Sickle Cell Disease and Thalassemia in Georgia
The Georgia Health Policy Center (GHPC) has led several state efforts related to surveillance and health promotion for sickle cell disease and thalassemia since 2010. The goal of this work is to gain better outcomes for people in the state with hemoglobin disorders by using data from multiple sources to inform policy, outreach, and practice. Our partners in this work include the Georgia Department of Public Health, Sickle Cell Disease Foundation of Georgia, Inc., and the comprehensive sickle cell centers at Children’s Healthcare of Atlanta, Grady Hospital, and Georgia Regents University.
The GHPC has received a five-year, $2.7 Million award from the U.S. Centers for Disease Control and Prevention (CDC) that will allow the GHPC and partnering organizations to look at transfusion-related complications in patients with hemoglobin disorders (sickle cell disease and thalassemia) and improve their outcomes. Currently the GHPC serves as a coordinating center for projects to characterize the complications associated with therapeutic blood transfusions in persons with hemoglobinopathies. Past projects have included Georgia’s Public Health Research, Epidemiology, and Surveillance for Hemoglobinopathies (PHRESH) project, funded by the Centers for Disease Control and Prevention (CDC). PHRESH was a follow-up to the Registry and Surveillance System for Hemoglobinopathies (RuSH) project, for which Georgia was one of seven states selected to conduct population-based surveillance of sickle cell disease and thalassemia. CDC and the National Heart, Lung and Blood Institute of the National Institutes of Health funded RuSH. Read more about RuSH.
- Defining Sickle Cell Disease Mortality Using a Population-Based Surveillance System, 2004 through 2008: This report shows how population-based surveillance data from California and Georgia for years 2004 through 2008 were linked to state death record files to determine the all-cause death rate among 12,143 patients identified with sickle cell disease (SCD).
- Georgia PHRESH Findings: Hydroxyurea Use and Measurement: This brief describes our findings of how well the advances in treatment and prevention of complications are reaching individuals in Georgia.
- Sickle Cell Disease Treatment: Important Information for Patients and Health Care Providers: This booklet is designed to help sickle cell disease patients and families, together with their health care providers, make informed decisions about their care.
- Survey of Provider Information Needs: This brief describes the findings of our survey of primary care providers in Georgia regarding their access to appropriate information for sickle cell patients and themselves on hydroxyurea, immunizations, and transcranial Doppler screening.
- Incidence and Migration: This brief describes our findings on the number of individuals with sickle cell disease who are born in Georgia and the number who move to Georgia from other states or countries.
- Contributions to Surveillance by Dataset: This brief describes how multiple existing datasets were used to identify cases and categorize them according to the case definition
- Using Multiple Data Sets to Build a Surveillance System for Hemoglobinopathies: Early Lessons from Georgia: Poster presented at the 2nd National Conference on Blood Disorders in Public Health, Atlanta, GA, March 12-14, 2012
- Constructing a Georgia Surveillance System for Hemoglobinopathies Using Multiple Data Sets: The First Step towards a Comprehensive Prevention and Service Delivery Strategy: Poster presented at the 2012 AcademyHealth Annual Research Meeting, Orlando, FL, June 24-26, 2012
- RuSH Strategies from the Field: Data Collection: Case examples from the seven RuSH states regarding data collection
- RuSH Strategies from the Field: Health Promotion: Case examples from the seven RuSH states regarding health promotion
- Sickle Cell Disease in Georgia: Findings from RuSH: Overview of findings from the RuSH project for patients, families, and the public
- Sickle Cell Disease in Georgia: Findings from RuSH Facts for Providers: Overview of findings from the RuSH project for health care providers
- Community outreach posters with sickle cell disease data specific to regions of Georgia:
– Sickle Cell Disease in Chatham County
– Sickle Cell Disease in Dougherty County
– Sickle Cell Disease in Metro Atlanta (Clayton, Cobb, DeKalb, Fulton, Gwinnett)
– Sickle Cell Disease in Muscogee County
– Sickle Cell Disease in Richmond County
- Hulihan, M., Feuchtbaum, L., Jordan, L., Kirby, R., Snyder, A., Young, W., Greene, Y., Telfair, J., Wang, Y., Cramer, W., Werner, E., Kenney, K., Creary, M., Grant, A. (2014) “State-based surveillance for selected hemoglobinopathies.” Genetics in Medicine,doi:10.1038/gim.2014.81
- Beasley, JoAnn, and Kristen Oliver. “Linking Screening and Support for Sickle Cell.” In Georgia Department of Public Health Blog. Atlanta, Georgia, 2013.
Partners and Resources:
- Information and support for patients, families, and providers
Sickle Cell Foundation of Georgia, Inc.: 404-755-1641; toll-free 800-326-5287
Sickle Cell Information Center
CDC Information on Sickle Cell Disease
CDC Information on Thalassemia
Health Problems Associated with Blood Transfusions
- Comprehensive sickle cell centers in Georgia
Children’s Healthcare of Atlanta (children/youth): 404-785-1200
Georgia Regents University (children/youth and adults): 706-721-2171
Grady Health System (adults): 404-616-3572
- Georgia’s Newborn Screening Program
Georgia Department of Public Health: 404-657-4143
- Georgia’s RuSH and PHRESH Projects
Angela Snyder, Principal Investigator: 404-413-0285; email@example.com
*This project is supported by Cooperative Agreement 5U50DD001010 from the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of CDC.