New Patient Registry

Hanging Letters spelling out Register NowWe are excited to announce that we have updated our patient registry to a new platform!

There are two options to create an account in our new registry:

  1. Patient account-this is for affected individuals 18 years or older
  2. Caregiver account-this is 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 new 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.

Please read more about our new registry and sign up here.

For any questions, please contact: