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 de

SUBMITTER: Hulihan MM 

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

REPOSITORIES: biostudies-literature