Register for the Cavernous Malformation Registry
If you or your child is affected by cavernous malformation (CM), you have the knowledge and power to advance research with your voluntary participation in the Registry. Your data can help illuminate new paths toward better treatments and a cure.
Goals
- Identify individuals with cavernous malformations (CCM)
- Gather data through voluntary registration, self-reported survey responses, patient-mediated medical record collection, and optional biospecimen sharing
- Make data available to researchers and clinicians who are studying CCM to answer questions regarding the disease, including its causes, treatments, and other topics
- Be the primary hub of clinical trial recruitment for individuals with CCM disorders
Why Register?
- Your voice matters in research
- It's secure and easy to participate
- Your data can help bring us closer to a cure
- You will be the first to learn about new research findings and new research participation opportunities
What is a Cavernous Malformation?
A cavernous malformation is a mulberry-shaped abnormal blood vessel with thin, leaky walls in the brain or spinal cord. It is also known as a cavernoma or cavernous angioma. 1 in 500 people have a cavernous malformation, but most are unaware and will never be symptomatic. Cavernous malformations can hemorrhage and cause seizures and stroke-like symptoms.
Thank You!
The Cavernous Malformation Registry is partially funded through generous gifts from Sara Sukalich and her husband, Matt Mingione, in memory of Sara's mother, Susan Sukalich.
