Hemoglobin Disorders Data Coordinating Center
Hemoglobin Disorders Data Coordinating Center
The Georgia Health Policy Center (GHPC) is a data-coordinating center for multi-institutional projects focused on sickle cell disease and thalassemia surveillance. Our goal is to give stakeholders evidence to shape policy and practice improvements for the well-being of individuals with these blood disorders. Check out our projects, products, and partners below. Let us know how these have been useful or if you have specific data needs: email [email protected].
Georgia 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 approximately 14,000 sickle cell disease patients from 2004 through 2019.
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.
Sickle Cell Data Collection Capacity Building
CDC-RFA-DD19-1906 funded the Sickle Cell Data Collection Capacity Building project. CDC, with Georgia and California awardees, shared tools and technical assistance to help seven additional states prepare to build SCD surveillance systems. Click below to view slide presentations in each of the three phases of the SCDC Guiding Framework.
Phase 1: Develop Multi-Stakeholder Collaborations
- History of Sickle Cell Data Collection
- Establish a State Surveillance Program
- Stakeholder Engagement
- State Agency Engagement
Phase 2: Build Data Infrastructure
- Data Nuts and Bolts
- Data Transfer and Storage
- SCDC Case Definition
- The Evolution of Surveillance Data
- What’s Really in the Data?
- Where are the Data Holes?
Phase 3: Share Data findings
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
|Sickle Cell Data Collection Brochure||Georgia Health Policy Center||September 2019|
|Who can give blood?||Georgia Health Policy Center||September 2019|
|A Guide to Blood Donation||Georgia Health Policy Center||September 2019|
|Blood Donation Infographic||Georgia Health Policy Center||October 2018|
|Sickle Cell Disease Warriors and Friends: Be the Motivation for Blood Donation||Georgia Health Policy Center||October 2018|
|The Importance of Blood Donation (video)||Georgia Health Policy Center||January 2018|
|Run/Walk Quiz Signs||Georgia Health Policy Center||April 2017|
|Motivation for Blood Donation Brochure||Georgia Health Policy Center||April 2017|
|Sickle Cell Disease Treatment: Important Information for Patients and Health Care Providers (booklet)||Georgia Health Policy Center||September 2014|
|Too many children live too far from sickle cell treatment they need||AJC||November 2019|
|Leveraging Data To Improve the Lives Of Georgians With Sickle Cell Disease and Thalassemia||SaportaReport||March 2018|
|Save A Life!||The Signal||February 2018|
|September is National Sickle Cell Awareness Month||Georgia Health Policy Center||September 2017|
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. Please visit the interactive maps page for further information.
Email us at [email protected] if you have specific data needs or to let us know how SCCDC products have been helpful to you.
Reducing Complications of Blood Transfusion in Sickle Cell Disease – a four-part video series for health care providers, created in collaboration with the Centers for Disease Control and Prevention and the Georgia Health Policy Center. It is designed to provide information about and strategies for reducing transfusion complications in people with sickle cell disease.
Introduction – With James Eckman, M.D.
Case 1: Use of Transfusion during Acute Illness – With Peter Lane, M.D.
Case 2: Delayed Hemolytic Transfusion Reactions – With Ross Fasano, M.D.
|Case 3: Management of Chronic Transfusion – With James Eckman, M.D.
Sickle Cell Data Collection Webinars
- Older Adults and Sickle Cell Disease
- Reducing Transfusion Complications and Other Surveillance-supported Efforts in Hemoglobin Disorders
Blood Transfusions: What You Need to Know and Do – a learning series developed in collaboration with the Georgia Health Policy Center and the Sickle Cell Community Consortium to educate individuals about the importance of blood transfusion for people living with sickle cell disease, how to avoid blood transfusion complications, and the critical need for increasing minority blood donations. The sessions are designed for those with a basic understanding of sickle cell disease. Click on the titles below to learn more about each session.
For General Public
The goal of Georgia SCDC is to inform policy and practice improvements that extend the quality of life, life expectancy, and health of individuals with SCD. Data are valuable only as far as they are put to use to increase knowledge and drive improved outcomes.
- SCDC=Sickle Cell Data + You
- From Data to Action: A Community-Based Participatory Effort to Foster Use of Sickle Cell Surveillance Data For Positive Change – This presentation at the 2021 SCDAA National Convention outlines community partnership in Georgia to move data to action for the sickle cell population.
- 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/
- Sickle Cell Community Consortium https://sicklecellconsortium.org
- CDC https://www.cdc.gov/ncbddd/thalassemia/index.html
- Cooley’s Anemia Foundation http://www.thalassemia.org/
Many people who have sickle cell disease or thalassemia get blood transfusions to stay healthy. But there are risks that come with having many transfusions in a lifetime. These risks are much lower when the blood they get is a close match to their own. We need donors from all racial and ethnic groups because there are diverse patients! REdHHoTT created MySleevesUp.com to help diversify the blood supply.
My Sleeves Up http://mysleevesup.com
- Centers for Disease Control and Prevention (Cooperative agreement awards 5U38OT000140 and NU58DD001138)
- CDC Foundation