title: Developing a public health-tracking system for follow-up of newborn screening metabolic conditions: a four-state pilot project structure and initial findings.
abstract: OBJECTIVE
  The aim of this study was to describe the methods, cases, and initial results of a pilot project using existing public health data collection programs (birth defect surveillance or newborn screening) to conduct long-term follow-up of children with metabolic disorders.
  
  
  METHODS
  California, Iowa, New York, and Utah expanded birth defect surveillance or newborn screening programs to collect long-term follow-up data on 19 metabolic disorders. Data elements to monitor health status and services delivered were identified, and record abstraction and data linkages were conducted. Children were followed up through to the age of 3 years.
  
  
  RESULTS
  A total of 261 metabolic cases were diagnosed in 1,343,696 live births (19.4 cases/100,000; 95% confidence interval = 17.1-21.8). Four deaths were identified. Children with fatty acid oxidation disorders had a higher percentage of health service encounters compared with children with other disorders of at least one health service encounter (hospitalization, emergency room, metabolic clinic, genetic service provider, or social worker) except for hospitalizations; children with organic acid disorders had a higher percentage of at least one hospitalization during their third year of life than children with other disorders.
  
  
  CONCLUSIONS
  Existing public health data programs can be leveraged to conduct population-based newborn screening long-term follow-up. This approach is flexible according to state needs and resources. These data will enable the states in assessing health burden, assuring access to services, and supporting policy development.
authors: Centers for Disease Control and Prevention, Atlanta, Georgia, USA.
authors: Cynthia F
authors: CF
authors: Hinton
authors: Centers for Disease Control and Prevention, Atlanta, Georgia, USA.
authors: Cara T
authors: CT
authors: Mai
authors: Social and Scientific Systems, Silver Spring, Maryland, USA.
authors: Sarah K
authors: SK
authors: Nabukera
authors: Division of Medical Genetics, Department of Pediatrics, University of Utah, Salt Lake City, Utah, USA.
authors: Lorenzo D
authors: LD
authors: Botto
authors: Genetic Disease Screening Program, California Department of Public Health, Sacramento, California, USA.
authors: Lisa
authors: L
authors: Feuchtbaum
authors: University of Iowa, Iowa City, Iowa, USA.
authors: Paul A
authors: PA
authors: Romitti
authors: New York State Department of Health, Albany, New York, USA.
authors: Ying
authors: Y
authors: Wang
authors: Iowa Department of Public Health, Des Moines, Iowa, USA.
authors: Kimberly Noble
authors: KN
authors: Piper
authors: Centers for Disease Control and Prevention, Atlanta, Georgia, USA.
authors: Richard S
authors: RS
authors: Olney
mesh_terms: D002140:California / Q000453:epidemiology; D002675:Child, Preschool; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D007484:Iowa / Q000453:epidemiology; D008052:Lipid Metabolism, Inborn Errors / Q000175:diagnosis / Q000453:epidemiology; D008297:Male; D008659:Metabolic Diseases / Q000175:diagnosis* / Q000453:epidemiology / Q000401:mortality; D015997:Neonatal Screening / Q000379:methods*; D009518:New York / Q000453:epidemiology; D010865:Pilot Projects; D011634:Public Health; D014589:Utah / Q000453:epidemiology