Sickle Cell Data Collection Program Report: Data to Action - The SCDC Program

The goal of the SCDC program is to improve quality of life, life expectancy, and health among those living with SCD.

The goal of the SCDC program is to improve quality of life, life expectancy, and health among those living with SCD.

The SCDC program, which collects health information about people with SCD to study long-term trends in diagnosis, treatment, and healthcare access, seeks to address gaps in knowledge. The SCDC program is the first data collection system of its kind, collecting population-based data from multiple sources over many years to present a comprehensive picture of the SCD population.

The SCDC program builds on previous SCD surveillance carried out under the CDC and National Heart, Lung, and Blood Institute’s Registry and Surveillance System for Hemoglobinopathies (RuSH) pilot project; and the CDC’s Public Health Research, Epidemiology, and Surveillance in Hemoglobinopathies (PHRESH) initiative.

Goals

The goal of the SCDC program is to improve quality of life, life expectancy, and health among those living with SCD. The SCDC program accomplishes this goal by collecting, summarizing, and reporting multisource, population-based, longitudinal data (data collected over time) for people with SCD to

  • Establish a health profile of those with SCD
  • Track changes in SCD health outcomes over time
  • Ensure credible, scientifically sound information to improve standards of care
  • Provide information to improve policy and healthcare practices.

California and Georgia have implemented the SCDC program; the long-term goal is to expand the program to multiple states and to establish SCD surveillance at the national level.