Archive for April, 2016

Apr 07 2016

Registration is open for the Advisory Committee on Heritable Disorders in Newborns and Children meeting May 9-10, 2016

Published by under Announcements

The next meeting of the Advisory Committee on Heritable Disorders in Newborns and Children will be held on May 9 and 10th, 2016. The meeting will be held at the 5635 Fishers Lane, Rockville, MD 20852. The meeting will also be webcasted.

Registration: The meeting will be open to the public with attendance limited to space availability.  Participants also have the option of viewing the meeting via webcast.  Whether attending in-person or via webcast, all participants must register for the meeting.  The registration link is https://blsmeetings.net/achdncMay2016/index.cfm. The registration deadline is Friday, April 29, 2016, 11:59 PM Eastern Time. For technical problems gaining access to the registration website, please email Paul Brown at pbrown@seamoncorporation.com

Agenda:  The Committee will hear presentations and discussions on topics including newborn screening long-term follow-up and prenatal education regarding newborn screening bloodspots.  The Committee will also review draft reports from the Pilot Study and Cost Analysis workgroups and hear updates from the Committee’s subcommittees on Laboratory Standards and Procedures, Follow-up and Treatment, and Education and Training.  Tentatively, the Committee is expected to review and/or vote on whether or not the nominated condition Guanidinoacetate Methyltransferase deficiency should be referred for a full evidence-based review.

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 website 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.  Advance registration is required to present oral comments and/or submit written comments. The registration link is https://blsmeetings.net/achdncMay2016/index.cfm.

The registration deadline for public comments is Friday, April 29, 2016 11:59 PM 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.

Written comments must be received by the deadline of April 21, 2016 11:59PM Eastern Time in order to be included in the May 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.

Contact Person:  For additional information or questions on public comments, please 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.

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