About this Project
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
“Reducing Complications of Therapeutic Blood Transfusion in Sickle Cell Disease”
|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||Using Mobile Apps to Reduce Transfusion Complications||Georgia Health Policy Center||September 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 (brochure)||Motivation for Blood Donation||Georgia Health Policy Center||April 2017|
|Educational materials (booklet)||Sickle Cell Disease Treatment: Important Information for Patients and Health Care Providers||Georgia Health Policy Center||Sept. 2014|
|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||Nov. 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||Dec.2013|
|Brief/report||Sickle Cell Disease in Georgia: Findings from RuSH||Georgia Health Policy Center||Jan.2013|
|Brief/report||Sickle Cell Disease in Georgia: Findings from RuSH Facts for Providers||Georgia Health Policy Center||Jan. 2013|
|Brief/report||RuSH Strategies from the Field: Data Collection||CDC||Jan. 2012|
|Brief/report||RuSH Strategies from the Field: Health Promotion||CDC||Jan. 2012|
|Brief/report||Community outreach posters for Georgia regions:||Georgia Health Policy Center||Jan. 2012|
|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)||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|
- Centers for Disease Control and Prevention (Cooperative agreement awards 5U38OT000140 and NU58DD001138)
- CDC Foundation
- 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/
Meet the Researchers
Ph.D., Yale University
M.P.H., Tulane University
B.S., University of Richmond
Angie Snyder is the director of health policy and financing at the Georgia Health Policy Center, and her work focuses on applied research of policy and program evaluation for state- and community-level health projects. Her research uses both qualitative and quantitative data (including administrative databases) to study the health outcomes that result from the organization… more »
M.P.H., Emory University
B.E., Vanderbilt University
Jane Branscomb is a senior research associate at the Georgia Health Policy Center. She is actively involved in policy analysis and evaluation in projects related to health promotion, public health planning, and health system transformation. She has a particular interest in high-leverage opportunities to advance health equity and remove barriers to health.
Branscomb leads the… more »
M.S., Southern Polytechnic State University
M.A., Peking University
B.A., Peking University
Mei Zhou is a senior research associate at the Georgia Health Policy Center. She has expertise in working with large data sets, especially Medicaid claims data analysis.
Zhou’s current projects include evaluation of Georgia’s Children’s Health Insurance Program, research and surveillance for hemoglobinopathies with the Georgia Department of Public Health, research and education… more »
M.P.H., University of South Florida
B.S., University of South Carolina
Ashley Singleton is a research associate II at the Georgia Health Policy Center. Her areas of expertise include adolescent sexual and reproductive health, strategic planning, and program evaluation.
Singleton’s current projects include work with the Center of Excellence for Children’s Behavioral Health to provide fidelity monitoring and workforce development for High Fidelity Wraparound… more »
MBA, Georgia State University
M.A., American University
B.S., Radford University
Teri Wheaton is the marketing manager for the Georgia Health Policy Center. Her professional background is in marketing and communications, graphic design, web design, and film production.
Wheaton provides external and internal marketing support for the center overall, including website maintenance, social media management, event and conference support, video production, and design of marketing collateral.… more »
M.P.H., Emory University
B.S., Emory University
Lori Solomon is the communications and marketing manager at the Georgia Health Policy Center. She brings with her experience across the spectrum of health writing and communications.
She assists with a wide range of the center’s needs including internal communications, communications with external partners, and assisting with project deliverables. Specifically she helps with writing and… more »
M.P.H., Georgia State University
B.S., Georgia State University
Sashoy Patterson is a research coordinator at the Georgia Health Policy Center. Her research interests include genetic disorders and maternal and child health. Patterson works with the Health Policy and Finance team and contributes to multiple research and policy development projects. Her current work is focused on the Registry and Education for Hemovigilance in Hemoglobinopathy… more »