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)
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.
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.
- Page last reviewed: September 14, 2015
- Page last updated: September 3, 2014
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