The International Cavernous Angioma Patient Registry

Click on the slide!

International Cavernous Angioma Patient Registry

Register today to complete your profile and join our growing community of families

Click on the slide!

International Cavernous Angioma Patient Registry

Register today to complete your profile and join our growing community of families

Click on the slide!

International Cavernous Angioma Patient Registry

Register today to complete your profile and join our growing community of families

Click on the slide!

International Cavernous Angioma Patient Registry

Register today to complete your profile and join our growing community of families

Click on the slide!

International Cavernous Angioma Patient Registry

Register today to complete your profile and join our growing community of families

Click on the slide!

International Cavernous Angioma Patient Registry

Register today to complete your profile and join our growing community of families

Click on the slide!

International Cavernous Angioma Patient Registry

Register today to complete your profile and join our growing community of families

Click on the slide!

International Cavernous Angioma Patient Registry

Register today to complete your profile and join our growing community of families

Click on the slide!

International Cavernous Angioma Patient Registry

Register today to complete your profile and join our growing community of families

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Why do we need a Patient Registry?

The Registry was created to link individuals with Cavernous Angioma to members of the research community by collecting information from individuals with Cavernous Angioma; otherwise known as Cerebral Cavernous Malformation (CCM) or Cavernoma.

The goal of the Registry is to facilitate discovery of a non-invasive treatment for Cavernous Angioma. Members of the Registry have the opportunity to assist in the development process as members are provided with the most up-to-date information about research studies and clinical trials seeking participants.

If you are interested in participating in research, Join Now!

By creating a Registry member profile, you are helping to define the diversity of the Cavernous Angioma illness among our worldwide members. Information provided by registered members is used to identify research studies in which individuals are eligible to participate. We will contact you about research studies; your personal information will not be shared without your permission.

Learn More

Learn more about Cavernous Angioma; genetics of the disorder; and support for you and your family members.

 

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To create a new account, please Register Now!

Research Studies

Research Study of Patient Experiences with Cavernous Malformation/Cavernous Angioma

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

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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.

 

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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.

 

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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.

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Alliance News

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

(www.angiomacommunity.org)

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. 

 

Read more...