ArticleHereditary cancer in clinical practice2026
Monitoring and treatment patterns of von Hippel-Lindau disease-associated central nervous system hemangioblastomas.
Article in Hereditary cancer in clinical practice, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
backgroundPatients with von Hippel-Lindau-associated central nervous system hemangioblastoma (VHL-CNS-Hb) have a large economic burden, but there is limited real-world evidence describing their clinical burden in the United States (US). This study compared treatment patterns and monitoring procedures between patients with VHL-CNS-Hb and matched controls in the US.
methodsPatients with VHL-CNS-Hb and matched controls were identified from Optum’s de-identified Clinformatics® Data Mart Database. The index date was the date of first CNS-Hb diagnosis (VHL-CNS-Hb cohort) or the date of a random medical claim within the patient’s claims (control cohort). Treatment patterns were assessed in the VHL-CNS-Hb cohort using unadjusted incidence rates. Pain management drug use, disease monitoring procedures, and visits to medical specialists were compared between cohorts using unadjusted and adjusted generalized linear models. Clinical trial number: not applicable.
resultsThe most common treatment observed in the VHL-CNS-Hb cohort (N = 220) was targeted therapy for renal cell carcinoma (2.34 treatment events per 10 person-years). Pain management drug use, monitoring, and specialist visits peaked during the first/second year post-index. Compared to controls (N = 1100), VHL-CNS-Hb patients had higher rates of pain management drug use (adjusted incidence rate ratio [IRR]: 1.96), monitoring procedures (adjusted IRR: 3.93), and specialist visits (adjusted IRRs: 2.49–25.44; all P ≤ 0.001).
conclusionsPatients with VHL-CNS-Hb had a substantial, long-term clinical burden that included treatment for multiple VHL manifestations—reflecting the multi-organ nature of the disease—frequent pain management drug use, and high levels of healthcare use for disease monitoring and specialist visits.
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