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State-based surveillance for selected hemoglobinopathies
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Jul 03 2014
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Source: Genet Med. 17(2):125-130.
[PDF-182.72 KB]
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Alternative Title:Genet Med
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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.
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Pubmed ID:24991875
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Pubmed Central ID:PMC4427044
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