Making SCD Warriors Visible: A Public Health Visualization Project.

Area of Science:

• Public Health
• Genetics
• Data Science

Background:

• Sickle cell disease (SCD) is the most common inherited blood disorder, affecting 7.74 million people worldwide.
• Tracking the epidemiology of SCD is crucial, especially in under-resourced populations where patients are often lost to follow-up.
• Existing data systems often fail to provide a comprehensive view of the SCD patient population.

Purpose of the Study:

• To develop and implement a comprehensive data collection and visualization system for sickle cell disease in Indiana.
• To improve the visibility of SCD patient populations for clinicians, public health officials, and community organizations.
• To address the challenge of patients with SCD being lost to follow-up as they transition to adulthood.

Main Methods:

• Data were aggregated from multiple clinical and public health sources within Indiana.
• A web-based dashboard was created to visualize the comprehensive sickle cell disease dataset.
• The system links disparate data to create a unified view of individuals living with SCD.

Main Results:

• A comprehensive dataset of individuals living with SCD in Indiana was established.
• The web-based dashboard successfully visualizes SCD patient populations.
• The tool enhances the ability of stakeholders to identify and engage with the SCD community.

Conclusions:

• Data linkage and dashboard visualization are effective tools for understanding and managing sickle cell disease populations.
• This approach can improve public health surveillance and clinical care for individuals with SCD.
• Increased visibility of SCD patients supports targeted interventions and reduces loss to follow-up.