Hemoglobin Disorders Data Coordinating Center

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.


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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

Provider Training Video Series 

practices for
“Reducing Complications of Therapeutic Blood Transfusion in Sickle Cell Disease”

Product Title Outlet Date
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) 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
SCDC and REdHHoTT work is made possible through the following funding and programmatic partnerships:

Funding partners

  • Centers for Disease Control and Prevention (Cooperative agreement awards 5U38OT000140 and NU58DD001138)
  • CDC Foundation

Programmatic partners
75 Grady GDPH CTCT Banner

Meta_Logo 75GeorgiaSouthern logo Tshirt_LOGO sickle-cell-consortium

aucd_4c           center-for-leadership-in-disability

Sickle cell disease

Thalassemia

Meet the Researchers

Angela Snyder

Director of Health Policy and Financing, Research Assistant Professor
angiesnyder@gsu.edu
Education

Ph.D., Yale University
M.P.H., Tulane University
B.S., University of Richmond

Biography

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 »

Jane Branscomb

Senior Research Associate
jane@gsu.edu
Education

M.P.H., Emory University
B.E., Vanderbilt University

Biography

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 »

Mei Zhou

Senior Research Associate
mzhou1@gsu.edu
Education

M.S., Southern Polytechnic State University
M.A., Peking University
B.A., Peking University

Biography

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 »

Ashley Singleton

Research Associate II
asingleton12@gsu.edu
Education

M.P.H., University of South Florida
B.S., University of South Carolina

Biography

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 »

Teri Wheaton

Marketing Manager
twheaton1@gsu.edu
Education

MBA, Georgia State University
M.A., American University
B.S., Radford University

Biography

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 »

Lori Solomon

Communication and Marketing Manager
lsolomon3@gsu.edu
Education

M.P.H., Emory University
B.S., Emory University

Biography

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 »

Giselle Lynch

Administrative Assistant
glynch2@gsu.edu
Education

B.A., Georgia State University

Biography

Giselle Lynch is an administrative assistant for the Georgia Health Policy Center. In this role, she manages the front desk, working closely with the student assistants. She provides support for center projects, including meeting and conference logistics and inventory management. Lynch also assists with front desk security, travel logistics, management of the department’s purchasing card… more »

Area of Expertise

Population Health