ArticleJMIR public health and surveillance2023
Evaluating the Discriminatory Ability of the Sickle Cell Data Collection Program's Administrative Claims Case Definition in Identifying Adults With Sickle Cell Disease: Validation Study.
Article in JMIR public health and surveillance, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.
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Who cites it
10 citing papers in PubMed, 10 citations in OpenAlex.
- Real-World Claims Data on Prescribed Drugs and the Associated Drug-Drug Interaction Risk in Sickle Cell Disease in the United States.Clinical and translational science · 2026Article
- Patterns of hormonal contraception use in women with sickle cell disease and employer-sponsored insurance.Contraception · 2026Article
- Accurate identification of sickle cell disease cases in a large genotyped cohort using electronic health record data.Blood advances · 2026Article
- 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
- Economic Burden of Sickle Cell Disease: A Retrospective Study of Pediatric and Adult Individuals With Medicaid Coverage From 2016 to 2020.American journal of hematology · 2026Article
- Changes in acute care use among people with sickle cell disease after adoption of a prescription drug monitoring program.Blood advances · 2025Article
- Article
- 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
- Acute care utilization among individuals with sickle cell disease and related cardiopulmonary and renal complications.PloS one · 2024Article
Corrections and comments
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Authors and funding
15 authors at 6 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundSickle cell disease (SCD) was first recognized in 1910 and identified as a genetic condition in 1949. However, there is not a universal clinical registry that can be used currently to estimate its prevalence. The Sickle Cell Data Collection (SCDC) program, funded by the Centers for Disease Control and Prevention, funds state-level grantees to compile data within their states from various sources including administrative claims to identify individuals with SCD. The performance of the SCDC administrative claims case definition has been validated in a pediatric population with SCD, but it has not been tested in adults.
objectiveThe objective of our study is to evaluate the discriminatory ability of the SCDC administrative claims case definition to accurately identify adults with SCD using Medicaid insurance claims data.
methodsOur study used Medicaid claims data in combination with hospital-based medical record data from the Alabama, Georgia, and Wisconsin SCDC programs to identify individuals aged 18 years or older meeting the SCDC administrative claims case definition. In order to validate this definition, our study included only those individuals who were identified in both Medicaid's and the partnering clinical institution's records. We used clinical laboratory tests and diagnostic algorithms to determine the true SCD status of this subset of patients. Positive predictive values (PPV) are reported overall and by state under several scenarios.
resultsThere were 1219 individuals (354 from Alabama and 865 from Georgia) who were identified through a 5-year time period. The 5-year time period yielded a PPV of 88.4% (91% for data from Alabama and 87% for data from Georgia), when only using data with laboratory-confirmed (gold standard) cases as true positives. With a narrower time period (3-year period) and data from 3 states (Alabama, Georgia, and Wisconsin), a total of 1432 individuals from these states were included in our study. The overall 3-year PPV was 89.4% (92%, 93%, and 81% for data from Alabama, Georgia, and Wisconsin, respectively) when only considering laboratory-confirmed cases as true cases.
conclusionsAdults identified as having SCD from administrative claims data based on the SCDC case definition have a high probability of truly having the disease, especially if those hospitals have active SCD programs. Administrative claims are thus a valuable data source to identify adults with SCD in a state and understand their epidemiology and health care service usage.
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