported 
comprehensive guidelines without charging a co-payment, co-insurance, 
or deductible 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.

[[Page 33137]]

    The meeting agenda will include: (1) Presentations and discussion 
on the processes states use to identify and follow up on out of range 
newborn screening results; (2) a presentation on phase one of the 
spinal muscular atrophy evidence review; (3) presentations on newborn 
screening topics such as the clinical and public health impact of 
Critical Congenital Heart Defects, quality measures in newborn 
screening, and a review of newborn screening technology; and (4) 
updates from the Laboratory Standards and Procedures workgroup, Follow-
up and Treatment workgroup, and Education and Training workgroup. The 
Committee will not be voting on a proposed addition of a condition to 
the RUSP. Agenda items are subject to change. The final meeting agenda 
will be available 2 days prior to the meeting on the Committee's Web 
site: http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders.
    Members of the public will have the opportunity to provide 
comments. All comments 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. on July 28, 2017, at 
http://www.achdncmeetings.org/. To ensure all individuals who have 
registered and requested time for oral comments are accommodated, the 
allocated time for comments may be limited. 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) and the topic/subject matter.
    Individuals who plan to attend and need special assistance, such as 
sign language interpretation or other reasonable accommodations, should 
notify Ann Ferrero using the address and phone number above at least 10 
days prior to the meeting.

Jason E. Bennett,
Director, Division of the Executive Secretariat.
[FR Doc. 2017-15113 Filed 7-18-17; 8:45 am]
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