The NIH/NICHD Funded Newborn Screening Translational Research Network An Project to Develop...
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![Page 1: The NIH/NICHD Funded Newborn Screening Translational Research Network An Project to Develop Infrastructure to Facilitate Research and Clinical Investigation.](https://reader036.fdocuments.us/reader036/viewer/2022062401/5a4d1b3c7f8b9ab05999f07a/html5/thumbnails/1.jpg)
The NIH/NICHD Funded Newborn Screening Translational
Research Network
An Project to Develop Infrastructure to Facilitate Research and Clinical Investigation
to Improve Newborn Screening
![Page 2: The NIH/NICHD Funded Newborn Screening Translational Research Network An Project to Develop Infrastructure to Facilitate Research and Clinical Investigation.](https://reader036.fdocuments.us/reader036/viewer/2022062401/5a4d1b3c7f8b9ab05999f07a/html5/thumbnails/2.jpg)
![Page 3: The NIH/NICHD Funded Newborn Screening Translational Research Network An Project to Develop Infrastructure to Facilitate Research and Clinical Investigation.](https://reader036.fdocuments.us/reader036/viewer/2022062401/5a4d1b3c7f8b9ab05999f07a/html5/thumbnails/3.jpg)
![Page 4: The NIH/NICHD Funded Newborn Screening Translational Research Network An Project to Develop Infrastructure to Facilitate Research and Clinical Investigation.](https://reader036.fdocuments.us/reader036/viewer/2022062401/5a4d1b3c7f8b9ab05999f07a/html5/thumbnails/4.jpg)
![Page 5: The NIH/NICHD Funded Newborn Screening Translational Research Network An Project to Develop Infrastructure to Facilitate Research and Clinical Investigation.](https://reader036.fdocuments.us/reader036/viewer/2022062401/5a4d1b3c7f8b9ab05999f07a/html5/thumbnails/5.jpg)
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NBSTRN Infrastructure to Meet Needs
• Informatics system to support– Patient registry development– Protocol development
• Standardized protocols and data languages – Data warehousing– Minimal duplication of work and expense
• Patient data – Identifiable data available to provider– Deidentified data for public health
• Appropriate to needs in LTFU as an evaluation tool
• Biospecimen repositories
![Page 7: The NIH/NICHD Funded Newborn Screening Translational Research Network An Project to Develop Infrastructure to Facilitate Research and Clinical Investigation.](https://reader036.fdocuments.us/reader036/viewer/2022062401/5a4d1b3c7f8b9ab05999f07a/html5/thumbnails/7.jpg)
Additional NBSTRN-Related Activities
• Innovative Therapies in Newborn Screening– 17 projects funded
• New Technologies in Newborn Screening– New York State project to evaluate Luminex
bead array technology for use in newborn screening
– Dr. Ronald Scott at University of Washington for the development of MS/MS-based NBS for Lysosomal Storage Disroders