Advisory Committee on Heritable Disorders in Newborns and Children; Notice of Meeting
Federal Register, Volume 81 Issue 16 (Tuesday, January 26, 2016)
Federal Register Volume 81, Number 16 (Tuesday, January 26, 2016)
Notices
Pages 4312-4313
From the Federal Register Online via the Government Publishing Office www.gpo.gov
FR Doc No: 2016-01432
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DEPARTMENT OF HEALTH AND HUMAN SERVICES
Health Resources and Services Administration
Advisory Committee on Heritable Disorders in Newborns and Children; Notice of Meeting
In accordance with section 10(a)(2) of the Federal Advisory Committee Act (Public Law 92-463, codified at 5 U.S.C.
Page 4313
App.), notice is hereby given of the following meeting:
Name: Advisory Committee on Heritable Disorders in Newborns and Children
Dates and Times: February 11, 2016, 8:30 a.m. to 5:00 p.m., February 12, 2016, 8:30 a.m. to 3:00 p.m.
Place: Webinar and In-Person, National Institutes of Health, 45 Center Drive Room, Bethesda, MD 20892.
Status: The meeting will be open to the public with attendance limited to space availability. Participants also have the option of viewing the meeting via webinar. Whether attending in-person or via webinar, all participants must register for the meeting. The registration link will be made available at http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders/. The registration deadline is Friday, February 5, 2016, 11:59 p.m. Eastern Time.
Purpose: The Advisory Committee on Heritable Disorders in Newborns and Children (Committee), as authorized by Public Health Service Act, Title XI, Sec. 1111 (42 U.S.C. 300b-10), as amended by the Newborn Screening Saves Lives Reauthorization Act of 2014 (Pub. L. 113-240), was established to advise the Secretary of the Department of Health and Human Services about 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, the Committee's recommendations regarding additional conditions/heritable disorders for screening that have been adopted by the Secretary are included in the Recommended Uniform Screening Panel (RUSP) and constitute part of the comprehensive guidelines supported by the Health Resources and Services Administration. Pursuant to section 2713 of the Public Health Service Act, codified at 42 U.S.C. 300gg-13, non-grandfathered health plans and group and individual health insurance issuers are required to cover evidence-informed care and screenings included in the HRSA-supported comprehensive guidelines without charging a co-payment, co-insurance, or deductible for plan years (in the individual market, policy years) beginning on or after the date that is 1 year from the Secretary's adoption of the condition for screening.
Agenda: The meeting will include: (1) A panel discussion on Long Term Follow-up activities regarding newborns and children identified with a condition via newborn screening. Presentations may include perspectives from state public health experts, researchers, and providers; (2) updates from workgroups focused on cost analysis in newborn screening, newborn screening timeliness, and pilot studies for future nominated conditions; and (3) a discussion on proposed priorities and action items from the three subcommittees (Laboratory Standards and Procedures, Follow-up and Treatment, and Education and Training) to develop a plan for 2016. There are no votes that involve proposed additions of a condition to the RUSP scheduled for this meeting.
Agenda items are subject to change as necessary or appropriate. The agenda, webinar information, Committee Roster, Charter, presentations, and other meeting materials will be available on the Committee's Web site at http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders.
Public Comments: Members of the public may present oral comments and/or submit written comments. Comments are part of the official Committee record. The public comment period is tentatively scheduled for both days of the meeting. Advance registration is required to present oral comments and/or submit written comments. Registration information will be on the Committee Web site at http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders. The registration deadline for public comments is Friday, February 5, 2016, 11:59 p.m. Eastern Time. Written comments must be received by the deadline of January 29, 2016, 11:59 p.m. Eastern Time in order to be included in the February meeting briefing book. Written comments should identify the individual's name, address, email, telephone number, professional or business affiliation, type of expertise (i.e., parent, researcher, clinician, public health, etc.), and the topic/subject matter of comments. 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. For additional information or questions on public comments, please contact Alaina Harris, Maternal and Child Health Bureau, Health Resources and Services Administration; email: aharris@hrsa.gov.
Contact Person: Anyone interested in obtaining other relevant information should contact Alaina Harris, Maternal and Child Health Bureau, Health Resources and Services Administration, Room 18W66, 5600 Fishers Lane, Rockville, Maryland 20857; email: aharris@hrsa.gov.
More information on the Advisory Committee is available at http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders.
Jackie Painter,
Director, Division of the Executive Secretariat.
FR Doc. 2016-01432 Filed 1-25-16; 8:45 am
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