Guanidinoacetate Methyltransferase (GAMT) Deficiency
- Chair Letter to Secretary - June 7, 2022 (PDF - 26 KB)
- Enclosure: External Evidence Review Report - June 2, 2022 (PDF - 932 KB)
Mucopolysaccharidosis Type II (MPS II)
- Chair Letter to Secretary - March 15, 2022 (PDF - 29 KB)
- Enclosure: External Evidence Review Report - February 20, 2022 (PDF - 915 KB)
- Secretary's Interim Response (PDF - 60 KB)
Review of Newborn Screening Implementation for Spinal Muscular Atrophy
- Chair Letter to Secretary - December 7, 2020 (PDF - 22 KB)
- Enclosure: Report - Review of Newborn Screening Implementation for Spinal Muscular Atrophy (PDF - 1.1 MB)
Medical Foods for Inborn Errors of Metabolism: The Critical Need to Improve Patient Access
- Chair Letter to Secretary - July 25, 2019 (PDF - 152 KB)
- Acting Administrator Response - September 9, 2019 (PDF - 131 KB)
Spinal Muscular Atrophy (SMA)
- Chair Letter to Secretary - March 8, 2018 (PDF - 128 KB)
- External Evidence Review Report (PDF - 1.5 MB) (March 13, 2018)
- Deputy Secretary's Interim Response - April 13, 2018 (PDF - 143 KB)
Individuals using assistive technology may not be able to fully access information in this file. For assistance, please email HRSAAccessibility@hrsa.gov. - Secretary’s Final Response regarding the Committee’s recommendation to add SMA - July 2, 2018 (PDF - 88 KB)
Adrenoleukodystrophy (X-ALD)
- Chair Letter to Secretary - September 25, 2015 (PDF - 70 KB)
- Acting Deputy Secretary's Interim Response - November 12, 2015 (PDF - 44 KB)
- Secretary's Final Response regarding Committee's Recommendation to add X-ALD to the RUSP - February 16, 2016 (PDF - 100 KB)
Individuals using assistive technology may not be able to fully access information in this file. For assistance, please email HRSAAccessibility@hrsa.gov.
Informed Consent for Newborn Screening Research
- Chair Letter to Secretary - June 23, 2015 (PDF - 132 KB)
- Secretary's Response - October 30, 2015 (PDF - 23 KB)
Timely Newborn Screening Goals
- Chair Letter to Secretary - April 16, 2015 (PDF - 36 KB)
- Acting Deputy Secretary's Response - June 3, 2015 (PDF - 60 KB)
Mucopolysaccharidosis Type I (MPS I)
- Chair Letter to Secretary - April 13, 2015 (PDF - 36 KB)
- Acting Deputy Secretary's Interim Response - June 3, 2015 (PDF - 60 KB)
- Secretary's Final Response regarding Committee's Recommendation to add MPS I to the RUSP - February 16, 2016 (PDF - 159 KB)
Succinylacetone as Primary Marker to Detect Tyrosinemia Type I
Succinylacetone as Primary Marker to Detect Tyrosinemia Type I (PDF - 897 KB)
- Chair Letter to Secretary - December 16, 2014 (PDF - 36 KB)
- Secretary's Response - March 16, 2015 (PDF - 60 KB)
Pompe Disease
The Addition of Pompe Disease to the Recommended Uniform Screening Panel (PDF - 139 KB) June 3, 2013
- Secretary's Interim Response RE Committee's Recommendation to add Pompe Disease to the RUSP - January 27, 2014 (PDF - 25KB)
- Secretary's Final Response RE Committee's Recommendation to add Pompe Disease to the RUSP - March 02, 2015 (PDF - 28KB)
Point-of-Care Screening
Implementing Point-of-Care Newborn Screening (PDF - 113 KB) March 9, 2012
- Enclosure: Report - Implementing Point-of-Care Newborn Screening (PDF - 383 KB)
- Response to March 9, 2012 letter RE Implementing Point-of-Care Newborn Screening (PDF - 17 KB) April 3, 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
- Response to March 9, 2012 Letter RE Improving Data Quality in Newborn Screening by linking Newborn Screening to Birth Certificates (PDF - 50 KB) September 7, 2012
- Secretary's Response post ICC Report RE Improving Data Quality in Newborn Screening by linking Newborn Screening to Birth Certificates (PDF - 69 KB) August 21, 2013
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
- Response adopting recommendation to add Critical Congenital Heart Disease to the Recommended Uniform Screening Panel (PDF - 212 KB) September 21, 2011
- Response to October 15, 2010 Letter RE Critical Congenital Cyanotic Heart Disease (PDF - 75 KB) April 20, 2011
