Fact Sheet for Health Care Providers

CDC’s Response to Zika

US Zika Pregnancy Registry
Healthcare Providers: How to Register Patients
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
Zika virus infection during pregnancy and congenital Zika virus infection. The data collected through this
registry 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 cases of pregnant women with laboratory evidence of Zika virus 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 eligible cases to the health department in accordance with applicable
state, tribal, local and territorial laws. See https://www.cste2.org/docs/Zika_Virus_Disease_and_
Congenital_Zika_Virus_Infection_Interim.pdf Cases of Zika virus infection among pregnant women in
the United States with laboratory evidence of Zika virus infection (positive or inconclusive test results,
regardless of whether they have symptoms) and cases of congenital Zika virus infection in infants are
eligible for inclusion in the registry (including but not limited to cases that meet the criteria for confirmed
and probable cases based on CSTE case defintitions).
Healthcare providers practicing in Puerto Rico should report eligible cases to the Puerto Rico Zika Active
Pregnancy Surveillance System (ZAPSS) rather than to the US Pregnancy Registry.
*Puerto Rico is establishing a separate Zika Active Pregnancy Surveillance System (ZAPSS)

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March 18, 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 Through national surveillance of arboviral diseases, CDC may learn about pregnant women and infants
with laboratory evidence of Zika virus infection. Healthcare providers can also contact the CDC Zika
Pregnancy hotline (available through the EOC Watch Desk at 770-488-7100, [email protected] or
[email protected] or fax 404-718-2200) to discuss women with laboratory evidence of Zika
virus infection. If cases of Zika virus infection are reported by healthcare providers to CDC, registry
staff will ensure that state, tribal, local, or territorial health departments are notified.

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.

Time points for data collection
Initial Identification of case
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,
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”**).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.

More Information about Zika
For more information or to contact CDC Registry staff, call the CDC Emergency Operations
Center watch desk at 770-488-7100 and ask for the Zika Pregnancy Hotline or email
[email protected]. More information on caring for pregnant women, infants, or children
with Zika virus infection is available at http://www.cdc.gov/zika.

CDC Guidance Materials
1. Interim Guidelines for Health Care Providers Caring for Pregnant Women and Women of Reproductive Age
with Possible Zika Virus Exposure – United States, 2016 (Feb. 5, 2016)
http://www.cdc.gov/mmwr/volumes/65/wr/mm6505e2.htm
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
**Pursuant to 45 CFR § 164.512(b) of the Privacy Rule, covered entities including health plans, health care clearinghouses, and health care
providers may disclose, without individual authorization, protected health information to public health authorities*”… authorized by law to
collect or receive such information for the purpose of preventing or controlling disease, injury, or disability, including, but not limited to, the
reporting of disease, injury, vital events such as birth or death, and the conduct of public health surveillance, public health investigations, and
public health interventions… .” CDC is requesting these records as a public health authority conducting a public health activity as described
by 45 CFR § 164.512(b), and as authorized by section 301 of the Public Health Service Act. The information requested represents the
minimum necessary to carry out the public health purposes of this project pursuant to 45 CFR § 164.514(d) of the Privacy Rule.
Reference: Centers for Disease Control and Prevention. HIPAA Privacy Rule and public health: guidance from CDC and the U.S. Department of Health and Human Services. MMWR 2003;52 S-1);1-12.

www.cdc.gov/zika