The Brain Vascular Malformations Consortium (BVMC) is a study team investigating three rare diseases that cause brain vascular malformations including Hereditary Hemorrhagic Telangiectasia (HHT), Sturge-Weber Syndrome (SWS), and Cerebral Cavernous Malformations (CCM). The consortium came together in 2009 through the efforts of patient advocacy group leaders from Cure HHT, Alliance to Cure Cavernous Malformation, and the Sturge Weber Foundation.
The study followed patients for up to 15 years, collecting natural history information and biological samples. Researchers enrolled 808 patients at 7 institutions around the United States. The goal of this study was to investigate the genetic factors that contribute to CCM disease severity and progression.
As of March 31, 2025, the project “Brain Vascular Malformation Consortium: Predictors of clinical course. Project 3: Modifiers of Disease Severity and Progression in Cerebral Cavernous Malformations (CCM)” has completed its patient follow-ups.
Updated 3.31.2025
