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pdfCDC’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?
Women in the United States who may have been infected with Zika during pregnancy (but did not necessarily show
symptoms of Zika) 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 identity of people in the Registry will be kept private and secure. The information your child’s doctor or other
healthcare provider shares will be added to the Registry of information about pregnant patients with Zika, and the babies
born to these women. The information in the Registry will help CDC and health departments develop a clearer picture of
how Zika affects pregnant women and their babies.
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 (shown below).
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.
How much does this cost?
Being in the Registry will not cost you any money.
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, text, or chat (www.MotherToBaby.org).
The free, confidential service is available Monday - Friday from 8am - 5pm (local time).
CS265172-A
June 22, 2016
| File Type | application/pdf |
| File Title | US Zika Pregnancy Registry - What Parents Need to Know |
| Author | Department of Health and Human Services |
| File Modified | 2016-06-22 |
| File Created | 2016-06-22 |