The next meeting for the Advisory Committee on Heritable Disorders in Newborns and Children will be held in-person and via webcast on May 11, 2017, 9:30 a.m. to 5:00 p.m. and May 12, 2017, 9:30 a.m. to 3:00 p.m. The address for the meeting is 5600 Fishers Lane, 5th Floor Pavilion, Rockville, MD 20857.
Registration: This meeting will be open to the public but advance registration is required. The registration link is http://www.achdncmeetings.org/. The online registration deadline is Thursday, May 4, 2017, 5:00 p.m. Eastern Time. For technical problems gaining access to the registration website, please email Morgan Pinckney at firstname.lastname@example.org.
Agenda: The agenda is still being finalized, but meeting topics will include:
(1) Identifying and following up on out of range newborn screening results
(2) CDC’s Newborn Screening Quality Assurance Program
(3) Implementation of Critical Congenital Heart Defects screening
(4) A Report on Medical Foods for Inborn Errors of Metabolism
(5) A new nomination for spinal muscular atrophy (SMA) – the Committee will vote whether to send SMA forward for a full evidence review
(6) Updates from the Laboratory Standards and Procedures workgroup, Follow-up and Treatment workgroup, and Education and Training workgroup
Agenda items are subject to changes as priorities indicate. The Committee will not be voting on a proposed addition of a condition to the Recommended Uniform Screening Panel. The meeting agenda will be available two (2) days prior to the meeting on the Committee’s website: http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders.
Public Comments: 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 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 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.
Contact Person: Anyone requesting more information should contact Ann Ferrero in one of three ways: 1) send a request to the following address: Ann Ferrero, MCHB, HRSA; 5600 Fishers Lane, Room 18N100C; Rockville, Maryland 20857; 2) call 301-443-3999 or 3) send an email to: AFerrero@hrsa.gov.