CDC's Work on Thalassemia

People with inherited blood disorders like thalassemia often require frequent blood transfusions to remain healthy. In the United States, blood donations are screened for various viruses that can cause infections. Additionally, blood donors can be excluded from donating based on their responses to questionnaires to determine their risk of having a transfusion-transmissible infection (an infection that can be passed to another person through a blood transfusion). These mechanisms work together to keep the risk of obtaining a transfusion-transmitted infection extremely low.

Epidemiology and Surveillance

In 2004, CDC started the Thalassemia Data and Blood Specimen Collection System to quickly find infections that might be spread through blood transfusion. It focused on patients receiving care at seven CDC-funded Thalassemia Treatment Centers (TTCs). Participants were tested each year for the presence of hepatitis, human immunodeficiency virus (HIV), and West Nile virus.

In 2012, the CDC expanded monitoring to include other heavily transfused populations (e.g., persons with sickle cell disease) with a project called Blood Safety Surveillance for People with Blood Disorders. This includes persons with thalassemia, sickle cell disease, Diamond Blackfan anemia, and other non-malignant (non-cancerous) blood disorders that require transfusion for treatment. This project helps to monitor those who receive repeated transfusions of red blood cells that may have a virus, and through the monitoring, increase the likelihood that a new or emerging threat to the safety of blood can be found quickly. In addition to hepatitis and HIV, the new project focuses on new and emerging threats to blood safety and other harmful effects of repeated blood transfusion (such as alloimmunization or iron overload).

CDC has worked with many collaborators to ensure the safety of the nation’s blood supply. Partners have included:

  • Children’s Healthcare of Atlanta
  • Children’s Hospital Boston
  • Children’s Hospital of Los Angeles
  • Children’s Hospital of Philadelphia
  • Children’s Hospital & Research Center Oakland
  • Children’s Memorial Hospital of Chicago
  • Michigan Department of Community Health
  • University of Mississippi Medical Center
  • Weill Medical College of Cornell University

In 2014, CDC began a 5-year project with Georgia State University, the University of Florida, and the UCSF Benioff Children’s Hospital Oakland to learn more about the health complications that can occur when people with thalassemia and sickle cell disease (SCD) receive blood transfusions. The project aims to decrease health problems related to blood transfusions to improve the quality and length of life for people with thalassemia and sickle cell disease. Learn more about CDC’s Transfusion Complications Monitoring.

Publications from Thalassemia Data on Blood Safety

The data from the Thalassemia Data and Blood Specimen Collection System has been analyzed and published in two articles. One was published in the journal AIDS Research and Human Retroviruses titled “Human T Cell Lymphotropic Virus Type 1 Infection Among U.S. Thalassemia Patientexternal icon”. The other was published in the journal Transfusion titled “Transfusion Complications in Thalassemia Patients: A Report from the Centers for Disease Control and Prevention (CDC)external icon”. The results of these two reports highlight the continued importance of monitoring and screening the nation’s blood supply to decrease transfusion-related health risks.

Health Promotion

CDC has partnered with the Cooley’s Anemia Foundation (CAF) to promote the health of people living with thalassemia. A major component of this program has been to provide credible health information to persons with thalassemia and their families. The Foundation has developed an “Emergency Preparedness Checklist for People with Thalassemia,” and has recently released a “Guide for Living with Thalassemia pdf icon[PDF – 2.63 MB]external icon.” CAF has increased their social media presence and conducted outreach to people with thalassemia in an effort to increase participation in their patient registry. For more information about the Cooley’s Anemia Foundation, go to www.cooleysanemia.orgexternal icon.