Thalassemia Data Collection and Blood Safety Monitoring

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Blood Safety Monitoring

People with inherited blood disorders such as thalassemia, Diamond-Blackfan anemia, and sickle cell disease (SCD) 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.

Blood Safety Monitoring for People with Blood Disorders

Blood Safety Monitoring for People with Blood Disorders is a project that has allowed the CDC to monitor people who receive routine blood transfusions. However, this project monitored not only patients with thalassemia but also those with sickle cell disease, Diamond-Blackfan Anemia, and other non-cancer-related blood disorders. Expanding this monitoring to other groups of people that have frequent transfusions increases the likelihood that a new or developing threat to the safety of blood can be found rapidly. Through this Blood Safety Monitoring project, CDC aims to:

  • Better understand the risks of transfusion-related health problems and illness due to the spread of infected blood through transfusions
  • Better understand rare blood types and blood banking practices
  • Monitor the rates of transfusion-related health problems
  • Develop strategies to prevent the health problems that often occur from having regular blood transfusions [such as every 4–6 weeks] over a long period of time
  • Find ways to address new or re-emerging infectious diseases (diseases that have increased in number within the past 2 decades or threaten to increase in the future)

CDC provided funding through a cooperative agreement to 4 awardees each of whom had access to at least 250 patients with non-cancer-related blood disorders who received at least one transfusion per year. This project helps CDC address the Healthy People 2020 objective BDBS-18: reduce the proportion of persons who develop adverse events resulting from the use of blood and blood products.

Thalassemia Data and Blood Specimen Collection Project

Thalassemia patients are at high risk for infection through blood transfusion because of their need to be treated with blood products for their condition. The CDC created the Thalassemia Data and Blood Specimen Collection Project in 2004 to quickly find known and developing infections that might spread through blood transfusion and be a potential threat to these high risk patients. Now concluded, this project focused on patients who received care at seven CDC-funded Thalassemia Treatment Centers (TTCs). In addition to testing for the presence of hepatitis and HIV, viruses known to have been transmitted in blood in the past, TTC participants were also tested for a new emerging virus – the West Nile Virus.