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)
Sickle Cell Deaths in California and Georgia
This study estimated death rates among people with sickle cell disease (SCD) by matching up data from studies that monitor all people with SCD in a population with state death records.
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: August 31, 2016
- Page last updated: March 25, 2016
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