How SET-NET Works
Overview
Through SET-NET, CDC, health departments, and healthcare providers track emerging health threats to protect mothers and babies.
Data Collection
Below are some examples of the information SET-NET collects, no matter which health threat is being studied:
- 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
These are known as general variables. Collecting information on these variables helps SET-NET describe characteristics that might increase 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 the other infections.
Figure: Examples of Types of Information being Collected
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.
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 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
- 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)
- 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 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.