Data collection project visualizes sickle cell disease populations, highlighting public health challenges and implications.
There are 7.74 million individuals living with sickle cell disease (SCD) globally, making it the most inherited blood disorder. Public health seeks to measure the epidemiology of SCD as it occurs in nations and among populations that are under-resourced and at-risk. Many SCD patients are lost-to-follow-up as they age into adulthood. In the Indiana SCD Data Collection program, data are linked across multiple clinical and public health sources to create a comprehensive dataset on people living with SCD and visualized using a web-based dashboard. The dashboard makes SCD populations visible to clinicians, public health, and community organizations that serve patients and their families.
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Dixon et al. (2025) studied this question.
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