Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) Evidence Review Group

Project start and end dates: 2006 - Present

Background:
National recommendations for newborn screening are set by the Health and Human Services’ Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC). These national recommendations provide guidance to individual states as they consider expansions and enhancements to state-level newborn screening programs.

Objectives:
To provide guidance to the Secretary of Health and Human Services about conditions that should be included in newborn screening.

Research Topics & Methods:
The Evidence Review Group supports the ACHDNC decision-making process by providing objective summaries of relevant data using pre-defined criteria and well-established methods. Evidence reviews have four components:

• Systematic evidence review
• Population health impact
• Evaluation of the capability of states to implement comprehensive screening

Our research team at the University of Michigan leads the simulation modeling analysis to estimate population health impacts (screening and health outcomes) if a condition were added to the recommended screening panel and participates in the overall evidence review process.

Implications:
If a condition is endorsed by the HHS secretary, the condition becomes part of the recommended uniform screening panel (RUSP). Although newborn screening programs are operated at the state level, many states closely follow recommendations from ACHDNC on additions to the RUSP.

Funder:
This project is funded by the Department of Health and Human Services.

Reports:

• Evidence-based Review of Newborn Screening for Guanidinoacetate Methyltransferase (GAMT) Deficiency
• Evidence-based Review of Newborn Screening for Mucopolysaccharidosis Type II
• Evidence-based Review of Newborn Screening for Spinal Muscular Atrophy (SMA)
• Evidence-based Review of Newborn Screening for X-Linked Adrenoleukodystrophy (X-ALD)
• Evidence-based Review of Newborn Screening for Mucopolysaccharidosis Type 1 (MPS I)
• Evidence-based Review of Newborn Screening for Pompe Disease
• Evidence-based Review of Critical Congenital Cyanotic Heart Disease 
• Evidence-based Review of Severe Combined Immunodeficiency (SCID)