The Cavernous Malformation Registry Can Help Advance Your Research

The Cavernous Malformation Registry aggregates data from patient-reported outcomes, medical records, and biospecimens to form a more complete picture of individuals with cavernous malformations in the brain and spinal cord.  We can assist your research efforts in several ways:

  • Provide access to previously collected Registry data
  • Help collect new data from Registry participants
  • Help you find participants for your study
  • Release new surveys to help you better understand CCM

We are committed to sharing Registry data to foster engagement with this rare disease. Please email to learn more about accessing data from the Cavernous Malformation Registry. We look forward to working with you.