SET-NET: How It Works

Overview

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

From Zika to COVID-19: How CDC is Tracking the Impact of Infectious Threats on Pregnant People and their Infants

The health department finds a pregnant person or a newborn who tested positive for an infection either by a notice healthcare provider, a notice from a lab, or linking data from different sources, like lab records, to birth or medical records.

The health department then collects more information. This might include information about the pregnant person, like the date of the positive test, and information about the baby, like if the baby was born early.

The health department securely sends the information to CDC's Surveillance for Emerging Threats to Mothers and Babies Network (SET-NET).

The health department continues to collect the baby's medical information and lab test results from birth and pediatrics visits and sends it to CDC.

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Data for action

SET-NET findings help inform prevention and treatment guidance for pregnant people and their infants as well as for the providers who care for them. 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.

Health departments and CDC scientists analyze the information to report how often pregnant people and babies are affected by emerging and re-emerging infectious threats locally and nationally, and answer key questions about these threats, for example:

• What are the impacts on the pregnant person?
• What are the short and long-term outcomes for the baby?
• How can infection be prevented?

Insights from these analyses are used to update guidance for policymakers, the public, and healthcare providers caring for families affected by emerging infectious threats, target outreach or resources where they are needed most, and better prepare for the next threat to pregnant people and their babies.

SET-NET data are helping families affected by emerging infectious threats. Learn more about SET-NET at www.cdc.gov/SETNET

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Steps we take

Data collection

We collect information on a standard set of variables, called general variables, for all health threats being studied. Collecting information on these variables helps us describe characteristics that might increase the risk for poor health outcomes related to infections. Examples include the following:

• Age
• Race and ethnicity
• 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

In addition to general variables, we collect information specific to certain exposures. We call these modular variables. For example, there are laboratory results collected for syphilis that are not collected for the other infections.

Structuring SET-NET this way allows for consistency across general information as well as flexibility to adapt to new exposures.

Data sources

SET-NET uses only existing data and does not require additional data collection. SET-NET collects data from existing health records. Example sources include nationally notifiable case report forms, birth and death records, laboratory test results, and medical records.

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

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 them
• 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

• American Academy of Pediatrics (AAP)
• American College of Obstetricians and Gynecologists (ACOG)
• Association of Maternal & Child Health Programs (AMCHP)
• Association of State and Territorial Health Officials (ASTHO)
• Council for State and Territorial Epidemiologists (CSTE)
• March of Dimes
• National Association of County and City Health Officials (NACCHO)

Protection of medical information

CDC takes the protection of confidential and sensitive information very seriously. CDC follows strict standards to protect the privacy of people whose health information we collect. 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.