State-based surveillance for selected hemoglobinopathies.
Genet Med
; 17(2): 125-30, 2015 Feb.
Article
em En
| MEDLINE
| ID: mdl-24991875
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.
Texto completo:
1
Base de dados:
MEDLINE
Assunto principal:
Vigilância da População
/
Hemoglobinopatias
País/Região como assunto:
America do norte
Idioma:
En
Ano de publicação:
2015
Tipo de documento:
Article
País de afiliação:
Estados Unidos