Fact Sheet - Pediatric Provider

CDC’s Response to Zika

US ZIKA PREGNANCY REGISTRY
Pediatric 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
to infants. More information about the timing, absolute risk, and spectrum of
outcomes associated with Zika virus infection among infants is needed to direct
public health action related to Zika virus and guide testing, evaluation, and
management of pregnant women and infants exposed to Zika virus.

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 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, children, and families affected by Zika virus, and to help prevent Zika virus
infection during pregnancy.

How to Participate
CDC and state, tribal, local, and territorial health departments request that pediatric healthcare providers participate in
the US Zika Pregnancy Registry by:
1. Identifying and reporting suspected congenital Zika virus exposure to their state, tribal, local, or territorial health
department for possible testing; you may contact [email protected] to receive US Zika Pregnancy Registry
State Health Department contact information.
2. Collecting pertinent clinical information about infants born to women with laboratory evidence of Zika virus infection or
infants with congenital Zika virus infection.
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., perinatal
or infant deaths).

Who to Report to the Registry
Infants are eligible for inclusion in the US Zika Pregnancy Registry if they are born in a US state or territory (with the
exception of Puerto Rico) and are either: 1) born to a woman with laboratory evidence of possible Zika virus infection
(regardless of whether she has symptoms, or 2) infants with laboratory evidence of possible congenital Zika virus
infection (regardless of whether they have symptoms).

www.cdc.gov/zika

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January 20, 2017

CDC’s Response to Zika
Some infants who meet the above criteria will have been identified prenatally and reported to the health department in accordance with
applicable state, tribal, local and territorial laws supporting notifiable disease surveillance. However, pediatric healthcare providers may
also identify previously unrecognized infants with congenital Zika virus infection or with periconceptional, prenatal, or perinatal exposure.
Information about these infants should be reported to the state, tribal, local, or territorial health department and are eligible to be included
in the US Zika Registry. The US Zika Pregnancy Registry will collect supplemental surveillance information from routine medical care of
women through pregnancy and infants through the first year of life.
Healthcare providers practicing in Puerto Rico should report information to the Puerto Rico Zika Active Pregnancy Surveillance
System (ZAPSS) rather than to the US Zika Pregnancy Registry.1

How To Report to the Registry
•• Healthcare providers should contact their state, tribal, local, or territorial health department to arrange for laboratory testing for
Zika virus infection if the infant meets the clinical criteria for testing as outlined in the CDC guidelines.
•• Healthcare providers can contact CDC (call CDC’s Emergency Operations Center watch desk at 770-488-7100; email
[email protected]; or fax 404-718-1013) to discuss information on infants suspected of having congenital Zika virus
infection. If healthcare providers contact CDC for clinical consultation, Registry staff will ensure that state, tribal, local, or
territorial health departments are promptly 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 clinicians caring for infants with congenital Zika virus exposure or infection for data collection.
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 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.
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.

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, MotherToBaby 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).
1

Puerto Rico is establishing a separate Zika Active Pregnancy Surveillance System (ZAPSS)

CDC Guidance Materials
1. Interim Guidance for Health Care Providers Caring for Women of Reproductive Age with Possible Zika Virus Exposure —
United States, 2016 (Apr. 1, 2016) http://www.cdc.gov/mmwr/volumes/65/wr/mm6512e2.htm?s_cid=mm6512e2_e
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