Pediatric Healthcare Provider FactSheet

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.
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 and are
either: 1) born to a woman with any laboratory evidence of Zika virus infection, or 2) have any laboratory evidence
of congenital Zika virus infection (e.g., detection of Zika virus or Zika virus nucleic acids in a placental, fetal, or
neonatal specimen, or serologic evidence of Zika virus in serum or cerebrospinal fluid).
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
1

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

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June 21, 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 if the infant meets 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 770-4887100; email [email protected]; or fax 404-718-2200) 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.

Data Collection Process

Time points for data collection
2 months of age
6 months of age
12 months of age

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.

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, text, or chat: www.MotherToBaby.org. The free and
confidential service is available Monday - Friday from 8am - 5pm (local time).

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

www.cdc.gov/zika