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 coordinator@alliancetocure.org to learn more about accessing data from the Cavernous Malformation Registry. We look forward to working with you.