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State-based surveillance for selected hemoglobinopathies.
- Source :
-
Genetics in medicine : official journal of the American College of Medical Genetics [Genet Med] 2015 Feb; Vol. 17 (2), pp. 125-30. Date of Electronic Publication: 2014 Jul 03. - Publication Year :
- 2015
-
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.<br />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.<br />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.<br />Conclusion: This approach provides a possible model for the development of state-based hemoglobinopathy surveillance systems.
Details
- Language :
- English
- ISSN :
- 1530-0366
- Volume :
- 17
- Issue :
- 2
- Database :
- MEDLINE
- Journal :
- Genetics in medicine : official journal of the American College of Medical Genetics
- Publication Type :
- Academic Journal
- Accession number :
- 24991875
- Full Text :
- https://doi.org/10.1038/gim.2014.81