82 FR 18919 - Advisory Committee on Heritable Disorders in Newborns and Children

DEPARTMENT OF HEALTH AND HUMAN SERVICES
Health Resources and Services Administration

Federal Register Volume 82, Issue 77 (April 24, 2017)

In accordance with the Federal Advisory Committee Act, notice is hereby given of the following meeting for the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC). The meeting will be open to the public but advance registration is required. The online registration deadline is Thursday, May 4, 2017, 5:00 p.m. Eastern Time. Please check the Web site for additional guidance and registration information. The registration link is http://www.achdncmeetings.org/. Information about the agenda for this meeting can be obtained by accessing the following Web site: http://www.hrsa.gov/ advisorycommittees/mchbadvisory/heritabledisorders.

[Federal Register Volume 82, Number 77 (Monday, April 24, 2017)]
[Notices]
[Pages 18919-18920]
From the Federal Register Online  [www.thefederalregister.org]
[FR Doc No: 2017-08220]


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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 of meeting.

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SUMMARY: In accordance with the Federal Advisory Committee Act, notice 
is hereby given of the following meeting for the Advisory Committee on 
Heritable Disorders in Newborns and Children (ACHDNC). The meeting will 
be open to the public but advance registration is required. The online 
registration deadline is Thursday, May 4, 2017, 5:00 p.m. Eastern Time. 
Please check the Web site for additional guidance and registration 
information. The registration link is http://www.achdncmeetings.org/. 
Information about the agenda for this meeting can be obtained by 
accessing the following Web site: http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders.

DATES: The meeting will be held on May 11, 2017, 9:00 a.m. to 5:00 p.m. 
and May 12, 2017, 9:00 a.m. to 3:00 p.m.

ADDRESSES: This meeting will be held in-person and by webcast. The 
address for the meeting is 5600 Fishers Lane, 5th Floor Pavilion, 
Rockville, MD 20857. Webcast information will be emailed to you after 
you register.

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 
Ann Ferrero, MCHB, HRSA 5600 Fishers Lane, Room 18N100C, Rockville, 
Maryland 20857; (2) call 301-443-3999 or (3) send an email to: 
[email protected]. More information on the Advisory Committee is 
available at the Advisory Committee's Web site, provided above.

SUPPLEMENTARY INFORMATION: The ACHDNC, as authorized by Public Health 
Service Act, Title XI, Sec.  1111 (42 U.S.C. 300b-10), 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 guidelines supported by HRSA for infants, children, and 
adolescents. Pursuant to section 2713 of the Public Health Service Act, 
codified at 42 U.S.C. 300gg-13, non-grandfathered health plans and 
health insurance issuers 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 one year from the 
Secretary's adoption of the condition for screening. the meeting will 
include: (1) Presentations and discussion on the process of identifying 
and following up on out of range newborn screening results; (2) a 
presentation on newborn screening quality assurance programs; (3) 
presentations on the clinical and public health impact of Critical 
Congenital Heart Defects screening; (4) discussion and possible vote on 
a report on Medical Foods for Inborn Errors of Metabolism; (5) a 
presentation, discussion, and possible vote on whether to move a 
nomination forward to evidence review for spinal muscular atrophy 
(SMA); and (6) 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. The final meeting agenda will be available two 
(2) days prior to the meeting on the Committee's Web site: http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders.
    Members of the public may submit written and/or present oral 
comments at the meeting. All comments are part of the official 
Committee record. Advance registration is required to submit written 
comments and/or present oral comments. Written comments must be 
submitted by April 28, 2017, 12:00 p.m. Eastern Time to be included in 
the May meeting briefing book. 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 wish to provide oral comments must register by 
Thursday, May 4, 2017, 5:00 p.m. Eastern Time. To ensure that all 
individuals who have registered to make oral comments can be 
accommodated, the allocated time may be limited. Individuals who are 
associated with groups or have similar interests may be requested to 
combine their comments and present them through a single 
representative. No audiovisual presentations are permitted.

[[Page 18920]]

For additional information or questions on public comments, please 
contact Ann Ferrero, MCHB, HRSA; email: [email protected].
    The 5600 Fishers Lane building requires a security screening on 
entry. To facilitate your access to the building, please contact Ann 
Ferrero at 301-443-3999. Individuals who plan to attend and need 
special assistance, such as sign language interpretation or other 
reasonable accommodations, should notify Ann Ferrero, MCHB, HRSA; 
email: [email protected], at least 10 days prior to the meeting.

Jason E. Bennett,
Director, Division of the Executive Secretariat.
[FR Doc. 2017-08220 Filed 4-21-17; 8:45 am]
 BILLING CODE 4165-15-P