Increasing Visibility of Sickle Cell Disease in Indiana: Establishing Baseline Prevalence Using Integrated Data From...

Area of Science:

• Public Health Surveillance
• Epidemiology
• Hematology

Background:

• Sickle cell disease (SCD) is a genetic blood disorder requiring comprehensive public health monitoring.
• The Indiana Sickle Cell Data Collection (IN-SCDC) program was established to address the need for localized SCD data.
• Understanding the prevalence and distribution of SCD is vital for targeted interventions.

Purpose of the Study:

• To describe the development and baseline findings of the IN-SCDC program.
• To report the prevalence, incidence, and geographic distribution of SCD in Indiana.
• To inform public health interventions, research, and policy development for the SCD population.

Main Methods:

• Utilized an integrated data collection approach combining multiple sources.
• Applied case definitions from the Centers for Disease Control and Prevention (CDC).
• Analyzed data from 2015-2019 to determine SCD prevalence, incidence, and demographic characteristics.

Main Results:

• Identified 1695 individuals with SCD in Indiana between 2015-2019.
• The age-adjusted prevalence was 24.7 per 100,000 people, significantly higher in Black or African American individuals (209.3 per 100,000).
• Incidence was 1 in 2608 live births overall, and 1 in 446 among Black or African American births; 86 deaths were recorded.

Conclusions:

• Established a baseline for the IN-SCDC program's ongoing surveillance efforts.
• Findings will inform standards of care, identify access gaps, and guide policy for SCD management.
• Emphasized the importance of continued data collection for improving outcomes for individuals with SCD.