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Lookup NU author(s): Professor Phil WhiteORCiD
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
© Author(s) (or their employer(s)) 2026. Re-use permitted under CC BY. Published by BMJ Group.. This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.Background: Information about the incidence of cerebral cavernous malformations (CCM) is sparse and the effect of increasing MRI availability is uncertain. Our objective was to assess the incidence of symptomatic and incidental CCM over time. Methods: This prospective, population-based study used multiple overlapping sources of case ascertainment to identify all adults aged ≥16 years who were newly diagnosed with CCM using brain MRI or pathology in Scotland between 1 January 1999 and 31 December 2003 or 1 January 2006 and 31 December 2010 inclusive. Crude, age-stratified, sex-stratified and symptomatic versus incidental CCM incidence rates were calculated using Scottish mid-year population estimates. Results: The crude incidence for 300 newly diagnosed CCM cases (median age 44 years, 141 (47%) men) was 0.72 (95% CI 0.64 to 0.80) per 100 000 adults per year, with similar rates for men and women. The incidence of symptomatic CCM was higher than that of incidentally detected CCM (0.40 (0.34 to 0.47) versus 0.31 (0.26 to 0.37), p=0.028). Between 1999–2003 and 2006–2010, there were statistically non-significant increases in symptomatic and incidental incidence of CCM (0.36 (0.28 to 0.45) to 0.44 (0.36 to 0.54), p=0.18; 0.30 (0.23 to 0.38) to 0.33 (0.26 to 0.41), p=0.59). The estimated probability of becoming symptomatic for people with asymptomatic CCM was 0.25% (0.22%–0.29%) per year. Overall incidence increased with age, adjusted for year of diagnosis and sex (adjusted incidence rate ratio 1.09 (1.01 to 1.17) per decade increase, p=0.019). Conclusions: The incidence of symptomatic CCM exceeded that of incidentally discovered CCM; however, no significant change was observed over time. Approximately 1 in 400 people with asymptomatic CCM become symptomatic annually. These findings can help plan healthcare service delivery and research study recruitment.
Author(s): Sandmann ACA, Coutinho JM, Verbaan D, Vandertop WP, White PM, Al-Shahi Salman R
Publication type: Article
Publication status: Published
Journal: Journal of Neurology, Neurosurgery and Psychiatry
Year: 2026
Pages: epub ahead of print
Online publication date: 15/04/2026
Acceptance date: 08/03/2026
Date deposited: 28/04/2026
ISSN (print): 0022-3050
ISSN (electronic): 1468-330X
Publisher: BMJ Publishing Group
URL: https://doi.org/10.1136/jnnp-2025-338343
DOI: 10.1136/jnnp-2025-338343
Data Access Statement: Data are available upon reasonable request. Deidentified data supporting the results reported in this article will be made available for scientific research upon formal request to the corresponding author and consequent approval of the proposal.
PubMed id: 41986053
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