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
- Response to October 13, 2010 Letter RE residual dried blood spot specimens (PDF - 51 KB) April 13, 2011
- Secretary's Response to Committee recommendations RE retention and use of residual dried blood spot specimens (PDF - 116 KB) December 16, 2013
Sickle Cell Trait
Sickle Cell Trait and Disease Screening of NCAA Athletes (PDF - 61 KB) June 14, 2010
- Sickle Cell Trait & Disease screening of NCAA athletes -revisions to June 14, 2010 recommendations (PDF - 365 KB) October 11, 2010
- Response to June 14 and October 11, 2010 Letters Regarding Recommendations on Screening for Sickle Cell Disease Carriers (PDF - 37 KB) June 27, 2011
National Contingency Plan
National Contingency Plan for Newborn Screening (PDF - 30 KB) August 6, 2010
- Tab A - NBS CONPLAN Final Signed (PDF - 738 KB) July 2010
- Interim Response to August 6, 2010 RE: National Contingency Plan for Newborn Screening letter (PDF - 160 KB) September 17, 2010
- Final Response to August 6, 2010 Letter RE: National Contingency Plan for Newborn Screening letter (PDF - 40 KB) September 2, 2011
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
- Response to June 14, 2010 Letter RE: Insurance coverage of medical foods, foods modified to be low in protein, and pharmacological doses of vitamins and amino acids (PDF - 279 KB) December 14, 2010
- Interim Response from the Secretary to the June 14, 2010 Letter (PDF - 98 KB) July 29, 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
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) April 7, 2009
- Tab A: List of State Laws (PDF - 229 KB)
- Tab B: Table of Conditions and Medical Foods (PDF - 88 KB)
- Tab C: Review of Treatment in PKU
- Response by the HHS Secretary to the April 7, 2009 Letter (PDF - 29 KB) October 2, 2009
Health Care Reform
White Paper on Health Care Reform and Public Health Newborn Screening Programs (PDF - 140 KB) March 23, 2010
- NBS and Health Care Reform White Paper ( PDF - 106 KB) March 23, 2010
- Response to March 23, 2010 Letter (PDF - 494 KB) September 23, 2010
- Interim Response from the Secretary to the March 23, 2010 Letter (PDF - 125 KB) April 20, 2010
Severe Combined Immune Deficiency
(PDF - 54 KB) February 25, 2010
- Report on Newborn Screening for Severe Combined Immunodeficiency (PDF - 327 KB) May 19, 2011
- Response by the HHS Secretary to the May 19, 2011 Letter (PDF - 226 KB) July 27, 2011
Recommended Uniform Screening Panel
Adoption by All State Newborn Screening Programs of the Recommended Uniform Screening Panel (PDF - 76 KB) November 22, 2009
- Letter from the Secretary (PDF - 100 KB) January 4, 2010
- Response by the HHS Secretary to the February 25, 2010 and November 22, 2009 Letters (PDF - 45 KB) May 21, 2010
Adoption of the ACMG-Recommended Screening Panel (PDF - 444 KB) September 9, 2005
- American College of Medical Genetics (ACMG) Report on Newborn Screening (PDF - 305 KB) April 20, 2005
- Response by the HHS Secretary to the April 21, 2005, September 9, 2005 and April 4, 2007 Letters (PDF -112 KB) October 21, 2008
Committee Progress
The Committee's Progress to Date in their Evidence Review Deliberations and in Other Committee Actions (PDF -37 KB) September 1, 2009
- Response by the HHS Secretary to the September 1, 2009 Letter (PDF - 335 KB) March 1, 2010
- Tab A: Committee’s Evidence Review Process (PDF - 597 KB)
- Tab B: Committee’s Education and Training Subcommittee Report (PDF - 76 KB)
The Committee's Progress to Date in Their Evidence Review Deliberations (PDF -88 KB) March 30, 2009
- Response by the HHS Secretary to the March 30, 2009 Letter (PDF - 111 KB) July 31, 2009
The Committee's Activities to Date (PDF -18 KB) October 2008
Prenatal Parental Education (PDF 107 KB) April 4, 2007
*Individuals using assistive technology may not be able to fully access information in these files. For assistance, please email HRSAAccessibility@hrsa.gov.