The Georgia Health Policy Center (GHPC) is a data-coordinating center for multi-institutional projects focused on surveillance of and health promotion for individuals with blood disorders. Two statewide efforts are currently ongoing.
Sickle Cell Data Collection Program
The goal of the Georgia Sickle Cell Data Collection (SCDC) Program is to improve the quality of life, life expectancy, and health of individuals with sickle cell disease by developing and disseminating scientific evidence to inform policies and practices.
GHPC and its partners are using and expanding data methods and sources to better understand sickle cell disease at the population level in Georgia. Sickle cell disease surveillance is possible through the creation and maintenance of a unique, longitudinal dataset of individual-level information for every health care system encounter for more than 7,000 sickle cell disease patients from 2004 through 2016.
Data sources include:
- State newborn screening program
- Death records
- Clinical data from the three comprehensive sickle cell centers in the state (Augusta University, Grady Health System, and Children’s Healthcare of Atlanta)
- Administrative claims data from Georgia’s Medicaid, Children’s Health Insurance Program, and the State Health Benefit Plan
- Hospital and emergency department discharge data
To date, these data have been used to determine incidence, prevalence, and distribution of the disease across Georgia; population-based morbidity and mortality trends; use of health care services, and adherence to recommended clinical practices and guidelines including immunizations, Transcranial Doppler screening, and the use of hydroxyurea.
This longitudinal data-collection effort began in the state under previous cooperative agreements, including with the U.S. Centers for Disease Control and Prevention (CDC) and the National Heart, Lung, and Blood Institute’s Registry and Surveillance System for Hemoglobinopathies (RuSH) pilot project and the CDC’s Public Health Research, Epidemiology, and Surveillance in Hemoglobinopathies (PHRESH) initiative.
Registry and Education for Hemovigilance in Hemoglobinopathy Transfusion Therapy in Georgia
A related effort is the REdHHoTT project —Registry and Education for Hemovigilance in Hemoglobinopathy Transfusion Therapy in Georgia.
GHPC is spearheading efforts to characterize and reduce complications associated with therapeutic blood transfusions in people with sickle cell disease and thalassemia. The project uses surveillance data, targeted surveys, and systematic literature reviews to inform policy, education, and outreach aimed at improving transfusion outcomes in patients with blood disorders. Current efforts include:
- Developing a methodology for using existing datasets to identify and validate transfusions and transfusion-related outcomes
- Creating a registry to share patient-specific transfusion histories among blood banks within the state
- Establishing a repository for samples from transfused patients with sickle cell disease and thalassemia, as well as donor blood samples
- Improving clinical practice and reducing transfusion-associated complications through patient and provider education
- Increasing minority blood donation to expand the availability of matched blood for transfusion to sickle cell disease patients
Georgia SCDC’s goal is to give stakeholders sound evidence to inform policies and practices that improve the health of individuals with sickle cell disease.
Let us know how SCDC products have been useful or if you have specific data needs: firstname.lastname@example.org.
Please see the Products tab for more SCDC information.
Hover your pointer over an area or marker on the maps below for data and other details. Click on a symbol in the legend to show only that category on the map. Use the tools in the Tableau toolbar below each map to share or download the image or underlying data. NOTE: On “Full Data” worksheet tabs, the column “Number of Births” shows the numeral “3” for all counties with 1-10 births. This is to protect privacy and does not represent the actual number of babies (between 1 and 10) born in that county during the years shown.
This work was supported by a federal grant #6NU38OT000288, funded by the Centers for Disease Control and Prevention (CDC). SCDC Georgia is supported by the CDC Foundation and CDC’s Division of Blood Disorders, with additional funding support from the Doris Duke Charitable Foundation, Global Blood Therapeutics, Pfizer Inc., and Sanofi. The contents are solely the responsibility of the authors and do not necessarily represent the official views of the CDC, the Department of Health and Human Services, or any other funders.
Sickle cell disease
- California Sickle Cell Disease Resources CA http://casicklecell.org/
- CDC https://www.cdc.gov/ncbddd/sicklecell/index.html
- CDC Transfusion Safety https://www.cdc.gov/ncbddd/hemoglobinopathies/blood-transfusions.html
- Sickle Cell Disease Association of America https://www.sicklecelldisease.org/