title: The context and approach for the California newborn screening short- and long-term follow-up data system: preliminary findings.
abstract: OBJECTIVE
  State newborn screening programs are designed to prevent morbidity and mortality from hereditary disorders through early detection and ongoing disease management. These programs have traditionally focused on short-term follow-up. However, capturing data on the long-term follow-up process is emerging as a new priority. Long-term follow-up data can be used to assess the accessibility, continuity, and quality of care provided to these children. The California Newborn Screening Program uses a Web-based data collection system for short- and long-term follow-up. This article provides a description of the follow-up data collection system in addition to preliminary findings to demonstrate the efficacy of the California data collection approach.
  
  
  METHODS
  A preliminary analysis of short-term follow-up data collected from July 7, 2005, through April 30, 2009, and a preliminary analysis of long-term follow-up data collected from July 1, 2007, through April 30, 2009.
  
  
  RESULTS
  A majority of children are able to access ongoing care through age 5 years. The majority also have positive health outcomes at each year of follow-up.
  
  
  CONCLUSIONS
  California's short- and long-term data collection system can serve as a model for other states interested in implementing a comprehensive Newborn Screening Program follow-up data system.
authors.affiliation: Genetic Disease Screening Program, California Department of Public Health, Richmond, California 94804, USA. Lisa.Feuchtbaum@cdph.ca.gov
authors.forename: Lisa
authors.initials: L
authors.lastname: Feuchtbaum
authors.forename: Sunaina
authors.initials: S
authors.lastname: Dowray
authors.forename: Fred
authors.initials: F
authors.lastname: Lorey
mesh_terms: D002140:California; D002648:Child; D003266:Continuity of Patient Care; D003695:Delivery of Health Care; D042241:Early Diagnosis; D005500:Follow-Up Studies; D030342:Genetic Diseases, Inborn / Q000175:diagnosis* / Q000628:therapy*; D006284:Health Plan Implementation; D006801:Humans; D007231:Infant, Newborn; D020407:Internet; D009026:Mortality; D015997:Neonatal Screening; D017063:Outcome Assessment, Health Care; D011159:Population Surveillance; D016730:Program Development; D015397:Program Evaluation; D011635:Public Health Administration; D040442:Public Health Informatics / Q000458:organization & administration*; D012042:Registries; D013221:State Health Plans / Q000458:organization & administration*; D013997:Time Factors