Cure HHT, along with HHT Centers of Excellence across North America, are now actively recruiting HHT patients worldwide to participate in the NIH funded study, entitled “Cerebral Hemorrhage Risk in Hereditary Hemorrhagic Telangiectasia (HHT)”.
The goal of this research is to determine what genetic and clinical factors signal high risk for hemorrhage from brain AVMs. HHT patients with a Brain AVM, whether or not its been treated, should contact Leslie Perry by email or 410-357-9932 to determine eligibility. NO TRAVEL required, information gathering only, one hour of your time.
Additionally, Duke University, through a separate BVMC project, is collecting vascular malformations (VMs) associated with HHT to search for somatic mutations, possibly occurring in different genes than the ones already identified. All HHT patients undergoing surgery to remove an AVM from any organ (i.e., liver, lung, brain, skin, etc.), are encouraged to consider donating tissue. You do not need to have a brain AVM to participate in this study project. Contact Leslie Perry for additional information.