State-based surveillance for selected hemoglobinopathies

Details

• Alternative Title:
  Genet Med
• Personal Author:
  Hulihan, Mary M. ; Feuchtbaum, Lisa ; Jordan, Lanetta ; Kirby, Russell S. ; Snyder, Angela ; Young, William ; Greene, Yvonne ; Telfair, Joseph ; Wang, Ying ; Cramer, William ; Werner, Ellen M. ; Kenney, Kristy ; Creary, Melissa ; Grant, Althea M.
• Description:
  Purpose
  
  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.
  
  Conclusion
  
  This approach provides a possible model for the development of state-based hemoglobinopathy surveillance systems.
  
  
• Subjects:
  Anemia, Sickle Cell Article Female Hemoglobinopathies Humans Male Population Surveillance Prevalence Registries Thalassemia
• Source:
  Genet Med. 17(2):125-130.
• Pubmed ID:
  24991875
• Pubmed Central ID:
  PMC4427044
• Document Type:
  Journal Article
• Funding:
  CC999999/Intramural CDC HHS/United States ; DD09-909/DD/NCBDD CDC HHS/United States ; DD10-1017/DD/NCBDD CDC HHS/United States
• Place as Subject:
  United States
• Volume:
  17
• Issue:
  2
• Collection(s):
  CDC Public Access
• Main Document Checksum:
  urn:sha256:5cbcd1f0e64a555269c7dab21c68ae73eb54eed215e74318e78a292c65c75b72
• Download URL:
  https://stacks.cdc.gov/view/cdc/31009/cdc_31009_DS1.pdf
• File Type:
  [PDF - 182.72 KB ]