BREAKING: New research reveals that patients with Hereditary Hemorrhagic Telangiectasia (HHT) face far more severe complications than previously understood. This urgent update was presented by Hanny Al-Samkari, MD, at the 67th American Society of Hematology (ASH) Annual Meeting in Orlando, Florida, highlighting alarming findings from the Comprehensive HHT Outcomes Registry of the United States (CHORUS).
The analysis shows that HHT, the second most common inherited bleeding disorder, leads to substantial and frequent complications, with serious implications for patient health and care. “These very concerning manifestations, particularly intracranial hemorrhage, can affect people while they’re young,” Al-Samkari stated, emphasizing the necessity for immediate recognition and intervention.
Data from the CHORUS registry, which enrolled over 600 patients from November 2023 to April 2025, indicate that 76% of participants experienced moderate-to-severe mucocutaneous bleeding. Notably, 41% reported other significant oral or skin bleeding, with 30% diagnosed with chronic gastrointestinal bleeding.
A staggering 95% of patients developed recurrent spontaneous nosebleeds, with more than half experiencing these issues before age 13. This stark reality is compounded by the fact that most diagnoses occur in mid-to-late adulthood, despite early manifestations, leading to critical delays in treatment and management.
The findings also reveal that 68% of participants were diagnosed with anemia, with 61% requiring intravenous iron and 37% needing blood transfusion. Furthermore, the study highlighted serious complications, including heart failure in 7% of patients and chronic liver disease in 2.8%.
Al-Samkari underscored the urgency of addressing the diagnostic delay, stating, “Most intracranial hemorrhages in HHT occur before age 25, and the average age of diagnosis was about 37 years. This study really raised the stakes of just how problematic that delay is.”
The alarming data calls for increased awareness and improved treatment strategies for HHT, a condition often overlooked in the medical community. Currently, there are no approved therapies, and management has largely focused on treating bleeding episodes rather than addressing the underlying disease.
As experts call for urgent action, the medical community must prioritize the recognition and treatment of HHT to mitigate these severe health risks. The implications of this study could reshape how HHT is approached and managed, potentially saving lives and improving quality of care for those affected.
For more updates on this developing story, stay tuned as we monitor the latest findings and expert recommendations.
