Links of Special Interest
Papers and
Reports--------------------------------------
Message Board:
A discussion forum for consumers of newborn
screening services including healthcare workers, parents, and others
affiliated with newborn screening programs.
SACGHS
Report: Oversight of Genetic Testing (2008)
ACT Sheets (ACMG)
ACMG Newborn Screening Report (2006)
- Executive Summary
Fact Sheets
and
Introduction
(AAP)
AAP Blueprint for Newborn Screening
(2000)
- Executive Summary
Screening
Programs------------------------------------
US Newborn
Screening
Programs (clickable map)
US Genetics Programs (clickable map)
Regional Collaboratives (clickable map)
NBS
Program
Contact Information
 Conditions
screened by US programs
HTML,
MS-Word,
PDF
Maps of conditions screened (MOD)
 Conditions
screened by Canadian programs
PDF
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 Welcome to the National Newborn Screening
and Genetics Resource Center web site: GeNeS-R-US,
(Genetic and Newborn
Screening
Resource
Center of the United
States).
The National Newborn Screening and Genetics Resource Center (NNSGRC)
is a cooperative agreement between the Maternal and Child Health Bureau (MCHB), Genetic
Services Branch and the University of Texas Health Science Center at San Antonio
(UTHSCSA), Department of Pediatrics.
We provide information and resources in the area of newborn screening and genetics to
benefit health professionals, the public health community, consumers and government
officials.
Related
Links-----------------------------------
Newborn
Screening Use Case Use case documents developed by ONC
-Draft
Use Case
-Draft
Resource Guide
-Resource
Database a web-based tool to allow the review of proposed
standards for newborn screening condition and analyte terminology,
codes, and mapping.
Brochure for Parents:
Model developed for state use based on parent focus groups
Brochure for Providers:
Model developed for state use based on provider focus groups
Brochure
for Grandparents
Laboratory Services:
Additional non-state newborn screening laboratory services
ACHDNC:
Secretary's Advisory Committee on Heritable Disorders in Newborns
and Children
SACGHS: Secretary's Advisory Committee on Genetics,Health and Society
NNSIS: National Newborn
Screening Information System: Program Information and Data from 2001 to
Present
Copies of Written Reports
1996
1999
1997
2000
1998
PEAS: Performance Evaluation
and Assessment Scheme
Site updated January 26, 2009 Contact
Colleen Buechner with questions
or comments concerning the website.
buechner@uthscsa.edu
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