The International Cavernous Angioma Patient Registry

Duke University Genetic Study – Cavernous Angioma and Ashkenazi Jewish Ancestry

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. 

 

Background and Objective

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.   

Participation

You are eligible to participate if:

·      You have a family history of Cavernous Angioma and/or multiple lesions

·      You are of Ashkenazi Jewish Ancestry

·      You are willing to donate a blood sample and ship via FedEx on the same day as the blood draw (researcher will pay shipping costs)

Contact Information

Interested persons should contact:

Carol Gallione, Marchuk Lab Research Analyst

Email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Phone: 919-384-3415

 

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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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.

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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...