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Department of Health and Human Services
Advisory Committee on Heritable Disorders in Newborns and Children
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Recommendations & Responses from the HHS Secretary

Adrenoleukodystrophy (X-ALD)

Informed Consent for Newborn Screening Research

Timely Newborn Screening Goals

Mucopolysaccharidosis Type I (MPS I)

Succinylacetone as Primary Marker to Detect Tyrosinemia Type I

Succinylacetone as Primary Marker to Detect Tyrosinemia Type I in Newborns and its Measurement by Newborn Screening Programs (PDF - 897 KB)

Pompe Disease

The Addition of Pompe Disease to the Recommended Uniform Screening Panel (PDF - 139 KB) June 3, 2013

Point-of-Care Screening

Implementing Point-of-Care Newborn Screening (PDF - 113 KB) March 9, 2012

Improving Data Quality by Linking Newborn Screening to Birth Certificates

Improving Data Quality and Quality Assurance in Newborn Screening by Including the Bloodspot Screening Collection Device Serial Number on Birth Certificates (PDF - 116 KB) March 9, 2012

Critical Congenital Cyanotic Heart Disease

The Addition of Critical Congenital Cyanotic Heart Disease to the Recommended Uniform Screening Panel  (PDF - 82 KB) October 15, 2010

CLIAC Recommendations

Input from the SACHDNC to the CDC for the purpose of developing a MMWR guideline on the CLIAC recommendations (PDF - 99 KB) October 13, 2010

Residual Dried Blood Spot Specimens

The retention and use of residual dried blood spot specimens (PDF - 121 KB) October 13, 2010

Sickle Cell Trait

Sickle Cell Trait and Disease Screening of NCAA Athletes (PDF - 61 KB) June 14, 2010

National Contingency Plan

National Contingency Plan for Newborn Screening (PDF - 30 KB) August 6, 2010

Medical Foods

Insurance Coverage of Medical Foods, Foods Modified to be Low in Protein, and Pharmacological Doses of Vitamins and Amino Acids (PDF - 26 KB) June 14, 2010

Gaps in Coverage and Lack of Uniformity in Reimbursement of Medical Foods and foods that are Critical Treatments for Children and Adults Identified with Inborn Errors of Metabolism through Newborn Screening (PDF - 76 KB) May 19, 2009

Health Care Reform

White Paper on Health Care Reform and Public Health Newborn Screening Programs (PDF - 140 KB) March 23, 2010

Severe Combined Immune Deficiency

The Addition of SCID to the Uniform Panel and related T-coll Lymphocyte Deficiencies to the List of Secondary Targets as a Comprehensive Entity 
(PDF - 54 KB) February 25, 2010

Recommended Uniform Screening Panel

Adoption by All State Newborn Screening Programs of the Recommended Uniform Screening Panel (PDF - 76 KB) November 22, 2009

Adoption of the ACMG-Recommended Screening Panel (PDF - 444 KB) September 9, 2005

Committee Progress

The Committee's Progress to Date in their Evidence Review Deliberations and in Other Committee Actions (PDF -37 KB) September 1, 2009

The Committee's Progress to Date in Their Evidence Review Deliberations (PDF -88 KB) March 30, 2009

The Committee's Activities to Date (PDF -18 KB) October 2008

Prenatal Parental Education (PDF 107 KB) April 4, 2007