The Alliance to Cure Cavernous Malformation has established a Biobank and matching clinical database for cerebral cavernous malformations (CCM, cavernous malformation, cavernoma). Our biorepository is governed by an external IRB to ensure proper protection for our patient-participants. This repository was developed to provide a shared resource to drive research for a better understanding of, and development of a cure for, cavernous malformation.
Participant Cohort
We recruit individuals with a history of cavernous malformation (cerebral cavernous malformations, cavernoma), including both familial and sporadic forms of the illness. For tissue sample collection, participation is limited to those who have a planned CCM surgery and those with a history of surgery. Peripheral blood, saliva, and urine samples are frequently collected from patients at Alliance events. The Alliance makes no representation that the sample population is not demographically biased.
Privacy and Patient Safeguards
This study was first approved on 5/22/2008, is updated and approved annually by NorthStar IRB, and conforms to HIPAA standards for protecting patient privacy. Samples and de-identified information are only available to researchers whose projects have been approved by the Alliance to Cure Cavernous Malformation. Participants may revoke their consent at any time, and their samples and data will be recalled and destroyed.
Collection Procedures & Genetic Testing
The Biobank currently accepts blood, saliva, or urine samples in addition to surgical specimens of lesion tissue. Collected blood and saliva samples are processed to extract DNA, RNA, or plasma by our Biobank facility and stored at -80ºC. Most, but not all, of our participants will have had documented genetic testing.
Available Materials
- Demographic information
- Clinical information, including MRI imaging
- Biological samples- DNA, plasma, surgical specimens (limited access at this time)
We also can create and distribute custom surveys through the registry or recruit patients to submit samples for a specific study.
Please note that all materials, including clinical information or surveys, require submission of a formal request.
Material Request
Instructions on how to request samples and information from the CCM Biobank may be found here. To request samples, all researchers must complete two documents:
- Biological Sample Request Form (with associated documentation)
- Material Transfer Agreement
Completed requests should be emailed to hblei@alliancetocure.org.
Updated 5.11.26
