Fact Sheet - Parents

CDC’s Response to Zika

US ZIKA PREGNANCY REGISTRY
What Parents Need to Know
What is the purpose of the registry?
CDC developed the US Zika Pregnancy Registry to:
• Learn more about the effects of Zika virus infection (Zika) during pregnancy.
• Learn more about the growth and development of babies whose mothers had Zika
  while pregnant.
CDC will collect health information about Zika among pregnant women and babies across
the United States for the Registry. CDC, health departments, doctors and healthcare providers
will use the information from this registry to help pregnant women, children, and families
affected by Zika.

Who is being included in the registry?
Pregnant women in the United States and US territories (except for Puerto Rico) with laboratory evidence of possible Zika virus infection
(regardless of whether they have symptoms) and their babies can be included in the Registry. Puerto Rico has established a separate
Zika Active Pregnancy Surveillance System (ZAPSS).

What will be done with the information collected?
The information your doctor or other healthcare provider shares will be added to the Registry with information about other pregnant
patients with Zika, and the babies born to these mothers, to help CDC and health departments develop a clearer understanding of how
Zika affects pregnant women and their babies. CDC has obtained an Assurance of Confidentiality to protect the information in this registry
that could identify you or your baby. CDC cannot share this information with anyone without your permission, even if an official of the
court, government, or law requests it.

What do I have to do to be in
the registry?
You and your child will not need to do extra paperwork, go to
extra appointments, or have extra tests to be part of the
Registry. If your child’s healthcare provider is participating in this
Registry, they will share information about your child’s health
with the health department and CDC. The health department
and CDC will work with your child’s doctor and other healthcare
providers to collect all the information needed. For this Registry,
CDC and the health department will
• Collect information about your child’s birth
• Collect information about your child’s growth and development
  up to his or her first birthday
• Collect information about the mother of your child
If your child changes doctors or healthcare providers, please
refer the new healthcare providers to CDC’s US Zika Pregnancy
Registry webpage.
As established in the HIPAA Privacy Rule (45 CFR 164.528),
you have the right to request from your child’s healthcare
provider an accounting of the disclosure of your protected
health information at any time.

CS265172-A

January 20, 2017

What if I have questions?
• For more information about the Registry, visit CDC’s Registry
  webpage (www.cdc.gov/zika/hc-providers/registry.html)
  or contact CDC-INFO by calling 800-232-4636
  (TTY 888-232-6348) or submitting an online inquiry
 (wwwn.cdc.gov/dcs/ContactUs/Form).
• If you have questions about testing for Zika virus infection,
  please contact your healthcare provider.
• If you 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, confidential service is
  available Monday - Friday from 8am - 5pm (local time).

How much does this cost?
Being in the Registry will not cost you any money.