Vein of Galen malformations (VOGMs) are one of the most severe brain vascular problems in children VOGM happens in arteries, veins, and blood vessels do not form correctly early on in development. Despite treatment, children may face issues like heart problems, fluid in the brain, seizures, and brain damage. These may be life-threatening. We still do not fully understand what causes VOGM, but it is widely thought to be related to genetics.

To understand the genetic basis of VOGM, we have created VOGM Genetics Research Consortium (VOGM-GRC), a widespread network of the world’s leading experts, including surgeons and specialists in fields related to VOGM and its causes. We will collect genetic data from patients and families to understand genetic factors that may cause VOGM. In addition, at select centers, we will perform a test directly at the site of damage. This approach will help us understand what genetic factors contribute to VOGM. Learning the genetic basis of VOGM may expand our knowledge of blood vessels in the brain and related diseases. It could aid predictions and decisions in treatment.  Also, it could give a foundation for the use of known drugs and/or new treatment for VOGM and similar conditions.

If you or someone you know has VOGM, we’d like to get a small sample of your DNA. We will mail cheek swab kits/instructions and a consent form to your home with a paid return-shipping label. It takes less than two minutes to complete!

 Sponsor: The Aneurysm and AVM Foundation, Joe Niekro Foundation, AANS/CNS Section on Cerebrovascular Neurosurgery (Robert J. Dempsey, MD Award), Kaul Pediatric Research Institute at Children’s of Alabama, VOGM Support Network, University of Alabama Department of Neurosurgery, Balt Cerebrovascular, Medtronic

Are you seeking other sites to participate?: Yes

Are you seeking patients/families to participate?: Yes

Contact information: Andrew T. Hale, MD, PhD (Co-PI,, Jesse Jones, MD (Co-PI,, Caroline (Tori) Caudill (Study Coordinator,


Twitter: @VOGM_GRC

Study Flyer: VOGM-GRC-flyer-2-2.pdf

Community Editor: Ingrid Votruba