Reports

Reports to Congress

The Advisory Committee on Heritable Disorders in Newborns and Children Report to Congress 2022 Annual Report (PDF - 388 KB)

The Advisory Committee on Heritable Disorders in Newborns and Children Report to Congress 2021 Annual Report (PDF - 390 KB)

The Advisory Committee on Heritable Disorders in Newborns and Children Report to Congress 2020 Annual Report (PDF - 468 KB)

The Advisory Committee on Heritable Disorders in Newborns and Children Report to Congress 2019 Annual Report (PDF - 172 KB)

The Advisory Committee on Heritable Disorders in Newborns and Children Report to Congress 2018 Annual Report (PDF - 1 MB)

The Advisory Committee on Heritable Disorders in Newborns and Children Report to Congress 2013 – 2017 (PDF - 622 KB)

Secretary's Advisory Committee on Heritable Disorders in Newborns and Children 2013 Annual Report (PDF - 677 KB)

Secretary's Advisory Committee on Heritable Disorders in Newborns and Children 2012 Annual Report (PDF - 641 KB)

Secretary's Advisory Committee on Heritable Disorders in Newborns and Children 2011 Annual Report to Congress (PDF - 871 KB)

Other Committee Reports

The Federal Advisory Committee on Heritable Disorders in Newborns and Children periodically produces white papers and reports to the Secretary of the U.S. Department of Health and Human Services. Along with providing their recommendations, these reports and papers address the mission of the Committee, to reduce morbidity and mortality in newborns and children who have, or are at risk for, heritable disorders.

2018

Communication guide for clinicians and providers to help frame the initial notification and discussion with parents about positive/abnormal/out-of-range newborn screening results (PDF - 289 KB)

The Role of Quality Measures to Promote Long-Term Follow-up of Children Identified by Newborn Screening Programs (PDF - 3 MB)

2016

Summary: Report and Recommendations of the Pilot Studies Workgroup (PDF - 200 KB)

Report and Recommendations of the Pilot Studies Workgroup (PDF - 541 KB)

2014

Succinylacetone as Primary Marker to Detect Tyrosinemia Type I in Newborns and its Measurement by Newborn Screening Programs

2013

Decision-making Process for Conditions Nominated to the Recommended Uniform Screening Panel: Statement of the US Department of Health and Human Services Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children

2012

Insurance coverage of medical foods for treatment of inherited metabolic disorders (PDF - 621 KB)

2011

Committee Report: Considerations and recommendations for national guidance regarding the retention and use of residual dried blood spot specimens after newborn screening  

Newborn Screening for Severe Combined Immunodeficiency Disorder (PDF - 327 KB)

Secretary's Advisory Committee on Heritable Disorders in Newborns and Children Response to the President’s Council on Bioethics report: The changing moral focus of newborn screening

2010

Briefing Paper - Screening U.S. College Athletes for Their Sickle Cell Disease Carrier Status (PDF - 221 KB)

Briefing Paper - Considerations and Recommendations for a National Policy Regarding the Retention and Use of Dried Blood Spot Specimens After Newborn Screening (PDF - 479 KB)

An evidence development process for newborn screening

A blueprint for maternal and child health primary care physician education in medical genetics and genomic medicine: Recommendations of the United States Secretary for Health and Human Services Advisory Committee on Heritable Disorders in Newborns and Children

Committee Report: Method for evaluating conditions nominated for population-based screening of newborns and children

2008

Long-term follow-up after diagnosis resulting from newborn screening: statement of the US Secretary of Health and Human Services' Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children

2007

Advancing the Current Recommended Panel of Conditions for Newborn Screening (PDF - 49 KB)

The Road Map to Implement Long-Term Follow-up and Treatment in Newborn Screening (PDF - 207 KB)

2006

Evidence-based Evaluation and Decision Process for the Advisory Committee on Heritable Disorders and Genetic Diseases in Newborn and Children: A Workgroup Meeting Summary (PDF - 344 KB)

Newborn Screening: Toward a Uniform Screening Panel and System (PDF - 11 MB)

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