At a glance
Enhancing Data-driven Disease Detection in Newborns (ED3N) is a national data platform designed to help newborn screening (NBS) programs improve how they interpret screening results. With ED3N, NBS programs can improve their ability to determine which babies are more likely to have a rare disease, leading to better support for babies and families.
How does ED3N help NBS programs?
NBS professionals face growing challenges deciding which babies are more likely to have a rare disease. New diseases are added to screening programs. More complex screening data means it can become harder to determine how likely a biological marker is to indicate the presence of disease or disease severity. Also, newborn screening programs use different methods and have different levels of resources. As a result, test results may be interpreted inconsistently, diagnoses can be delayed, and measures of program performance can vary.
ED3N helps NBS programs by:
- Improving the detection of babies at risk for diseases so they can get care sooner.
- Reducing differences between programs in how screening results are interpreted.
- Making it easier for programs to securely share de-identified data and learn from each other.
- Providing equal access to advanced data tools for all programs.
What types of data does ED3N use?
ED3N uses biochemical and molecular data from NBS programs and clinical information from NBS programs and healthcare providers. It uses advanced tools, including artificial intelligence and machine learning, to improve how screening tests detect diseases and interpret laboratory results. ED3N helps users find the latest scientific information quickly by bringing analytic resources into the platform so they do not need to use valuable time seeking information from multiple web sites.
How does CDC protect the data?
All data are stored securely in the cloud. ED3N uses strong privacy measures to keep information safe and to make sure only authorized people can access it. The platform follows strict rules to protect patient privacy and data security. The data are de-identified; no personal identifying information (PII) is stored on any federal system, and programs can choose not to send PII.
When will ED3N be ready for states?
The platform is expected to be fully operational by 2028. The module to evaluate molecular data is available now.
Who can use ED3N?
Access to the platform is controlled by CDC. Users need an approved account through CDC's Secure Access Management Services (SAMS).
Our state NBS program is interested in using ED3N. How can we learn more?
For more information about ED3N or how to access the platform, please contact CDC ED3N support.
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