Common data model for sickle cell disease surveillance: considerations and implications.
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2023-07
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Abstract
Objective
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.Type
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Smeltzer, Matthew P, Sarah L Reeves, William O Cooper, Brandon K Attell, John J Strouse, Clifford M Takemoto, Julie Kanter, Krista Latta, et al. (2023). Common data model for sickle cell disease surveillance: considerations and implications. JAMIA open, 6(2). p. ooad036. 10.1093/jamiaopen/ooad036 Retrieved from https://hdl.handle.net/10161/27484.
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Mariam Kayle
Dr. Kayle’s program of research aims to improve health outcomes among people with childhood-onset complex chronic conditions, with a focus on sickle cell disease (SCD). In partnership with the North Carolina Department of Health and Human Services, Division of Public Health, she co-leads the North Carolina Sickle Cell Data Collection Program (NC SCDC), a state-level surveillance program funded by the Centers for Disease Control and Prevention. NC SCDC curates and analyzes multi-source, population-level datasets to describe the epidemiology, health outcomes, and social determinants of health influencing SCD. Dr. Kayle collaborates with national and state partners to disseminate surveillance findings informing practice, research, and policy for SCD.
Dr. Kayle teaches Nursing Care of Infants, Children, and Adolescents in the Accelerated Bachelor of Nursing program. Her service contributions include several state-level committees on SCD.
Dr. Kayle completed her Bachelor of Science in Nursing at the American University of Beirut, her Master's in Pediatric Acute and Critical Care and her Doctor of Philosophy in Nursing at Duke University School of Nursing, and her Postdoctoral Fellowship in Health Services and Outcomes Research at Northwestern University, Feinberg School of Medicine. She has over twelve years of pediatric acute and critical care clinical experience.
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