What are the goals of the Cavernous Malformation Registry?

Title: 
What are the goals of the Cavernous Malformation Registry?

The Cavernous Malformation Registry has 5 main goals:

  1. Identify individuals with cavernous malformations in the brain and spinal cord (CCM).

  2. Gather past and future information on individuals with cavernous malformations through voluntary registration, self-reported survey questionnaires, patient-mediated medical record collection, and optional biospecimen sharing.

  3. Make data collected through the Registry available to researchers and clinicians studying CCM to answer questions regarding the disease, including its causes, potential treatments, and other topics.

  4. Be the primary hub of clinical trial recruitment for individuals with CCM.

  5. Communicate current research findings to Registry participants.