82 FR 48103 - 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 198 (October 16, 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. Eastern Time on November 6, 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 198 (Monday, October 16, 2017)]
[Notices]
[Pages 48103-48104]
From the Federal Register Online  [www.thefederalregister.org]
[FR Doc No: 2017-22313]


-----------------------------------------------------------------------

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.

-----------------------------------------------------------------------

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. Eastern 
Time on November 6, 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 Wednesday, November 8, 2017, 9:30 
a.m. to 5:00 p.m. Eastern Time and Thursday, November 9, 2017, 9:30 
a.m. to 3:00 p.m. Eastern Time (meeting times are tentative).

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 how to access the meeting via 
Webcast will be provided upon registration. Please note, the 5600 
Fishers Lane building 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

[[Page 48104]]

to provide additional information to HRSA by October 24, 2017, 12:00 
p.m. Eastern Time. 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 one year from the Secretary's adoption of the 
condition for screening.
    The meeting agenda will include: (1) An update on states' progress 
toward the newborn screening timeliness goals outlined by the 
Committee; (2) a presentation on phase 2 of the spinal muscular atrophy 
evidence review; (3) presentations on newborn screening topics such as 
the clinical and public health impact of Severe Combined 
Immunodeficiency (SCID), carrier status in the context of newborn 
screening, and a review of long term follow up in newborn screening; 
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 11:59 p.m. Eastern Time on November 
2, 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, etc.) 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.

Amy McNulty,
Acting Director, Division of the Executive Secretariat.
[FR Doc. 2017-22313 Filed 10-13-17; 8:45 am]
 BILLING CODE 4165-15-P