Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2018 Nov 15;110(19):1388-1394.
doi: 10.1002/bdr2.1391. Epub 2018 Sep 19.

Status of population-based birth defects surveillance programs before and after the Zika public health response in the United States

Marlene Anderka  1 , Cara T Mai  2 , Emily M Judson  2 , Peter H Langlois  3 , Philip J Lupo  4 , Kimberlea Hauser  5 , Jason L Salemi  6 , Jane Correia  7 , Mark A Canfield  3 , Russell S Kirby  8 ; National Birth Defects Prevention Network
Affiliations

Status of population-based birth defects surveillance programs before and after the Zika public health response in the United States

Marlene Anderka et al. Birth Defects Res. .

Abstract

Background: The 2016 Zika public health response in the United States highlighted the need for birth defect surveillance (BDS) programs to collect population-based data on birth defects potentially related to Zika as rapidly as possible through enhanced case ascertainment and reporting. The National Birth Defects Prevention Network (NBDPN) assessed BDS program activities in the United States before and after the Zika response.

Methods: The NBDPN surveyed 54 BDS programs regarding activities before and after the Zika response, lessons learned, and programmatic needs. Follow-up emails were sent and phone calls were held for programs with incomplete or no response to the online survey. Survey data were cleaned and tallied, and responses to open-ended questions were placed into best-fit categories.

Results: A 100% response rate was achieved. Of the 54 programs surveyed, 42 reported participation in the Zika public health response that included BDS activities. Programs faced challenges in expanding their surveillance effort given the response requirements but reported mitigating factors such as establishing and enhancing partnerships and program experience with surveillance and clinical activities. Beyond funding, reported program needs included training, surveillance tools/resources, and availability of clinical experts.

Conclusions: Existing BDS programs with experience implementing active case-finding and case verification were able to adapt their surveillance efforts rapidly to collect and report data necessary for the Zika response. Program sustainability for BDS remains challenging; thus, continued support, training, and resource development are important to ensure that the infrastructure built during the Zika response is available for the next public health response.

Keywords: Zika virus; birth defects; congenital anomalies; population-based surveillance; public health emergency response.

PubMed Disclaimer

Conflict of interest statement

CONFLICTS OF INTEREST

The authors have no conflicts of interest to report.

Figures

FIGURE 1
FIGURE 1
Birth Defects Surveillance Activities Implemented During Zika Public Health Response, United States (N = 42†)‡ †Number of programs that reported a Zika public health response in their state that included the BDS program. ‡Activities are not mutually exclusive. §ID-identification
FIGURE 2
FIGURE 2
Partnerships Established by Birth Defects Surveillance Programs During Zika Public Health Response, United States (N = 42†)‡ †Number of programs that reported a Zika public health response in their state that included the BDS program. ‡Categories are not mutually exclusive. §MCH/CSHCN–Maternal and Child Health/Children with Special Health Care Needs
FIGURE 3
FIGURE 3
Areas that Birth Defects Surveillance Programs Reported to be Better Prepared for the Next Public Health Response (N = 54)† †Categories not mutually exclusive. Ten programs did not respond
See this image and copyright information in PMC

References

    1. Anderka M, Mai CT, Romitti PA, Copeland G, Isenburg J, Feldkamp ML, … Kirby RS (2015). Development and implementation of the first national data quality standards for population-based birth defects surveillance programs in the United States. BMC Public Health, 19(15), 925. - PMC - PubMed
    1. Centers for Disease Control and Prevention (CDC). (2018). Stories from the field/features from the front line. Retrieved from https://www.cdc.gov/pregnancy/zika/stories/index.html
    1. Centers for Disease Control and Prevention (CDC). (2016). Funding Opportunity Announcement on “Surveillance, intervention, and referral to services activities for infants with microcephaly and other adverse outcomes linked to Zika virus.” Retrieved from https://apply07.grants.gov/apply/opportunities/instructions/oppCDC-RFA-D...
    1. Delaney A, Mai C, Smoots A, Cragan J, Ellington S, Langlois P, …Honein MA (2017). Population-based surveillance of birth defects potentially related to Zika virus infection - 15 states and U.S. territories, 2016. MMWR. Morbidity and Mortality Weekly Report, 67(3), 91–96. - PMC - PubMed
    1. Honein MA, Dawson AL, Petersen EE, Jones AM, Lee EH, Yazdy MM, … US Zika Pregnancy Registry Collaboration. (2017). Birth defects among fetuses and infants of US women with evidence of possible Zika virus infection during pregnancy. JAMA, 317(1), 59–68. - PubMed

Publication types

LinkOut - more resources