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
|Educational materials (brochure)||Sickle Cell Data Collection Brochure||Georgia Health Policy Center||September 2019|
|Educational materials||Who can give blood?||Georgia Health Policy Center||September 2019|
|Educational materials||A Guide to Blood Donation||Georgia Health Policy Center||September 2019|
|Educational materials||Blood Donation Infographic||Georgia Health Policy Center||October 2018|
|Educational materials||Sickle Cell Disease Warriors and Friends: Be the Motivation for Blood Donation||Georgia Health Policy Center||October 2018|
|Educational materials (informational video)||The Importance of Blood Donation||Georgia Health Policy Center||February 2018|
|Educational materials (provider training video series)||CME/CNE Course: Reducing Complications of Therapeutic Blood Transfusion in Sickle Cell Disease||Georgia Health Policy Center, Emory University, Centers for Disease Control and Prevention||October 2017|
|Educational materials (webinar)||Reducing transfusion complications and other surveillance-supported efforts in hemoglobin disorders||Georgia Health Policy Center, California Sickle Cell Resources||September 2017|
|Educational materials||Run/Walk Quiz Signs||Georgia Health Policy Center||April 2017|
|Educational materials (brochure)||Motivation for Blood Donation||Georgia Health Policy Center||April 2017|
|Educational materials (webinar)||Older Adults and Sickle Cell Disease, presented by Dr. James Eckman||Georgia Health Policy Center, Emory University, California Sickle Cell Resources||January 2016|
|Educational materials (booklet)||Sickle Cell Disease Treatment: Important Information for Patients and Health Care Providers||Georgia Health Policy Center||September 2014|
|Briefs & Reports|
|Brief/report||REdHHoTT Program Brief: Steps to Improve Transfusion Practices for Patients With Sickle Cell Disease and Thalassemia||Georgia Health Policy Center||October 2019|
|Brief/report||Sickle Cell Data Collection Program Brief: Access to Care for Children||Georgia Health Policy Center||September 2019|
|Brief/report||Multisite Transfusions for Sickle Cell Disease: Georgia, 2007-2016||Georgia Health Policy Center||July 2019|
|Brief/report||Sickle Cell Data Collection Brief: Births in Georgia, 2004-2016||Georgia Health Policy Center||July 2019|
|Brief/report||Using Mobile Apps to Reduce Transfusion Complications||Georgia Health Policy Center||September 2018|
|Brief/report||Sickle Cell Data Collection Program Brief: Better Access to Outpatient Care May Decrease Emergency Visits and Costs||Georgia Health Policy Center||May 2018|
|Brief/report||Sickle Cell Data Collection Program Report: Three-year Dissemination and Analysis Plan for Georgia||Georgia Health Policy Center||June 2017|
|Brief/report||Sickle Cell Data Collection Program Brief: Three-year Dissemination and Analysis Plan for Georgia||Georgia Health Policy Center||June 2017|
|Brief/report||Georgia PHRESH Findings: Hydroxyurea Use and Measurement||Georgia Health Policy Center||November 2014|
|Brief/report||Survey of Provider Information Needs||Georgia Health Policy Center||June 2014|
|Brief/report||Incidence and Migration||Georgia Health Policy Center||May 2014|
|Brief/report||Contributions to Surveillance by Dataset||Georgia Health Policy Center||December 2013|
|Brief/report||Sickle Cell Disease in Georgia: Findings from RuSH||Georgia Health Policy Center||January 2013|
|Brief/report||Sickle Cell Disease in Georgia: Findings from RuSH Facts for Providers||Georgia Health Policy Center||January 2013|
|Brief/report||RuSH Strategies from the Field: Data Collection||CDC||January 2012|
|Brief/report||RuSH Strategies from the Field: Health Promotion||CDC||January 2012|
|Brief/report||Community outreach posters for Georgia regions:||Georgia Health Policy Center||January 2012|
|Peer-reviewed findings (journal article)||Facilitators and Barriers to Minority Blood Donations: A Systematic Review||Nursing Research
|Peer-reviewed findings (journal article)||Transfusion Service Knowledge and Immunohaematological Practices Related to Sickle Cell Disease and Thalassemia||Georgia Health Policy Center||February 2019|
|Peer-reviewed findings (journal article)||Impact of Red Blood Cell Antigen Matching on Alloimmunization and Transfusion Complications in Patients with Sickle Cell Disease: A Systematic Review||Transfusion Medical Reviews
|Peer-reviewed findings (journal article)||Characterizing Complication Risk from Multisite, Intermittent Transfusions for the Treatment of Sickle Cell Disease||Georgia Health Policy Center||June 2019|
|Peer-reviewed findings (journal article)||A Strategic Planning Tool for Increasing African American Blood Donation||Health Promotion Practice||May 2018|
|Peer-reviewed findings (journal article)||The Accuracy of Hospital ICD-9-CM Codes for Determining Sickle Cell Disease Genotype||Journal of Rare Diseases Research & Treatment||July 2017|
|Peer-reviewed findings (journal article)||Defining Sickle Cell Disease Mortality Using a Population-Based Surveillance System, 2004 Through 2008||Public Health Reports||March 2016|
|Peer-reviewed findings (journal article)||State-based Surveillance for Selected Hemoglobinopathies||Genetics in Medicine||Feb. 2014|
|Peer-reviewed findings (poster)||Constructing a Georgia Surveillance System for Hemoglobinopathies Using Multiple Data Sets: The First Step towards a Comprehensive Prevention and Service Delivery Strategy||AcademyHealth Annual Research Meeting||June 2012|
|Peer-reviewed findings (poster)||Using Multiple Data Sets to Build a Surveillance System for Hemoglobinopathies: Early Lessons from Georgia||National Conference on Blood Disorders in Public Health||March 2012|
|Media||Leveraging Data To Improve the Lives Of Georgians With Sickle Cell Disease and Thalassemia||SaportaReport||March 2018|
|Media||The Signal||February 2018|
|Media||Georgia Health Policy Center||September 2017|
MAPS: The Geography of Sickle Cell Disease in Georgia
A product of the Georgia Sickle Cell Data Collection Program
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: email@example.com.
* Addresses are missing for 13 of these patients, so they are not represented on the map.
Access to Care for Children – coming soon
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/