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NEWBORN SCREENING PRACTITIONER'S MANUAL
The Newborn Screening Practitioner's Manual was developed by members of the Newborn Screening Committee of the MoStGeNe. It is the Committee's hope that this manual will assist practitioners in understanding the components of newborn screening and their importance in ensuring that children affected with these conditions are able to achieve their highest potential. Download now.
Genetic Drift
The MoStGeNe educational publication that provides a thorough overview of a single topic in each issue. Download Genetic Drift: Newborn Screening in the 21st Century
Expanded Newborn Screening website
We are pleased to announce our completely revised and updated Expanded Newborn Screening website at www.newbornscreening.info.
As part of our federal Health Resources and Services Administration (HRSA) Genetic Services Branch funded STAR-G project*, the website has been developed to provide resources to families, health care providers and state newborn metabolic screening programs. Although the information was developed to meet the needs of our region, much of the information is useful for others across the country.
The products on the website were developed based on qualitative information obtained from focus group sessions and quantitative information obtained from surveys of hundreds of parents. The products have been developed and reviewed by state genetics and newborn screening programs, metabolic specialists, genetic services providers, families, and health educators. The goal of the website is to provide general information to aid our families, health care providers, and state programs who are seeking information. The information presented should not substitute for sound medical advice regarding management for individuals.
Some highlights of the website include:
- Parent and health care provider fact sheets on disorders screened for by the newborn screening programs participating in the project
- Information about how to obtain screening
- Information about our research findings on the financial, ethical and social issues surrounding expanded newborn screening
- Information about creating newborn screening educational materials based on our research findings
A message and graphics library to help you create newborn screening educational materials.
Please feel free to use the materials to develop your own educational materials. You may also put our website as a link on your website.
*The Screening, Technology and Research in Genetics (STAR-G) Project is a collaborative project involving the genetics and newborn screening programs in Alaska, California, Hawaii, Idaho, Oregon and Washington.
This effort has been led by the Hawai`i Department of Health to obtain research data, identify strategies, and develop materials for addressing the financial, ethical, legal and social issues surrounding the use of new technologies for newborn metabolic screening of culturally and ethnically diverse populations.
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