The International Cavernous Angioma Patient Registry

Research Study of Patient Experiences with Cavernous Malformation/Cavernous Angioma

Research Study of Patient Experiences with Cavernous Malformation/Cavernous Angioma

A research team at University of Regina, in Regina, Saskatchewan, Canada, led by psychologist Bridget Klest, PhD, is recruiting adults with a confirmed diagnosis of cavernous malformation for a study looking at patient experiences. Research participants in the study will be asked to complete a survey online, which will take about one hour. They will be asked to answer questions about many different aspects of their lives, including questions that are personal in nature (physical and mental health, experiences with the medical system and medical providers, ability/disability in a variety of domains, history of stressful/traumatic experiences, and aspects of the social environment like social support and work). $5 Canadian dollars (approximately equal to $5 US dollars) will be donated to Angioma Alliance for each eligible person who participates in the study. This project has been approved on ethical grounds by the University of Regina Research Ethics Board.

To participate in the study, click on this link:


Research Studies

Research Study of Patient Experiences with Cavernous Malformation/Cavernous Angioma


Permeability MRI in Cerebral Cavernous Malformations type 1 in New Mexico: Effects of Statins


University of New Mexico Genetics of Disease Severity Study

To use medical history, magnetic resonance imaging, and DNA analysis to determine the factors that influence Cavernous Angioma (Cerebral Cavernous Malformation) disease severity and variability.



Scottish Audit of Intracranial Vascular Malformations (SAIVMs)

The purpose of the Scottish Audit of Intracranial Vascular Malformations (SAIVMs) is to monitor the quality of care, treatment, and outcomes for adults with vascular malformations of the brain, in order to improve the care and services we provide. SAIVMs does this by trying to find every adult resident in Scotland, who is newly diagnosed with one of the malformations above, and enrolling them in a confidential audit. SAIVMs aims to include every adult in order to get a truly representative picture of what happens to people with your condition in Scotland.



University of New Mexico Skin Lesion Study

Researchers at the New Mexico Dermatology Department are currently recruiting subjects for a study on Cerebral Cavernous Malformations (CCM) and the patients who carry the “Common Hispanic” genetic mutation for this disease.  For this study researchers are looking for individuals who are genetically proven to carry the Common Hispanic mutation for CCM and who also have blood vessel malformations in their skin.


Alliance News

**NEW** Visit the Angioma Alliance Community Hub for more information and news updates and community features including: 


The Angioma Alliance Forum

This is a forum for discussions about cavernous angiomas, also called cavernous malformations or cerebral cavernous malformations. Visit the Angioma Alliance Forum to discuss the illness, treatment and more, and to interact with others affected by the condition.

The Angioma Alliance Blog

Angioma Alliance runs a blog, providing news and information about cavernous angioma, including information about the latest research and events. Visit the Angioma Alliance Blog.

The Angioma Alliance Twitter Feed

Follow Angioma Alliance on Twitter, where the latest news and information are posted.

Completed Studies

Duke University Genetic Study – Cavernous Angioma and Ashkenazi Jewish Ancestry

Researchers at Duke University are researching as specific genetic mutation that has been identified in multiple unrelated individuals with Ashkenazi Jewish ancestry.  The objective of this study is to determine the function of this mutation at a molecular level.