Newborn Screening Long-Term Follow-up Data Collection System
OHSU # 1019
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:
Senior Technology Development Manager