title: A quality assessment of reporting sources for microcephaly in Utah, 2003 to 2013.
abstract: BACKGROUND
  Obtaining accurate microcephaly prevalence is important given the recent association between microcephaly and Zika virus. Assessing the quality of data sources can guide surveillance programs as they focus their data collection efforts. The Utah Birth Defect Network (UBDN) has monitored microcephaly by data sources since 2003. The objective of this study was to examine the impact of reporting sources for microcephaly surveillance.
  
  
  METHODS
  All reported cases of microcephaly among Utah mothers from 2003 to 2013 were clinically reviewed and confirmed. The UBDN database was linked to state vital records and hospital discharge data for analysis. Reporting sources were analyzed for positive predictive value and sensitivity.
  
  
  RESULTS
  Of the 477 reported cases of microcephaly, 251 (52.6%) were confirmed as true cases. The UBDN identified 94 additional cases that were reported to the surveillance system as another birth defect, but were ultimately determined to be true microcephaly cases. The prevalence for microcephaly based on the UBDN medical record abstraction and clinical review was 8.2 per 10,000 live births. Data sources varied in the number and accuracy of reporting, but a case was more likely to be a true case if identified from multiple sources than from a single source.
  
  
  CONCLUSIONS
  While some reporting sources are more likely to identify possible and true microcephaly cases, maintaining a multiple source methodology allows for more complete case ascertainment. Surveillance programs should conduct periodic assessments of data sources to ensure their systems are capturing all possible birth defects cases. Birth Defects Research (Part A) 106:983-988, 2016. © 2016 Wiley Periodicals, Inc.
authors.affiliation: Data Resources Program, Bureau of Maternal Child Health, Division of Family Health and Preparedness, Utah Department of Health, Salt Lake City, Utah.
authors.forename: Amy
authors.initials: A
authors.lastname: Steele
authors.affiliation: Utah Birth Defect Network, Bureau of Children with Special Health Care Needs, Division of Family Health and Preparedness, Utah Department of Health, Salt Lake City, Utah.
authors.forename: Jane
authors.initials: J
authors.lastname: Johnson
authors.affiliation: Utah Birth Defect Network, Bureau of Children with Special Health Care Needs, Division of Family Health and Preparedness, Utah Department of Health, Salt Lake City, Utah.
authors.forename: Amy
authors.initials: A
authors.lastname: Nance
authors.affiliation: Data Resources Program, Bureau of Maternal Child Health, Division of Family Health and Preparedness, Utah Department of Health, Salt Lake City, Utah.
authors.forename: Robert
authors.initials: R
authors.lastname: Satterfield
authors.affiliation: Division of Congenital and Developmental Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia.
authors.forename: C J
authors.initials: CJ
authors.lastname: Alverson
authors.affiliation: Division of Congenital and Developmental Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia.
authors.forename: Cara
authors.initials: C
authors.lastname: Mai
mesh_terms: D016208:Databases, Factual; D018563:Disease Notification; D062665:Epidemiological Monitoring; D005260:Female; D006801:Humans; D007231:Infant, Newborn; D008297:Male; D008831:Microcephaly / Q000453:epidemiology*; D015995:Prevalence; D012189:Retrospective Studies; D014589:Utah; D000071244:Zika Virus; D000071243:Zika Virus Infection / Q000453:epidemiology*
keywords: Utah; birth defects; hospital discharge data; microcephaly; quality assessment; reporting