Agencies | Governor
Virginia Regulatory Town Hall
Agency
Virginia Department of Health
Board
State Board of Health
chapter
Regulations Governing Virginia Newborn Screening Services [12 VAC 5 ‑ 71]
Action:
Amend Regulations to add SMA and X-ALD to the Virginia Newborn Screening System
 
General Information
Action Summary The proposed regulatory action would amend the existing newborn screening regulation to add spinal muscular atrophy (SMA) and X-linked adrenoleukodystrophy (X-ALD) to the newborn screening panel. Blood spot newborn screening services are provided by the Department of General Services’ Division of Consolidated Laboratory Services (DCLS) in partnership with the Virginia Department of Health (VDH). SMA is a genetic disorder that is estimated to occur in approximately 9.1 out of every 100,000 live births. X-ALD is a genetic disorder that is estimated to occur in approximately 6 out of every 100,000 live births. Treatment for both X-ALD and SMA is available if detected early. Screening is necessary, as these disorders cannot be detected at birth through physical examinations. The additions of SMA and X-ALD to the newborn screening panel have been recommended by the Virginia Genetics Advisory Committee. On the national level, these disorders have been added to the core panel of 35 genetic disorders included in the Recommended Uniform Screening Panel (RUSP) of the US Secretary of Health and Human Services’ Advisory Committee on Heritable Disorders in Newborns and Children.
Chapters Affected Only affects this chapter.
Exempt from APA No, this action is not exempt from Article II of the APA and executive branch review.
RIS Project Yes  [005996]
Note This action is not intended to satisfy the requirement that an entire regulation be reviewed every 4 years.
 
Stages
Stages associated with this regulatory action.
Stage ID Stage Type Status
8581 NOIRA Comment period is underway and will end on 6/27/2019.
 
Contact Information
Name / Title: Joseph Hilbert  / Deputy Commissioner, Govt & Reg Affairs
Address: Virginia Department of Health
109 Governor Street
Richmond, VA 23219
Email Address: joe.hilbert@vdh.virginia.gov
Phone: (804)864-7001    FAX: (804)864-7022    TDD: ()-

This person is the primary contact for this board.