title: State-based surveillance for selected hemoglobinopathies.
abstract: OBJECTIVE
  The lack of an ongoing surveillance system for hemoglobinopathies in the United States impedes the ability of public health organizations to identify individuals with these conditions, monitor their health-care utilization and clinical outcomes, and understand the effect these conditions have on the health-care system. This article describes the results of a pilot program that supported the development of the infrastructure and data collection methods for a state-based surveillance system for selected hemoglobinopathies.
  
  
  METHODS
  The system was designed to identify and gather information on all people living with a hemoglobinopathy diagnosis (sickle cell diseases or thalassemias) in the participating states during 2004-2008. Novel, three-level case definitions were developed, and multiple data sets were used to collect information.
  
  
  RESULTS
  In total, 31,144 individuals who had a hemoglobinopathy diagnosis during the study period were identified in California; 39,633 in Florida; 20,815 in Georgia; 12,680 in Michigan; 34,853 in New York, and 8,696 in North Carolina.
  
  
  CONCLUSIONS
  This approach provides a possible model for the development of state-based hemoglobinopathy surveillance systems.
authors.affiliation: Division of Blood Disorders, Centers for Disease Control and Prevention, Atlanta, Georgia, USA.
authors.forename: Mary M
authors.initials: MM
authors.lastname: Hulihan
authors.affiliation: Genetic Disease Screening Program, California Department of Public Health, Richmond, California, USA.
authors.forename: Lisa
authors.initials: L
authors.lastname: Feuchtbaum
authors.affiliation: Miller School of Medicine, University of Miami, Miami, Florida, USA.
authors.forename: Lanetta
authors.initials: L
authors.lastname: Jordan
authors.affiliation: College of Public Health, University of South Florida, Tampa, Florida, USA.
authors.forename: Russell S
authors.initials: RS
authors.lastname: Kirby
authors.affiliation: Georgia Health Policy Center, Andrew Young School of Policy Studies, Georgia State University, Atlanta, Georgia, USA.
authors.forename: Angela
authors.initials: A
authors.lastname: Snyder
authors.affiliation: Michigan Department of Community Health, Lansing, Michigan, USA.
authors.forename: William
authors.initials: W
authors.lastname: Young
authors.affiliation: North Carolina Department of Health and Human Services, Raleigh, North Carolina, USA.
authors.forename: Yvonne
authors.initials: Y
authors.lastname: Greene
authors.affiliation: Jiann-Ping Hsu College of Public Health, Georgia Southern University, Statesboro, Georgia, USA.
authors.forename: Joseph
authors.initials: J
authors.lastname: Telfair
authors.affiliation: New York State Department of Health, Albany, New York, USA.
authors.forename: Ying
authors.initials: Y
authors.lastname: Wang
authors.affiliation: Pennsylvania Department of Health, Harrisburg, Pennsylvania, USA.
authors.forename: William
authors.initials: W
authors.lastname: Cramer
authors.affiliation: National Heart Lung and Blood Institute, National Institutes of Health, Bethesda, Maryland, USA.
authors.forename: Ellen M
authors.initials: EM
authors.lastname: Werner
authors.affiliation: Division of Blood Disorders, Centers for Disease Control and Prevention, Atlanta, Georgia, USA.
authors.forename: Kristy
authors.initials: K
authors.lastname: Kenney
authors.affiliation: Division of Blood Disorders, Centers for Disease Control and Prevention, Atlanta, Georgia, USA.
authors.forename: Melissa
authors.initials: M
authors.lastname: Creary
authors.affiliation: Division of Blood Disorders, Centers for Disease Control and Prevention, Atlanta, Georgia, USA.
authors.forename: Althea M
authors.initials: AM
authors.lastname: Grant
mesh_terms: D000755:Anemia, Sickle Cell / Q000453:epidemiology / Q000235:genetics; D005260:Female; D006453:Hemoglobinopathies / Q000453:epidemiology* / Q000235:genetics; D006801:Humans; D008297:Male; D011159:Population Surveillance; D015995:Prevalence; D012042:Registries; D013789:Thalassemia / Q000453:epidemiology / Q000235:genetics; D014481:United States / Q000453:epidemiology