CDC’s Work on Thalassemia
People with inherited blood disorders such as thalassemia often require frequent blood transfusions to remain healthy. Red blood cell transfusions are an important part of medical care for many people with thalassemia. Although some people with thalassemia never need a transfusion, others may have infrequent needs, and still others may need transfusions every few weeks. Determining which people with thalassemia need to receive transfusions, when and how often they need to receive them, and what steps need to be taken to minimize transfusion complications may lead to improvements in health.
Monitoring the Health of People Receiving Blood Transfusions
In 2004, CDC started the Thalassemia Data and Blood Specimen Collection System, a monitoring system with the purpose of finding infections that might be spread through blood transfusion. It focused on patients receiving care at seven CDC-funded Thalassemia Treatment Centers (TTCs). Patients were tested each year for the presence of hepatitis, HIV, and West Nile virus.
In 2012, CDC expanded monitoring through a project called Blood Safety Surveillance for People with Blood Disorders. In addition to people with thalassemia, this project included people with sickle cell disease (SCD), Diamond Blackfan anemia, and other nonmalignant (noncancerous) blood disorders who require transfusion for treatment. This project helped to monitor those who received repeated transfusions of red blood cells, and through this monitoring, increased the likelihood that a new or emerging threat to the safety of blood could be found quickly. The project also focused on other harmful effects of repeated blood transfusion, such as alloimmunization and iron overload.
In 2014, CDC began a 5-year project to learn more about the health complications that can occur when people with thalassemia and SCD receive blood transfusions. The project aimed to reduce health problems related to blood transfusions and to improve the quality and length of life for people with thalassemia and SCD. Learn more about CDC’s Transfusion Complications Monitoring.
In 2019, CDC funded a new 5-year Transfusions Complications Monitoring project to continue efforts to learn more about treatment complications associated with blood transfusions for thalassemia and SCD. The goal of the project is to improve access to, coordination of, and continuity of health care for people with thalassemia or SCD. This will lead to fewer transfusion-related complications and improved quality and increased length of life. This project aims to improve health care by
- Identifying patients, families, communities, and providers who will benefit from increased knowledge about blood transfusion therapy and the potential complications;
- Developing and sharing materials that will increase understanding of the diagnosis and management of these blood disorders; and
- Developing a storage facility for blood samples collected from transfused patients for use in identifying new or emerging threats to the safety of blood.
CDC has partnered with many groups to ensure the health and safety of people with thalassemia, including:
- Children’s Healthcare of Atlanta
- Children’s Hospital Boston
- Children’s Hospital of Los Angeles
- Children’s Hospital of Philadelphia
- Children’s Memorial Hospital of Chicago
- Georgia Health Policy Center, Georgia State University
- Michigan Department of Community Health
- UCSF Benioff Children’s Hospital – Oakland (formerly Children’s Hospital & Research Center Oakland)
- University of Florida
- University of Mississippi Medical Center
- Weill Medical College of Cornell University
CDC has partnered with the Cooley’s Anemia Foundation (CAF) to promote the health of people living with thalassemia. A major part of this program has been to provide credible health information to people with thalassemia and their families. The Foundation has developed and published a Guide for Living with Thalassemia. CAF has also increased their social media presence and conducted outreach to people with thalassemia to increase access to credible health information on thalassemia and increase participation in their patient outreach program. In addition, CAF hosts CDC’s Public Health Webinar Series on Blood Disorders. For more information about CAF, please visit hereexternal icon.