Validity of The Danish National Chronic Myeloid Neoplasia Registry. (PubMed, Clin Epidemiol)
PPV was high for core diagnostic, treatment and comorbidity variables: ET (0.91), PV (0.95) and PMF (0.97), date of diagnosis (0.97), splenomegaly (0.98), JAK2V617F (0.97), CALR (0.92), hypertension (0.93), hyperlipidemia (0.90), diabetes (0.97), and common treatments (phlebotomy, hydroxyurea, interferon, ruxolitinib ≥.93). The DMR demonstrates high validity for several clinically relevant variables and constitutes a reliable source of real-world data in MPN research and therefore, crosslinking registry variables with other data sources may enable robust epidemiological studies and unprecedented precision in real-world evidence for MPN patients. Nevertheless, variable documentation and data quality must be critically assessed to account for changes in data entry practices across time periods.