Fact Sheet - Health Departments

CDC’s Response to Zika

US ZIKA PREGNANCY REGISTRY
Health Departments: How to Participate
Zika virus infection during pregnancy has been linked to adverse outcomes
including pregnancy loss and microcephaly, absent or poorly developed brain
structures, defects of the eye and impaired growth in fetuses and infants.
Information about the timing, absolute risk, and spectrum of outcomes associated
with Zika virus infection during pregnancy is needed to guide testing, clinical
evaluation, and management and public health action related to Zika virus.

US Zika Pregnancy Registry
CDC established the US Zika Pregnancy Registry and is collaborating with state, tribal, local, and territorial health departments to
collect and share information about Zika virus infection during pregnancy. The data collected through this Registry will complement
notifiable disease case reporting and will be used to update recommendations for clinical care, to plan for services for pregnant
women and families affected by Zika virus, and to improve prevention of Zika virus infection during pregnancy.

Reasons to Participate
Reporting to the US Zika Pregnancy Registry will allow aggregate data to inform public health efforts at the local level as well as
broader recommendations. All states and territories are now participating in the US Zika Pregnancy Registry to conduct enhanced
surveillance.

How to Participate
State, tribal, local, and territorial health departments can participate in the US Zika Pregnancy Registry by
•• Identifying pregnant women and infants eligible for Zika virus testing in accordance with State or CDC guidelines.
•• Coordinating testing at a State Public Health Laboratory or CDC for those eligible.
•• Reporting information about pregnant women and infants who meet the eligibility criteria shown below.
•• Collecting enhanced surveillance data about pregnant women and their infants who are eligible.
•• Working with CDC to determine state-specific methods for collecting and sharing data.

Who is Eligible to be in the Registry
•• Pregnant women in the United States and US territories (with the exception of Puerto Rico) with laboratory evidence
of possible Zika virus infection (regardless of whether they have symptoms) and periconceptionally, prenatally, or
perinatally exposed infants born to these women.
•• Infants with laboratory evidence of possible congenital Zika virus infection (regardless of whether they have
symptoms) and their mothers.

www.cdc.gov/zika

CS264794-A

January 20, 2017

CDC’s Response to Zika

How to Collect the Data
Various methods (e.g., medical record abstraction, telephone consultation) can be used to collect surveillance information for
the Registry. Depending on preference and capacity of the state, tribal, local, or territorial health department, staff may choose
to follow up with healthcare providers.

DATA COLLECTION PROCESS

HEALTH DEPARTMENTS

Time points for data collection
Initial Identification
2nd and 3rd trimester
At delivery
Infant: Months 2, 6, and 12

Health departments may obtain data collection forms by emailing the Zika pregnancy email address (ZikaPregnancy@cdc.gov).
In addition, a shared website for State Zika Coordinators and Registry staff and a secure file transfer protocol (FTP) site has
been established. Data to be collected include clinical information pertaining to the pregnant woman and the infant through the
first year of life. CDC staff will provide Health Departments with paper and PDF-fillable US Zika Pregnancy Registry forms and
database support for local electronic data entry.
CDC is requesting 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 its implementing regulations, Standards for Privacy of Individually
Identifiable Health Information (45 CFR § 164.501) (“Privacy Rule”) , covered entities (e.g., healthcare providers) may disclose
protected health information without patient authorization to a public health authority that is authorized by law to collect or
receive such information for the purpose of preventing or controlling disease (42 CFR 164.512). As established in the HIPAA
Privacy Rule (45 CFR 164.528), individuals have the right to request from covered entities (i.e., the healthcare provider) an
accounting of the disclosures of their protected health information.
You may wish to use the fact sheet for pregnant women to let your patients know how their information is being used.  This
fact sheet also contains information on the Assurance of Confidentiality that CDC has obtained.  The Assurance is a formal
confidentiality protection authorized under Section 308 (d) of the Public Service Act.  Under this Assurance, identifiable
information about your patient and the care you provide can only be used to better understand Zika virus infection during
pregnancy and its outcomes.  CDC cannot share it with anyone without your permission and your patient’s permission, even if an
official of the court, the government or law requests it.

How to Report Registry Data Securely to CDC
CDC Registry staff have identified State Zika Coordinators to tailor data collection, reporting, and sharing of information in
accordance with the specifications of each state. Health department staff can submit information to CDC Registry staff by
•• Electronic data transfer through CDC’s Secure Access Management Services (SAMS)
•• Electronic data transfer through FTP (e.g. CSV, Excel, Access, Word, PDF files)
•• Secure fax at 404-718-1013
•• Telephone report (Call 770-488-7100)
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Puerto Rico is establishing a separate Zika Active Pregnancy Surveillance System (ZAPSS) to collect information on eligible cases in the Commonwealth of Puerto Rico.

Thank you for your interest and participation in the US Zika Pregnancy Registry

More Information about Zika
For more information about Zika, visit CDC’s website www.cdc.gov/zika.
If families would like to speak to someone about a possible Zika virus diagnosis during pregnancy, Mother to Baby
experts are available to answer questions in English or Spanish by phone, email, or chat: www.MotherToBaby.org.
The free and confidential service is available Monday - Friday from 8am - 5pm (local time).