Fact Sheet - Obstetric Provider

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 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 and
2) infants with laboratory evidence of possible congenital Zika virus infection (regardless of whether they have symptoms)
and their mothers. 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

January 20, 2017

CDC’s Response to Zika
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 in pregnant women and infants who meet 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;
  or email [email protected]; or fax 404-718-1013) 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.
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.
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.

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

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