Why Participate in the Registry?
Join the international research community
We need you! Clinical research and treatment trials rely on volunteer participants to help generate critical data to understand cavernous angioma 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 doctor. All of this information is helpful for understanding the diversity of the cavernous angioma community and for planning clinical trials.
Personalized study announcements
The registry is a recruitment tool – using the information in your profile, Angioma Alliance 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.
Take action. Share data.
We believe that advances are made faster when data collection is standardized and patients contribute their data in a global network.
Upgrade provided by the Be Brave For Life Foundation and the Sukalich family.
GENETIC TESTING FOR YOU AND FOR YOUR FAMILY
Genetic testing is recommended for those with multiple cavernous angiomas and/or a family history of the illness. Angioma Alliance runs a free genetic testing program for those without insurance coverage for testing – joining the registry is the first place to start enrolling in the program.
Why Participate in the Registry?
Join the international research community
We need you! Clinical research and treatment trials rely on volunteer participants to help generate critical data to understand cavernous angioma 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 doctor. All of this information is helpful for understanding the diversity of the cavernous angioma community and for planning clinical trials.
Personalized study announcements
The registry is a recruitment tool – using the information in your profile, Angioma Alliance 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.
