Browsing by Author "Plaxco, Allison P"
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Item Open Access Birth Prevalence of Sickle Cell Disease and County-Level Social Vulnerability - Sickle Cell Data Collection Program, 11 States, 2016-2020.(MMWR. Morbidity and mortality weekly report, 2024-03) Kayle, Mariam; Blewer, Audrey L; Pan, Wei; Rothman, Jennifer A; Polick, Carri S; Rivenbark, Joshua; Fisher, Elliott; Reyes, Camila; Strouse, John J; Weeks, Shelby; Desai, Jay R; Snyder, Angela B; Zhou, Mei; Sutaria, Ankit; Valle, Jhaqueline; Horiuchi, Sophia S; Sontag, Marci K; Miller, Joshua I; Singh, Ashima; Dasgupta, Mahua; Janson, Isaac A; Galadanci, Najibah; Reeves, Sarah L; Latta, Krista; Hurden, Isabel; Cromartie, Shamaree J; Plaxco, Allison P; Mukhopadhyay, Ayesha; Smeltzer, Matthew P; Hulihan, MarySickle cell disease (SCD) remains a public health priority in the United States because of its association with complex health needs, reduced life expectancy, lifelong disabilities, and high cost of care. A cross-sectional analysis was conducted to calculate the crude and race-specific birth prevalence for SCD using state newborn screening program records during 2016-2020 from 11 Sickle Cell Data Collection program states. The percentage distribution of birth mother residence within Social Vulnerability Index quartiles was derived. Among 3,305 newborns with confirmed SCD (including 57% with homozygous hemoglobin S or sickle β-null thalassemia across 11 states, 90% of whom were Black or African American [Black], and 4% of whom were Hispanic or Latino), the crude SCD birth prevalence was 4.83 per 10,000 (one in every 2,070) live births and 28.54 per 10,000 (one in every 350) non-Hispanic Black newborns. Approximately two thirds (67%) of mothers of newborns with SCD lived in counties with high or very high levels of social vulnerability; most mothers lived in counties with high or very high levels of vulnerability for racial and ethnic minority status (89%) and housing type and transportation (64%) themes. These findings can guide public health, health care systems, and community program planning and implementation that address social determinants of health for infants with SCD. Implementation of tailored interventions, including increasing access to transportation, improving housing, and advancing equity in high vulnerability areas, could facilitate care and improve health outcomes for children with SCD.Item Unknown Common data model for sickle cell disease surveillance: considerations and implications.(JAMIA open, 2023-07) Smeltzer, Matthew P; Reeves, Sarah L; Cooper, William O; Attell, Brandon K; Strouse, John J; Takemoto, Clifford M; Kanter, Julie; Latta, Krista; Plaxco, Allison P; Davis, Robert L; Hatch, Daniel; Reyes, Camila; Dombkowski, Kevin; Snyder, Angela; Paulukonis, Susan; Singh, Ashima; Kayle, MariamObjective
Population-level data on sickle cell disease (SCD) are sparse in the United States. The Centers for Disease Control and Prevention (CDC) is addressing the need for SCD surveillance through state-level Sickle Cell Data Collection Programs (SCDC). The SCDC developed a pilot common informatics infrastructure to standardize processes across states.Materials and methods
We describe the process for establishing and maintaining the proposed common informatics infrastructure for a rare disease, starting with a common data model and identify key data elements for public health SCD reporting.Results
The proposed model is constructed to allow pooling of table shells across states for comparison. Core Surveillance Data reports are compiled based on aggregate data provided by states to CDC annually.Discussion and conclusion
We successfully implemented a pilot SCDC common informatics infrastructure to strengthen our distributed data network and provide a blueprint for similar initiatives in other rare diseases.