Newborn Screening Long-Term Follow-up Data Collection System

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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.

Patent Information:
For Information, Contact:
Michele Gunness
Senior Technology Development Manager
Oregon Health & Science University
(503) 494-8200
Christiane Winter
Judi Tuerck
Sara Copeland
Lori Paradise Harding
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