Why should I participate in the Cavernous Malformation Registry?

Why should I participate in the Cavernous Malformation Registry?

We need your help to learn more about individuals with cavernous malformations (CCM) and provide researchers and pharmaceutical companies with the data to pursue a cure.

We believe you should register because:

  1. As a person living with CCM, you know your disease better than anyone. When you take surveys about your daily experiences and symptoms and share your medical records, you can help create a key resource for research. Every piece of data expands the information from which researchers can draw.
  2. Your voice matters in rare disease research! CCM is rare, so each participant can greatly expand the information available to researchers.
  3. It’s secure, and it's easy to participate. Registration is simple and completed entirely online. With your informed consent to participate in research, you can contribute health data through surveys and by uploading medical records.  The Cavernous Malformation Registry is built to protect your identity and privacy.
  4. Your data can help bring us closer to a cure. Registry data may help research and clinical trial progress more quickly and efficiently. The data will be a powerful tool for clinical trials, treatments, and improved care.
  5. Participating will allow you to receive research updates and notifications about research participation opportunities.