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. 2015 Feb;17(2):125-30.
doi: 10.1038/gim.2014.81. Epub 2014 Jul 3.

State-based surveillance for selected hemoglobinopathies

Mary M Hulihan  1 , Lisa Feuchtbaum  2 , Lanetta Jordan  3 , Russell S Kirby  4 , Angela Snyder  5 , William Young  6 , Yvonne Greene  7 , Joseph Telfair  8 , Ying Wang  9 , William Cramer  10 , Ellen M Werner  11 , Kristy Kenney  1 , Melissa Creary  1 , Althea M Grant  1
Affiliations

State-based surveillance for selected hemoglobinopathies

Mary M Hulihan et al. Genet Med. 2015 Feb.

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.

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