Participate in Research at CU Anschutz

Primary objective: To assess the persistence rate of patients undergoing pulmonary arteriovenous malformation (PAVM) embolization at multiple hereditary hemorrhagic telangiectasias (HHT) centers of excellence in the United States using standardized reports. Second objective: To assess the impact of technical factors like the type of embolic device and embolization technique (feeding artery vs. venous sac vs. feeding artery and venous sac occlusion) on intra-procedural outcomes like occlusion rate, procedural time, fluoroscopy time, complications and short- and long-term post-procedural outcomes like symptomatic improvement, complications, persistence rate, and prevention of complications at multiple HHT centers of excellence in the United States using standardized reports.

Patients with hereditary hemorrhagic telangiectasias (both pediatric and adults) will be enrolled in this study. A total of 90 patients will be enrolled across 5 sites and over 60 months. The sample size was calculated based on the number of PAVM embolization performed at Johns Hopkins typically in one year.