Obstetric Healthcare Providers FactSheet

CDC’s Response to Zika

US Zika Pregnancy Registry
Obstetric Healthcare Providers: 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. Despite
these observations, very little is known about the risks of Zika virus infection during
pregnancy. Information about the timing, absolute risk, and spectrum of outcomes
associated with Zika virus infection during pregnancy is needed to direct public
health action related to Zika virus and guide testing, evaluation, and management.

US Zika Pregnancy Registry
To understand more about Zika virus infection, CDC established the US Zika Pregnancy Registry and
is collaborating with state, tribal, local, and territorial health departments to collect information about
pregnancy and infant outcomes among pregnant women with laboratory evidence of Zika virus infection
and their infants. The data collected through this Registry will provide additional, more comprehensive
information to 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.

How to Participate
CDC and state, tribal, local, and territorial health departments request that healthcare providers
participate in the US Zika Pregnancy Registry by:
1. Reporting information about pregnant women with laboratory evidence of Zika virus
infection to their state, tribal, local, or territorial health department.
2. Collecting pertinent clinical information about pregnant women and their infants on the
Pregnancy and Zika Virus Disease Surveillance forms.
3. Providing the information to state, tribal, local or territorial health departments or directly to
CDC Registry staff if asked to do so by local health officials.
4. Notifying state, tribal, local, or territorial health department staff or CDC Registry staff of
adverse events (e.g., spontaneous abortion, termination of pregnancy).

Who to Report to the Registry
Healthcare providers should report the requested information to the health department in accordance
with applicable state, tribal, local and territorial laws. Those eligible for the registry include: 1) pregnant
women in the United States with laboratory evidence of Zika virus infection (positive or equivocal test
results, regardless of whether they have symptoms) and 2) periconceptionally, prenatally, or perinatally
exposed infants born to these women, including infants with congenital Zika virus infection.
Healthcare providers practicing in Puerto Rico should report information to the Puerto Rico Zika Active
Pregnancy Surveillance System (ZAPSS) rather than to the US Pregnancy Registry.*
*Puerto Rico has established a separate Zika Active Pregnancy Surveillance System (ZAPSS)

www.cdc.gov/zika
CS264086-A

June 22, 2016

How To Report to the Registry
ŠŠ Healthcare providers should contact their state, tribal, local, or territorial health department to arrange
for laboratory testing for Zika virus infection in pregnant women and infants who meet the clinical
criteria for testing as outlined in the CDC guidelines.
ŠŠ Healthcare providers can contact CDC (call CDC’s Emergency Operations Center watch desk at 770488-7100; email [email protected]; or fax 404-718-2200) to discuss information on pregnant
women with laboratory evidence of Zika virus infection. If healthcare providers contact CDC for clinical
consultation, Registry staff will ensure that state, tribal, local, or territorial health departments are
notified. CDC may also learn about pregnant women and infants with laboratory evidence of Zika virus
infection through national surveillance of arboviral diseases.

How the Data are Collected
Depending on the preference of the state, tribal, local, or territorial health department, either health
department staff or CDC Registry staff will contact healthcare providers caring for pregnant women and
their infants for data collection.
Data Collection Process

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

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). Data to be
collected include clinical information pertaining to the pregnant woman’s health, monitoring, and testing
during pregnancy, results from evaluation and testing conducted at birth, and clinical/developmental
information from the infant through the first year of life. As established in the HIPAA Privacy Rule (45 CFR
164.528), individuals have the right to request from covered entities (i.e., you, the healthcare provider) an
accounting of the disclosures of their protected health information.

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

CDC Guidance Materials
1. Update: Interim Guidelines for Health Care Providers Caring for Pregnant Women and Women of Reproductive Age
with Possible Zika Virus Exposure – United States, 2016 (April 1, 2016)
http://www.cdc.gov/mmwr/volumes/65/wr/mm6512e2.htm?s_cid=mm6512e2_w
2. Interim Guidelines for Healthcare Providers Caring for Infants and Children with Possible Zika Virus Infection –
United States, February 2016 (Feb. 19, 2016) http://www.cdc.gov/mmwr/volumes/65/wr/mm6507e1.htm
3. Zika Virus: Collection and Submission of Fetal Tissues for Zika Virus Testing
http://www.cdc.gov/zika/hc-providers/tissue-collection-submission.html
4. Collection and Submission of Body Fluids for Zika Virus Testing
http://www.cdc.gov/zika/hc-providers/body-fluids-collection-submission.html