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. GHPC is spearheading data-driven efforts to characterize the complications associated with blood transfusions in people with hemoglobinopathies (blood disorders such as sickle cell disease and thalassemia). The award, from the U.S. Centers for Disease Control and Prevention (CDC) for “Characterizing the Complications Associated with Therapeutic Blood Transfusions for Hemoglobinopathies,” enables compilation and analysis of surveillance data to inform development of policy, outreach, and practice aimed at improving outcomes for patients with blood disorders.

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. GHPC and study partners are developing data methods for evaluating outcomes; disseminating provider- and patient-focused practice recommendations for reducing transfusion complications; and advising CDC on dissemination, implementation, and evaluation efforts across the country.

GHPC has led several state efforts related to surveillance and health promotion for sickle cell disease and thalassemia since 2010. The work includes planning, organizing, and convening multidisciplinary teams focused on clinical services, public health outcomes, and data coordination related to hemoglobinopathies. Areas of focus have included:

  • Creation of a population-level surveillance system using multiple datasets to measure incidence and prevalence of the disease and population-based mortality and to track health care use over time
  • Clinical preventive guidelines for those with hemoglobin disorders including immunizations, early and periodic screening with Transcranial Doppler to identify stroke risk, and the use of hydroxyurea
  • Evaluation of the strengths and limitations of using linked administrative data to perform health services research for sickle cell disease

 

Provider Training Video Series

Click here for REdHHoTT’s four-part, CME- and CNE-accredited series on evidence-based practices for
Reducing Complications of Therapeutic Blood Transfusion in Sickle Cell Disease

 

Products

  • The Importance of Blood Donation Video
  • Sickle Cell Data Collection Program Report
  • Sickle Cell Data Collection Program One-pager
  • The Accuracy of Hospital ICD-9-CM Codes for Determining Sickle Cell Disease Genotype
  • Motivation for Blood Donation Brochure
  • 5 Facts You Should Know About Sickle Cell Disease
  • Accuracy of ICD-9 Coding for Sickle Cell Disease (SCD) in Children and Adolescents
  • State-based Surveillance for Selected Hemoglobinopathies
  • Defining sickle cell disease mortality using a population-based surveillance system, 2004 through 2008
  • Determining Adherence to Quality Indicators in Sickle Cell Anemia Using Multiple Data Sources
  • Georgia PHRESH Findings: Hydroxyurea Use and Measurement
  • Sickle Cell Disease Treatment: Important Information for Patients and Health Care Providers 
  • Survey of Provider Information Needs
  • Linking Screening and Support for Sickle Cell
  • Incidence and Migration
  • Contributions to Surveillance by Dataset
  • Using Multiple Data Sets to Build a Surveillance System for Hemoglobinopathies: Early Lessons from Georgia
  • Constructing a Georgia Surveillance System for Hemoglobinopathies Using Multiple Data Sets: The First Step towards a Comprehensive Prevention and Service Delivery Strategy
  • RuSH Strategies from the Field: Data Collection
  • RuSH Strategies from the Field: Health Promotion
  • Sickle Cell Disease in Georgia: Findings from RuSH
  • Sickle Cell Disease in Georgia: Findings from RuSH Facts for 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

    Earlier hemoglobinopathy efforts were funded by the CDC and the National Heart, Lung and Blood Institute of the National Institutes of Health under the Registry and Surveillance System for Hemoglobinopathies (RuSH) project and Public Health Research, Epidemiology, and Surveillance for Hemoglobinopathies (PHRESH) project.

     

    Related Information

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    Meet the Researchers

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    Angela Snyder

    Research Assistant Professor, Director of Health Policy and Financing
    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 »

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    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 »

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    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

    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 »

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    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, and design of marketing collateral. Additionally, she… more »

    Lori Solomon

    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

    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