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

Matthew P Smeltzer; Sarah L Reeves; William O Cooper; Brandon K Attell; John J Strouse; Clifford M Takemoto; Julie Kanter; Krista Latta; Allison P Plaxco; Robert L Davis; Daniel Hatch; Camila Reyes; Kevin Dombkowski; Angela Snyder; Susan Paulukonis; Ashima Singh; Mariam Kayle

doi:10.1093/jamiaopen/ooad036

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

JAMIA Open. 2023 May 27;6(2):ooad036. doi: 10.1093/jamiaopen/ooad036. eCollection 2023 Jul.

Authors

Matthew P Smeltzer¹, Sarah L Reeves², William O Cooper^{3

4}, Brandon K Attell⁵, John J Strouse⁶, Clifford M Takemoto⁷, Julie Kanter⁸, Krista Latta², Allison P Plaxco¹, Robert L Davis⁹, Daniel Hatch¹⁰, Camila Reyes¹¹, Kevin Dombkowski², Angela Snyder⁵, Susan Paulukonis¹², Ashima Singh¹³, Mariam Kayle¹⁰

Affiliations

¹ Division of Epidemiology, Biostatistics, and Environmental Health School of Public Health, University of Memphis, Memphis, Tennessee, USA.
² Department of Pediatrics, Susan B Meister Child Health Evaluation and Research (CHEAR) Center, University of Michigan, Ann Arbor, Michigan, USA.
³ Department of Pediatrics, Vanderbilt University School of Medicine, Nashville, Tennessee, USA.
⁴ Department of Health Policy, Vanderbilt University School of Medicine, Nashville, Tennessee, USA.
⁵ Georgia Health Policy Center, Georgia State University, Atlanta, Georgia, USA.
⁶ Department of Hematology, Duke University, Durham, North Carolina, USA.
⁷ Department of Hematology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
⁸ Division of Hematology-Oncology, University of Alabama Birmingham, Birmingham, Alabama, USA.
⁹ Department of Bioinformatics, University of Tennessee Health Science Center, Memphis, Tennessee, USA.
¹⁰ Duke University School of Nursing, Durham, North Carolina, USA.
¹¹ Duke Office of Clinical Research, Duke University School of Medicine, Durham, North Carolina, USA.
¹² Tracking California, Public Health Institute, Oakland, California, USA.
¹³ Department of Pediatrics, Medical College of Wisconsin, Milwaukee, Wisconsin, USA.

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.

Keywords: data model; sickle cell; surveillance.