Clinical spectrum of hereditary hemorrhagic telangiectasia: data from the Comprehensive HHT Outcomes Registry of the US (CHORUS).

Hereditary hemorrhagic telangiectasia affects 1 in 5000 individuals and causes high rates of bleeding, anemia, and serious organ complications in the US.

• Why it matters: Limited comprehensive data on HHT's manifestations and complications hinder early diagnosis and effective management, risking preventable morbidity and mortality.
• What they did: The CHORUS registry enrolled 600 confirmed HHT patients across 15 US centers, collecting detailed data on disease presentation, complications, and treatment outcomes.
• The result: Findings reveal most patients develop symptoms early but are diagnosed decades later, with high incidences of bleeding, anemia, thrombotic events, and neurologic and cardiopulmonary complications, emphasizing the need for earlier detection and intervention.