State-Based Surveillance for Selected Hemoglobinopathies

Mary M. Hulihan; Lisa Feuchtbaum; Lanetta Jordan; Russell S. Kirby; Angela Snyder; William Young; Yvonne Green; Joseph Telfair; Ying Wang; William Cramer; Ellen M. Werner; Kristy Kenney; Melissa Creary; Althea M. Grant

doi:10.1038/gim.2014.81

State-Based Surveillance for Selected Hemoglobinopathies

Mary M. Hulihan, Lisa Feuchtbaum, Lanetta Jordan, Russell S. Kirby, Angela Snyder, William Young, Yvonne Green, Joseph Telfair, Ying Wang, William Cramer, Ellen M. Werner, Kristy Kenney, Melissa Creary, Althea M. Grant

Health Policy & Community Health

Research output: Contribution to journal › Article › peer-review

34 Scopus citations

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.

Original language	American English
Journal	Genetics in Medicine
Volume	17
DOIs	https://doi.org/10.1038/gim.2014.81
State	Published - Jan 1 2015

Keywords

Hemoglobinopathies
Newborn screening
Sickle cell disease
Surveillance
Thalassemia

DC Disciplines

Community Health
Community Health and Preventive Medicine
Public Health
Public Health Education and Promotion

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1038/gim.2014.81License: Unspecified

http://dx.doi.org/10.1038/gim.2014.81

Cite this

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title = "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.",

keywords = "Hemoglobinopathies, Newborn screening, Sickle cell disease, Surveillance, Thalassemia",

author = "Hulihan, {Mary M.} and Lisa Feuchtbaum and Lanetta Jordan and Kirby, {Russell S.} and Angela Snyder and William Young and Yvonne Green and Joseph Telfair and Ying Wang and William Cramer and Werner, {Ellen M.} and Kristy Kenney and Melissa Creary and Grant, {Althea M.}",

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doi = "10.1038/gim.2014.81",

language = "American English",

volume = "17",

journal = "Genetics in Medicine",

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T1 - State-Based Surveillance for Selected Hemoglobinopathies

AU - Hulihan, Mary M.

AU - Feuchtbaum, Lisa

AU - Jordan, Lanetta

AU - Kirby, Russell S.

AU - Snyder, Angela

AU - Young, William

AU - Green, Yvonne

AU - Telfair, Joseph

AU - Wang, Ying

AU - Cramer, William

AU - Werner, Ellen M.

AU - Kenney, Kristy

AU - Creary, Melissa

AU - Grant, Althea M.

PY - 2015/1/1

Y1 - 2015/1/1

N2 - 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.

AB - 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.

KW - Hemoglobinopathies

KW - Newborn screening

KW - Sickle cell disease

KW - Surveillance

KW - Thalassemia

UR - https://digitalcommons.georgiasouthern.edu/commhealth-facpubs/103

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U2 - 10.1038/gim.2014.81

DO - 10.1038/gim.2014.81

M3 - Article

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VL - 17

JO - Genetics in Medicine

JF - Genetics in Medicine

ER -

State-Based Surveillance for Selected Hemoglobinopathies

Abstract

Keywords

DC Disciplines

UN SDGs

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