You have the knowledge and power to advance research for a CCM cure.
By joining the Cavernous Malformation Registry, you will be strengthening a critical research tool. Learn more about the purpose of the Registry.
There are two options to create an account in our Patient Registry:
- Patient account. For affected individuals 18 years or older.
- Caregiver account. For parents or legal guardians of a minor-age affected person OR a legal representative of an adult aged patient.
If you are a patient and a caregiver, select the patient account option to create an account for yourself. You will then have the option to add your affected child to your account.
Upon registration, you will be asked to read and sign an informed consent form to participate in the new registry. You will be asked to complete surveys at the time of registration and periodically throughout the year. Everyone in the patient registry will have the opportunity to participate in the CCM Biobank if they choose to do so. This is a program where you can opt to donate biological samples to be used for future research.
Read more and sign up for the CCM Registry here
For any questions, please contact: coordinator@alliancetocure.org.
