As of 2021, the SCDC program had expanded to 11 states with the addition of Colorado and Wisconsin. The newly funded states developed strategies for SCD case identification and data linkage similar to those used by California and Georgia. In 2019, nine states (Alabama, California, Georgia, Indiana, Michigan, Minnesota, North Carolina, Tennessee, and Virginia) were funded as part of an SCDC capacity-building initiative. The SCD case definition is based on an algorithm that classifies cases with laboratory confirmation as confirmed cases and those with a reported clinical diagnosis or three or more diagnostic codes over a 5-year period from an administrative data source as probable cases. Data from multiple sources and years are linked and deduplicated so that states can analyze and report on SCD population prevalence, demographic characteristics, health care access and use, and health outcomes.
Administrative and clinical data sources include state Medicaid and Children’s Health Insurance Program databases, death certificates, NBS programs, hospital discharge and emergency department records, and clinical records or case reports.
These linkages serve to synthesize and disseminate population-based, longitudinal data for persons identified with SCD from multiple sources using selected International Classification of Diseases, Ninth Revision, Clinical Modification, and Tenth Revision codes and laboratory results confirmed through state newborn screening (NBS) programs or clinic case reporting.
SCDC is a population-based tracking system that uses comprehensive data linkages in state health systems. Both California and Georgia participated in RuSH and PHRESH, which guided the development of the SCDC methods and case definitions. Previously, surveillance for SCD was conducted by two short-term projects: Registry and Surveillance System for Hemoglobinopathies (RuSH), which was conducted during 2010–2012 and included 2004–2008 data, and Public Health Research, Epidemiology, and Surveillance for Hemoglobinopathies (PHRESH), which was conducted during 2012–2014 and included 2004–2008 data. Population-based public health surveillance is critical to understanding the course and outcomes of SCD as well as the health care use, unmet health care needs, and gaps in essential services of the population affected by SCD.ĭescription of the Program: In 2015, CDC established the Sickle Cell Data Collection (SCDC) program to characterize the epidemiology of SCD in two states (California and Georgia). Early diagnosis, screenings and preventive interventions, and access to specialist health care can decrease illness and death. Complications of SCD can include anemia, debilitating acute and chronic pain, infection, acute chest syndrome, stroke, and progressive organ damage, including decreased cognitive function and renal failure. Problem/Condition: Sickle cell disease (SCD), an inherited blood disorder affecting an estimated 100,000 persons in the United States, is associated with multiple complications and reduced life expectancy.
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