Why Participate in the Registry?
We need you! Clinical research and treatment trials rely on volunteer participants to help generate critical data to understand cavernous malformation and how to treat the illness.
Every profile helps!
Each registry profile adds to our body of knowledge. For example, we learn where patients are located, what symptoms they are experiencing, and how they are being treated by their doctors. All of this information is helpful for understanding the diversity of the cavernous malformation community and for planning clinical trials.
Personalized study announcements
The registry is a communication tool – using the information in your profile, Alliance to Cure Cavernous Malformation can send personalized email notifications about new studies for which you may be eligible to participate. Joining the registry will not sign you up for any particular study nor share your contact info with a researcher. Instead, you’ll have the opportunity to learn more and contact the study team directly if you choose to participate.