The Cavernous Angioma Registry (also known as the Angioma Alliance – Susan Sukalich International Cavernous Angioma Patient Registry) was launched in 2009 to connect the Cavernous Angioma patient and research communities, support study recruitment, and expedite research for a cure.
When you join the registry, you are helping us to understand the size and diversity of the cavernous angioma patient community. This information helps improve clinical trial and research planning. Also, the data you provide can be used in research to generate hypotheses and help answer important questions about cavernous angioma.
How can you join the registry?
- Visit www.angiomaregistry.org to sign up. You will be asked to complete a profile and create your account.
- Once your account is created, you will be prompted to take two online surveys: 1) A 20-minute survey that gathers information on your medical history, symptoms, surgeries and medications; and 2) a 5-minute survey that gathers information on other medical conditions for which you may also be diagnosed. You don’t have to complete these in one sitting. You can save your work and come back at a later time.
- You can also create a profile for each person in your family who is affected by cavernous angioma and complete the surveys with their information.