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Newborn Screening Characteristics of State Programs

By Kanof, Marjorie

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Book Id: WPLBN0000122465
Format Type: PDF eBook
File Size: 0.5 MB
Reproduction Date: 2005
Full Text

Title: Newborn Screening Characteristics of State Programs  
Author: Kanof, Marjorie
Language: English
Subject: Health., Medical research, Medical reports
Collections: Medical Library Collection
Publication Date:
Publisher: Centers for Disease Control and Prevention


APA MLA Chicago

Kanof, M. (n.d.). Newborn Screening Characteristics of State Programs. Retrieved from

Newborn screening is a state public health activity, with each state responsible for designing and implementing its own program. For example, each state decides which disorders to include in its screening program. To assist the Congress as it considers actions related to newborn screening, you asked us to provide information on the variations among state newborn screening programs. In response to your request, this report provides information on (1) the disorders tested for in each state; how disorders are selected, including the use of advisory committees; and how states educate parents and health care providers about newborn screening, notify them of screening results, and follow up on abnormal results, (2) state newborn screening programs’ expenditures and funding sources, (3) efforts by the Department of Health and Human Services (HHS) and states to monitor and evaluate the quality of state newborn screening programs, and (4) how state laws address consent and privacy issues related to newborn screening. As you requested, this report focuses only on newborn screening for genetic and metabolic disorders and does not include information on screening programs for hearing and infectious diseases.

Table of Contents
Contents Letter 1 Results in Brief 2 Background 4 Disorders Included in State Newborn Screening Programs Vary, but Administration of Program Components Is Similar 8 State Spending on Newborn Screening Varies, and Majority of State Programs Receive Most Funding from Fees 14 Newborn Screening Quality Assurance Efforts Focus on Laboratory Testing and Performance Monitoring 17 States Generally Do Not Require Consent for Newborn Screening and Most Limit Disclosure of Screening Information 21 Agency Comments 26 Appendix I Scope and Methodology 28 Appendix II Number of Disorders Included in State Newborn Screening Programs, December 2002 31 Appendix III Information on Disorders Most Commonly Included in State Newborn Screening Programs 33 Appendix IV Selected Disorders States Screen for Using MS/MS and Number of States That Screen for Each, December 2002 34 Appendix V State Newborn Screening Program Fees and Expenditures Per Infant Screened 35 Appendix VI Comments from the Department of Health and Human Services 37


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