Newborn Screening Publications
Newborn Screening Publications:
Newborn screening programs are a collaborative effort between public health departments, hospitals, government agencies and the parents of the children screened. As new technologies evolve, new challenges are faced. The NBSTRN strives to be on the cutting edge of all NBS related information examining the technical, clinical, ethical, legal and social issues posed in the newborn screening community.
To assist in policy improvements that can protect the individual’s privacy and allow for important public health uses of residual newborn screening specimens, the Secretary of Health and Human Services’ Advisory Committee on Heritable Disorders in Newborns and Children has developed recommendations (with requested action by the Secretary where applicable). This report presents the Committee’s recommendations and reviews the pertinent associated issues.
To assist in policy improvements that can protect the individual’s privacy and allow for important public health uses of residual newborn screening specimens, the Secretary of Health and Human Services’ Advisory Committee on Heritable Disorders in Newborns and Children has developed recommendations (with requested action by the Secretary where applicable). This report presents the Committee’s recommendations and reviews the pertinent associated issues.
Newborn Screening Long Term Follow-up Supplement to Genetics in Medicine
In October 2008, an inaugural meeting of the National Institute of Child Health and Human Development-sponsored National Coordinating Center Long-Term Follow-Up Data Collection Work Group brought together partners from Health Resources and Services Administration-sponsored Regional Genetics Collaboratives to review pilot projects undertaken to promote systematic long-term follow-up for children with inborn errors of metabolism identified by newborn bloodspot screening. Beginning with these projects, the goal of this meeting was to provide a foundation for national planning for a common data set to be used for long-term follow-up. This supplement summarizes these initial projects.
Challenges and Opportunities in Using Residual Newborn Screening Samples For Translational Research - IOM Workshop Summary
On May 24, 2010, the IOM held a workshop to examine the issues surrounding the use of newborn screening samples for translational research, including autonomy, confidentiality, privacy, informed consent, and consent to future use of samples originally taken for a different purpose.
National Newborn Screening Status Report
The National Newborn Screening Status Report lists the status of newborn screening state by state and is available on the National Newborn Screening and Genetic Resource Center (NNSGRC) Web site. The NNSGRC provides information and resources in the area of newborn screening and genetics to benefit health professionals, the public health community, consumers and government officials.
Title V 75 Anniversary Celebration. Newborn Screening Services: Then and Now
This report discusses the history of newborn screening and genetic services in the United States. It discusses the development of the state-based newborn screening programs, highlights conditions for which tests exist, and lists the average number of newborn screening conditions required in United States programs.
2009 Newborn Screening Detailed Use Case
2009 Newborn Screening Detailed Use Case was developed by Office of the National Coordinator for Health Information Technology (ONC) to represent the AHIC priorities and provide context for the national health agenda activities, beginning with the selection of harmonized standards by the Healthcare Information Technology Standards Panel (HITSP).
Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research
Newborn screening samples are used to test more than 4 million infants each year for life-threatening diseases that are treatable if found at birth. These specimens also represent a potentially invaluable resource for public health and biomedical research. The Institute of Medicine (IOM) held a workshop to examine issues surrounding the use of residual specimens for translational research.
OHRP - Guidance on Research Involving Coded Private Information or Biological Specimens
This document applies to research involving coded private information or human biological specimens that is conducted or supported by HHS.
NBSTRN
The Mission of the Newborn Screening Translational Research Network (NBSTRN) is to improve the health outcomes of newborns with genetic or congenital disorders by means of an infrastructure that allows investigators access to robust resources for newborn screening research.
The NBSTRN is funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health (contract #HHSN275200800001C). ©2011 American College of Medical Genetics. All Rights Reserved.
