E9-1737. 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), notice is hereby given of the following meeting:

Name: Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC).

Dates and Times: February 26, 2009, 8:30 a.m. to 5 p.m. February 27, 2009, 8:30 a.m. to 3 p.m.

Place: Bethesda Marriott-Pooks Hill, 5151 Pooks Hill Road, Bethesda, MD 20814.

Status: The meeting will be open to the public with attendance limited to space availability. Participants are asked to register for the meeting by going to the registration Web site at http://events.SignUp4.com/​ACHDNC0209. The registration deadline is Wednesday, February 25, 2009. Individuals who need special assistance, such as sign language interpretation or other reasonable accommodations, should indicate their needs on the registration Web site. The deadline for special accommodation requests is Friday, February 20, 2009. If there are technical problems gaining access to the Web site, please contact Tamar R. Shealy, Meetings Manager, Conference and Meetings Management, Altarum Institute, by telephone [phone] or via e-mail [e-mail].

Purpose: The ACHDNC was established to advise and guide the Secretary regarding the most appropriate application of universal newborn screening tests, technologies, policies, guidelines and programs for effectively reducing morbidity and mortality in newborns and children having or at risk for heritable disorders. The ACHDNC also provides advice and recommendations concerning the grants and projects authorized under the Newborn Screening Saves Lives Act 2008.

Agenda: The meeting agenda will include presentations and continued discussions on the nomination/evaluation process for newborn screening candidate conditions. The agenda also includes an update on the American Health Information Community's Newborn Screening Use Case and presentations on the National Institutes of Health funded Translational Research Network, and associated research policies and practices, as well as presentations on the continued work and reports of the ACHDNC's subcommittees on laboratory standards and procedures, follow-up and treatment, and education and training.

Proposed agenda items are subject to change as priorities dictate. You can locate the agenda, committee roster and charter, presentations, and meeting materials at the home page of the Web site at http://events.SignUp4.com/​ACHDNC0209.

Public Comments: Members of the public can present oral comments during the public comment period of the meeting. There will be two public comment periods during this meeting. Comments on Thursday, February 26, 2009, will relate to the Advisory Committee's discussion of adding Severe Combined Immunodeficiency (SCID) to the recommended uniform screening panel. Comments on Friday, February 27, 2009, will relate to all other Committee issues. Those individuals who want to make a comment are requested to register online by Wednesday, February 25, 2009, at http://events.SignUp4.com/​ACHDNC0209. Requests will contain the name, address, telephone number, and any professional or business affiliation of the person desiring to make an oral presentation. Groups having similar interests are requested to combine their comments and present them through a single representative. The list of public comment participants will be posted on the Web site. Written comments should be e-mailed no later than Wednesday, February 25, 2009, for consideration. Comments should be submitted to Tamar R. Shealy, Meetings Manager, Conference and Meetings Management, Altarum Institute, 1200 18th Street, NW., Suite 700, Washington, DC 20036, telephone: [phone]; fax: [phone], or e-mail: [e-mail].

Contact Person: Anyone interested in obtaining other relevant information should write or contact Alaina M. Harris, Maternal and Child Health Bureau, Health Resources and Services Administration, Room 18A-19, Parklawn Building, 5600 Fishers Lane, Rockville, Maryland 20857, Telephone [phone], [e-mail]. More information on the Advisory Committee is available at http://mchb.hrsa.gov/​heritabledisorderscommittee.

Dated: January 21, 2009.

Alexandra Huttinger,

Director, Division of Policy Review and Coordination.