Underreporting of Vestibular Schwannoma Incidence Within National Brain Tumor and Cancer Registries in the United States

John P. Marinelli, Ashley M. Nassiri, Elizabeth B. Habermann, Christine M. Lohse, Sara J. Holton, Matthew L. Carlson

Research output: Contribution to journalArticlepeer-review


Objective:Reports using large brain tumor and cancer registries suggest that the incidence of vestibular schwannoma is considerably lower in the United States compared with other countries. The current study compares the incidence and disease characteristics of vestibular schwannoma within a large tertiary referral center's brain tumor and cancer registry using nationally mandated reporting protocols to disease incidence in the same population using an externally validated population-based consortium.Study Design:Population-based study spanning 1,945,007 person-years.Setting:Large tertiary referral center.Patients:Adults with sporadic vestibular schwannoma.Main Outcome Measure:Disease incidence rates from 2004 to 2016.Results:From 2004 to 2016, the incidence of vestibular schwannoma in the tumor registry was 1.3 per 100,000 person-years whereas the population-based cohort had an incidence of 4.4 per 100,000 person-years. From 2012 to 2016, the incidence in the tumor registry was 1.4 per 100,000 person-years compared with 5.2 in the population-based cohort. Patients within the population-based cohort were significantly more likely to have smaller tumors at diagnosis (78% intracanalicular versus 45%; p=0.004) and consequently more likely to undergo management consisting of observation with serial imaging as opposed to treatment with either microsurgery or radiosurgery (71% versus 28%; p=0.001).Conclusions:The reliance on pathology specimens and cancer-related treatment data for the national registration of new cancer and brain tumor diagnoses may introduce selection bias and underreporting of benign brain tumors that frequently involve observation as a primary treatment modality. This selection bias likely accounts for the discrepant incidence rates of vestibular schwannoma reported between the United States and other countries.

Original languageEnglish (US)
Pages (from-to)E758-E763
JournalOtology and Neurotology
Issue number6
StatePublished - Jul 1 2021


  • Acoustic neuroma
  • Benign brain tumors
  • Central brain tumor registry
  • Epidemiology
  • Incidence
  • Population-based
  • Prevalence
  • Rochester Epidemiology Project
  • Sporadic
  • Surveillance, Epidemiology, and End Results
  • United States
  • Vestibular schwannoma

ASJC Scopus subject areas

  • Clinical Neurology
  • Sensory Systems
  • Otorhinolaryngology


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