Development and implementation of the first national data quality standards for population-based birth defects surveillance programs in the United States

Abstract

BackgroundPopulation-based birth defects surveillance is a core public health activity in the United States (U.S.); however, the lack of national data quality standards has limited the use of birth defects surveillance data across state programs. Development of national standards will facilitate data aggregation and utilization across birth defects surveillance programs in the U.S.MethodsBased on national standards for other U.S. public health surveillance programs, existing National Birth Defects Prevention Network (NBDPN) guidelines for conducting birth defects surveillance, and information from birth defects surveillance programs regarding their current data quality practices, we developed 11 data quality measures that focused on data completeness (n = 5 measures), timeliness (n = 2), and accuracy (n = 4). For each measure, we established tri-level performance criteria (1 = rudimentary, 2 = essential, 3 = optimal). In January 2014, we sent birth defects surveillance programs in each state, District of Columbia, Puerto Rico, Centers for Disease Control and Prevention (CDC), and the U.S. Department of Defense Birth and Infant Health Registry an invitation to complete a self-administered NBDPN Standards Data Quality Assessment Tool. The completed forms were electronically submitted to the CDC for analyses.ResultsOf 47 eligible population-based surveillance programs, 45 submitted a completed assessment tool. Two of the 45 programs did not meet minimum inclusion criteria and were excluded; thus, the final analysis included information from 43 programs. Average scores for four of the five completeness performance measures were above level 2. Conversely, the average scores for both timeliness measures and three of the four accuracy measures were below level 2. Surveillance programs using an active case-finding approach scored higher than programs using passive case-finding approaches for the completeness and accuracy measures, whereas their average scores were lower for timeliness measures.ConclusionsThis initial, nation-wide assessment of data quality across U.S. population-based birth defects surveillance programs highlights areas for improvement. Using this information to identify strengths and weaknesses, the birth defects surveillance community, working through the NBDPN, can enhance and implement a consistent set of standards that can promote uniformity and enable surveillance programs to work towards improving the potential of these programs.Electronic supplementary materialThe online version of this article (doi:10.1186/s12889-015-2223-2) contains supplementary material, which is available to authorized users.

National population‐based estimates for major birth defects, 2010–2014

“…The NBDPN continually works to improve the quality of registry data from U.S. birth defects surveillance programs and has recently implemented quality standards for these programs to self‐evaluate their activities in relation to national standards (Anderka et al, ). As more surveillance programs achieve higher levels of quality, future reports will be based on larger proportions of all births occurring nationwide and will become available in a more timely manner.…”

Preliminary Report of Microcephaly Potentially Associated with Zika Virus Infection During Pregnancy — Colombia, January–November 2016

“…In addition, because microcephaly is a rare outcome, prevalence ratios comparing 2016 and 2015 might be unstable and should be interpreted with caution. Third, passive reporting systems tend to have less complete ascertainment of all birth defects compared with active surveillance systems (9). Finally, the ascertainment of birth defects generally does not capture infants or fetuses whose birth defects are not apparent prenatally or at delivery, but rather are identified several months after birth.…”

Population‐based pregnancy and birth defects surveillance in the era of Zika virus

“…Passive systems tend to collect less complete and less accurate data. For both active and passive programs, approximately 2 years are typically required for complete ascertainment of infants with birth defects within a birth cohort (Anderka et al, ). Substantial heterogeneity exists among both passive and active surveillance systems with respect to case ascertainment and clinical review, coding, and verification of birth defects; these sources of heterogeneity contribute, in part, to variability in prevalence estimates of specific birth defects (Mai et al, ).…”