The Cavernous Malformation Registry

In 2011, the Alliance to Cure Cavernous Malformation, formerly known as Angioma Alliance, launched the Cavernous Angioma Registry to provide robust, accessible patient-reported data to families, researchers, clinicians, and companies researching cavernous malformations of the brain and spinal cord. Cavernous malformations are also known as cavernoma, cavernous angioma, or CCM. The Cavernous Angioma Registry grew and supported clinical researchers and treatment developers who needed information to develop hypotheses and plan studies.

In late 2022, a relaunch of the patient registry, now called the Cavernous Malformation Registry to match the ICD-11 designation for the disease, offered the opportunity to broaden its use. The Cavernous Malformation Registry is overseen by an institutional review board and is associated with the Alliance to Cure Cavernous Malformation biospecimen repository. The Registry houses both patient-reported data and medical records. It has the potential to track longitudinal data and host external clinical research projects. 

The Alliance to Cure Cavernous Malformation was founded in 2002 with the mission to inform, support, and mobilize those affected by cavernous malformations and drive research for better treatments and a cure. It is a 501(c)3 non-profit supported by individual donors, foundations, and corporate giving. Our vision is a cure for cavernous malformation. 

Your Data Helps Advance Research

CCM is rare, so each participant is crucial. Researchers, clinicians, and companies need to understand who is affected and how they are affected to develop treatments successfully. By voluntarily sharing information with the Cavernous Malformation Registry, you can help ensure that clinical trials are designed properly, that the natural history of the disease is well-documented, and that you are always aware of research participation opportunities.

The Cavernous Malformation Registry welcomes those diagnosed, either clinically or genetically, with CCM. Registration is easy; you can choose what information you want to share through surveys and your medical records. 

Privacy

The Cavernous Malformation Registry is built to protect your data. It is compliant with HIPAA and GDPR. You may withdraw from the Registry at any time. Please review our Terms and Conditions, Privacy Policy, and Informed Consent Document.