State-based surveillance for selected hemoglobinopathies.

Hulihan MM1, Feuchtbaum L2, Jordan L3, Kirby RS4, Snyder A5, Young W6, Greene Y7, Telfair J8, Wang Y9, Cramer W10, Werner EM11, Kenney K1, Creary M1,Grant AM1.

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Abstract

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.Genet Med advance online publication 03 July 2014Genetics in Medicine (2014); doi:10.1038/gim.2014.81.