Common data model for sickle cell disease surveillance: considerations and implications.

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.

Department

Description

Provenance

Citation

Published Version (Please cite this version)

10.1093/jamiaopen/ooad036

Publication Info

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.

This is constructed from limited available data and may be imprecise. To cite this article, please review & use the official citation provided by the journal.

Scholars@Duke

Strouse

John J. Strouse

Associate Professor of Medicine

My research has focused on the epidemiology, risk factors, and prevention of the pulmonary and central nervous system complications of sickle cell disease and includes retrospective and prospective cohort studies and clinical trials.  I received my Ph.D. in clinical investigation from the Johns Hopkins Bloomberg School of Public Health for a series of studies to identify predictors of cognitive function in children with sickle cell disease.  This work has expanded to the evaluation of the interaction between environment and disease in both children and adults and the functional evaluation of adults with sickle cell disease.  My other research interests include the application of large clinical, research, and administrative databases to the study of rare hematological diseases and interventions to improve quality of and access to care for sickle cell disease. I serve on the American Society of Hematology Sickle Cell Taskforce and Sickle Cell Pain Guideline Panel and am co-chair of the American Society of Hematology Healthcare Professional Education and Training Work Group.

 

Kayle

Mariam Kayle

Associate Professor in the School of Nursing

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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