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Interested in Research Participation?

Research is our path to an understanding of cavernous angioma (cavernous malformation, cavernoma) and to better treatments and a cure. We've summarized the current cavernous angioma research participation opportunities on this page, organized by whom each study is seeking to enroll. Click the link inside each summary for more detailed information.

We hope you'll use this list to select one or more studies for yourself. The success of cavernous angioma research depends on our participation!

Am I eligible?

EveryoneI have a cavernous angioma (also known as a cavernous malformation or cavernoma).

Everyone with a cavernous angioma in the brain or spinal cord can join the Angioma Alliance Cavernous Angioma Registry to receive personalized notifications about new research and to add to our understanding of the illness. Registering takes only 20 minutes.


Hemorrhage

I had a symptomatic hemorrhage in a brain cavernous angioma in the last 12 months.

1. Clinical Drug Trial: The Atorvastatin Treatment for Cavernous Angioma Symptomatic Hemorrhage Exploratory Proof of Concept Trial is open to patients in the US and Canada.

2. Observational StudyTrial Readiness in Cavernous Angiomas with Symptomatic Hemorrhage (CASH TR) is open to patients receiving care at one of the following: the Barrow Neurological Institute, Mayo Clinic Rochester, University of New Mexico, University of California San Francisco, and University of Utah.

 

FamilialI have the familial form of the illness, and I know the mutation causing the illness.

1. Natural History Study: The Brain Vascular Malformation Consortium, that includes Angioma Alliance, is investigating the genetic factors that contribute to cavernous angioma disease severity and progression. In this natural history study, clinical, genetic, and environmental information is collected from individuals to look for risk factors affecting CCM disease severity. The study is open to patients anywhere in the US.

2. Microbiome Sample. If you receive care in San Francisco or Albuquerque, you may be eligible to participate in microbiome research.

The microbiome research project is exploring the connection between the gut and the severity of cavernous angioma disease. Patients are being recruited at 2 participating institutions. To obtain more information and enroll, contact your local site:

University of New Mexico - Myranda Robinson at MBRobinson@salud.unm.edu

University of California San Francisco - Liana Kanaaneh at Liana.Kanaaneh@ucsf.edu or Soyun Park at Soyun.Park@ucsf.edu

3. Clinical Drug Trial: If you live in Italy, TREAT_CCM is a clinical drug trial for the medication propranolol that is recruiting adults at multiple sites. 

 If you don't know your mutation, please read about the Angioma Alliance genetic testing program.

 

SurgeryI have had brain or spinal surgery, or I have a surgery scheduled.

Tissue Donation: Angioma Alliance is recruiting individuals who live in North America to participate in our DNA/Tissue Bank. You or your children with cavernous angiomas can participate if you have had recent surgery or are scheduled for surgery. Currently, we are focusing on collecting tissue from those who have a diagnosed genetic mutation (CCM1, CCM2, or CCM3).

 

No SurgeryI am an adult who has not had surgery.

Survey: An Italian researcher is gathering international data on the impact of a cavernous angioma diagnosis on an individual's work life. They are seeking individuals age 18-65 who have not had surgery and who have been employed at some point. The online survey is in Italian. An English version will be available soon. 

 Other Angioma Alliance programs supporting research

Genetic TestingI have the familial form of the illness or have multiple cavernous angiomas, and I don't know my genetic mutation. No one in my family has been tested.

Genetic Testing: Angioma Alliance offers free genetic testing to those in the US and Canada who have multiple cavernous angiomas that can't be explained by a developmental venous anomaly or by a history of radiation. To begin the process of requesting testing, join the Angioma Alliance Cavernous Angioma Registry

 

Common Hispanic MutationI have the Common Hispanic Mutation.

Genealogy: The Baca Family Historical Project is collecting genealogical information from anyone who been diagnosed with the Common Hispanic Mutation so that we can understand who is most at risk. Contact Angioma Alliance staff genealogist Joyce Gonzales at joyce@angioma.org to assist with this project.

 

CCM2 Common Deletion

 I have the CCM2 Exon 2-10 Deletion.

Genealogy: A group of families on Facebook are exploring the genealogy of this very specific change in the CCM2 gene (most of one copy of the gene is missing). We believe families with this change are distantly related with a shared ancestor originally from the American Southeast. We have already found one shared ancestor dating to the early 1800s, but we believe the original ancestor is higher in the family tree. Join the CCM2 Exon 2-10 Deletion Family Facebook group to join their search. 

 

CCM3I have a CCM3 mutation.

Clinical Care/Natural History: Those with a diagnosed mutation or deletion of the CCM3 gene are eligible to receive financial support from Angioma Alliance to visit the CCM3 Clinic at the University of Chicago where there are several research studies recruiting. Contact Connie Lee at clee@angioma.org for more information.

 

 

Updated 1/20/19