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Donate Cavernous Angioma Tissue to the Angioma Alliance DNA/Tissue Bank

Why is a DNA/Tissue Bank Needed?

No one knows why some cavernous angiomas hemorrhage and others do not. No one knows how to stop cavernous angiomas from hemorrhaging in the first place. Researchers are using DNA extracted from blood samples, surgically removed cavernous angioma tissue, and medical and family histories to help answer these questions. They are trying to determine if there are differences between cavernous angiomas, or between the people who have them, that can explain cavernous angioma behavior.

By collecting these materials and distributing them to the research community, the Angioma Alliance DNA/Tissue Bank will advance and shorten the search for a non-invasive treatment for cerebral cavernous angiomas, perhaps by years.

About the Angioma Alliance DNA/Tissue Bank

Our DNA/Tissue bank was created in 2006. It is housed under contract at PreventionGenetics in Marshfield WI, and our work with patients is overseen by Quorum, an independent ethical review board. We supply tissue to researchers around the world, and it is often the case that tissue from a single surgery can be divided and used by multiple labs, allowing us to make the best use of this precious resource. We screen research projects requesting tissue to make sure their requests are appropriate and will advance the field. 

Now Recruiting

We are recruiting individuals who live in North America with a history of familial cavernous angiomas to participate in the DNA/Tissue Bank and Patient Registry. You and your children with cavernous angiomas are encouraged to enroll if you are willing to request records and participate in the interviews.

We need your help if:

  • You live in the United States or Canada
  • You have one of the hereditary forms of the illnesses: CCM1, CCM2, or CCM3. We are especially in need of tissue from individuals with a CCM3 mutation.
  • You or your child's diagnosis of cavernous angioma has been confirmed by MRI, by genetic testing, or by pathology findings after surgery.
  • You or your affected child have had surgery to remove a cavernous angioma from your brain, spine, or skin or you have an upcoming surgery.
  • You or your affected child is willing to donate a blood and cheek cell sample.
  • You are willing to sign releases requesting pathology slides, medical records, and imaging, and participate in completing a questionnaire or interview.
  • You are willing to donate your or your child’s cavernous angioma tissue if surgery is scheduled in the future.
  • You are willing to remain in contact with Angioma Alliance for a minimum of 5 years.
  • We are particularly seeking those who had surgery at St. Joseph's Hospital in Phoenix, AZ since 2005 or who have a surgery planned at that facility.

If You Participate

Angioma Alliance DNA/Tissue Bank personnel will contact you to discuss the tissue bank and answer your questions. You will be asked to sign a consent form for your or your child’s participation as well as several release forms for medical records, MRIs, and tissue (usually pathology slides) if you or your child have had a past surgery. We will conduct an interview or ask you to complete an online questionnaire about your family history, activities, and other aspects of your life.

A blood donation kit will be sent in the mail for you to take to your doctor, clinic, or blood draw center to have your or your child’s blood drawn. The kit is then mailed to a private lab where the sample is processed. If your surgery was/is at the Barrow Neurological Institute, you will skip this step.

If surgery is scheduled, the Angioma Alliance DNA/Tissue Bank will work with you, the surgeon, and the hospital to coordinate cavernous angioma tissue donation. You will need to let your surgeon know that you would like to donate your or your child's cavernous angioma to the Angioma Alliance DNA/Tissue Bank.

The Angioma Alliance DNA/Tissue Bank will follow up with you on a yearly basis to update your medical information.

Genetic Testing

If you or your child has not already had genetic testing, we will test your DNA sample for a possible CCM1, CCM2, or CCM3 mutation or CCM2 exon 2-10 deletion. If additional causative genes are identified for the illness, we will also test for mutations on these. Because the testing is done for research rather than diagnostic purposes, we can not inform you of the specific results of the testing, but we will let you know if a mutation or deletion is found. This will enable you to obtain follow-up confirmatory clinical diagnostic testing through our free genetic testing program or through your doctor if you prefer. This will mean substantial cost savings to you.

Privacy and Safeguards

Names are removed from any samples or information that goes to researchers; only Angioma Alliance DNA/Tissue Bank staff will have access to your identifying information. Your anonymous samples will be available only to researchers whose projects have been approved by the Angioma Alliance DNA/Tissue Bank Scientific Advisory Committee. You can revoke your consent at any time and your samples and data will be recalled and destroyed.

Enroll Online

To begin the enrollment process, please complete the form below:

This page was updated on 12.27.18

First Name of person completing this form:
Last Name:
Email Address:
Daytime Phone:
Cell Phone:
Street Address:
City:
State:
Zip:
   
Please check all that apply:
I would like to enroll myself in the DNA/Tissue Bank and Patient Registry
I would like to enroll another affected family member in the DNA/Tissue Bank and Patient Registry
 
If you are enrolling someone other than yourself, please tell us their:
Name:
Relationship to You:
 
Have any of the persons being enrolled:
been scheduled for or are anticipating a cavernous angioma surgery within the next few months?
had a past surgery to remove a cavernous angioma
been found to have more than one cavernous angioma
had genetic testing
been found to have a cavernous malformation on or under skin.