Dataset Information

State-based surveillance for selected hemoglobinopathies.

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.

SUBMITTER: Hulihan MM

PROVIDER: S-EPMC4427044 | biostudies-literature | 2015 Feb

REPOSITORIES: biostudies-literature

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Publications

State-based surveillance for selected hemoglobinopathies.

Hulihan Mary M MM Feuchtbaum Lisa L Jordan Lanetta L Kirby Russell S RS Snyder Angela A Young William W Greene Yvonne Y Telfair Joseph J Wang Ying Y Cramer William W Werner Ellen M EM Kenney Kristy K Creary Melissa M Grant Althea M AM

Genetics in medicine : official journal of the American College of Medical Genetics 20140703 2

<h4>Purpose</h4>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 surveillan ...[more]

PMID: 24991875

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Dataset Information

State-based surveillance for selected hemoglobinopathies.

Purpose

Methods

Results

Conclusion

Publications

State-based surveillance for selected hemoglobinopathies.

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