ArticleJAMIA open2023
Common data model for sickle cell disease surveillance: considerations and implications.
Article in JAMIA open, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
6 citing papers in PubMed.
- Novel use of a hash-based tokenization for sharing sickle cell disease data without sharing protected health information.Blood advances · 2026Article
- High concordance of physician-attestation with manual data abstraction for sickle cell type: an ASH RC Data Hub study.Blood advances · 2026Article
- Changes in acute care use among people with sickle cell disease after adoption of a prescription drug monitoring program.Blood advances · 2025Article
- Prevalence, Mortality, and Access to Care for Chronic Kidney Disease in Medicaid-Enrolled Adults With Sickle Cell Disease in California: Retrospective Cohort Study.JMIR public health and surveillance · 2024Article
- Characteristics of Emergency Department Visits Made by Individuals With Sickle Cell Disease in the U.S., 1999-2020.AJPM focus · 2024Article
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Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
17 authors.
Funding
No grant is acknowledged in the PubMed record.
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.
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Registered trials
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