How SET-NET Works

Overview

Through SET-NET, CDC, health departments, and healthcare providers track emerging health threats to protect mothers and babies.

SET-NET Overview animation, see text version below

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Data Collection

Below are some examples of the information SET-NET collects, no matter which health threat is being studied:

  • Mother’s age
  • Mother’s race and ethnicity​
  • Mother’s health conditions before pregnancy (e.g., diabetes)
  • Alcohol and tobacco use​
  • Pregnancy complications​ (e.g., gestational diabetes)
  • Infant sex​, height, weight, and head circumference
  • Infant physical exam findings
  • Birth defects​

These are known as general variables. Collecting information on these variables helps SET-NET describe characteristics that might put mothers or babies at increased risk for poor health outcomes related to infections.

In addition to general variables, we collect information specific to certain exposures. For example, there are laboratory results collected for syphilis only that are not collected for hepatitis C or COVID-19.

Figure: Types of Information being collected

Image showing four interconnected puzzle pieces of different colors with one titled “General” in the center, surrounded by other titled “COVID-19 module,” “Hepatitis C module,” and “Syphilis module”

General variables apply to all mother-baby pairs captured through SET-NET

Modular variables are specific to the exposure being studied (e.g., COVID-19, hepatitis C, syphilis)

Structuring SET-NET in this way allows for consistency across general information as well as flexibility to adapt to new infections or exposures. SET-NET collects data from existing health records, including nationally notifiable case report forms, birth and death records, laboratory test results, and medical records. SET-NET uses only existing data and does not require additional data collection.

To learn about effects on children, SET-NET collects data from pediatric well child visits. The length of time that a baby is followed varies by exposure.

Methodology

An in-depth description of SET-NET’s methods can be found in the papers below.

A Preparedness Model for Mother-Baby Linked Longitudinal Surveillance for Emerging Threats.
Maternal and Child Health Journal; January 4, 2021; 1–9
Woodworth KR, Reynolds MR, Burkel V, et al.

Sampling and Weighting Methods For COVID-19 End of Pregnancy Medical Record Abstraction [PDF – 327 KB]

Data for Action

Several analyses of SET-NET data have been shared on CDC’s website. Findings help inform prevention and treatment guidance for pregnant people and their infants as well as for the providers that care for them.

Data for action animation, see text version below.

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Data on COVID-19 during Pregnancy

Resources on COVID-19 for Pregnant People

Participation

Health Departments

The success of SET-NET depends on the collaboration of state, tribal, local, and territorial health departments.

These health departments participate in the following ways:

  • Identifying pregnant people with an infection during pregnancy and their babies
  • Collecting, analyzing, and reporting information about pregnant people and infants
  • Working with CDC to determine the best methods for collecting and sharing data

Doctors and Nurses

Healthcare providers participate by reporting medical information of pregnant people and infants to their health department.

Partner Organizations

CDC works with public health, clinical, and community-based organizations to

  • Integrate maternal and child health programs into preparedness activities to address emerging threats
  • Collaborate on public health and clinical guidelines
  • Coordinate communication and outreach to clinicians, health departments, and families

Examples of these partners include

Protection of Medical Information

CDC takes the protection of confidential and sensitive information very seriously. CDC follows strict standards to ensure that the privacy of people whose health information we collect is protected. Information is collected in a way that ensures it is safeguarded against unauthorized disclosure. CDC will not release any data that could be used to identify someone.

CDC requests the collection of clinical information in identifiable form as a public health authority. As defined in the Health Insurance Portability and Accountability Act (HIPAA) and the Standards for Privacy of Individually Identifiable Health Information regulations (“Privacy Rule”), healthcare providers may disclose protected health information without patient authorization to a public health authority if the purpose is preventing or controlling disease.

An additional safeguard is that the medical information in SET-NET is protected by an Assurance of Confidentiality. CDC has determined that SET-NET is nonresearch public health surveillance.

Looking to the Future

SET-NET is a preparedness network that is ready to be adapted for the next threat to mothers and babies. SET-NET aims to ensure that the needs of pregnant people and their infants are met during a public health emergency.