National Newborn Screening and Genetics Resource Center

Links of Special Interest

Papers and Reports----------------------------------------------

National Newborn Screening Information System (NNSIS) Database of State Newborn Screening Program Information and Data from 2001 to Present

Proceedings from the APHL 2010 Newborn Screening and Genetic Testing Symposium

ASTHO Position Statement on NBS: Association of State and Territorial Health Officials Position Statement on Newborn Screening.

HRSA on YouTube: Link to HRSA's YouTube channel

Genetic Alliance on YouTube: Link to the Genetic Alliance YouTube Channel

"The Story of Newborn Screening" by Harvey Levy, MD: A 10-part webcast from the New England Regional Consortium describing the basics of newborn screening (may be viewed in its entirety or in individual segments).

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

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.

Save Babies Through Screening NBS Video: New video sharing experiences of parents and expert opinions regarding the newborn screening process.

Michigan Neonatal Biobank The Michigan Neonatal Biobank ("Biobank") is a storage and management facility for The Michigan Department of Community Health’s archive of dried blood spot cards.

ACMG Clinic Services Search Engine ACMG's Genetics Clinics Database is a service for individuals who wish to locate a genetics center. The Database contains the locations of genetics clinics that have requested to be listed.

Newborn Screening Use Case Use case documents developed by ONC -Draft UseCase -Draft ResourceGuide -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

Foreign Language Educational Materials

Laboratory Services: Additional non-state newborn screening laboratory services

SACHDNC: Secretary's Advisory Committee on Heritable Disorders in Newborns and Children

NNSIS: National Newborn Screening Information System: Program Information and Data from 2001 to Present Copies of Written Reports 1996 1997 1998 1999 2000

NNSIS Incidence Reports 10 Year (1991-2000) 2001 2002 2003 2004 2005 2006

PEAS: Performance Evaluation and Assessment Scheme

Site updated February 1, 2012

Contact Colleen Buechner with questions or comments concerning the website. buechner@uthscsa.edu