lunes, 21 de julio de 2014

State-based surveillance for selected hemoglobinop... [Genet Med. 2014] - PubMed - NCBI

State-based surveillance for selected hemoglobinop... [Genet Med. 2014] - PubMed - NCBI

 2014 Jul 3. doi: 10.1038/gim.2014.81. [Epub ahead of print]

State-based surveillance for selected hemoglobinopathies.


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.

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