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Four kids laying with their heads togetherHemoglobinopathies Monitoring

Hemoglobinopathies is the medical term for a group of blood disorders and diseases that affect red blood cells. These disorders include both sickle cell disease (SCD) and thalassemia.

Hemoglobinopathies monitoring means finding out the number of people with these conditions and how having a hemoglobinopathy affects their health, so that researchers and health care providers can ultimately improve the health of people with hemoglobinopathies.  By studying the number of people with hemoglobinopathies over time, we can find out if their numbers:

  • Are rising, dropping, or staying the same
  • Differ by area of the country/region
  • Differ among subgroups of people (by age, race, or ethnicity)

Hemoglobinopathies Monitoring

Study of people living with a hemoglobinopathy diagnosis in participating states 2004-2008.

The National Heart, Lung, and Blood Institute (NHLBI)/NIH and the Division of Blood Disorders (DBD) at the Centers for Disease Control and Prevention (CDC) joined forces to develop a state-based monitoring system for SCD and thalassemia. 

Click here to view key findings

The Centers for Disease Control and Prevention (CDC) is wrapping up two projects: the Registry and Surveillance System for Hemoglobinopathies (RuSH), and the Thalassemia Data Collection Project. Future efforts that focus on SCD and thalassemia involve two new projects: Public Health Research, Epidemiology, and Surveillance for Hemoglobinopathies (PHRESH), and Blood Safety Surveillance among People with Blood Disorders.