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Newborn Screening Long-Term Follow-up Data Collection System


OHSU # 1019

Technology Overview:

Technology Overview

The Newborn Screening Long-term Follow-Up Data Collection System is a tool to collect and organize data of newborns for inherited, rare, metabolic disorders. The disorders fall into three different biochemical categories: fatty acid oxidation, organic acid or amino acid disorders.


 The collection system organizes data according to biochemical, physical, and mental parameters that are important to the long-term follow-up of newborns. While the collection system allows for the evaluation of efficacy of screening and treatment, it is not a case management system.


The tool comes in the form of files that can be downloaded from a secure website portal and includes a data dictionary, a User's Guide, and the Software for the systematic data collection.



For more information, contact:

Michele Gunness
Senior Technology Development Manager

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